Healing Whole

Employment Part III. If you want to work but are worried about loosing benefits

2012-02-11T05:04:00.000-08:00

Before I post the last of the three part series on employment, I want to point out the critical importance of using an advocate. This past week, I served in this capacity for a man who was very ill. In the emergency room, they told him they were taking him down for a CT Scan and they would be giving him a contrast dye, “like you had in November.” The man nodded but I promptly asked, “is this with iodine?” I explained that he was highly allergic to iodine. Long story short, we went back and forth, with the tech trying to insist that he be allowed to take the patient for the scan. He finally looked at the medic alert bracelet that listed one of his allergies as being iodine. If I had not been persistent, since the patient was not able to say what he was allergic to, they would most likely have gone ahead with the test. Learn more on this topic at Health Advocate-Who, What, When and Where.

I should also note that even with all of my experience as being an advocate, the hospital personnel that I was dealing with were starting to wear me down. I had been with the patient for six hours at that point and I was tired and hungry. Next week I will write more about being an advocate in difficult situations. In the mean time, you can read more on this topic at How to be a Friend with a Pen.

All to offend people who are on disability want and could work, but the job doesn’t offer the type of benefits they need or at the level their situation requires. There are a number of programs that are being tried in many different states. To know what’s available locally, contact one of the following:

• Independent Living Center for your State 713-520-0232

• Information and referral service helpline for your state: Go to www.211.org to find the helpline for your state, check the front page of your phone book

• A condition specific organization, such as the Diabetes Association, Cancer Society

Social Security can be overwhelming to understand. Many state Independent Living Centers will have this information broken down in an “easy to read” form. One example is New Hampshire’s Granite State Independent Living Center’s “Employment & Options Knowing the Options: Understanding Benefits & Work Incentives”

Other resources

Cornell University’s training manual on Social Security work incentives

Social Security’s “work site”

When it’s all said and done, you may be in the position that you will loose too much if you return to work. Some people work “under the table,” since the benefits they receive are marginal in meeting their needs. If you are able to do it, there are many volunteer opportunities, where you receive a wide array of “perks,” as well as giving you a sense of purpose.

I work with a veteran, who is on full disability. He volunteers in First Aid at our local ski resort on the weekends, which gives him a free lift tickets, passes for friends and family, ski lessons and equipment rental, as well as discounted food at the mountain and at local restaurants. He spends several nights a week volunteering in the local hospital emergency room, which gives him free use of the gym and again significant food discounts. During the weekdays, he has become the “go to guy” for the VFW. As he puts it, “I’m learning so much.” Yes, there are days he is sick and everyone understands but he has become a very important person and an integral part of many different work environments.

If you are looking for volunteer positions, check your local newspaper, town websites, hospitals, condition specific organization etc. However, if there is a place you’ve wanted to work, or try a certain type of job, call and see if they have need of your skills on a volunteer basis.

Other resources
Advocacy for Patients with Chronic Illness, Inc

Job Accommodation Network

Working with Chronic Illness This blog is run by Rosalind Jofee, chronic Illness Career Coach and author of “Women, Work and Autoimmune Disease: Keep Working, Girlfriend.”

Employment: If you have a job

Employment:: Job Hunting

Take a Break: Valentine Haiku and Mandalas

2012-02-08T02:37:00.000-08:00

Following the 17th century Japanese 3 line poetry style; write a Haiku for your Valentines this year. The first line has five syllables, the second seven, and the third five (5 + 5+7). Need some inspiration? Below are some past Valentine Haiku

You: freckled, sleepy_
smiling in the morning sun_
Me: “want some pancakes?”
(Paravion Press)

Precious Valentine
you’re part of my Heart and Soul
’til the end of time
(Cynthia L. Castle)

If writing a Haiku isn’t for you, try coloring a mandala.

Lots of other Valentine’s ideas are in previous take a break posts.

Happy Valentine’s Day!

Working when you have a chronic condition: Part II: Job Hunting

2012-02-04T02:45:00.000-08:00

There are any number of reasons why you may be looking for a job at this juncture. Lots of people are in the same situation because of the recession. However, the same fortitude that helps you thrive from what ever condition you may be living with, can be an aid in landing a job.

The Cancer and Careers section Looking for Work is excellent and so I’d recommend starting with this site In addition to their to the excellent recommendations and suggestions, you may want to consider the following:

• If you’ve tried the 9 to 5 and it never really worked for you, maybe it’s time to rethink exactly what it is you want to do, if you can do it in another setting, such as your home, and start creating an environment that gets you closer to your goal.

• Are their things that you like to do and you might be able to charge for? Could you turn them into a job? A colleague, while undergoing chemotherapy, found that baking was a wonderful stress reducer. She would take her cookies and pies to the nurses and staff when she went for chemotherapy and it wasn’t long before some of them started placing orders. As a result she has launched her own baking business from home. At a Parkinson’s Disease conference, I met a met a number of people who started making various arts and crafts projects as a hobby and eventually launched a second career.

• Volunteer. There are many different types of positions out there, including part time and even full time. There are a number of benefits to doing this: many hire from within so if you are already involved, it gives you an edge over other applicants; it can boost your confidence and demonstrate to a perspective employer the type of value you can bring to a situation; you can find out if this is the type of work you enjoy; it can help fill in “gap periods” on your resume; and it gives you a sense of purpose.

• Consider temporary employment agencies, as well as seasonal employment.

• While it may not be the job you want and it might not be something you’d want to do for a long period of time, ask friends, family, neighbors and other community members if they could use your help in some capacity.

• Consider a Job club. A job club is a group of individuals that meet on a regular basis to support each other through the job hunting process. Efforts are strengthened by belonging to a group, rejection is shared, successes celebrated and the search for a job shortened. If there isn’t a job club in your area, consider starting one.

• Some condition specific groups, e.g. American Cancer Society, offer job coaching, employment opportunities or even job clubs. State Independent Living Centers (713-520-0232) offer assistance this area. Pick up the phone and see what’s available.

• Consider a job coach-someone that can help you find a job.

Resources
Freelancer’s Survival Guide

Sick with Success: Working with illness, or episodic disabilities can be difficult, but it’s not impossible. These articles will help you develop strategies that can help you succeed.

The Chronic Illness Career Coach

Women for Hire

Part I: If You Have a Job Resources

Take a Break: Make Valentine’s Cupcakes

2012-02-01T04:06:00.000-08:00

Before today’s “take a break,” I want to share a piece of an article by Martha Beck, as it is the best summary of why I so passionately believe in the importance of “take a break.”

How to Be Here Now: People started telling me to "be here now" when I was about 20. "Great!" I responded. "How?" Be still, they said. Breathe. Well, fine. I started dutifully practicing meditation, by which I mean I tried to be still while compulsively planning my next billion-watt wow. But one day, while reading up on the latest research in positive psychology, I discovered a two-word instruction that reliably ushered me onto the plains of peace when I couldn't force my brain to just "be still." Here it is: Make something.

You see, creative work causes us to secrete dopamine, a hormone that can make us feel absorbed and fulfilled without feeling manic. This is in sharp contrast to the fight-or-flight mechanism, which is associated with hysteria hormones like adrenaline and cortisol. Research indicates that we're most creative when we're happy and relaxed, and conversely, that we can steer our brains into this state by undertaking a creative task.

To get a dopamine "hit," make something that pushes you to the furthest edge of your ability, where you're not only focused but learning and perfecting skills. Cooking an unfamiliar dish will do the trick, as will perfecting a new clogging routine. At first, depending on how addicted to mania you happen to be, the excitement-grubbing part of your brain won't want to stop obsessing about over-the-top experiences. It will cling to its fantasies about the next huge thrill, its fears of Suicide Tuesday. Keep creating.

As you persist, your brain will eventually yield to the state psychologists call mindfulness. Your emotions will calm, even if you're physically and mentally active. You won't notice happiness when it first appears, because in true presence, the mind's frantic searching stops. In its place arises a fascination with what's occurring here and now. Though this feeling is subtle, it's the opposite of dull. It's infinitely varied and exquisite.

The aftermath of a creative surge, especially one that involves a new skill, is a sense of accomplishment and increased self-efficacy—which psychologists recognize as an important counter to depression. Instead of a Suicide Tuesday crash, you're left with the happy fatigue of someone who is building strength.

Pay attention to this process, and you'll see that the motivation to be here now will gradually grow stronger than the cultural pressure to seek excitement. You'll find yourself increasingly able to tune in to the delights of the present even when you're not actively creating. When this happens, you'll be on your way to genuine happiness: abundant, sustainable delight in the beautiful moments of ordinary life. http://www.oprah.com/spirit/How-to-Find-Lasting-Happiness-Finding-Joy-That-Lasts/2#ixzz1kg8Mufl9

It’s just a few weeks until Valentine’s Day, so today’s and next weeks “Take a Break” will be dedicated to fun Valentine’s activities. For past inspiration, go to

Paper and Scissors (chains, cobweb, German Paper cutting)

Quilling

Valentine’s Paper Basket

So now for some cupcakes that say “I love you,” or maybe “your important enough for me to make you a cupcake.” This really is all about the decorating. Make whatever kind of cupcake batter you like. You can take a box of cake mix and combine with a can of pumpkin for a very yummy cupcake. Yes, you can use a chocolate cake mix with the pumpkin. A cream cheese frosting would taste very delicious with this cupcake.

Decorating ideas:
Edible Clay (Fondant, Marzipan): Fondant is a sugar paste that you roll out and cut into whatever shapes you desire. If you want ease, and aren’t so concerned about taste, go with the store bought variety. If taste is important, make it yourself. The marshmallow variety is very easy to make. Watch the How to Make Marshmallow Fondant. It’s roughly one cup of marshmallows and 1/2 T of water melted in the microwave (30-60 secs), stir till smooth and then stir in powdered sugar. Start with a half-cup and stir until it becomes difficult. Dumb out and knead on a flat surface, adding more powdered sugar until you get smooth dough. Wrap with Saran Wrap or similar product and let rest for a few hours before rolling it out. Kneed again to loosen, adding a little water if it’s too stiff. Roll out using powdered sugar. Don’t use flour.

You can add color by using different color marshmallows or adding color just after it comes out of the microwave or kneed it in before rolling it out.

Marzipan is another option, but it isn’t as easy for rolling out and cutting shapes as fondant is. However, it’s great for making realistic shapes. When it comes to taste, there is no fondant that can compare to marzipan. It will be more expensive than fondant.

Which ever you use, try using tiny cookie cutters to cut out shapes. While you can buy different colored fondant, you can use food colors to paint on designs, or mix it into the white fondant or marzipan to change the color.

If you’ve never worked with fondant, watch the video How to Decorate Cookies for Valentine’s Day.

Chocolate clay is another option. By combining melted chocolate and light corn syrup, you can make edible chocolate play dough. This is great for making things like roses.

Need some inspiration, check out the following fondant inspired decorations
Love Letter Valentines Day Cupcakes

Fondant Valentine’s Day Conversation Heart Treats

Valentine’s Cake

Edible Bling: Yes there is edible glitter, spray and jewels, which you can order on-line or purchase from a cake-decorating store. Wal Mart and Michael’s both carry a variety of cake decorating supplies so take a look there. However, check the candy isle. There are all sorts of gummie things that with a snip here and there, and/or brushed with a bit of sugar, can look pretty realistic. Since sugar is a crystal, put some in a sandwich bag, add a little bit of food coloring and start mixing until you get the right shade. Dragees, are the edible silver balls and your local grocery stores may carry them in the baking isle.

Piping: For years, I used the “decorating pens” that are warmed before using. They are not only easy to use, but you can make wonderful designs, write names etc. However, you can make your own by heating up some white chocolate (I’m big on the microwave, which takes about a minute) and add some food coloring. If it starts to clump up, add a little bit of oil. If you don’t have a piping bag, put the chocolate in a plastic bag, such as a sandwich bag, snip a corner and you have a very inexpensive piping tool. Of course, you can just dip your spoon in the chocolate (dark, white or dyed) and drizzle it back and forth across the cupcake.

Edible Paper: There are a variety of rice papers that come with lovely designs and different colors. While you can sometimes get these in the wedding isle of a good craft store, your best bet is to order on-line. These can be used with punches.

Because Super Bowl Sunday is just a few days away, what about beer cupcakes? A very ardent blogger has come up with Blue Moon and Corona Cupcakes.

Whatever you decide, you have just about two weeks to make some very special Valentine’s cupcakes for neighbors, friends and family. Have fun!

Working when you have a chronic condition: Part I If You Have a Job

2012-01-28T04:01:00.000-08:00

In these economic times, jobs are an issue for just about everybody. People are being laid off, hours reduced or, more is expected for less pay. Work is not only important because of the financial need to support yourself and family, but it also provides a social connection, which is important for well being. For many, it defines how they view themselves and what their purpose might be.

Add to this a new diagnosis or a long standing one, and it raises all sorts of issues. To help address the very large issue of chronic disease and employment, the next several weeks will address various aspects of this topic. This post focuses on things you can do if you have a job that you want to keep.

While most employers allow some time off with pay for sick days, such as flu, it can very from company to company when dealing with longer term health issues. There are two laws which can help workers in this situation: You can take off up to 12 weeks each year without pay under The Family and Medical Leave Act for medical or family emergencies. The Americans With Disabilities Act requires employers to make reasonable adjustments for disabled workers, often in the form of additional time off.

Consider the following:

• Take care of yourself: The handout “Care of the Whole Person,”
provides the basics to help you heal and enhancing your well being. Following these guidelines can help you be in the best shape possible to perform your job.

• Understand your condition and its treatment: Knowing what you might be dealing with now and in the immediate future will help you gage what it is you need as far as accommodations. Talk to your medical provider about your job. Many condition specific organizations, e.g. the American Cancer Society, have handouts and information on working. See resource section below.

• Know your company’s policies and practices: Most companies have an employee handbook. Read it. Make sure you understand what the company provides and allows versus what you think you might need. Talk to the human resources department if something isn’t clear. Some companies now offer “catastrophic leave banks,” which allows employees to donate unused vacation and sick time so those who have a catastrophic need can take leave without loosing income.

• Talking to your employer/co-worker: If you are having issues that impact your job and don’t tell your employer what’s going on, they can’t help you. In fact, they may jump to the wrong conclusion about frequent absences or what may appear to be odd behavior at the office, such as frequent trips to the bathroom. Prepare for your conversation. Write down some ideas about ways they might be able to adjust your schedule or make other accommodations. Practice your approach with a trusted friend and when the time comes, keep information to a minimum. They don’t need to know your life story and the more “extra” information you give, the more frustrating it becomes for them. You also do not want them feeling sorry for you.

Keep communication open between yourself, employer and colleagues. Not everyone needs to know all the particulars of your situation, but they need to know enough to be supportive when you need it. Some people have a hard time discussing their situation because they might be ashamed and/or angry about their condition. Recognize that these feelings can express themselves in ways that are not positive for a work environment.

Ultimately, you want to “normalize” the situation as much as possible. If people have questions about your condition, you want them to know it’s okay to talk to you. However, you don’t want to be defined by your diagnosis.

By being prepared for your discussion with your supervisor/human resources dept. you send a positive message that you are on top of the situation and have good problem solving skills. That’s a definite check in the “win” column.

Co-workers can be very helpful in covering times when you may not be able to be at work. Some may be in a position to donate unused leave. Offer to reciprocate.

• Ask for help: If you provide realistic ways your employer can help you continue to be a valued member of their work force, changes are good they will try to implement them. Better parking, accessibility to workplace, adaptable equipment and realistic changes to work environment can be managed. When working with your employer to develop job accommodations, be specific about what needs to happen and identify realistic and time specific benchmarks for implementation.

• Seek alternatives: If it’s too taxing for you to show up in an office everyday, maybe it would be possible to telecommute several days a week. Job sharing, reducing to part time or even changing positions might be a better option for you. However, more and more companies offer a telecommute option.

Resources
Cancer and Careers: Excellent website with lots of information whether you have cancer or another chronic condition

Cancer and Careers Blog

Work Life Spirit: Inspiring and thriving in the workplace and the world with chronic illness.

Working with Chronic Illness

“The Freelancer’s Survival Guide” When are you too sick to work

Working with Chronic Kidney Disease

Take a Break: Share Something that Inspires you

2012-01-25T02:41:00.000-08:00

Hopefully, something in the last month has made you feel inspired. It could have been something you saw on TV, an article in the paper or something a friend happened to mention. Whatever it is, find more information about it and share this with a friend or family member. Explain what inspired you and how this impacted your thinking.

Several days ago, I was driving and listened to a story about Jose Antonio Abreu, who founded El Sistema. I was so inspired I sent the following note to by colleague and friend Kathy (she wrote the amazing piece for the post Living as if we might die tomorrow: Does it work?)

" You’ve got to watch this orchestra.

These are high school students that learn to play music through a social services program, El Sistema, started in the 1970's. Gustavo Dudamel, the conductor, was one of the kids that learned to play music through this program and went on to be the conductor of this orchestra at 18. Today he is the conductor of the LA Philharmonic.

The founder of El Sistema was given the TED prize in 2009 and his wish was to take 50 gifted musicians, who were interested in social issues and to start El Sistema programs all over the world. These programs now exist in a number of US cities. Watch him on kids transformed by music. He has so much to say it’s incredible.

In learning more about this program, it came home to me how important our art and health initiative is. But first a little about El Sistema. In 1975, Venezuelan economist and musician Jose Antonio Abreu founded Social Action for Music. He believed that if you gave children an instrument and taught them music they would be less likely to take up a gun. Today, Venezuela has over 60 children’s orchestras, almost 200 youth orchestras, 30 professional adult orchestras and dozens of choruses. Almost 300,000 kids are in the music program and 90% of them live below the poverty level. Basically, the country has been transformed by music. You can read more at http://elsistemausa.org/el-sistema/venezuela/

We know how art and music transforms one and can help people heal. We know the difference it’s made in the people we work with. So how do we bring the El Sistema concept to health?"

This morning, I lay in bed thinking how much better it would be to go to the doctor’s if there was a place to make something or listen to someone play music instead of the TV they have blasting away. And for all the “drop in” centers that shelters, food pantries, and condition specific organizations run, what if they were places where you could make, learn and do something? Would we heal quicker? Would we stay healthier? I think we would.

Dating and Finding Love When Living with a Chronic Disease

2012-01-21T03:36:00.000-08:00

No matter your age, dating and finding a relationship isn’t easy. Add to this a chronic condition and it compounds the problem even further. However, just because you have diabetes, fibromyalgia, survived cancer or have something else doesn’t mean you don’t want love in your life or that you wont find it.

Working with women with HIV/AIDS in rural America, where many were single but wanting a relationship, offered some good insights about the dating and relationship process when living with a major illness. Revealing your HIV status, particularly during the early years of the AIDS epidemic was a fearful experience, not only because of the rejection, but also the concern that they might tell others. At a time when people lost jobs and housing because of their HIV status, there were many issues to be dealt with when disclosing to a date. However, many of the women I worked with did go on to develop healthy relationships. Some are married, some have had a series of partners, friends, lovers etc. Below are some of the things I learned about dating from these women:

• The most important thing to keep in mind is that you are not your diagnosis. Yes, it is part of your life, but it’s just that “part” and not “all” of it. You have much to offer others, so your health issues are just one part of who you are.

• Don’t settle for someone because “they’ll have me.” You can up in a very unhealthy and/or abusive relationship by believing it’s better to be with somebody then to be alone.

• There are people that look for partners with health issues so they can be in a relationship where they “can take care of you.” I could do a post just on this type of individual. The important point is that you don’t need anyone feeling sorry for you because of your diagnosis. Relationships work best if they are on equal footing. Each of us comes with our strengths and our issues.

• In terms of finding the date, doing things you enjoy that involve other people, such as hiking, film series, book club, food or wine tasting etc., is a good way to meet someone who shares similar interests. Attending condition specific events, such as a boat trip fundraiser or support groups, can be another way to meet someone. That noted, many of the people that I know that are recently coupled, regardless of age, sexual orientation or diagnosis, have met through on-line dating. According to Consumer Rankings.com, the number one site for 2012 is Match.com. Read “The 6 Best Dating Sites of 2012” for comparison of these types of sites. You do have the option of including your diagnosis as part of the “information about me” section. In fact, E-Harmony has a specific section Dating and Chronic Illness?

Some people think it’s easier if they date and form a relationship with someone that has the same issues. That may or may not be true for you. You can always check the local chapter of your condition specific organization to learn about social events, dating service etc. Below are links to a variety of dating and social networking websites, many of which are free, for those living with various types of conditions:

Prescription 4 Love: A dating and friendship service geared toward people with special health conditions and diseases. Includes more than 30 chronic conditions.

Disabled Dating Through D.A.W.N (Differently Abled Winners Network): More than an internet dating service, it is a true introduction or matchmaking service that uses an extensive questionnaire and a personal or telephone interview with our sincere qualified Director to help each client recognize their own realistic parameters in achieving success with DAWN. This service was designed primarily for people with disabilities, but welcomes those without, as long as they are receptive to meeting someone who just happens to have a disability. D.A..W.N. is not restricted to any one type of disability, but accepts all physically and mentally challenged individuals This is not a free service.

Disabled Dating Club: On-line since 1997, this is a free site.

Enable Love: An online service for men and women with various disabilities and life challenges to meet online in a secure and fun way. Free

No Longer Lonely: Online social community for adults with mental illness.

Cancer Match: Cancer Survivor Dating and Social Network

Poz Match: HIV+ owned social community. It's for everyone regardless of sexual orientation, race, religion, and gender.

Whispers4u: A social disabled dating website for Differently Abled women and men to find love, friendship and happiness in a safe online dating environment. Free

• Whether you find a date on-line, through a friend or some other means, follow Match.com’s Safety Tips.

• Depending on your condition, where to go on a date can be an issue. However, following Match.com’s Safety Tips recommendations are good to keep in mind:
- meet in public
- tell a friend
- stay sober
- drive yourself to and from the date
- don’t leave personal items unattended
- don’t go to their house or yours on a first date.

• When to tell someone your diagnosis is very tricky. One woman had the biohazard sign and HIV tattooed near her pelvis. She said that if in the heat of the moment she forgot to mention her HIV status, there would be no confusion on that score.

Explain your situation on a “need to know” basis. Unless you met them in a support group, or an on-line dating service where you have either revealed your diagnosis or it’s a condition specific site, you may wait a few dates. However, if you are about to be sexual, or this looks like it has the potential to be a relationship, then let them know. The more you keep it a secret, for fear of being rejected, the more likely it is to blow up in your face.

Check out Dating Dilemmas: 8 Tips for Telling Your Partner a Health Secret

Several people I knew with AIDS referred to revealing their status as their “jerk barometer.” If he/she never called again, they were probably not someone that would have worked out anyway. Don’t let that dissuade you from accepting other dates.

More Resources on Dating
Dating & Chronic Illness: Is it possible to be in a relationship when you are chronically ill?

Dating with Fibromyalgia

Before You Start Dating (Inflammatory Bowel Disease)

Sexuality and Chronic Disease I

Sexuality and Chronic Disease II

Take a Break: Celebrate National Oatmeal Month

2012-01-18T04:15:00.000-08:00

You can’t make this stuff up. January is National Oatmeal Month as well as Hot Tea Month. It’s the perfect excuse to make fabulous oatmeal cookies, sit by the fire and sip a cup of tea while munching fresh baked cookies.

Since gluten free food is a requirement at my house-my husband is allergic to wheat and one of my kids has Celica’s-I’m on good terms with gluten free oatmeal. Yes, you will need to purchase the gluten free variety for those who are most particularly sensitive. I make a chocolate chip oatmeal cookie that many have asked for the recipe, so I’m including it below. In addition, I’m including links to other oatmeal treats.

Margo’s Gluten Free Chocolate Chip Cookies
I make this in my food processor since it does such a good job of mixing the nuts and oatmeal.

Cream together: a cup of butter and scant 1 1/2 cup of raw sugar

Add: Two eggs and a t of gluten free vanilla

Add: Two cups of gluten free oats, nuts (almonds, walnuts and pecans) in the amounts you like, plus 1 t each of salt and baking powder

Add: Dark chocolate chips. If you add these to the food processor, they will be finally chopped up, providing a bit of chocolate in every bite. You can use a lot less chips that way. However, my youngest likes the whole chip so I’ll add some to the food processor and hit pulse and then stir some in after I remove the bowl from the food processor.

Drop by T onto cookie sheet lined with parchment paper. Bake about 10 minutes at 365.

Some other oatmeal recipes to try:

No Bake Energy Bites

Oatmeal Raisin Cookies from Smitten Kitchen

Baked Oatmeal

And if you don’t like the taste of oatmeal there are other things you can do with it.

Oatmeal Clay

12 Things You’ve Never Thought to Do with Oatmeal: Who knew that you can put it in your refrigerator to neutralize odors.

Controlling Out of Pocket Medical Expenses

2012-01-14T03:22:00.000-08:00

Recently, I spoke with a friend who asked me to write a post about medical costs. On three separate occasions my friend believed she and her husband were inappropriately charged for medical visits. Her husband had a procedure, which he did not need and in fact was contraindicated for his condition, to the tune of $1,000. She went for a gynecological exam, was asked about menopausal symptoms, for which the doctor wrote a prescription, and was billed $300 for two separate visits. Yes, the insurance company told her, two different things were done so they could bill twice for one office visit, even thought it was a 15 minute appointment. Finally, she had a simple procedure, nitric oxide to remove a actinic keratosis, which lasted no more than 5 minutes and again a high bill.

In all three instances, the doctor never explained what the charges were going to be and the visits were along the lines of “are you having hot flashes? I’d be happy to write a prescription for you.” “Looks like these keratosis need to be burned off.” Needless to say, she was shocked when the bills arrived. Her comment was “next time, before they do anything, I’m going to find out what it’s going to cost.”

With her comments in mind, below are things you can do to reduce out of pocket expenses and avoid being over charged.

• If you have health insurance, understand your policy. What does it cover? What are the deductibles? Is prior authorization required? Since this can be very confusing, there are free websites like Simplee, which links to your health insurance and creates a personal-finance-made-easy tool. This allows the user to track their deductibles and overall health insurance. I haven’t tried this tool, so if you have, please post about your experience.

• Let your provider know right up front that you have a limited amount of money for medical care and do need to know prices beforehand. Many providers don’t know the prices, but that is starting to change as more consumers are requesting this information.

• If your doctor recommends testing ask specific questions: what information will be obtained from the test; what are the costs; will the results of the test impact treatment; if you can’t afford it, can you wait until you can or can the provider help to arrange a reduced fee. The same types of questions can be asked about medical procedures and even prescriptions-is this absolutely necessary; what happens if I opt not to do it; are their free or reduced fee options.

• If you find that your provider’s answers do not justify the expense, you have the right to say “no.”

• If you do need the test, procedure etc. check pricing using on-line tools. If you need a prescription, ask for samples and check out Drug Savings Tool.

• Check your bill. Go through your bills with a fine tooth comb. Studies indicate that medical bills, particularly hospital bills, are not accurate. Read Do you Check Your Medical Bill for more information and by all means, when you find something, call and haggle for what you feel is an appropriate price. I know plenty of medical providers that do this all the time with their own bills.

• An excellent resource for learning new ways to help reduce out of pocket expenses is the Out of Pocket Blog. This website was developed to educate consumers about true health care prices. Also, check out No Job, No Insurance, No Care: What are my options?

Take a Break: Pamper your skin

2012-01-11T03:37:00.000-08:00

The cold and dry weather, alternating with some snow, sleet and yuck, turns skin into a dry flaky mess. It’s easy to end up with chapped lips, and cracked heels. While I live in the land where “bag balm” is considered a staple for your nightstand, there are a variety of ways to pamper your skin and avoid having it look like rawhide come spring. If you have a regiment that works for you, take some extra time today to make sure you do it. If you are looking for a change, consider some of these ideas:

• Sugar scrubs: I discovered these one spring after planting. Made my skin feel terrific. While you can purchase these ready made, you can make your own by combing 1 cup of brown sugar with 1/2 cup of olive oil. You can add a little ground ginger, vanilla bean or an essential oil. Mix into a paste and then rub over your body, paying particular attention to your heels and elbows. Wouldn’t recommend this for the face though as it will be too abrasive. You can store the remainder in a jar. However, oils do go rancid, so use the remainder sooner than later.

• Foot soaks: If you have a foot tub great, but if not, fill a dish pan with warm water, add some Epsom salts and soak away. You can add essential oils if you like. Now that your feet are warm and soaked, use a pumice stone to get rid of the nasty dead skin. Next add a good lotion-yes, I do use bag balm when my heels are really cracked-and put on a pair of socks. Ah, now is the time to curl up on the couch with a good book, take a nap, or listen to some relaxing music or sounds.

• Eat Well: A recent study from the Institute for Experimental Dermatology at the University of Witten-Herdecke, found that people who ate five servings a day of fruits and vegetables had improved skin. Some of the fruits and vegetables that are particularly beneficial include: pomegranates, blueberries, strawberries, carrots, artichokes, bananas, broccoli, tomatoes, garlic, kiwi, avocado, and kale. Fish, particularly salmon, is also helpful.

• Drink water

• Get a massage

Medical Hoaxes: Check for the Facts

2012-01-06T23:55:00.000-08:00

This past week, I read an article that included information supposedly written by the Dali Lama. A quick look at Snopes www.snopes.com verified my suspension. It made me think how nice it would be if there was a one stop shop to check out the various medically related hoaxes and urban legends. However, these come in such a variety it’s not so easy to figure out what’s what. True there is a medical section of Snopes and that is a good place to check for general medically related stories that you receive by e-mail. However, this is generally not the place to learn about specific treatments for a condition.

Whether it’s an in person or on line support groups, we’ve all heard “I just read an article…” It’s important that people affected by chronic and/or life threatening illnesses recognize that they are the favorite prey of the scam artist and snake oil salesmen. If the article, e-mail or story sounds “too good to be true,” it probably is.

So the next time you hear of some amazing medical discovery, cure or treatment, before you forward it via e-mail or support group, or actually try it, consider the following:

• Know the source of the information. If there is money to be gained be cautious. If the information is from a website, who operates and sponsors the site; how current is the information. If the site doesn’t provide detailed information about who writes the site, how its funded and whose behind it, that’s a red flag. If they say they are an MD or a medical professional, run a check on them to verify they are who they say they are.

• Be aware of the tell tale signs of a hoax. According to Hoax Busters, these signs include:
- a sense of urgency (they will use terms like urgent, warning, important, virus alert or this is not a joke
- the request to share information by forwarding to everyone in your e-mail address book
- the text may contain some form of corroboration, such as “my friends works for such and such medical center and he or she says.”
- There are lots of arrows showing that the e-mail has been forwarded frequently.

• Contact the national Association, or local chapter, associated with your condition, e.g. American Cancer Society

• For complementary or Alternative Therapies (CAM), such as yoga, vitamins, supplements, acupuncture etc.) check out:
- Mayo Clinic: Complementary and Alternative medicine: Evaluate Treatment Claims. Has a good Q & A section.
- National Center for Complementary and Alternative Medicine (this is part of the National Institutes of Health)

• Quackwatch: This is an interesting site to check out but use it cautiously. Quackwatch is an international network of people who are concerned about health-related frauds, myths, fads, fallacies, and misconduct. Its primary focus is on quackery-related information that is difficult or impossible to get elsewhere. Founded by Dr. Stephen Barrett in 1969 as the Lehigh Valley Committee Against Health Fraud (Allentown, Pennsylvania), it was incorporated in 1970. In 1997, it assumed its current name and began developing a worldwide network of volunteers and expert advisors. Quackwatch is closely affiliated with the National Council Against Health Fraud, where one of the board members is Dr. Stephen Barrett founder of Quackwatch.

• If you are in a support group (on-line or in-person) and someone brings up a new treatment or research study, ask questions. A lot of people in the early years of the AIDS epidemic tried all sorts of “home remedies,” from the use of photo chemicals to tons of vitamins and garlic. Some people became very ill from these “home grown” experiments. However, that is not to dismiss the “e-patient” movement, whereby actual clinical trials are being run via websites like Patients Like Me. Learn more about being an e-patient.

• Talk to your medical provider. They are in a good position to discuss how realistic the information sounds, how it might relate to your situation, and can monitor the situation if you should try something new. Since you may have more time to “surf” the web, and attend support groups, some providers rely on their patients to provide them with treatments and alternative therapies that are being explored. They will want to see copies of articles, or links that they can check out. Keep in mind that if you start going to every office visit with a stack of new articles about treatments for your condition, you’re going to frustrate your provider in fairly short order.

One of the most frustrating things about the digital age is how much e-mail is a rumor, hoax or urban legend. If everyone took the time to check out the accuracy of what they are forwarding, instead of clicking the send button, we could reduce this problem significantly.

For more information on this topic, go to Scams, Fraud and Quacks.

Take a Break: Visit a Library (in person or on-line)

2012-01-04T03:32:00.000-08:00

The holiday season can be a break for some and a high stress mess for others so today’s take a break is all about the leisurely pace of the library (that’s of course if you aren’t the librarian that’s going at warp speed to respond to a variety of patrons needs). If you don’t know your local library, today is a good opportunity to check it out, read a magazine in one of their comfy chairs, take out a book, tape or CD and maybe even chat with the librarian about a recommendation for a “good read.” If you don’t know where your local library is, and you live in the United States, check Public Libraries. If you are fortunate to have a Nook, Kindle or one of the many iPod or Pad products, you can “borrow” books to read or listen to. This is usually a free service, but you’ll need to check with your librarian about how to register for this service.

If you are a regular patron you might not think this is much of a break, so another option is check out the Library of Congress on-line You may want to set a timer for yourself as the collection is so vast, you can spend many hours reading, listening to old recordings or watching videos.

Happy New Year!

Dilemma: Your opinion whether it’s been asked for or not

2011-12-31T04:17:00.000-08:00

Think of a good friend, or family member and asks yourself how you would respond if they asked for your opinion on something they just purchased. Chances are you would probably be fairly honest in your reply. Now think of this same person. They have a very serious health crises and they ask you “Do you think I should have treatment?”

Reverse the process and think about the times you’ve asked others for their input? Did you want an honest answer or were you just wanting them to collaborate what you were already thinking or planning to do?

There are multiple things that come into play when we ask for input or our advice is being sought. A lot of the responses come down to the people involved, the situation and the level of honesty in the relationship.

I’ve had reason to belabor these questions because of several recent situations where people are asking friends, family and the occasional provider, about how they should be managing their health care. There is no simple answer when someone asks if they should continue treatment, have surgery, opt for hospice, move to assisted living or enter a clinical trial. These are major life altering choices and so it is important to weigh your answers carefully.

When faced with such a question(s), consider the following:

• For people with chronic and life threatening conditions, the provider will expect the person and/or family to make the choices and decisions about type of care and treatment and when and when not. If a person is dealing with pain, metastases disease, malnutrition, dementia or anything else that may alter their thinking, they may be in a very difficult position to make such choices. These are very challenging situations. If a friend or family member asks your opinion, help facilitate discussion by responding honestly, recognizing that they, more than anyone else, has to live with the consequences of the decision.

• Sometimes people will ask not only for opinions but also make requests of you, which are illegal. It could be a matter of obtaining medical marijuana, which may be illegal in your state. Over the years, I’ve known many people who have said that if they became too ill, senile or are in considerable pain, they want their family to terminate their lives or they will do it themselves. These are definite ethical issues, which need to be weighed on a case-by-case basis. Below are resources that might be helpful:

Resolving an Ethical Dilemma

Top 50 Medical Ethics Blogs

Medical Futility Blog: Has an excellent list of links on medical ethics.

• What weight might your response carry in their eyes? In other words, do they consider you a valued and trusted person whose advice they have sought before?

• What about the situation where you see a good friend/family member who is in real trouble with their health care? They may not be asking for your advice, but you also don’t want to stand by and watch them damage themselves. When or do you intervene? This can be an incredibly difficult situation. Step one is to let them know of your concern. If they respond negatively, your options are limited. Again, what is your relationship to the person? If there are people closer to them, such as a spouse, partner, parent or adult child, talk to them. They may share similar concerns and together you may be able to come up with strategies to intervene. If you are the caregiver, and have permission from the patient to speak with the provider, talk to them. Even if you don’t have permission to talk with the provider, you can contact them and relay your concerns, basically having a one-way conversation. If you truly believe that this person is a danger to self or others, you can call adult protective services and report the situation.

Take a Break: Solve the Mystery

2011-12-28T03:30:00.000-08:00

Minute mysteries come in all shapes and sizes. You can download the Sleuth App for your iPhone or try out some of the links below:

Mystery Digest: This site contains two minutes mysteries to solve and a whole lot more.

5 Minute Mystery

One Minute Mysteries: These are really easy

5 Minute Mysteries Old Time Radio Shows

If you like medical mysteries, once a month (or so) the Well blog of the New York Times provides case information and you can figure out the diagnosis.

Go-Go Eating /Exercise and Stress

2011-12-24T02:23:00.000-08:00

This post is dedicated to Mark, who specifically requested information for those over 55 who need to exercise and how to eat healthy when they are constantly on the go.

To the first request, the Feb. 10, 2011 post covers exercise. But as to eating, well that’s a bit more complex.

Since it’s Christmas Eve, and this blog’s focus is on chronic conditions, a quick reminder that in this time of excess food and drink, what you put in your body can impact how you handle medications, how you feel and how you heal. For example, eating cranberries can increase the effectiveness of coumadin (Warfarin). Dark chocolate contains theobromine, which is also a diuretic, and can decrease the effect of sleep medication or increase blood pressure. Mixing alcohol with medications is a bad idea as it can block the effect of some medications, increase gastrointestinal bleeding and so forth.

There is no time like the present to think about how you use food to celebrate events, holidays etc. Think about options other than food, e.g. in honor of your new promotion, great test results, birth of a grandchild you go to see a play instead of having a big dinner.

Since chronic conditions very significantly, I’m the last person to tell you what foods to eat or even when, as medication schedules and interactions with certain foods are real issues for many. Clearly, it is important to check with your medical provider, as well as a dietician about what’s right for you. Also, organizations focusing on your condition will include diet programs and suggestions. However, most important is paying attention to your body.

Another resource to consider is the Diet & Nutrition section of the University of Minnesota’s “Taking Charge of Your Health.” Note that as research is published on nutrition, exercise and other topics relating to chronic conditions, I post them to the Healing Whole Facebook page.

I digress. Mark’s specific request was how to eat healthy when you have little time to shop, are in the car a large part of the day, and since we live in a rural area, when shopping options are limited. So to that request, here are some very doable suggestions, even for someone who is on the go as much as Mark:

• Plan meals in advance and shop accordingly. Not much on meal planning? Check out Meal Planning 101.

• Use your local CSA (community supported agriculture): A farmer offers a certain number of "shares" to the public. Typically the share consists of a box of vegetables, but other farm products may be included. Interested consumers purchase a share (aka a "membership" or a "subscription") and in return receive a box (bag, basket) of seasonal produce each week throughout the farming season. If you don’t know where your local CSA might be, check Local Harvest. There are almost two million farms in the USA, so there is bound to be one close to you. Have a last minute Christmas gift to purchase? Why not a share or a partial share at your local CSA.

• Shop Locally: Farmers’ Markets abound. Check your local newspaper for dates, time and location or use one of the apps-Locavore or Ample Harvest. While this is a great way to get locally grown produce and meats, as well as support your local farmer, it’s a good time to socialize with others in your community.

• Prepare snacks in advance. If you know you’ll be traveling quite a bit in the coming week, or you have a variety of medical appointments, prepare five days of healthy snacks on Sunday night. You can do this while watching the football game. Such items may include: almonds and cranberries (a portion size is generally twenty almonds and a 1/4 cup of cranberries-check label for serving information). Other ideas for healthy snacking:

Snacks: How they fit into your weight loss plan from Mayo Clinic

The Best Healthy Snacks in Your Supermarket: 24 snack ideas to satisfy your cravings from WebMD

The Healthy Snacks Blog

• Cook once, eat two or more times: When you do have the time to cook, prepare enough for the freezer. That way on days you are very busy, it’s a simple matter of heating up a meal.

• Use a crock-pot: Slow and low is the way to go! I use mine at least two or more times a week. Put it on before you leave for work and when you return enjoy a wonderful home cooked meal. So if you aren’t familiar with this magical device (you can pick them up for cheap at your local thrift store), check out the Food Networks Eleven Tips for Slow Cooker Meals.

Crock-pots aren’t just for making stews. I make beans, soups, sauces, jelly and much more in mine. You can easily adapt favorite recipes, but if you want something new, check out the following:

Best Crockpot Recipes

Crock Pot Recipes from Food.com

Easy Vegetarian Slow Cooker Recipes

• Buy in season and freeze: Frozen fruits and vegetables keep very well. On the subject of freezing, if you live alone, there are now many single serving choices for frozen vegetables.

• Restaurants are an option. You can eat quite healthy even at fast food restaurants. Use the USDA’s Healthy Restaurant Eating guide to help you make choices that are healthy. And yes there is an App for that. Try HealthyDiningFinder.com Weight Watchers Mobile is also another option. Of course there is the ever popular Eat This, Not That.

While Mark and I discussed various strategies for eating and exercising, one of our colleagues mentioned that he found the most helpful thing for him, more than exercise and eating, was managing his stress. I realize that this is one topic that I discuss frequently (each Wednesday is “take a break” day) but have never dealt with in-depth. A post for January for sure. In the mean time, check out the following links, which do address holiday stress.

Holiday Songs Can be good Reminders for People With Chronic Conditions

Holidays: Over Do the Laughter and Under Do the Stress

A Merry Christmas to all and a special greeting to Mark and those working in FAR today and tomorrow.

Take a Break: Celebrate the “Other” Holidays

2011-12-21T02:12:00.000-08:00

December is awash with holidays, but this week marks several that are often over looked in the mad dash of Christmas. In fact, the real “reason for the season” is Winter Solstice, which takes place on Dec. 22. Marking the shortest day in the Northern Hemisphere, my husband refers to this as the first day of summer. Given that it’s close to the single digits where I live, as I write this, that’s a very welcome idea.

A historical review shows that Christmas grew out of Solstice traditions. In 46 BC, Julius Caesar, in his Julian calendar, established Dec. 25 as winter solstice for Europe. The Emperor Aurelian selected Dec. 25 as Sol Invictus or the birthday of the “Invincible Sun” in the third century as part of the Roman Winter Solstice celebrations, Saturnalia. Prior to Sol Invictus, Dec. 25 was the birthday of the Persian hero and sun god Mithra. In 273, the Christian Church adopted this same day to represent the birth of Christ. Interestingly, January 6, known as Epiphany or feast of the Magi (three kings), was originally an Egyptian date for the winter Solstice.

Some ideas for celebrating winter solstice can be found at the following links:

Celebrating Winter Solstice

Dream Catcher Native Flutes Ron Allen-6 Winter Solstice

Newgrange Winter Solstice in Ireland

Christmas, Yule and the Winter Solstice from Mysterious Britain & Ireland

Since this festival is all about the sun, make some sun ornaments to hang around your house or tree. You can make them out of clay; paper Mache or whatever strikes your fancy. Sun catchers are easy to make. Use a small ornament and hang it in your window so that it reflects the sun. It can be a simple piece of glass, such as a pendant from an old chandelier, or something more elaborate made of beads.

Dec. 20 is the first night of Chanukah. This eight-day festival of light begins on the eve of the 25th of the Jewish month Kislev. It commemorates the rededication of the Holy Temple in Jerusalem at the time of the Maccabean Revolt of the 2nd century BX. Learn more about this celebration.

December 23 is Festivus. Recently, I watched a snippet of the Seinfeld episode featuring George’s father Frank:

Frank Costanza: "Many Christmases ago, I went to buy a doll for my son. I reached for the last one they had, but so did another man. As I rained blows upon him, I realized there had to be another way."

Cosmo Kramer: "What happened to the doll?"

Frank Costanza: "It was destroyed. But out of that a new holiday was born: a Festivus for the rest of us!

It made me laugh out loud. So while this post is about celebrating lesser-honored December holidays, it’s also about doing something that makes you laugh and celebrate.

Not familiar with Festivus? "The Strike" episode of Seinfeld featured George’s Dad explaining how to celebrate the holiday season without commercialism and religious aspects. As celebrated by the Castanza family, Festivus includes such practices as the “Airing of Grievances” during the Festivus meal, whereby each person tells everyone else all the ways they have disappointed him or her over the past year. There is also the Festivus pole”-an aluminum pole unadorned, and “Feats of Strength.”

To learn more about Festivus and how it’s celebrated, start by watching clips of the Seinfeld Festivus episode, then check out some of the links below:

Festivus Song

Practical tools for Festivus: Feats of Strength Challenge Card and Airing of Grievances Worksheet

Festivus Web

Messin’ with Meds

2011-12-16T23:26:00.000-08:00

The holidays are a time when people forget to take meds or call in a refill because their normal routine is interrupted by parties, guests, travel etc. However, I’ve had a very recent reminder of what happens when you don’t take meds as prescribed.

The situation was not unusual. In order to save money, the person was taking their medication once every three days and not daily as prescribed. Thinking the medication wasn’t working, the medical provider ordered a lot more tests, which ultimately resulted in higher medical costs. However, the patient paid the highest price, as symptoms were not controlled effectively and became progressively worse over a six-month period.

People “mess” with their medications by doing the following:

• Not taking them because they: forget, have side effects, can afford them, feel better, or don’t have symptoms

• Taking them for a reason other than there intended purpose.

• Sharing them with a friend or family member.

Some simple solutions for taking medications as prescribed:
• Use a “friend with a pen” at medical appointments. Have them write down what the provider says about the medication, how to take it, possible side effects. The research shows that patients have a much better visit when they have someone with them. Read more about the importance of a health advocate.

• Ask the provider about the cost of the medication being prescribed. Be clear if you don’t think you can afford it. Ask for samples, as well as generic alternatives. The latter are often a lower priced option. Ask if the company has some type of program to help those who have difficulties paying for it. Check out the following sites for additional resources:
- Prescription Assistance Program
- Free Medicine Program
- Needy Meds
- Rx Assist
Tricare Senior Pharmacy For uniformed services beneficiaries 65 years of age or older.

• Understand the how and when to take the medication-e.g.when is the best time to take it; should it be taken on an empty stomach or with food; are there certain medications, supplements or food that shouldn’t be taken while on the medication; what happens if you miss a dose.

• Some drugs aren’t easy to take, such as interferon for hepatitis. Pharmaceutical companies will often set up programs to help patients with adherence. Inquire if such a program is available for a medication that is being prescribed.

• Ask for a clear explanation of why the drug is being prescribed and what the consequences are if you don’t take it.

• Discuss possible side effects.

• Talk to the pharmacist about any questions you might have. They can often provide helpful tips about taking the meds, such as whether a tablet can be broken in half; where to store it (medication cabinets in bathrooms are often not a good location because of humidity)

• Use the same pharmacy if possible and take advantage of automatic refill prescription programs.

• Use reminder devices such as a pill caddy, which organizes medications in a variety of ways-daily, weekly and by time of day. There are a lot of varieties out there so shop around for one that you think will work for you.

For more information on this topic, go to Medications Made Easier

Take a Break: Create and Be Inspired by Fibonacci

2011-12-14T03:15:00.000-08:00

Named for the mathematician Leonardo of Pisa, who was known as Fibonacci, his number sequences is o, 1, 1, 2, 3, 5, 8, 13, 21, 34, 55 …Each subsequent number is the sum of the previous two. What is amazing about this sequence is that it occurs throughout nature, art, music, literature (it’s the code broken by Sophie in The DaVinci Code) and of course mathematics.

If you count the number of petals in flowers, nearly all will be a number in the Fibonacci sequence-an iris has 3, buttercup 5, delphinium 8, and ragwort 13. For more examples, watch Fibonacci Numbers-Numbers in Nature.

The ratio between successive Fibonacci numbers approximates the “golden mean,” also known as the Golden Ratio, Divine Proportion or Phi 1.618. This ratio has been used for centuries. The first use may have been by the Egyptians when they designed the pyramid.

I’m particularly interested in the Fibonacci sequence as I’m trying to make jewelry based on it. So today’s “take a break” is having fun with Fibonacci. Enjoy some of the following:

Fibonacci Puzzles

Unfold the Golden Rectangle

Creating the Fibonacci Musical Scale for Piano

Fibonacci’s Chinese Calendar

Living as if we might die tomorrow: Does it work?

2011-12-10T02:38:00.000-08:00

Attending Catholic School, the nuns would say things like, “When you go to bed tonight, pretend it’s your coffin,” or “How would you change your life if you new you’d die tomorrow?” The right answer was to change nothing as you were living the perfect Catholic life.

Last week a friend Facebooked an article, “Top 5 Regrets of The Dying,” whose author had worked for many years in palliative care. Having witnessed many people closing out their lives, I would agree with this author’s selection: live a life true to myself and not others expectations; not work so hard; the courage to express feelings; staying in touch with friends; let your self be happier.

Since my colleague and friend Kathy, she’s the other half of Chronic Conditions Information Network, and I have often discussed aspects of this, I forwarded the article to her with the following note, Saw this article today and it certainly reflects what I've seen. So the question in my mind is can we really live like we're about to die in the next few weeks for years on end? While I try to practice happiness and recognize the critical need of friends and community, and to really nurture those that I love, there are some very practical issues-like making a living-that aren't necessarily there for those that are about to exit. Puzzling thoughts.

Her reply was spot on, and probably the best response I’ve read to the adage “Live as if you die tomorrow.” You ask a very good question, and the answer is no, we can't. The last few weeks or months of one's life allows one to have those kinds of reflections and take the liberty of acting on them, since there is literally no time left to put it off. I think that all the messages in that article are valid and worthy of acting on in small ways, but you can't do it full time.

I speak from experience. Because of all the deaths and losses in my family, we were raised to live every day to its fullest, give to and love the other as if it were his or her last day on earth, and to be grateful simply to be alive. They are good concepts, noble messages, and engender a kind of fullness of experience that I appreciate having had.

There is, however, a dark side to it that can be very destructive and hard to lighten. The energy that sustains that approach to living is fueled by a strong current of anxiety, fear of loss, and pessimism about the future. There is little room for attending to the relative minutia of getting along in the real world and taking care of one's own needs. In the face of impending death, career planning and goal setting for one's own future seems trite. In fact, everything that is not life or death seems trite. It is a huge burden to assume.

Kathy’s last paragraph was an “I get it” moment. It helped me understand some of my own negative thoughts and actions. Instead of dwelling on the fact that we all come with an expiration date, and I could be gone tomorrow, a healthier approach is living a mindful life where one is present for it.

It is interesting that in the past few months I have though about life expectancy from the vantage point that I’m not financially prepared for old age. That’s been an eye opener for me to realize that I do need to be a lot more mindful of how I earn a living.

Thanks Kathy for your insightful words. Even though Kathy is a nurse by training, she is an amazing artist. Check out her website Fraglets and scroll through her “ Where in the World are Fraglets” section as her art hangs in some pretty amazing places, like MOMA in San Francisco, the Louvre in Paris and anywhere there is a scrap of metal.

Take a Break: Create Green and Memorable Gifts

2011-12-07T01:38:00.000-08:00

This past Saturday, I blogged about balancing giving and receiving this holiday season. Following with the “giving” theme, today’s “take a break” is about making gifts that have meaning, are affordable and help the planet.

Green Cleaning Products: While no one needs the harsh chemicals used in household cleaning, it’s even more true for those living with a chronic condition. Study after study has shown how household cleaners can make people sick, cause asthma flare ups etc.

A simple, but very welcome gift, are cleaning products that you make yourself. Pick up some squirt bottles from the Dollar Store, or recycle ones you may already have. Make simple labels for each bottle, that include directions for use as well as the recipe for remaking when empty.

The basics are generally things you have in your house- baking soda, white vinegar, lemon juice, salt, washing soda, liquid soap. You can make a simple all-purpose cleaner by combining 1/2 cup vinegar, 1/4 cup baking soda and 1/2 gallon water (8 cups). Mix, pour into containers and use. You can add a few drops of essential oils.

Want to get rid of the bleach? Use 2 cups of water, 3 Tablespoons of liquid soap and 20-30 drops of tea tree oil. You can make your own Oxi Clean solution. It’s just hydrogen peroxide (1 cup) and washing soda (2 tablespoons-note this is not the same as baking soda). Pour the hydrogen peroxide into the spray bottle, add the washing soda. Let it sit for a day. Give it a gentle shake before each use and use as you would oxi clean.

Check out the following links for recipes:

• Green Cleaning from Pink Pistachio
• Non Toxic Home Cleaning from Eartheasy
• The Easiest Green Cleaning Recipes You Can Make at Home

The Dollar Store is a good place to also pick up cleaning clothes. Microfiber ones can reduce your cleaning time.

Give Experiences They’ll Enjoy and Remember: Research shows that experiences bring about more happiness than things. Below are some ideas to consider:
• Tickets to a sporting, concert, play or some other event.

• A weekend get a way, a day at a spa, a massage

• Membership to museums, public TV or radio, community garden , local historical society etc.

• Fees for a special class or workshops, such as car mechanics for dummies, beginning piano, yoga class etc. All the better if you have a special skill that you are willing to share.

• If you have a special skill that you are willing to share via a workshop, pick the date, make up invitations and send. While it’s nice to try and coordinate everyone’s schedule, it’s going to be a lot easier if you pick the date and time and limit the size of your “class” to what you can realistically manage.

Food: Known the person’s taste and special needs (e.g. salt restricted, gluten free etc.) and make or purchase wholesome food accordingly. If you can afford a “fruit of the month” program great, but you can also achieve the same thing by doing something like making soup the first Monday of the first three months of the new year. As much as people like sweets, there is enough of it around to rot everyone’s teeth.

Go Junking: We use to call going to second hand stores, yard sales and the occasional antique dealer, “going junking.” We would paw through a lot of items before we found “treasurers. “Pick up items that will either amuse your friends and family or is part of a collection they may have.

Natural gifts: I happen to love stones, so I enjoy it when friends return from vacations and bring me items they found on the beach. Consequently, I have a lovely collection of beach stones. Consider what's in your natural environment that may appeal to a friend.

Balancing Giving and Receiving This Holiday Season

2011-12-03T03:42:00.000-08:00

We’ve all been raised with the idea it is better to give then to receive and where this is most exemplified is during the Holidays. “What do you mean you aren’t going to go to your parents (who live 300 miles away) for Christmas? How can you be so selfish?” “It’s the perfect present for Jack (substitute any name). You can always put it on plastic.”

I’ve done a variety of posts on this topic. However, at this time of year, we all need the reminder to try and achieve some sort of balance in this season of excess.

The fact is, when you are dealing with a chronic disease, you don’t always have the energy to travel or party or have the money to pay for expensive presents. At the same time, you may have to heavily depend on others to help you with the basics of daily living, such as getting to doctor’s appointments, grocery shopping, child care etc. If you are a caregiver, you may be so depleted from giving that the idea of “holiday giving” is more than you can stand

We need to keep a balance of giving and receiving. It can’t go all one way. We only need to look outside our window to get the picture. At this time of year, when we have just celebrated the bounty of harvest, the ground now lays quiet. Living in snow country, it is if the land is tucked in for a long much needed sleep. It is it’s time for the earth to recharge so that in the spring it can once again bloom and provide.

Consider the following:

• Watch for warning signs that you are out of balance. These can include: feelings of being very anxious and tense (clenched jaws); a flare in symptoms; complaining; feeling listless and not wanting to do anything.

• Identify yourself: Are you a constant giver? (No rationalizations about why you give too much). If so, be willing to receive. Are you a constant taker? If so, start giving of yourself. For tips on balancing giving and receiving, read January’s post on this topic.

• Read previous holiday posts:
Holiday Songs Can be good Reminders for People With Chronic Conditions

Holidays: Over Do the Laughter and Under Do the Stress

• Do what you can realistically do. The idea of sacrificing yourself for others is not a good idea.

• Use this time to let people know how special they are to you with meaningful gifts that do not deplete your income. Check out the following posts for ideas and suggestions:

Balancing Giving and Receiving: Includes ideas on giving when you are relying on others for help and assistance

Holiday Gifts for People with chronic disease

Unique Gifts for Hospital Patients

The Best and Worst Holiday Gifts for People with Cancer

• Keep the joy alive by reminding yourself daily of what you have to be grateful for and brings you joy. They can be as simple as watching snowfall, the smell of baking cookies or a fresh cut pine tree or the smile of appreciation from someone you helped.

• Take a Break. Every Wednesday is “take a break day.” If you don’t care for this particular weeks “break,” try the archive section, which includes hundreds of ideas.

Take A Break: Make Count Downs to Christmas

2011-11-30T02:52:00.000-08:00

I grew up with the tradition of an Advent wreath. The Sunday before Advent began, my mother would manufacture a wreath using four candleholders with greens wrapped around them. Three of the candles were purple and one was rose colored. Each candle represented one of the four weeks before Christmas, with the rose candle being lit the third Sunday of Advent or Gaudete Sunday. Purple, being the color of royalty, represents Christ as the “Prince of Peace,” while the rose for Gaudete (rejoice) Sunday combines the mixture of the Advent purple and the Christmas White.

Each evening after dinner, my brother, sister and I would fight for the chance to light the candle(s) of the Advent wreath. Once that was decided, we’d light the candle(s) and sing “O Come O Come Emanuel.” With each passing Sunday a new candle would be lit so that by the last Sunday before Christmas, all four candles were ablaze. On Christmas Eve, the candles were lit for the last time and allowed to burn down.

My children enjoyed Advent Calendars, most of which came from Germany. If they were the kind that didn’t have chocolate behind each day, we’d close all the doors and store them flat so they could be reopened the next year.

After we were grown, my mother still had an Advent wreath, but surrounded it with the various Advent calendars we would send her. She loved her ritual of marking the days until Christmas

So if you want to mark the days until Christmas, using a calendar or a wreath, below are a variety of ways you can do that.

• Use a small Christmas tree, or several branches stuck in a vase and add an ornament for each day. You make small snowflakes and add per day.

• Printable Advent Calendar Definitely for the crafty folks.

• Christmas Treasury Advent Calendar. You download the front and back, tape together and have a calendar that’s just as pretty as anything you would purchase.

• Online Fun Advent Calendar: Each day contains a different stencil that you can print Use the free stencils for decorating windows, cakes, friezes in schools and play schools or just for fun at home on a rainy day. Size them all to small squares and make your own advent calendar in felt by adding one item every day.

• Opt for a digital Calendar. Below are links to various ones.
- Busted Halo: This calendar brings its sense of surprise by showing you the whole calendar, but not letting you open each day and find out what’s behind the picture until that day comes along. This year’s calendar has weekly themes — hope, love, joy, and peace — that will help you connect to the significance of the season of Advent. Each day, that day’s link in the Advent calendar will start working, leading to a special Advent-themed Daily Jolt, with an opportunity for reflection, a microChallenge and a chance to enter our contest. Some of the reflections come from unlikely sources, and the challenges help you to take an action, usually a small one, based on the reflection.

- Advent Calendar 2011-Countdown to Christmas

- Christmas Advent Calendar

- Other Christian Advent Calendars

- A German Advent Calendar with Daily Christmas Facts (in both English and German) h

- Calendar video (a different video each day)

• Bookmark Count Down to Christmas, and you can see exactly how many days, hours, minutes and seconds before Christmas arrives. This site also offers a variety of activities, such as reading Santa’s blog.

• Advent wreaths can be done without spending any money-you don’t have to have purple and rose colored candles. Some new ways to consider:
- Use four votive candles, in holders, placed in a bowl filled with cranberries.

- Take a wire clothes hanger and stretch into a circle. Undo the wire by the hook end and string Christmas Tree balls to create a stunning wreath. Place four votives in the center. Cut off the hook, or place a large bow over it. Of course, if you’d prefer, you could skip the candles and have a nice wreath for the door.

- Using a bread loaf pan, place four tapered candles in holders and fill with greens, cranberries, nuts, rocks or something that appeals to you.

Relaying information: Be mindful of the how and when

2011-11-26T06:10:00.000-08:00

Recently, we had a situation in my community where an 18 year old was killed in a car accident. The fast means of today’s communication-cell phone, text, e-mail and twitter-presented new challenges in distributing factual information in a timely manner.

We wanted to tell our son, since this was his friend, versus getting a text message or seeing it on Facebook. Since the accident took place during school hours, we did have the option of having him taken from class. Ultimately, we sent him a text (since he can’t use his cell phone at school) and told him to call home.

Since we were able to talk to him, we made sure he wasn’t driving before we relayed the information and provided him with facts, versus rumors that were swirling around. Ideally, we would have preferred to tell him face to face, but given the circumstances, particularly the rapid way information is now spread in this digital age, particularly among teens, this was the best we could do.

Several years ago, a friend called to learn about test results while driving. The information was not good. Fortunately, the person was not alone in the car, and the passenger had the presence of mine to tell them to pull over.

In the past week, we learned that a friend is very ill. Again, the e-mails, texts etc. are flying. Factual information is needed and a tweet isn’t necessarily the best way to distribute it.

Below are some ways to consider relaying information in our digital age.

• When relaying difficult information, try to do it in person if possible. If you have to call, start by asking where and what the person is doing. If they are driving, ask them to pull over or call when they have reached their destination. Be mindful that newer cars are equipped with speakerphones. The information you may be relaying may be broadcast to everyone in the car. Check to see who is with them.

• If the person is not available when you call, leave a message asking them to call you as soon as possible. When they do call, ask them where they are.

• When making calls about a family or friend’s situation, or your test results, do not do it when you are driving, operating equipment or doing something, which if distracted, could cause problems.

• Take advantage of the various free websites like Cares Pages, CaringBridge and my favorite Lotsa Helping Hands as a way to keep family and close friends aware of the situation. It’s easier to set up a Cares Page or CaringBridge initially. The down side is that once a person has the password to the site, they can forward that to anyone they choose. Lotsa Helping Hands is a bit more involved, since it requires a site manager to approve those who wish to be members.

• Check out the previous post on Communications

Take a Break: Learn Wampanoag

2011-11-23T07:52:00.000-08:00

Many of us were taught that the first Thanksgiving occurred in 1621, when the Wampanoag (wahm-pah-no-ahg) "eastern people" or "people of the dawn" and white settlers-think Mayflower 1620- celebrated a three day harvest festival together. This was not a “Thanksgiving, “ as Pilgrims viewed such celebrations as days of worship, in which they prayed to God in thanks for a specific event. A good harvest, victory in battle during the Revolutionary war, and sufficient rain were all viewed as reasons for a Thanksgiving.

The Wampanoag had lived in southeastern New England for over 12,000 years. Within 50 years of the 1621 harvest feast, the Indians were driven from their land and many died from disease brought by the Europeans. Today, there are less than 5,000 of their descendants.

Along with the destruction of their culture, the Wampanoag were banned from speaking their language. However, thanks to Jessie “little doe” Baird, the Wopanaak language is once being spoken.

The Wôpanâak Language Reclamation Project began in 1993 under the direction of Jessie 'little doe' Baird who earned a Masters Degree in Algonquian Linguistics from MIT in 2000. Through the joint collaborative efforts of members of The Assonet Band of Wampanoag, The Mashpee Wampanoag Tribe, the Wampanoag Tribe of Aquinnah and the Herring Pond Barnd of Wampanoag, the project aims to return fluency to the Wampanoag Nation as a principal means of expression.

Today’s “take a break” is to learn some simple words in Wopanaak. Check out the following links:

Wôpanâak Language Reclamation Project

We Still Live Here Details Effort to Restore Wampanoag Language (PBS Documentary) Excerpt

Happy Thanksgiving!

Setting Your Own course When Living with a Chronic Condition

2011-11-19T04:27:00.000-08:00

Recently, I watched a video Video of Elizabeth Gilbert, author of “Eat, Pray, Love” speaking at the tenth anniversary celebration of “O” magazine. She talked about how women are in a unique position as they have few role models, as the choices and opportunities that we have today were never available to our female ancestors. As she noted, her dust bowl era grandmother didn’t wake in the middle of the night obsessing about whether she should learn to speak French.

People with chronic conditions are in a very similar situation. Diseases, such as cancer and AIDS, which even just a few years ago were terminal diagnosis, are now conditions people can live with for many years. Fact is, people are outliving their diagnosis and dying from something totally different.

The “baby boomer” generation has now entered the “golden years,” as they turn 65 this year. They too are facing unique challenges and are lacking for role models since many did not have parents that lived to see retirement. Still others are sandwiched between very elderly parents, children of various ages and even grandchildren they are raising. To top it off, many of the boomer generation are already living with one or more chronic conditions.

The big question is how do we live? Who is doing it right? If I try x, y or z, because that’s what Fred is doing and he’s having great results, and it doesn’t work, does it mean I’m a failure? Am I failure because I have this diagnosis? Do I feel worthless because I’m 70?

While we can look at our career paths, or lack there of, and think about the choices we made, it’s seems a bit different when it comes to health care. Why? Because medicine is suppose to be a science. “This medication works for 90% of the people.” “By the end of five years, only 5% of those with that diagnosis are alive.” And so it goes. The fact is, medicine is far from an exact science. Statistics they give today, have no relevance when a new study comes out a week from now. Or does it?

The bottom line, is that as much as we’d like to think that scientific method is the end all and be all when it comes to health care, living with a chronic conditions, and aging, are just as much a journey as figuring out what you want to be when you grow up. (As if I’ve succeeded in that department.)

As Gilbert noted in her talk, women are pioneers in continuing on. This is very true for those learning to live with chronic conditions. A hundred years ago, 80% or more of the population died from an acute illness and a small minority lived for many years with the condition that would result in their death. Today these numbers are reversed-most of us will live for many years with one or more chronic conditions.

Consequently, the medical community, which is based on an acute care model, is still trying to figure out how to handle this very different situation. Those with chronic conditions can’t afford to wait while it’s being figured out. We need to be in charge of our health care.

For each of us, the journey will be uniquely ours. We will make mistakes. We will take risks and succeed and other times we will fall flat on our face. However, we need to continue on, charting our own course, sharing what we know, and supporting one another in the process.

If you haven’t checked out Healing Whole on Facebook, you’ll find regular postings on a variety of topics, including the latest research. You don’t have to join Facebook to read the posts.

Take a Break: Thanksgiving Center Piece/Seven Wonders of the World

2011-11-16T02:27:00.000-08:00

With Thanksgiving just a little over a week away, give yourself a few days to collect leaves and other out door items to create a unique Thanksgiving centerpiece. So here a few ideas to get you started.

• Leave bouquets: I tried this a few days ago and was amazed how beautiful they turn out. It was a lot easier than I thought it would be.

• Cornucopia (Horn of Plenty): While you can find inexpensive wicker cornucopia baskets, you can also make simple ones.
Bread dough

How to Make a cornucopia (video)

Mini Cornucopia: Instructions on making cornucopia using a Styrofoam cone shape and covering with jute of felt.

Once you have your cornucopia, be it purchased or made, fill with gourds, apples, pears, leaves, colored corn, and of course some wonderful wrapped chocolates.

• Cranberries: There are lots of ways to use cranberries. Pour a bunch in a large clear vase and then fill with flowers or pillar candle. Use a trifle bowl and layer cranberries with other fruits, such as apples, oranges, limes and add some flowers or greens coming out of the top.

• Lentils, split peas: Layer in a clear glass container, dried split peas, lentils, small red beans etc., and stick in a burnt orange pillar candle.

• Easy and Elegant Thanksgiving Centerpieces from Good Housekeeping

So if making a Thanksgiving centerpiece isn’t your idea of a break, check out The Seven Wonders of the Ancient World at the Museum of Unnatural Mystery.

Polypharmacy: Are you taking too many drugs? What can you do?

2011-11-12T03:43:00.000-08:00

Recently I was an advocate for a patient that when asked about medications, named the one prescribed by his doctor, but didn’t mention the variety of vitamins and supplements that are part of his daily regiment. Since they were experiencing some serious side effects from their prescribed meds, I couldn’t help but wonder if some of the supplements, at least one of which I had never even heard of, could be interacting with medications.

People with chronic conditions are often prescribed a number of medications, plus many add vitamins, supplements and over the counter (OTC) drugs. It is not uncommon for people to be taking drugs to counter side effects from another medication. Further, some people want to take all their meds, including vitamins, at the same time. The fact is all this “mixing” can lead to nasty effects (tiredness, confusion, falls, dizziness etc.) and/or needed medications not working.

Food can also interact with medications, both prescribed and OTC. They can combine to make the drug more effective, keep nutrients from being absorbed, or render the medication useless. When you eat and take your medications can also make a difference. Alcohol and meds should never be mixed and drinking something hot should be avoided as it may destroy effectiveness.

You are at risk for polympharmacy if you:
• Take five or more prescribed drugs.
• Take supplements, OTCs, vitamins etc.
• Use more than one pharmacy
• Take meds more than once a day.
• Have a hard time remembering to take medications

To avoid the complications caused by Polypharmacy, consider the following:
• Make sure all your health providers (primary care, specialists etc.) knows all medications you are taking, how you take them and when. This includes prescriptions, vitamins, supplements and OTCs. Write down the name of the medication, supplement, OTC. For each one, write how much you take, when you take it (e.g. with breakfast), and how you take it (with a glass of water). Up date it regularly and provide a copy to all your medical providers. Be sure to include it in your personal health notebook and carry it with you.

• If you are being given a new prescription, ask about possible interactions with your current regiment. Both medical provider and pharmacist can check a drug interaction database. You can also check Drug Digest http://www.drugdigest.org, which provides information on possible interactions for all medications including vitamins and herbs.

• Use only one pharmacy to fill prescriptions.

• Learn your medications by name and what they are for

• Read the directions and labels on all medications (including OTCs) to avoid interactions. Don’t hesitate to ask the pharmacist or your health care provider if you have questions.

• Avoid combination products such as cold formulas. Ask the pharmacist and/or medical provider for other options.

• Take medications as prescribed.

• Consider alternative solutions that do not involve medications. For example, exercise, mindfulness based stress reduction (MBSR) and/or therapy can be effective for treatment of depression and anxiety. The Center for Mindfulness at the University of Massachusetts Medical School has been conducting research for years on MBSR and finds that it can positively and often profoundly affect participants’ ability to reduce medical symptoms and psychological distress. The Stress Reduction Program has benefited people reporting a variety of conditions and concerns including chronic illness or pain, high blood pressure, fibromyalgia, heart disease, asthma, GI distress, skin disorder and many other conditions.

• For more information: University of Chicago Polypharmacy and the Elderly

Free Webinar for Caregivers

2011-11-10T02:11:00.000-08:00

November is National Family Caregivers Month. Lotsa Helping Hands is holding a Webinar for caregivers on Nov. 16, 2 pm EST. Learn the most common challenges, solutions for caregivers and how to create a LHH free community. For more info go to the Lotsa Helping Hands website.

Take a Break: Pumpkin Fun/Left Over Halloween Candy

2011-11-09T02:37:00.000-08:00

Yes, I know that Halloween is over, but pumpkins are so plentiful at this time of year, plus Thanksgiving isn’t that far off. So, today’s “take a break” is all about fun things to do that involve pumpkins, other than carving them. Well actually, the first option does require hollowing out the pumpkin.

Cut off the top and scoop out the pumpkin guts. Think of this as the holder for your Thanksgiving centerpiece. Find a vase or candleholder that will fit inside the pumpkin and place a pillar candle, flowers and/or leaves inside. If you are going to use leaves, you can use some of the techniques described in last year’s post. I’ve recently read a bout a new one where you first iron the leaves between two sheets of wax paper. Let them completely cool and then coat with Mod Podge. Of course you have to peel back the wax paper before painting.

If you do include leaves or flowers with a pillar candle, watch carefully for fire.

Fun things to try

How many words can you make from the word pumpkin? Hint, there are 33 if you count one and two letter words and words in all caps. Check your wordlist.

Carve a Virtual Pumpkin

Color a virtual pumpkin or download pumpkins to color.

Cook with Pumpkin: Try a different dish, other than pumpkin pie or bread, such as
Risotto with Pumpkin, Ginger and Sage.

What to do with left over Halloween Candy
So it maybe a little late, but if you still have Halloween Candy laying around, consider the following:

Operation Gratitude: Sends care packages to troops over seas.

Freeze your candy: Chocolate will keep for up to a year. While you could give it to trick or treaters next year, there are lots of ways you can do with it over the next 12 months, such as
- Decorations for gingerbread houses, cookies and cakes
- Make a Candy wreath
- Use as a topping for ice cream
- Put it in baked goods
- Save it for the Easter Egg Hunt
- Use it as stocking stuffers for Christmas

Center piece for Thanksgiving: For the "kid's table," fill a horn of plenty with the candy. You can also scoop out a small pumpkin, insert a bowl or basket and stuff it with the candy and leaves, so it overflows down the sides. Either way, the kids will love it.

There will always be a top 10 cause of death: Death is part of life

2011-11-05T05:17:00.000-07:00

I have been trying to write a post on the topic of why it’s important to accept death as part of life for some time. In the last three weeks, my very small town has had four deaths, which has propelled me to look at this and once again try to write about it. I dedicate this post to my friend Sophie Snarski, who was 95 and to Spencer Huntley, an 18 year old who died in a car accident just a few days ago.

When my oldest son was in the fifth grade, it became very clear that his teacher was in the process of dying. When I spoke to the principal about preparing the students for this eventuality, I was told to take it to the school board. Three parents, including myself, attended the next school board meeting to discuss this issue and were promptly beaten up by the school superintendent. “We should be talking about life, not death.” “The union protects her right not to have this discussed.” In short, we were told to go away and that the school was not to discuss it. Their version of “don’t ask, don’t tell.” We met with the board in late September and the teacher died on Thanksgiving Day.

While I was furious at the time of the school’s unwillingness to help their students with such a difficult lesson, it was also clear to me that we are continually being sent messages that death is not a subject for polite society. They were pretty much responding out of their own fears and societal norms.

True our life expectancy is much longer than it was 100 years ago, and for many, their first experience with a close death may not come until they are in their 50’s or older when their parents die. As each era has its own issues around death and dying, we have moved into a very unique situation with longer life expectancies, increased medical technology and a shift of death from acute conditions, where people died very rapidly, to chronic disease, where people live for many years with the condition that will result in their death.

It may change from decade to decade, or from country to country, but there will always be a top 10 causes of death. You can find the cure for cancer, but another condition will take its place at number two on the hit parade of mortality. Why? Because we’re programmed to die.

You don’t win friends and influence enemies by writing comments like this, but we’re also not helping people by the constant barrage of articles and materials on how we can avoid a particular condition if we exercise, eat right, take vitamins etc. etc. Researchers, doctors and the media love to talk about “preventable deaths.” A drug, lifestyle changes, or whatever else is couched in terms of preventing death by 10%, 20% etc. Contrary to the numbers, death is never prevented. It is only delayed.

It’s easy to dismiss this as some sort of a semantic issue, or maybe a George Carlin routine that never made it to HBO. However, the continual mentioning of this from drug commercials to the doctor trying to convince a patient to take medication, is creating a subtle messages that death just may be optional, and not just for those in California, as the joke goes. How this plays out can be problematic.

In keeping with the top 10 theme, below are my 10 reasons why we need to accept death as part of life.

• People with terminal, life threatening or chronic conditions are shunned because they represent what we most fear. Friends and families disconnect from them to spare themselves the reality of their own future.

• It seems that the “politically correct” thing to do, when learning of a friend or family member’s terminal illness, is to kept it to your self. We are really into the “don’t ask, don’t tell” approach. People do not know how to respond when someone is very ill, let alone when they die, which results in the person and those closest to them, not getting the support that would be so helpful. The dying have much to teach the living, but we have to be present to learn from them.

• Frequently, families and friends, regardless of the age of the person affected, will say that the individual’s dying could have been prevented if he or she “just took care of themselves,” didn’t smoke, do drugs, have sex, gone to the doctor sooner and so forth and so on. The person that is dying will express concern that they are letting down family and friends by being ill, let alone dying. They too will voice about this being their fault and/or “if I only hadn’t…” Some are embarrassed that their bodies are failing them; they interpret it as a “personal failure.” It doesn’t help people to be dying thinking they are failures.

• Because of our fear of death, the charlatans prey on those fears and rob people of money, valuable resources and time.

• Regimenting ones life by eating certain foods, exercising, taking lots of vitamins etc. in order to live indefinitely, can take up so much time, the joy of living is lost in the process.

• The regimental approach, as noted above, can also eliminate the opportunities to develop a spirituality that can nourish and enrich one’s life, regardless of its length.

• Lack of discussion results in end of life decisions being made for you, which may not be to your liking.

• Massive amounts of resources are being used to extend life, even if it’s just for a day or two. Just how long can the planet sustain such a practice?

• By not acknowledging our impermanence, we neglect to enjoy the moment as we fill our time with striving for “bigger and better.”

• By accepting that we all die, and that we are on temporary loan to one another, maybe we can become a more honest and compassionate society, where we make the time we have together a valued experience.

Take A Break Archives 8/09-10/11

2011-11-02T03:50:00.000-07:00

Today's take a break is all about selecting something you haven't tried from over two years of "take a breaks." Enjoy!

Take a Break Archives August 2009- October 2010

November 2010
10 Soda Can (Aluminum) Art

17 Preserving Leaves

24 Thank in Thanksgiving

December
1 Candles: Decorate them

8 Candles: Make Them

15 Candles: Holders

22 Compassion Meditation

27 Calligraphy

January 2011
5 What to do with Old Calendars

12 Take a Break: Redecorate While You Undecorate

19 Find the Rainbow in Your Clouds Maya Angelou http://healingwhole.blogspot.com/2011/01/take-break-find-rainbow-in-your-clouds.html

26. Paper Quilling

February 2011
2. Valentine’s Day Activities Paper and Scissors (chains, cobweb, German Paper cutting)

9 Eatable Valentines

16 In Six-Words or Less, Tell Your Story

23 Start a journal

March 2011
2 Celebrate Women’s History

9 Spring-Make a Ribbon Wreath

16 St. Patrick’s Day Make St. Brigid’s Cross

23 Spring: Look for Signs of Spring

30 Spring: Make Carrots

April 2011
April 6: Enjoy Water

April 13 Be Amazed

April 20 Jellybean Projects

April 27: Reusing/Recycling Easter Candy

May
May 4: Fascinators

May 11: Stargaze

May 18 Create Mindfulness reminders

May 25 Paper Mobiles

June 2011
1 Recycled Art from Old Magazines

8 Pinatas

15 Staycation

21 Stars

28 4th of July

July 2011
6 Fruit Carving

13 Make Bubbles

20 Stay Cool with a No Rush Day

27 Body Art and Tattoos

August 2011
3 Holiday Day Gifts 2011

10 Make anything a chalk board

17 Dance

24 Draw With Willow

30 T-shirts

September 6, 2011
7 Plastic Bottle Art

14 Palm Reading/Mazes

21 Design a TV Show

28 Draw a Stickman/Enjoy Apples

October 2011
5 Name Skeletons/edible Acorns

12 Samhain (Irish Halloween)

19 Divination Games

26 Tricks and Treats

So Just How Stressed are You? What You can Do About It.

2011-10-29T04:55:00.000-07:00

A new study, published on-line in the Journal of Aging Research, found that men, who consistently experiencing more than two major stress events in a year (spouse dies, divorce, coping with an aging parent) have a higher risk of death then their less stressed peers. Only three things seem to reduce this stress: good health, marriage and the occasional drink. The author of this study concludes, “People are hardy, and they can deal with a few major stress events each year. But our research suggest that long-term, even moderate stress can have lethal effects.”

Stress isn’t always bad. We’re programmed for “fight or flight,” since that’s our body’s way of protecting itself from real or perceived danger. When we are threatened, our nervous systems revs the engine with hormones, such as adrenaline and cortisol. This allows us to flee the tiger or apply the breaks when we’re about to run over the tiger in our car. Stress also comes into play when you give a presentation you aren’t sure about, go to the doctors for lab results, have a job interview or even ask someone out on a date.

At some point, having your body constantly on overload because of stressors starts taking its toll. It’s a bit like trying to run your computer with a number of different programs operating all at once. It will freeze, crash and just stop working. This is how the body responds when it has too much stress. It not only can impact your mood and your ability to remember things, but it can also lead to high blood pressure, heart disease and worse.

So how much stress is too much and how stressed are you? Start by taking the Stress Quiz: How Stressed Are You? This particular quiz looks at how you handle your daily life. Next try the Life Stressor Test Developed by Thomas Holmes and Richard Rahe in 1967, there are a few items that aren’t as accurate today as they were in the 60‘s. However, it is an indicator of what type of events are stressful for people. Between the two, you should have a good idea of what the stressors are in your life, how well you handle them and whether stress could be a contributor in your health and well being.

So once you have a handle on your stressors and how you handle them, what’s the next step?

• Determine what stressors you can change or control and act accordingly. There are many things in our life we have no control over (the weather, life events such as the death of a loved one) When confronted with a stressful situation, ask yourself: is this my problem? If it isn't, walk away. If it is, identify what you can do to address it now before it blows way out of proportion. As the saying goes, “don’t sweat the small stuff “ and don’t spend hours obsessing about would a, could a, should a. Most importantly, accept what you can’t change.

• Take a break. If you are a caregiver, schedule time to get out of the situation for a few hours at least weekly if not daily. Use the Five Minute Kripalu Yoga Break and of course, don’t forget that every Wednesday is “take a break day” at Healing Whole. If you aren’t interested in one week’s activity, check the side bar for the summary posts of archived “take a breaks.” There are now 100s of these, so you should find at least one or two that peek your interest.

• Avoid the stressful situation all together. If going to the annual Thanksgiving party at Aunt Jane’s leaves you with an emotional hang over for the rest of the weekend, make other plans this year.

• Identify the priorities in your life. If it’s not a priority, and it makes you anxious, let it go.

• Change how you view and react to a situation. If you think about it, there are often more than one way to see something. So if you do decide to go to Aunt Jane’s for Thanksgiving, identify who and/or what makes you crazy. Is there another way you can view this situation?

• Stick to the basics of sufficient sleep (more than 8 or less than 6 is not healthy) exercise and a well balanced diet. Certain foods, such as sugar and caffeine can add to your stress.

• Breathe! When you are feeling the most tense, remind yourself to breathe deeply. Shallow breathing reduces the amount of oxygen in your bloodstream, which leads to an increase in muscle tension. Breathe in through your nose and out through your mouth.

• Connect with others. If you find you are spending more and more time alone, reach out to other people. Attend a support group, accept invitations, and/or create invitations so people come to you.

• Talk about it. Talking to a good friend, family member or members of your support group can help you problem solve and reduce stress. Since Aunt Jane’s Thanksgiving party is quickly approaching, talk to your cousins or Aunt Jane about what makes you feel so stressed about these events and look for solutions.

• Laugh. It truly is the best medicine.

• Avoid self medicating with alcohol or other drugs.

• Practice meditation and mindfulness.

More Information
• Healing the Whole Person: Ways to Increase Well Being

• Stress Mastery from Taking Charge of Your Health

Take a Break: Halloween 2011 Tricks or Treats

2011-10-26T04:00:00.000-07:00

So this year, have tricks and treats for your visitors Halloween night. If you live in a house with a lawn, have a volunteer pretend to be a statue (such as a witch or monster) and have them come to life as the children approach. In Vermont, many people make odd looking people using stuffed leaves. Older teens have been known to sit in a chair, looking very much like the “leaf people,” only to come to life when trick or treaters pass them by. Makes for a wonderful scream. Hiding under a pile of leaves, or even laying flat to the ground can create a good scare.

For those in apartments, there may be a number of restrictions on what you can put on your door, but the skies the limit once you open it. There is the classic “hand in bowl,” so when the kids go to select their candy, a hand grabs them. This is done by placing a bowl, with a hole in the bottom large enough to fit a hand through (cheap bowls from the Dollar Store are perfect), on a table. This can be a thick piece of cardboard on two saw horses, which also has a hole that the candy bowl rests on. A person sits under the table, which is covered by a cloth, and grabs people as they come to collect their candy. Watch the video to see how one family set their “hand in bowl” outside with a sign that encourages trick or treaters to “take one.”

If you have the time to rig it up, as the door opens, a spider drops down in front of the kids.

For more ideas, check out Halloween Pranks.

Of course it wouldn’t be Halloween with out some special candies and other goodies. One of the best selection of things to make comes from Our Best Bites. This year they feature a mad scientist potion drink, which is Kool Aid mixed with a little bit of dry ice. Their “easy Halloween Party Food” section has lots of wonderful ideas. Keep in mind that for trick or treating wrapped store bought candy is the best.

Of course if you don’t want to celebrate with food, consider classic cartoons as your treat:

• Donald Duck Trick or Treat (1952 Cartoon)

• Betty Boop 1933 Banned Cartoons Halloween Party

• The Skeleton Dance-Silly Symphonies Walt Disney 1929

No matter how you celebrate it, Halloween has something for everyone. Don’t forget that the “take a breaks” for October have all been related to Halloween, so if this doesn’t inspire you, try one of the other weeks from this year or last.

The Three P’s: Purpose and People

2011-10-22T04:42:00.000-07:00

Last week, I wrote about the “gotta haves, “ the three essentials that help sustain in living well-people, purpose and passion. Last week’s post was on passion and in September I blogged about the Power of Purpose, so this leaves people.

Study after study shows that having friends and a social life are key to healthy living and aging. Who we spend time with impacts how we think and feel about ourselves, and even impacts what we do. With that in mind, these are some ideas to consider about who is or isn’t in your life.

• Do the friend assessment: Take an inventory of the people in your life. Who do you spend the most time with? How do they make you feel? Do you look forward to seeing them? Are you relieved when they are gone? Do they help you make good choices for you? Do they bring you energy or take it from you? In her book, My Stroke of Insight, Dr. Jill Bolte Taylor talks about how to help a stroke patient. She describes the visitor that came bringing hope and encouragement versus the ones that took energy from her. In short, are you surrounding yourself with people that inspire you and are fun to be with?

• Avoid, reduce and eliminate the energy vampires in your life. There are people that always want something from you, get on our last nerve and in general zap ideas, strength and good feelings. It doesn’t matter their relationship to you, they don’t need to be in your orbit if they make you feel lousy.

• Have friends that are passionate: Again, it’s who you hang with that helps you define yourself. If your friends are passionate, it doesn’t have to be the same interests as yours, it increases the chances you’ll develop a passion if you don’t happen to have one.

• Care and invest in people. Whether it’s someone you’ve just met or an old friend you haven’t seen for a while, letting people you care about them and are willing to be there for them helps to retain friendships.

• Seek out new friendships: A very wise therapist told me many years ago that friendships are like a pail of water with a hole in the bottom. People are always leaving our lives because they move, change jobs, die, don’t want to be with you any more etc. etc. Therefore, if we want to keep the pail full, we need to continually be adding new people. So how do you meet people? Consider the following:
- Participate in a support group
- Engage in activities that you like doing-this increases the chances that you’ll meet someone who likes the same things you do.
- Attend parties and accept invitations from friends and families.
- Host a party and tell people to bring friends
- Volunteer, if for no other reason it gets you out of the house and if you are among other people, you have a greater chance of meeting someone.
-Join a church or civic organization (Rotary, Lions Club etc.)
- For more ideas, check out http://www.succeedsocially.com/sociallife

Take a Break: Halloween 2011 Divination Games

2011-10-19T04:01:00.000-07:00

On Halloween, my mother had us do all sorts of funny games, such as walking down the cellar steps backwards, throwing peels of apples over our shoulder, and some odd way of looking into a mirror. As I grew older, I realized these were divination games that she and my father had grown up with.

In high school, we would take the apple from our lunch, and while twisting the stem, we’d say the alphabet. On whatever letter the stem came out, that was the initial of the man you would marry-I went to an all girls school. While this was not a game I learned at home, I’ve since seen variations of it as part of the divination games at Halloween.

Oct. 31 was believed to be the time of year when the veil is thinnest between this world and the next, so the idea that spirits could tell your future was quite popular. Try out some divination games so you’ll be all set for Halloween:

Halloween Divination Games

Victorian Era Halloween Divination Games

Bobbing for Apples: Prophecy and Divination Games Using Apples

Halloween Tarot Card Reading

How to Read Tea Leaves

Steve Jobs on Passion

2011-10-17T02:59:00.000-07:00

Since I wrote about passion this weekend, it was interesting to come across an article on Steve Jobs and the 7 Rules of Success with his first item being, “"People with passion can change the world for the better." Asked about the advice he would offer would-be entrepreneurs, he said, "I'd get a job as a busboy or something until I figured out what I was really passionate about." That's how much it meant to him. Passion is everything.

The Three P’s: Finding Passion

2011-10-15T04:45:00.000-07:00

This is the last fall I will have a school age child at home. While he’ll be in college this time next year, it’s not the same, as nearly all of the colleges he is applying to are a plane ride away. In short, it’s made me think a lot more about life in general, what it means to be getting older and an “empty nester,” and what are the keys to a successful life regardless of age, health status etc.

I’m pretty convinced that the important things in life can be boiled down to a few basic “gotta haves”: people in your life that you love and who love you; purpose; and passion. Hmm three P’s- people, purpose and passion. So how does one cultivate these?

Instead of trying to cram them all into one post, each will be explored over the coming weeks as well as their inter relations. Today’s pick is passion. How does one find a passion if they don’t already have it?

Chances are good that you already have a passion but haven’t called it that. What is it that you think about it or do that absorbs you? That you love? What makes you smile? Talk about? Read and learn about? It doesn’t have to a career or job but it’s nice if it works out that way. It is the thing that you want to do.

I’ve read many an article on making your passion your career. It’s a nice concept, but sometimes what we love doing, such as being a quilter or a lover of 17th century fiction, can be ruined for us by making a job out of it. Besides which, an ideal passion should last a life time.

In her article “Find Your Passion in Three Steps,” Mary DeMuth talks about why we’re afraid to find passion-fear of rejection; the need to do something about it; it may be something that others think is worthless etc. Regardless, knowing your passion and engaging in it have positive consequences. It can increase happiness as well as life expectancy.

One of DeMuth’s steps is the “three movie exercise.” List your three favorite movies and then see what the common thread might be.

That was not an easy task, so I started to think about films that I will watch again and again. It didn’t take long for me to realize a common thread. I like “slice of life” films, those movies, which look at a finite period of time in a person(s) life and explore it. Yes, that’s a good reflection of my interests. I am fascinated by the choices we humans make, what makes us happy, how we respond in various situations and so forth.

Another indicator of our passion can be answered by asking our friends what they think we’re passionate about. Their responses may yield new insights.

It seems fitting to end this post with one of the best examples of living one’s passion- Steve Job’s Speech at Stanford’s graduation, Among his closing remarks was the following, Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma — which is living with the results of other people's thinking. Don't let the noise of others' opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.

For addition information, try Finding your passion.

Take a Break: Halloween 2011 Celebrate Samhain

2011-10-12T04:02:00.000-07:00

Being of Irish decent on both sides of my family, my mother was particularly interested in our knowing that many of our Halloween traditions originated in Ireland, where the Celts celebrated Samhain, (sow-en).

In Celtic lore, the year is divided into two halves associated with the dark and the light. The dark half begins at sunset on November 1st with Samhain and the cycle ends when the light half begins at sunset on May 1st, which is the festival of Bealtaine. Both festivals are closely linked, but in general, Samhain is considered to be the most important. Irish Culture and Customs

This was the time between the end of summer and the beginning of winter that the dead revisited the mortal world. When the Catholic Church arrived in Ireland, they took the Druid custom and created All Saints Day on Nov. 1 and All Souls Day on Nov. 2. Oct. 31 became the All Souls Evening or All Hallow’s Eve.

In the old days, the ancients believed that on this night, hobgoblins, evil spirits and fairies traveled about the country in great numbers. For protection against fairy mischief, holy water was sprinkled on animals, food offerings were left outside the house, oatmeal and salt were put on the heads of children, iron or a dead ember from the fire was put in an infant’s cradle, and little ones were taught not to eat wild fruits on this night, or afterwards, because it was believed that the Puca, a particularly nasty spirit, went about spitting or urinating on them. It was also the custom to make a special cross called a Parshell. Two small sticks were laid crosswise and shafts of wheat were woven around the junction until the cross was secured. It was then hung over the door on the inside of the house to help protect the family from illness, bad luck and witchcraft until the next Halloween when a new cross would be made. The old cross would then be moved to another part of the house. ‘Everyone has debts at Halloween' is an old Irish proverb and this was a time when people attempted to settle up. Workers were paid, as was the rent, and farm folk secured crops and livestock for the hard winter to come. While the adults were completing these chores, children visited relatives and friends and were given gifts of apples and nuts. They also played lots of games. Irish Culture and Customs

The Druids believed that the living and the dead were at their closest on the night before Samhain. Since the spirits would try to collect as many souls during this time, people would disguise themselves so that they would appear to already be spirits. Thus began the tradition of dressing up on Halloween.

As for Jack O Lanterns, the tradition of carving turnips (now pumpkins) dates back to a blacksmith named Jack, who was so nasty, he was denied entry into heaven. He was so rotten that the devil didn’t want Jack in hell either — too much competition for him! So Jack’s spirit was condemned to wander the earth for eternity. But one request the devil did grant Jack was to give him something to light his way. What he got was a burning coal ember, which Jack placed inside a carved out turnip. Thus, the tradition of the Jack O’ Lantern was born. To this day, people in Ireland still carve out turnips and illuminate them with stumps of candle. They’re then placed in a window or put on a gate post outside the house. Here in the United States, the custom was continued by millions of Irish emigrants who carved out pumpkins because they were a lot more plentiful than turnips. Irish Culture and Customs

Today’s “take a break” is learning about Samhain and incorporating a tradition or two in your own celebration of Halloween.

Make a Barnbrack Cake: The fruit caked served on Halloween, filled with fortune telling objects e.g. a ring for finding true love, a coin for obtaining wealth in the coming year.

Make a Parshell, the Halloween cross that woven on Oct. 31. It is placed on the front door or inside the house and is believed to help protect you from bad luck. It’s very similar to making a God’s Eye, with the exception that wheat straw, plant material or paper twist is used. You can practice how to make it now so you’ll be all set for making one on Halloween.

Irish Halloween Traditions

Samhain-The Irish New Year

Why It’s Important to Celebrate

2011-10-08T04:04:00.000-07:00

This weekend is my town’s celebration of the 250th year of its founding. Last night was a community dance, which my husband’s band played for. Prior to the event, he said, “if we have as many as 20 people I’ll be surprised.” As it turned out there were many more. Not as many as our older residents thought should be there but still way more than either of us thought would show up.

One friend I talked to said that she had an offer of a wonderful free weekend away, but instead opted to be in town. “Just how often does one’s town celebrate an anniversary like this?”

Many people I talked to through out the day had all sorts of reason for not coming to the dance or any of the other activities planned. They ranged from kids soccer games to having company. Would this have been like this a hundred years ago?

The answer was simple. No. Everyone and their brother would have shown up to celebrate. For starters, it would have been the only thing in town and the only major activity for the year. In those days, the town wasn’t just a place to sleep at night. It was where they fully lived.

We do not view being in the same room and socializing as a priority in the same manner our early settlers did. Further, if we do get together, people are texting and going outside to take cell phone calls and are rarely fully engaged in the present.

Even though this sounds rather glum, those of us who showed had a wonderful time. I met several new people in town and look forward to being around them the remainder of the weekend. Because there was music and dancing, with kids running around and making merry, there was very limited use of electronic devices. Just like many years ago, the wall was lined with people that no longer could dance, but just wanted to be among those that could, enjoying the music and talking to old friends and “remembering when.”

Is it worth it to go to the effort to celebrate an anniversary or some other occasion, particularly if you are not feeling all that great or are concerned about you might appear? I think it is for two very important reasons:

• When we celebrate we are “counting our blessings.” The literature is full of research that shows that if we want to increase our happiness level, count what you are grateful for. An Oprah moment "The more you praise and celebrate your life, the more there is in life to celebrate."

• There is no substitution for being together physically. If I were a physicist, I could probably explain the quantum physics of it, but the chemistry we create when we are together can be powerful. Besides, there is no virtual hug that equals a real one.

So for whatever reason celebrate and enjoy it with other people.

Take a Break: Halloween 2011 Name Skeletons/Edible Acorns

2011-10-05T04:45:00.000-07:00

Halloween is one of my favorite holidays in the whole year. There are just so many interesting and fun things to do. So today starts the next four weeks of activities to prepare for Halloween. Note that last year, I provided four weeks of activities pertaining to Dias de la Mortis (Day of the Dead). The links for each week are as follows:

Paper cuts/skulls

Skeleton figurines /paintings

Food and coloring

Altars/Flowers/Halloween Movies

But now for this week’s activities
“Name Skeletons.” This is an easy project, that makes quite a statement. Take a piece of white paper, the bigger the larger the skeleton. Fold it in half. Along the half, print a name-yours, a friend’s, a favorite pet or even an object. Make sure the letters connect. Now cut out the name. Small cuts across the centerline make interesting design details. Unfold and you have the center of your skeleton. Paste on black paper, adding a skull, arms and legs.

Edible Acorns: By “gluing” (a dab of melted chocolate, Nutella or even peanut butter) a Hershey kiss to the bottom of a Mini Nilla wafer, with a dab of chocolate on the top for the stem, you have something that looks like an acorn.

How To Fundraise When Someone is in Need of Specialized Care

2011-10-01T04:25:00.000-07:00

While medical science can provide incredible advances in effective treatments, it comes with a very high price, particularly for things like transplantation and recovery from spinal cord and/or brain injury. It’s becoming more common for people in need of specialized equipment or services to find that insurance does not cover the costs. Family and friends frequently rise to the occasion to supplement costs with donations, fundraisers and direct appeals.

The purpose of this post is to help those who are in a position to organize effective fundraisers in such situations.

The first step is to organize family and friends. The simplest method is setting up a Lots of Helping Hands website. This is free, easy to do and it only lets those people have access to the site that you deem appropriate. In this way, you can quickly identify who is willing to help out and in what types of ways. Just because some friends and family may not be on-line should not be a deterrent. Pair them with someone who is, so they are “in the loop,” and what they’re doing can be logged on so duplication of efforts is reduced.

Keep in mind that people are more likely to give if a) they know what you need and b) you keep them updated and informed. If you set up a Lots of Helping Hands website and rarely update it, it will become a source of frustration.

Document everything you do, so that if you’re not available, someone else can easily pick up where you left off. Be sure to keep the names, and contact information of everyone you talk to and include dates and brief summaries of conversations. This can be done on-line, or just keeping a special notebook with you will help considerably.

Understand what the financial obligation might be. What will insurance pay for? If money is raised for this person, can the insurance company insist that this fund be used before they will reimburse? In short, do your homework. Call the insurance company. Get them to put in writing what they will and will not cover. Make sure you keep information on who you talked to and when.

Most hospitals will have a “patient advocacy” or social services program that can help you determine what types of unreimbursable costs as well as limited benefits you will most likely encounter. They can give you a good idea from past experience about what the patients needs will be, impact on family and caregiver, what’s covered and what resources might be available to help you with costs.

In putting together your “costs” be sure to factor in things like money lost from missed work, travel, meals, and hotel rooms. Keep in mind that donations such as frequent flyer miles and gas cards can go along way to help reduce travel costs. Share your list of expenses with your circle of family and friends. You never know who knows who, which can help move you quicker to your goal or ease staying in a strange town.

Whether you are dealing with a transplant or not, the National Bone Marrow Donor Program’s Mapping the Maize has good on-line tools for calculating expenses, understanding insurance etc. You can download a copy from the website or obtain a free printed copy by calling 1-888-999-6743 or 612-627-8140

Once you have completed this exercise, you will have a dollar amount that is needed. Don’t let yourself become overwhelmed by it. Keep in mind the “March of Dimes” model, where the goal was if everyone could just send a dime a cure could be found for polio. Many people did just send a dime, but many more contributed hundreds and even thousands of dollars.

Develop a plan for raising the money needed, while taking care of day to day expenses. Ideally, the cash flow in will balance outgoing money needed for care. Use the on-line tools from Mapping the Maize to help you develop your plan.

Because an individual is not a registered charity, donations are not tax deductible. There are non profit organizations, such as NTAF (National Transplant Assistance Fund & Catastrophic Injury Program) and National Foundation for Transplants that can receive designated funds for the individual, whereby donations then become tax deductible. Sometimes a church or civic organization (e.g. Rotary) will be willing to take on this role. These groups can provide a lot of assistance with fundraising ideas and support.

Use caution in selecting a fundraising organization. Make sure they are legitimate and you have seen their audited reports and their 501© 3 credentials. Talk to other people who may have used them and ask at the hospital what they know about the organization. The last think you want to do is raise money that benefits an organization and not the person in need.

If you decide to do this on your own, identify someone who will be in charge. A separate trust account, with a designated person to administer it, should be established. This account can only be used for specific purposes, which are identified to anyone wishing to make a donation. Be clear that if money is left in the account after the goal is achieved (e.g. transplant takes place, equipment purchased) identify where remaining funds will be distributed. Finally, know the tax laws for donating funds and keep good records of all donations received.

Once you have figured how much money is needed and where it will be “housed,” it’s time to raise the money. Below are ways to go about fundraising:

• Ask individuals for their assistance in raising money and make it easy for people to donate. A well written fundraising letter can be a good tool. Keep in mind that people like to have options in how they give and what they give to. If you will be doing a lot of traveling, make sure people know that they can donate gas cards or frequent flyer miles. Make sure that they are aware who is running the fund and that all checks can be mailed directly to the bank handling the account. To make it easier, send self addressed stamped envelopes to them.

• Offer multiple ways for people to donate anonymously, such as donation boxes at churches, school, local stores or other community locations. Raffles work.

• Have fundraising events that relate to the person in need. For example, if the person was a golfer, holding a golf tournament would have special meaning. Where the person goes to church, school, work or play are all potential places that can take leadership roles in planning and carrying out fundraisers that have particular meaning.

• Have fundraisers that community will enjoy. Having events that will appeal to a broad spectrum of your community, whether they know the person or not, will help to generate both money and interest. Road races are very popular. If you can find someone willing to do a matching donation, this can add a boost to your event.

• The ever popular “spaghetti dinner” can make a quick $2,000. These are easy to organize, ingredients aren’t expensive and many places will be willing to donate ingredients, paper products etc. It’s always good to combine another activity with the dinner, such as a 50/50 raffle, silent auction, door prizes etc.

• Work with a local group so that you can have a “give-a-way” for people to take home. Things like mugs, T-shirts, and pens are used so people will notice that you are raising funds. Include a web address where people can go for more information on making a donation. The more eye catching the art, the more people will read it and take notice.

• Use social marketing tools like Facebook and Twitter to keep people up to date, where and when fundraisers are happening. Check out Rob Laird Organ Transplant Fundraiser on Facebook There is also a free web resource called Give Forward, which lets you set up a free web page to collect funds.

• Press coverage really helps. Everything you do, where public can attend, should have good advertising.

• Keep information current. Those who are donating are invested. They want to know how the person is doing, so be sure that each step of the way, you keep your web information up to date and press releases active.

• Write thank you notes. If appropriate, mention donors in your press releases.

Resources
Fundraising for a Friend of Family Member from the National Marrow Donor Program

Mapping the Maze: A Personal Insurance and Financial Guide to Marrow and Cord Blood Transplant

Children’s Organ Transplant Association

Take a Break: Draw a Stickman/Enjoy Apples

2011-09-28T03:46:00.000-07:00

While you can easily doodle a stick figure on a scrap of paper, check out the very fun Draw a Stickman on line.

Apple season is now in full swing in the Northeast, so it’s a good day to do something with apples. Try the following:

Apple Shrunken Heads

Apple Recipes

Life’s What’s Happening When You Are Making Other Plans/Giving

2011-09-24T04:31:00.000-07:00

I continue to blog about the aftermath of Hurricane Irene because it is still very much a situation I deal with daily. It has highlighted for me many of the issues that people with chronic conditions deal with but in spades. Regardless of what may be happening to you, life continues.

As if to prove this point, on Wednesday, one of the Air Guard, working on recovery efforts in my town, died suddenly from a heart attack. I knew Master Sgt. Stocker as a very fit and able man, who was very dedicated to the purpose of helping others, whether it was through his relief efforts in many parts of the world or in his job in corrections. Many of us who knew Stocker, as he has been with us since the beginning of September, were stunned and shocked. “How could this be?” was the initial response from just about everyone. This was followed closely by “what should we do?”

The “what can I (we) do” question is one I here all the time and in many situations. In the initial phase of the disaster, few people asked that question because it was very clear what was needed. However, as time went on, and routines were established to deal with daily issues, not only did I hear this question repeated frequently, but it was added with “let’s do a fundraiser.”

My response of “who is the beneficiary” was not appreciated.

Crisis brings out the best and the worst in people. Many want to give. While many are in need, they are not comfortable receiving and unfortunately, there are those who want to take advantage of the situation for their own gains.

In July I wrote two posts related to giving to those in need:
• How to Respond When Someone is Ill or Injured

• Unique Gifts for Hospital Patients

While both posts provide very practical answers to “what can I do,” they do not address the issue of fundraising in response to crisis. So here are some basics to consider before launching into this arena:

• Is the money raised for an individual-such as a person who needs a bone marrow transplant? Hospitals that provide complex procedures, where individual fundraising often occurs, can provide some guidelines. Since this is a very complex topic, I will blog about it specifically next week.

• Are there existing organizations in your community that could benefit from a fundraiser? If your community has a food shelf and/or social services agency, this may be a good choice for your donations.

• The Red Cross does an incredible job in disasters and can definitely benefit from donations. The sound of their helicopters circling over our shelter was music to my ears. They not only worked with us to identify needs and how to fill them, but they provided much needed information such as how to work with FEMA, getting people to accept help and providing us hugs when we needed them.

• Local churches and civic organizations (such as Rotary, Lions Club) will often have small funds that they distribute. Many will give to anyone in the community and have less stringent guidelines then social service organizations. These groups will have the appropriate certification to make donations tax deductible.

• Be very wary of newly formed groups. While some may be legitimate, others can be scams. Learn who is behind the organization (who are the board members) and what are the guidelines and timeframe for distribution of money raised.

• Condition specific organizations, such as the local chapter of your Parkinson’s Disease Association, may appear to have nothing to do with the disaster. However, their constituency has been impacted just like everyone else, and because they are already dealing with difficult situations, the crisis significantly multiplies issues.

FEMA has a good handout on donating during disasters. The one thing I would add to that is start with your neighbor. Can you help them? Keep in mind that gifts cards, be it for gas, the metro, to the local department store so they can purchase their own underwear, or to a restaurant they like are very helpful.

Remember to take care of those who are the caregivers. One of the things I will always remember was a woman, who I did not know, bringing me a lemon meringue pie. I was blogging daily from the shelter to keep our community informed, (these can be read at www.cavendishvt.blogspot.com) and made a comment about how I was so tired of brownies and would really appreciate a lemon meringue pie. Once the work of the day began, I didn’t think twice about what I had written. When she arrived with the pie, I was finishing up a meeting with one of the work crews. It was a wonderful boast for all of us who had been working many hours at that point.

I’d like to end this post with a special note of thanks to Sgt. Stocker who gave so willingly to our town. I will never forget our chats in the chaos of the shelter and your beliefs about giving. Peace.

Take a Break: Design Your Own TV Show

2011-09-21T03:55:00.000-07:00

How many times have you watched a TV program and thought, “If they had just done x, y or z, it would have been a lot more interesting.” I’ve spent more than one late night waiting for food at a diner discussing “brilliant” ideas for game shows, reality TV worth watching and a sitcom that would be a sure fire hit.

Today’s “take a break” is all about jotting down the TV show you’d like to watch or you think others might enjoy.

Use whatever format interests you. It could be a documentary for PBS, talk show, cooking demo, an adaptation of your favorite novel, a new series for the Science Channel, or even what you think Oprah should really be doing with OWN.

Once you have your idea, you can share it with friends and keep on kicking the idea around, or you can do something with it. Many people aren’t aware that many public access channels are always looking for new and creative ideas. If you don’t know the local public access channel for your community, go to http://en.wikipedia.org/wiki/List_of_public-access_TV_stations_in_the_United_States Your local PBS channel might also be interested.

Finally, there are ways to submit your idea for consideration by one of the larger networks. Check out the following links and happy brainstorming.

The TV Writers Vault

How to Sell Your Idea for a TV Show

The Power of Purpose

2011-09-17T04:35:00.000-07:00

Since my town is still in major recovery mode from Hurricane Irene, I’m very aware of the impact of the flood has had on some of our older residents.

About the third day the shelter was open, a friend stopped by and I asked her how her folks were doing, since they lived in a fairly rural part of town with dirt roads. She broke into a big smile, “My Dad is running the crew that’s putting the road back together.”

From sun up to sun down, this 80-year-old man was on his tractor, overseeing men half his age, and reconstructing roads. Not only was he being complemented on his skills, he was welcomed as a hero as various neighbors were getting out for the first time. His daughter couldn’t help but note the change in him, “he’s having a great time and looks ten years younger.”

Because people were cut off, one of the primary ways we were able to find out who was in need of help, were social networking sites like Face book. Many people in my town have generators as well as “smart phones.” Even if it was for 10 minutes twice a day, people fired up their generators to check e-mail and to report on the recovery operation in their area. Among my best e-mailers was an 86 year old woman who e-mailed daily to let me know how things were going. She was such an inspiration, it wasn’t long before her sister, also 80 something, was e-mailing to let me know what they had to donate to the relief effort.

About a week after the flood, I saw my friend’s Dad and there was no way you would have thought of him as elderly. He had purpose, his skills were recognized and he was actively engaged in something he enjoyed.

Again and again I saw the older members of our community coming to the shelter to cook, drop off items for the relief effort or serve food. They had smiles on their faces that stretched from ear to ear. They were making a difference and they knew it.

Among the keys to a good quality of life, which does impact longevity, is having purpose and interests, particularly ones you share with others. While there are lots of websites, books and articles about “finding purpose,” the advantage of a crisis is that it rapidly defines purpose for just about everyone.

Since it’s preferable not to have to be dealing with crisis on a regular basis, below are some tips on finding purpose and making a difference

• Volunteer: No matter if it’s your local church or organization, volunteering helps many find purpose. If you are limited in your ability to get around, there are many things you can do from running an on-line support group to making “friendly calls.” Check your paper for local opportunities or try one of the following websites:
Volunteer Match

United We Serve

UN Volunteers

• Look around and see what your community, family, neighborhood, support group might need. It could be as simple as taking care of the neighbor’s dog during the day while they work to organizing a support group where one doesn’t exist.

• Do what you love. What have you tried that makes you fully engaged? What are you most passionate about? What are you good at? What do you like to talk about or learn about? Whatever it might be, do it whether it’s income producing or not. Call it “following your bliss,” or whatever term you choose, but know that when we are fully engaged, we experience happiness and contentment.

Finally, and maybe most importantly, regardless of our age, talents or abilities, we all have something to give and share. This means that we all must be willing and open to receive the gifts and purposes of others.

Take a Break: Palm Reading/Mazes

2011-09-14T03:43:00.000-07:00

Halloween is about six weeks a way, so what better way to get yourself in the mood than to learn how to read palms? Well I suppose there are lots of things you can do, like carve a pumpkin, but for some reason, I found it fun to learn how to read palms. So whether you want to be the palm reader at a Halloween party, or you just want to know what those creases in your hand mean, check out the following links:

How to Read Palms

How to Read Palms Video

If palm reading isn’t working for you this week, what about mazes? If you can walk a corn maze, check here for locations, they are lots of fun. If you don’t have one nearby, check out KrazyDad’s Free Printable Mazes.

Ten Things I learned from Irene

2011-09-10T02:36:00.000-07:00

As I noted in Wednesday’s Take A Break, I live in one of the “island” communities of Vermont that were heavily impacted by Irene. For 10 days I was manning the relief shelter in our town. So this is what I learned from that experience, which I think has direct bearing on living with a chronic condition:

1. You have to be willing to receive as well as give. Yes, there is that adage that it is better to receive than to give, but I think that means that if you are giving you are most likely not in crisis.

2. The 1, 2, 3 Rule needs to be followed even in a crisis
a. First take of yourself. If you aren’t strong, you can’t be at your best to help others.
b. Second take care of your family and close friends
c. Everything else comes after that.

3. You have a much better perspective on things if you have: slept (take a nap); eat or gone to the bathroom (even if it is in a porta pottie). Take breaks.

4. When you are upset, you may want to eat all the time or not at all. Have healthy foods. Better to pick at carrot sticks, nuts and grapes then brownies. When someone is in crisis, bring healthy snacks. If I never see another brownie it will be too soon.

5. Ask for what you need.

6. Facebook, blogs, e-mails are critical tools to network and keep people informed. Use them wisely though.

7. The brain is an amazing thing. Left to its own device, it will begin the healing process so that within a week to 10 days you will have adjusted to the “new normal.”

8. People have natural inborn compassion, which shows itself in wonderful ways in a crisis. Yet, once the initial crisis passes, people quickly forget and it’s business as usual for many.

9. Crisis happens. It can change us and the way we live. Don’t miss the lesson. Good things can come from hard times.

10. When the immediate phase of a crisis ends, the longest and hardest part of the process begins. People and support are needed throughout. Just because someone wasn’t there for the crisis phase doesn’t mean they may not be more helpful in the longer phase.

Take a Break: Art from Plastic Bottles

2011-09-07T02:01:00.000-07:00

I live in what is now being referred to as an “island town.” We were hit pretty hard by Irene, making it difficult to get in or out of our town. It’s not a good sign when the governor, the National Guard, FEMA and the Red Cross are checking out your neighborhood in a helicopter.

For the last 10 days, I’ve been at working at the relief shelter. If it’s of interest, you can read more about it at www.cavendishvt.blogspot.com While I wanted to set up an arts table, I was being pulled in many different directions and didn’t have a chance to do so. However, a local art therapist did just that. It made a big difference to everyone when she took the many empty water bottles lying around and gave a workshop on what you could make with them.

She cut the bottom of a bottle and then made cuts so that it folded back like a flower. With a bit of paint and glitter, it looked like an exotic piece of beautiful art. You can also make a bracelet by cutting out the center section of the bottle, and then gluing tissue paper

Below are some other ideas for turning plastic bottles into art:

Lava Lamp and other ideas

Water bottle crafts

Recycled Water Bottle Bead Bracelet

14 Ways to Make Water Bottle Crafts

Take a Break: Do Something with Your T Shirt Collection

2011-08-30T19:47:00.000-07:00

When I first started writing this post, it was a bright and sunny day. That all changed with Irene on Sunday. I live in one of the "island towns" in Vermont. I didn't have a lot of time to go back over this. However, just in posting this, it reminds me of the importance of "taking a break."

We all have T-shirts that we no longer wear. Some of us, like my husband, have drawers full of them. You can: bundle them up and drop them off at your local fabric recycling center; put them in a Good Will box; or donate them to used clothing store. They also make good rags. However, they can be used to make all sorts of things.

A friend of mine had a party for her daughters’ friends and told them to bring two T-shirts they no longer wanted. The kids cut off the sleeves and neck and had the thrill of sewing three seams and left the party with their very own pillowcase.

Several of the kids became inspired by their sewing experience and turned their old T’s (and some not so old ones) into pillows. A small child’s T shirt, with the sleeves left on, makes a very interesting looking pillow, particularly when a 10 year old is doing the sewing.

For some new ideas about what to do with your T shirt collection, check out the following sites:

T-shirt Makeovers

Very cool scarves

T shirt flowers

3 in 1 T Shirt Dress/tunic top/skirt

Be Prepared

2011-08-26T08:07:00.000-07:00

Given the earthquake and the looming hurricane Irene, it’s a good idea to go over basic preparedness procedures. This is an update from the January 2010 post, where I wrote about how to prepare for a disaster. This is particularly important when one or more people in a family are dealing with chronic conditions.

Below are some additional items that are not included in the previous post:

ICE your Cell Phone: Make sure you cell phone has an “in case of emergency” in the contacts list. Be sure to include several people.

Know How to Text: If you haven’t learned to text message on your cell phone, now’s the time to learn. Following the earthquake, it was easier to reach people by text messaging than by cell phone or landline.

Program Numbers on Speed Dial: Have emergency numbers, as well as neighbor or family member who can respond immediately, on speed dial

Have a “to go” bag in a handy place, where you can grab it if you need to leave suddenly. Keep the following up to date and in the bag:

• Print version of a Personal Health Notebook While it’s great keeping one on-line, if something happens and you can’t access the internet, a paper copy will supply needed information to emergency personnel. At the very least, have the following written down:
- Name, address, phone numbers and who to contact in the event of an emergency
- Allergies-include those to medications, food and environment
- Diagnoses that you are being treated for. Be sure to everything such as hypertension, type II diabetes, high cholesterol, gout etc.
- List of prescribed medications that you are taking. Include dosage amount and when you take them. For some conditions it is critical that you be given your medications at the same time daily. Some providers will provide notes for just this purpose.
- Contact information for medical provider and hospital where you receive care. If you use more than one provider and/or hospital, be sure to list all of them and what each one is used for.
- Basic information about yourself-height, weight; blood type; religious preference; advance directives
- Copy of health insurance
- Photos of self and family.

• Medications: Both prescribed and regularly used “over the counter” medications. If it’s possible, have a week’s supply. If that’s not possible, have at least two days worth. If your medication needs to be kept refrigerated, include a box of “instant cold” packs. Be sure to include bottled water for taking pills.

• Medical supplies: Anything you generally use should be included, such as needles for prescribed injections; catheters; bandages etc.

To learn more about preparing and planning for emergent situations, go to the FEMA website.

Take a Break: Draw with Willow

2011-08-24T02:42:00.000-07:00

This past week, I was fortunate to spend the afternoon in my town’s local café talking to the author and illustration Willow Bascom. Over 20 years ago, Willow developed lupus after the birth of her third child. This caused a stroke, which left her hands very compromised. As a project for her hand therapist, Willow drew a paisley pig that became the inspiration for her book Paisley Pig and Friends: A Multicultural ABC. It is the book that you want as a “read aloud” for your children and grandchildren.

Recently Willow completed an activity book to go along Paisley Pig. After it was completed, she realized that this was the workbook she wished she had to help recover from her stroke.

Lucky for us, Willow has included some activity pages on her website that you can download and do. So take a break and draw with Willow.

If you aren’t in a drawing mood, I found myself fascinated by a clip my brother sent me where you can watch the International Space Station being assembled. Amazing!

Creating a healing environment

2011-08-20T12:12:00.000-07:00

Do you have a place where you can be that makes you feel wonderful? For me it’s water. If I could live anywhere, it would be by a body of water large enough to have tides and an endless horizon. I can spend hours happily walking the beach or sitting and staring at the waves. Ahhhh….

The ancient Greeks must have had similar feelings as their temples to Asclepios, the Greek god of healing, were all associated with sacred springs, whose waters, they believed carried the healing powers of the Earth spirits. Patients seeking the god’s help in finding a cure for their ailment first drank and bathed in the waters of his spring. They would then “sleep” in the temple, where they would be given healthy food, exercises and dream interpretations to help them heal. Sounds a bit like going to a spa, but these “temples” were the first hospitals for healing.

If the distractions and distortions around you, the jarring colors and sounds, could shake up the healing chemistry of your mind, might your surroundings also have the power to heal you? Dr. Esther Sternberg, a neuroimmunologist at the National Institute of Mental Health, asked that question and found through her own experiences, as well as research, that it can.

After an extremely stressful period in her life, Sternberg developed arthritis and went on to learn how to reverse it by visiting Crete where an Ascleios Temple once stood. In her book Healing Spaces, she describes how patients in the hospital heal quicker if their window faces nature, as well as other studies which show that the mind body healing process, as well as the development of disease, is very much impacted by the environment in which the person lives. "Wherever you are in the course of illness or healing, your physical surroundings can change the way you feel and, as a result, can change how quickly you heal. In all these contexts, communication between the brain and the immune system is vital."

While I may find that being around large bodies of water makes me a lot less stressful, this isn’t necessarily the case for everyone. Think about a place that made/makes you feel peaceful and content. Once you have captured that feeling, what was it about the space that most resonates with you? Remember the smells, sounds, how it looked, colors and most importantly how well it made you feel. What aspects of that can you recapture for your day-to-day living space?

Since the ocean is a very special place for me, I bring home rocks that I have collected at the beach and place them in my office and in other parts of my house. The touching the rocks, as well as their smell, can brighten my day. I’ve painted my office a light sea green and I have pictures of some of my favorite seascapes just above my computer.

Regardless of setting, step one is to reduce all possible stressors. This can include noise, odors, visual items, including clutter, as well as people. No time like the present to limit or eliminate the “energy vampires” in your life.

Having recently spent the night in the hospital, where I stared continually at a “pain chart,” if you are creating a healing space for someone in the hospital, it’s important to see things from the perspective of the person lying in the bed. Is there a window, artwork, or something that can reduce the visual stressors? If not, think about creating an art feature to refocus attention.

There are lots of ways to create an environment that is healing for you or for someone else. It does not have to cost a lot of money, or any money at all. Simple measures liking keeping the place uncluttered, clean, bringing the outdoors in-there is always something outside that will look good in a vase- and having it smell nice –baking soda can do wonders- can do a lot to improve your mood.

Consider the following resources:

What Can I do to Create a Healing Environment

Creating a healing environment for Yourself

Is your home a healing place?

6 Ways to Create a Healing Home

Creating a Healing Home Environment

Take a Break and Dance

2011-08-17T03:29:00.000-07:00

I have always loved to dance. Marrying a musician, who plays in a dance band is a bit frustrating, but there are all kinds of dances you can do by yourself, or even if you are sitting down. Not only is it fun, but it’s great exercise to boot. In fact, Step In the Name of Life has developed a whole step/line dance program to keep people healthy. In some of their videos, listed below, you’ll see that one of their dancers uses a cane.

Dance alone or with a partner. Don’t have your favorite oldies? No problem, go to Pandora www.pandora.com and select what you like. In can be just as simple as putting in your favorite song and Pandora will create a whole play list for you for free.

Below are a variety of video links to teach you different styles of dance.

In the words of Tracy Turnblatt from “Hairspray,” “Let’s dance!”

The Madison: Having been in the original “Hairspray” movie as a pre teen Mom extra, we danced the Madison at cast parties, on the set and the “counsel members even danced it at the primer in front of the Senator Theater. The dance was featured on a local Baltimore dance TV program called “The Buddy Dean Show.” This is a clip from the Buddy Dean Show but is easy enough to follow.

Electric Slide

Achy Breaky Heart Linedance

Mashed Potato Time with Dee Dee Sharp http://www.youtube.com/watch?NR=1&v=mQBKpV9emKc&feature=fvwp

The Loco Motion-Little Eva: Follow the dancers in the back line.

Step in the Name of Life Videos
• James Brown

• Michael Jackson Shuffle

• Tootsie Roll

• Homey Dance

How to Step Dance

Beginner Salsa Dancing

Zydeco Bounce Line Dance

Can’t Wang Wit It Line Dance

Zumba Fitness Basic Steps Demo

Looking good Improves how you feel

2011-08-13T04:34:00.000-07:00

One of the highlights of our HIV women’s retreat was our “look good feel good” night. We would bring in hair stylists; make up specialists and even people that provided tips on ways to dress. Every body looked terrific by the end of the night and many kept up the changes long after the retreat was over.

How you look can impact how you fell and how you feel can impact how you look. If you take a quick peek in the mirror and think, “train wreck, “ those negative feelings about your appearance can ultimately make your feel less healthy.

Side effects of treatments (medication, chemotherapy, surgery, radiation etc.), the condition itself as well as aging in general can take quite a toll. Yet, with a bit of guidance and some trial and error, it is possible to significantly improve how you look, which can lift your spirit.

I’ve worked with a number of people undergoing chemotherapy and radiation, who with some make up tips and new hairstyles or wigs look so much better that people, who may not be aware of the current situation, will comment, “whatever you’re doing keep it up!”

One of the pioneers in helping patients is Look Good Feel Better, which was initially designed for women with cancer. Today the program is offered at many cancer centers as well as having an excellent “how to” website for women, men and teens. Check to see about scheduled workshops in your area. Not only will you receive personalized care, you’ll leave with a lot of free product.

For those who have difficulty with the use of their hands due to arthritis, tremors or other conditions, as well as for people who have permanently lost eyebrows or sustained other significant changes, such as scaring, there is the option of permanent (micropigmentation) cosmetics. As one person noted, “choose your permanent make up specialist as carefully as you would choose your surgeon.” Check with your medical provider for recommendations before undertaking such a treatment.

Consider the following:

• Visit your local make up counter and ask for a free make over: Let them know the types of issues that you are dealing with so they can make suggestions about what might work for you. Unless these are products you use all the time, and you are just looking for some tips on better ways to use them, don’t buy them at this time. Leave the make up on for at least several hours or longer to make sure your skin doesn’t react to it. This is also a good way to decide if you like the look at the end of the day.

• Participate in a “make over” party: This would be a fun and beneficial activity for a support group meeting. Mary Kay, and Arbonne offer in home consultations to groups. An area spa may be willing to donate an afternoon to your group, so don’t hesitate to call and see what they might be willing to do. Again, if these are not products you generally use, wait before making a purchase.

• Check with the medical center where you receive your care as some programs have staff and volunteers that can provide assistance in this area. Some programs will include adaptive equipment to help you apply cosmetics.

• Connect with the local chapter of the condition specific organization (e.g. American Cancer Society) and ask them for information on programs, types of cosmetics best to use for people in your situation etc.

• Not all cosmetics are equal and in fact, some can be harmful. Lotions that promote high levels of something, such as vitamin A, can be unsafe. For example, someone with hepatitis does not want to use a product that has a lot of vitamin A, which can be harmful to the liver. Check with your medical providers about what you may want to consider or avoid. Ask for samples of items as many medical centers, particularly cancer centers, are given items for patient use. Check the safety of products that you are currently using or are considering at Environmental Working Group’s Skin Deep Cosmetics Database.

• Check out on-line resources for make up tips, best wigs etc. Some links to help you get started:

Web MD’s Slideshow: Look Younger Secrets that Work

Coping with Lupus Skin Care

Beauty Tips for Cancer Patients

How to Apply Makeup During Chemotherapy (video)

Tips on Makeup to Hide Scars

Beauty Ability: Written by a woman with a spinal cord injury, the purpose of this blog is to “help women with disabilities realize their awesomeness.” Lots of tips and suggestions

If you have some tips to provide on “looking good,” please post them to this blog or to the Healing Whole Facebook page.

Take a Break: Make anything you want a chalk board using homemade chalk paint

2011-08-11T02:49:00.000-07:00

Sorry this wasn't posted yesterday. We didn't have internet service in my area.

There are so many neat things you can do with your own chalkboard, from writing notes to let family know where you are going to acting as a pill reminder. A small brightly colored item would be great to give someone in the hospital and leave by the bedside. This way they can let people know how they are doing and visitors can leave notes of encouragement.

You can make your own chalk board paint, in any color you like, by mixing together 1 cup paint and 2 T non sanded grout. I just purchased some at Home Depot-small size was less than $5. Paint it on, lightly sand when dry and get out the chalk. Check thrift stores for old trays, vases and other items that you can paint and leave a message. In your local craft store, and even places like Walmart, look for wooden die cuts. Paint with your favorite color, drill a hole if needed, and make reusable gift tags.

Check out the following websites for ideas and more “how to:”
• Make your own Colored Chalkboard Paint

• ECStewart Designs/How to Make Your Own Chalkboard Paint (Video)

Organizing Community to Aid Those affected by aging, illness and/or injury

2011-08-06T03:02:00.000-07:00

This post is dedicated to Bev, who has helped to keep so many of us in the Old Time music community connected over the years, first using letters and then e-mails.

With the graying of the “baby boom” generation, as well as once terminal diseases now treatable as chronic conditions, the need for communities to organize to support those who are ill, injured or aging is paramount. While it is up to the person dealing with such issues, and their families, to make choices about the care they receive, this can be emotionally, physically and financially overwhelming. Further, insurance covers some things and not others. In today’s economy, most adults are working, including many who in past generations would have been retirees. Women, once the primary caregiver in their families, are now an established part of the workforce and it’s not as easy for them to stop and be a full time caregiver.

In generations past, community would take care of one another, as there were no such things as social service agencies, community action groups etc. We have evolved into a society that believes we should “let the experts do it.” Unfortunately, many of the organizations that were designed to help with such needs are folding, can’t keep up with the demand and not infrequently tell potential clients, “while you qualify for services, you’ll be on a waiting list.”

The good news is that we have tools at our hand that past generations didn’t have, which can make it much easier to organize and help one another. People do best when they feel they are needed, so volunteers will come forward if they know how to sign up, there isn’t a lot of “red tape” involved in becoming a volunteer, they are not overwhelmed with responsibility and believe that what they are doing makes a difference.

While we may not have the community skill sets that our forefathers had, we can learn and we have quicker ways of doing so thanks to things like the internet, television and continuing education.

Community can be defined in a number of different ways. It can be a distinct neighborhood in a large city, a rural town, a suburb, an apartment complex, senior housing, or even a network of friends. However, the end result is the same-a group of people who are connected and wish to remain that way regardless of injury, illness or age.

Below are six basic elements that help people heal and maintain their health. The more a community (as you define it) can organize around these components, not only will it reduce the overall cost of care, but it significantly increases the chances the person will remain part of the community.

How you use this information will very by where you live, how you define community, and what resources already exist. You can read this post from the viewpoint of what you can do as an individual to help your community, or use it as a way to begin a community discussion.

Keep in mind that if you want to see things change, it starts with you. This post is a place to begin the discussion about the needs of those who are aging or have a chronic and/or life threatening and how community can help. Keep it going by posting your ideas, suggestions or things you are doing in this regard to this blog and/or to the Healing Whole Facebook page.

This is a work in progress, and I will be happy to update this periodically.

Organized support. The two questions that people ask when they learn that someone has been injured or newly diagnosed are “How are they,” and “What can I do to help?” To both these questions, the simplest approach is that a good friend and/or family member(s) establish a Lotsa Caring Hands website. This is a private, web-based caregiving coordination service that allows family, friends, neighbors, and colleagues to create a community to assist a family caregiver with the daily tasks that become a challenge during times of medical crisis, caregiver exhaustion, or when caring for an elderly parent .Each community includes an intuitive group calendar for scheduling tasks such as meals delivery and rides, a platform for securely sharing vital medical, financial, and legal information with designated family members, and customizable sections for posting photos, well wishes, blogs, journals, and messages. This is a free service and does not take long to establish. Further, people who do not use the web can be paired with those that do, so that their services are included.

Even if a person lives in another town, this is still a good way for them to understand what is going on and what they can do to provide support-e.g. send gas cards to people who are signed up to do a lot of the driving, arrange for a weekend away for the primary care givers. For other ideas see How to Respond When Someone is Ill or Injured.

It is now possible for community organizations, such as churches, civic clubs, schools and social groups to establish a Lotsa Helping Hands page to coordinate volunteers to help those in their specific communities who might be in need. Many communities now have listservs and on-line bulletin boards, which can help connect volunteers to those who have specific requests, such as rides to a medical appointment. If your community doesn’t have something like this yet, try starting a free Facebook Community Wall.

Information: There are two types of information that people need. The first is resources in their community, county and state that are available to help them. Providing it in a handout form, with a more detailed website, blog and/or Facebook page will make it possible for more people to access it. Places where people gather, such as churches, civic groups, chambers of commerce, town and city offices, schools, libraries, hair salons, and office buildings should be made aware of web activities and have handouts available. While most states now have 2-1-1, the information and referral service helpline, there are often community based services they may not be aware of. Use the template of the “Getting What You Need Checklist,” tailor it to meet the needs of your community. Check out “Getting What You Need Checklist: Cavendish edition,” to see how one community has adopted it.

The second area is health information. While the internet is a wonderful resource tool, there is a lot of misinformation, outdated materials and sites that are nothing more than snake oil. In fact, health scamming escalates when it’s a chronic and/or life threatening condition. Helping people find the correct health information in a format they can understand can make a world of difference in how they will deal with their health issues.

Having worked on a librarian outreach project for several years, I know that people turn to their friendly librarian over other community resources, including the local health center or hospital, for both health and community information. In fact, there is at least one graduate school, which offers a combined MLS (masters of Library Science) and MSW (masters of Social Work) degree.

Libraries can increase their responsiveness by:
• Weeding health related books on a yearly basis. Ask your local health center, or someone similar, to do this for you. Also ask them to provide recommendations, extra copies of material etc. Do not believe that more is better and leave out of date books on the shelf as it can be hazardous.

• Book marking appropriate medical sites on patron computers, including e-patient sites. Again, talk to your local medical provider about their recommendations.

• Contacting local chapters of national health organizations (e.g. American Cancer Society) and obtaining current materials, which are generally free.

Places of worship, salon/barber, bar/pub, place of employment are others place where people turn for help and information. There is no need to reinvent the wheel if the library is already doing a good job in providing health information and there is a good resource handout that all can use. However, since people will gravitate to free computers, identify where those are in your community, and bookmark where possible.

Personal health journal. This can be done on-line, or in print. This is recommended for three reasons:

• There is a growing e-patient movement, whereby people with similar diagnoses share information about their condition as a means to better understand what treatments and approaches might be helpful for their condition.

• It helps the person and caregiver keep track of who the providers are, what meds are being taken, what they might be allergic to, what’s been tried etc. This is a very helpful tool in situations where several family members may be providing care for an individual, such as elderly parent. This way, everyone that needs to know what’s going on (e.g. who the doctors are, latest lab work, medications etc.) is kept informed.

• Even with the move toward “paperless offices,” information isn’t always available during office visits, and doesn’t always transfer when you visit a different practitioner.

Having designed a print “Health Notebook,” we found that the highest users were caregivers. People experiencing a health crisis were also more likely to use one, but again they would ask their advocate and/or family member to fill it out for them.

Communities can assist in the process by providing training on use of a personal health journal in print or on line.

Learn More
Managing Health Information Online: Yours/Theirs

Being an e-Patient: Social Networking for Health

Advocacy: The health care system is a maze that many become so confused by, they don’t get the care they need. Further, medical appointments can be traumatic and it’s very helpful to have an unbiased person taking notes and reviewing them after appointments. A “friend with a pen” can make for a much better visit.

Some condition specific organizations provide advocates, so that is a good place to start. A community may want to develop its own set of advocates and/or train family and friends how to do this.

Learn More
• Health Advocate-Who, What, When and Where

• How to be a “friend with a pen.”

Support Group: Study after study shows that people who participate in support groups do better. Today, with the availability of the internet, on-line support is available 24/7. This is also the dawning of the e-patient age, where patients are actively involved in helping to study what works and what doesn’t.

Communities can help by providing resource information about locally occurring support groups, links to the local chapter of national organizations (e.g. American Heart Association) and being willing to offer free space where such groups can meet.

Learn More
Being an e-Patient: Social Networking for Health

Finding Support on-line

National condition specific organizations

Well Being: In 2008, nef (the new economics foundation ) was commissioned by the UK Government’s Foresight Project on Mental Capital and Well-being to identify a set of evidence-based actions to improve well-being, which individuals would be encouraged to build into their daily lives. In reading the Five Ways to Well Being below, assess how well you and your community enables its members to achieve these and what can be done to improve opportunities to increase well being for all.

Connect: Connect with the people around you. With family, friends, colleagues and neighbours. At home, work, school or in your local community. Think of these as the cornerstones of your life and invest time in developing them. Building these connections will support and enrich you every day.
• Are there places in your community where people can gather such as parks, playgrounds, cafes? Are they handicap accessible? Are these places inclusive, where everyone is welcome or are they restricted in some way?

Be active: Go for a walk or run. Step outside. Cycle. Play a game. Garden. Dance. Exercising makes you feel good. Most importantly, discover a physical activity you enjoy and one that suits your level of mobility and fitness.
• Are there places in your community where people can walk, ride bikes and engage in other outdoor exercise? Are they handicap accessible. Does your community offer community and school vegetable gardens? What about sliding scale fees for fitness and well-being classes (Bone Builders, yoga, mindfulness) and/or gym memberships?

Take Notice: Be curious. Catch sight of the beautiful. Remark on the unusual. Notice the changing seasons. Savor the moment, whether you are walking to work, eating lunch or talking to friends. Be aware of the world around you and what you are feeling. Reflecting on your experiences will help you appreciate what matters to you.
• Does your community offer seasonal events, such as harvest festivals in the fall, or a holiday bazaar? Are these events handicap accessible? Does everyone in the community feel welcome?

Keep Learning: Try something new. Rediscover an old interest. Sign up for that course. Take on a different responsibility at work. Fix a bike. Learn to play an instrument or how to cook your favorite food. Set a challenge you will enjoy achieving. Learning new things will make you more confident as well as being fun.
• Are adult learning opportunities available in your community, or in a neighboring one? Do people take advantage of them? If not, why not? Does you community have a time banking system, where in exchange for your time and ideas, someone can teach you how to do something? Are there community theater, art programs and other such activities available that anyone can participate in? Are these opportunities available to all?

Give: Do something nice for a friend, or a stranger. Thank someone. Smile. Volunteer your time. Join a community group. Look out, as well as in Seeing yourself, and your happiness, linked to the wider community can be incredibly rewarding and creates connections with the people around you.
• Is there an easy way for people to volunteer in your community? Are new people made to feel welcome as volunteers? Are there a variety of ways people can participate regardless of age, gender and abilities?

Learn More
Healing the Whole Person: Ways to Increase Well-Being

Additional Resources
Aging in Place

Caregiver Resources

There are also a variety of topics that have been highlighted on the right hand side of the Healing Whole Blog

Take a Break: August Holiday Gifts to Start Now -2011 Edition

2011-08-03T02:36:00.000-07:00

In August of 2010, I posted five items to start making for the holiday season in December. Here are five ideas for 2011.

Fudge in Cookie Cutters: No you aren’t going to make fudge now for December, even though lots of candy companies are well into their holiday production. Instead, start looking, while holiday items from last year are 75% off, for metal cookie cutters.

There are many holiday fudge recipes, but the marshmallow http://southernfood.about.com/od/fudgerecipes/r/bl40214h.htm variety is pretty fail proof. Line a cookie sheet with aluminum foil. Place cookies on it, just as you would if you were cutting out a cookie. Pour the fudge into each cookie. While soft, decorate with M & Ms and other small candies. Let harden. Wrap and you will have given two gifts in one-fudge and a cookie cutter. Actually, include a note card, with a pretty ribbon, and write that the cookie cutter can be hung on their Christmas tree with the enclosed ribbon.

Other uses for Cookie Cutters: Use them to mold Rice Krispie Treats or cut out brownies and decorate. Whether it’s a brownie or fudge, small peppermint sticks make good “trunks” for your Christmas trees.

Popsicle Bracelets: There are lots of popsicles around, so this is the perfect project for summer.

Frame a Game Board: Games like Candy Land, Monopoly, Clue and Chutes and Ladder are often available for cheap at flea markets, and tag sales. Purchase one with a decent board and frame it. Attach game pieces to the back, so someone can play it if they want it. Great present for a friends that you may have played the game with as a kid.

Water Balloon Candle Holders

Environmentally friendly cleaning products: An ideal gift for the friend that has everything, or the one that wants to be a lot “greener,” or consider it for members of your support group, who shouldn’t be exposed to harsh chemicals anyway. I have given various members of my family what I think are superior cleaning tools that reduce chore time, save money and yield good results. People liked them. Starting in August, you have time to test out different formulas, pick up spray bottles and containers and even harvest herbs that will make sachets that are moth and beetle repellents. To get started, check out Naturally Clean. Include your “recipes” so they can make their own.

Healing Whole Now on Facebook

2011-07-31T03:10:00.000-07:00

August marks the 2nd year anniversary of my starting the Healing Whole Blog. I've started a Facebook page This way I can link to articles that may be of interest and increase topics of conversation.

Being an e-Patient: Social Networking for Health

2011-07-30T02:55:00.000-07:00

This week, I watched Dave deBronkart’s presentation on TED Meet e-Patient Dave and as a result read a great deal about how patients are using social networking to heal. This presentation, along with new research recently released by Patients Like Me, is forging a whole new path in health care that is being driven my patients. While I have been a major advocate for both patient empowerment and the usefulness of belonging to a support group, social networking provides a very useful tool for people living with chronic and/or life threatening conditions.

Dave deBronkart explains how a stage 4 diagnosis of kidney cancer put him in the driver’s seat of his health care. Thanks to a social networking site recommended by his doctor, he was able to find an effective treatment. Before he went to the ACOR (Association of Cancer online Resources) he was reading “content” sites that were offered by organizations like the American Cancer Society, National Cancer Institute etc. However, none of these sites provided him with the information and support that has made it possible for him to be alive today.

In his talk, Dave says, Patients are such an underutilized resource. ….I've got somewhat know for saying that patients should have access to their data. And I actually said at one conference a couple of years ago, "Give me my damn data, because you people can't be trusted to keep it clean." There are a number of websites now where people can share their stories, as well as their data, in order to explore treatments and regiments that help them as well as other people they are on-line with.

Patients like Dave aren’t the only ones fueling this movement. Tom Ferguson, MD, has written about the “empowered medical consumer since 1975. In fact, he was the section editor for health, medicine and self-care for “The Whole Earth Catalogue.” He was also an early advocate for the development of on-line health resources and the new field of Health “Informatics.”

This past April, the website Patients Like Me published what is being called a “patient-initiated observation study” refuting a 2008 report that found the drug lithium carbonate could slow the progression of ALS (amyotrophic lateral sclerosis). PatientsLikeMe says it “developed a novel algorithm designed to match patients who reported taking lithium with a number of other ALS patients that had similar disease courses. By using a matched control group, PatientsLikeMe was able to reduce biases associated with evaluating the effects of treatments in open label, real world situations and improve the statistical power of the study making each patients contribution more meaningful.” The study included 149 patients on lithium, compared to 447 not taking the drug, says Paul Wicks, Phd., one of the study’s lead authors and the group’s director of research and development.

Obviously, this type of trial can’t match the potency of a double-blind, controlled clinical study, the gold standard. But, Wicks says, this type of patient-centric study has a different kind of power, and it also has speed in its favor. “This is a community movement,” Wicks says. “The patients taking lithium were self-choosing, they were getting it from their own neurologist.” Moreover, he says: “Tapping into the power of a patient community can really speed up trials, it’s a disruption of the status quo and there’s no reason this couldn’t apply to diabetes, asthma, depression, and all the other diseases we now cover.” http://commonhealth.wbur.org/2011/04/social-network-conducts-medical-research/

With more and more patients moving away from “content” sites, and choosing social media sites, medical centers are taking note. On July 5, the Mayo Clinic launched a social network site for patients and caregivers. Within the first seven days, they had 1,000 enrollees. Not limited to Mayo Clinic patients, the site is free and is open to anyone, not just those who have been patients at Mayo Clinic. It includes content from various Mayo Clinic blogs, health and medical videos from Mayo's YouTube channel and links to news articles about Mayo Clinic research and treatment advances, along with a member discussion forum. Clearly the e-patient is here and it wont be long before other medical centers will begin offering programs similar to what Mayo Clinic and Patients Like Me are offering. In fact, if you want to know how your hospital is doing as far as social networking, check out Found in Cache: Social Media resources for health care professionals.

With the Patients Like Me study now being published, and providing very valuable treatment information at a fraction of the cost and in a very timely manner compared to current clinical trials, expect to see more utilization of social networks to recruit volunteers, run studies etc.

Some take home points about being an E-patient:
• Keep a personal health notebook (be it on-line or written) and make sure you have “your data.”

• Participating in an on-line community can help you identify a variety of resources and treatments, to say nothing of emotional support. Don’t limit yourself to content sites only. Social networks are playing a very important role and will most likely play an even bigger one in the coming years.

• By sharing your data, as described in the Patients Like Me article, you can help to better determine what treatments might work for you as well for those with similar conditions.

• Use the same cautionary measures you would use on any social networking site (Facebook, Blog, Twitter etc.): Watch out for scammers; limit how much personal information that you share; be clear about what you want from the group.

• Share what you are learning with your medical provider. Many providers will welcome what you are learning, as they don't have the time to follow everything that happens on line.

Resources to check out:

• Health Central

• Shared Health Data: Design, Deliver, Better health with Your Own Information

• Patients Like Me: Includes 500+ conditions

• Society for Participatory Medicine The Society for Participatory Medicine is a 501(c)3 public charity devoted to promoting the concept of participatory medicine by and among patients, caregivers and their medical teams and to promote clinical transparency among patients and their physicians through the exchange of information, via conferences, as well through the distribution of correspondence and other written materials.

• e-Patients.Net Blog of the Society for Participatory Medicine

• Association of Cancer online Resources

• e-Patient Dave: A Voice of Patient Engagement

• Other on-line resources

Take a Break: Create Temporary Tattoos and Body Art

2011-07-27T04:04:00.000-07:00

One of the favorite activities of summer camp was making temporary tattoos on one another. While we would buy henna and stencils, I was always on the look out for cheap body paints (left over from Halloween). Sometimes I’ll find them at the discount stores, like Dollar Stores. Also be on the look out for cosmetic grade glitter and jewels.

Since my family are major soccer fans, we watch a lot of European events and the face painting is amazing. From the look of it, they use a lot of stencils and face painting stamps (usually made of rubber with a foam backing). While you can use stencils you may already have-they should be very flexible- you can also download free ones from the following sites:

• Free face painting stencils

• Free Stencils from All-About-Stencils

Keep in mind, whether it’s for face painting or a tattoo, just because something is labeled non toxic doesn’t mean that it belongs on your skin. Some things you might try:

• Mix food coloring with body lotion-I used the Wilton food coloring dye and a little goes a long way. Makes very rich color. Apply with a cue tip. Comes off with soap and water. You can also just use the dye by itself.

• Liquid eyeliner comes in a variety of shades and makes very interesting body art.

• Eye and lipstick pencils are good ways to outline design. Fill in with various types of make up, including lipstick and eye shadow.

• Some food stains, such as beets and blueberries.

There re are such things as sterile surgical skin marking pens, which can be ordered on-line as well as semi permanent tattoo pens. There is even tattoo paper you can use in your printer.

How to Make a Temporary Tattoo using Eye Liner

Medical Jargon Translator

2011-07-23T05:50:00.000-07:00

Several years ago, several friends and I went to visit a mutual friend who was very ill and heavily sedated. I had stepped out of the tiny room, to give some space for the other visitors, but went dashing back when one of the them was trying to sit the patient up and get her to drink water. My first reaction was to say “didn’t you see the sign on the door?” but I stopped myself. She very well could have, but she would have no way of knowing that the NPO sign meant “nothing by mouth.”

So to help you understand what a doctor or nurse is telling your, or if you want to just sound like a medical professional, try the following links:

MedTerms Medical Dictionary A- z List

Medical abbreviations of general interest

Medical Dictionary: This site also has a medical vocabulary tutorial.

Remember that there is no shame in not understanding what something means.

Take a Break: Stay Cool with a No Rush Day

2011-07-20T03:26:00.000-07:00

With a heat wave sweeping most of the country, it’s time for a “No Rush Day.”

I grew up in Baltimore, MD, where temps were easily 90 or more most days in the summer, plus lots of humidity. Besides swimming, my favorite way to beat the heat was to lie on a lounge chair in the shade and read. I’d eat M & M’s when they were available, which left my hands stained with red dye number 2 or something probably just as nasty. However, the combination of sounds (cicada and the occasionally bird), smells and heat would lull me into a bit of a stupor that was quite pleasant.

The adults, who were not at work, would do the majority of the shopping and chores in the morning, leaving the afternoon for naps, reading in the shade or in front of a fan, or catching up on more sedentary tasks like paying bills. The heat of the day was spent out of the sun, with curtains drawn to keep the sun from shinning in the house.

In the cool of the evening, the neighbors were out on the porches and kids ruled the street until the streetlights came on. One of our neighbors rigged it up so they could watch TV on their porch. Once it was dark, we’d lie on our backs stargazing or we’d have a special game of “kick the can.”

I’ve rarely lived with an air conditioner in my home, even in Baltimore. In Vermont, the weather, in my view, has never been hot enough to merit even a consideration of one. My kids would disagree. There is something so nice about just not doing too much as a way to stay cool.

My idea of a perfect “no rush day,” is head to the beach, lake or pool where there is hopefully, a good breeze and cold water to jump in and out of. If that’s not an option, consider the following:

Make Ices and/or Popsicles: My Mom would make lemonade, pour it into a pan and stick it in the freezer, for us to enjoy in the evening. We would sneak in during the day and take a fork and “shave it.” We had never heard of granatas, but we knew that we liked putting our head in the freezer, and loved the pieces of shaved ice that resulted from the “raking.”

There are all sorts of inexpensive Popsicle molds on the market, including some you can pick up in the Dollar Store. Pour juice, tea, coffee or whatever flavor suits you and freeze. Ice cube trays work, as do the small paper bathroom cups.

For recipes and other idea check out 50 Amazing Homemade Popsicle Recipes and Ideas.

Drink Cucumber Water: Just cut up a cucumber and place in a large pitcher. Add water and ice. Very refreshing. You can also add lemon.

Skip the stove: Eat small meals that don’t involve cooking-salads, watermelon, and sandwiches or go out for a meal. Spicy foods are very popular in hot climates. Many swear that eating hot cools them down. Try a spicy salsa and chips and see how it works for you.

Use a fan to cool down: Even air condition after a while can feel hot. Adding a fan, to circulate the air, will make you feel cooler. Remember to turn it off if you aren’t in the room.

Spray yourself: Keep a spray bottle of water in the refrigerator. When you are particularly hot, say just coming in from outside, spray your face.

Catch a Matinee: In the heat of the day, chillin’ at the movies is a nice way to stay cool.

Cool your pulse points: Running your wrists under cold water, sticking your feet in the kiddies pool; and wrapping one of those Australian cooling ties around your neck are great ways to cool off.

Lie in a hammock and read a cool book: This maybe the time to read “Into Thin Air,” about the Mt. Everest expedition. “The Long Winter” by Laura Ingalls Wilder is a good read aloud with kids. If you are into snow sports, catch up on your ski magazines. Check out Cold Cases: Icy Books Offer Relief from the Heat.

Think cold: There are lots of movies out there with winter themes that can provide some chilly thoughts.

How to Respond when you learn that someone is ill or injured

2011-07-16T03:48:00.000-07:00

At a party this week, a group of us were talking about gift cards and how we used them. I was saying about how helpful they were when someone was sick or injured. One of the women said, “can you put this in writing and e-mail it around? This is something we all experience at some time or another.” So here is my response to that request:

If someone has been newly diagnosed with a very serious illness or is injured, this can be a difficult time for the person and those closest to them. Whether they are a close friend, a work colleague, a friend’s parent or sibling, or even a neighbor, sending a card with a gift card enclosed is very helpful. As one person at the party pointed out, “cash can just get spent so quickly, that it’s sometimes better to give a gift card for something you know they’re going to need.”

Types of Gift Cards to Enclose:
• Gas: Traveling back and forth for hospital visits, doctor’s appointments etc. can be very costly.

• Local Pharmacy: Most likely medications and other items will be needed.

• Food Store: People do have different tastes, so giving them a card for their local grocery store lets them make the choice. Besides, many stores have “to go” departments.

• Restaurants: Select ones that the person likes, they can access easily and have a “to go” menu.

• Master/Visa Cards: You can purchase these type of cards for selected amounts.

There are many things you can do to help out at home. A friend once told me how, when her husband was dying, her brother came once a week and took the trash to the transfer station. She never had to ask, he just took care of it. There are a variety of these types of tasks that can be done, such as mow the lawn; tend the garden; plow the drive and walk after a snow; clean, or pick up mail and the newspaper. If you are a neighbor, watching the house can be a big help.

If there are children or other family members that need to be cared for, such as an elderly parent, offer to help by babysitting, picking kids up from school, having them at your house etc.

Certain situations have unique requests, such as donating blood or signing up as a bone marrow donor. You may not be in a position to donate, but you can help make donations possible, by organizing blood and donor drives, providing transportation to those who need rides and/or making food for the events.

Then there is the question of stopping by, calling or e-mailing to find out how the person is doing. There are no rules on this score, but everyone seems to have an opinion about it. Some people want to be left alone, and for others, they gain support from each person that calls or stops by. Some need the opportunity to talk about the situation, and for others the exact opposite is true. What you may think you would want in a particular situation may not be right for them. You can try contacting people closer to the situation than you are and ask if they are taking phone calls or want visitors. Use your best judgment.

One of the most helpful things a community can do in these situations is organize their response. This can now be done for free and quite simply by creating a Lotsa Helping Hands website. With the approval of the family and/or person injured or ill, a site can be established very quickly, ” Lotsa Helping Hands is a private, web-based caregiving coordination service that allows family, friends, neighbors, and colleagues to create a community to assist a family caregiver with the daily tasks that become a challenge during times of medical crisis, caregiver exhaustion, or when caring for an elderly parent. Each community includes an intuitive group calendar for scheduling tasks such as meals delivery and rides, a platform for securely sharing vital medical, financial, and legal information with designated family members, and customizable sections for posting photos, well wishes, blogs, journals, and messages.

For the person who is injured/ill, check out Unique Gifts for Hospitalized Patients.

This is a very stressful period, so don’t expect a thank you note, or even a recognition of your efforts. Do what you can, but don’t give to the point that you start to become resentful that your efforts are “not appreciated.”

Take a Break: Make Bubbles

2011-07-13T03:58:00.000-07:00

My good friend’s birthday was this past weekend and I decided bubbles were in order. However, I didn’t have any wands or bubble mixture, or the time to get either. However, I remembered my mother making us a bubble mixture out of dish washing liquid (Joy, Dawn) and water. She didn’t add glycerin or white corn syrup, but the ratio always seemed to be a lot of water to a little bit of the washing liquid.

I should mention that years ago, at a music festival, I saw I Tom Noddy of Bubble Magic fame make a square bubble. I was hooked. I spent quite a bit of time working at duplicating his tricks, but gave it up since it involved cigarette smoke. Fortunately, Noddy is still at it but has figured out a way to use a tiny fog machine to give the same effect.

But back to Saturday’s bubble experiments. It was time for a bit of R & D. I took a plastic lid and squirted a little dish detergent (do not use dishwasher liquid as that is designed to decrease bubbles) and a lot of water. The ratio is usually around 1 part liquid to 15 parts water, but I didn’t measure.

All I needed was the wand. I found the coolest one to make from two sheets of paper at the Bubble Town website. It’s basically making a tube-looks like a mini horn of plenty, which I tapped off with a sliver of duct tape. Most people would use regular tape, but I have more duct tape in my office than the other stuff. Well, if you must know, I make a lot of stuff out of duct tape.

I dipped my “wand” into the mixture and blew the biggest bubble I’ve ever made. The downside of the paper wand is that you do have to let it dry. However, try other items you might have in the kitchen, like a funnel, an empty juice can or yogurt container cut into rings (make sure the edge is smooth), cookie cutter, etc.

The Bubble Town website mentioned that if you let the bubble mixture sit, it gets better over time. I’ve been trying it at various points for the last forty eight hours and I discovered two things, you can’t blow bubbles and be angry or ticked off about anything-it’ll make you laugh, and the longer the mixture sits the better it gets. I finally washed my lid on Monday, having made the biggest and best bubble of all. My number one fan, our dog, loved it and of course needed to “nose it.” You can imagine what followed.

You can add food coloring to the solution and make colored bubbles. The downside is that it will leave a stain when it pops. However, you could lay down a piece of paper, blow colored bubbles, and end up with a cool art project.

So create your own bubble magic today using what you have around the house.

Homemade Bubble Solutions: Lots of different recipes to try.

Antigravity Bubbles (video)

Long Lasting Bubbles: This looks like a very cool project, but I haven’t tried it yet.

Bubble wands out of Pipe Cleaners

Bubble Magic

Should I Try a Clinical Trial?

2011-07-09T04:34:00.000-07:00

In order to see if a medication or a treatment will work, prevent a disease or even eliminate side effects of existing treatments, researchers test it out. There are different types of clinical trials, but the focus of this post is to help you decide whether to do a study where a new treatment (medication, surgical or other type of intervention) for your condition is being studied.

The pluses of participating in such a clinical trial include:
• It could result in a cure and/or improve how you feel and function
• You will be helping others
• You may get more medical attention while you are in the study
• Medical care costs and the experimental treatment will often be covered
• You may have access to treatment that would not otherwise be available.
• It may expand your treatment options
• You may feel you have more control over your situation by taking such an active role

The downsides, or risks, are quite real. These may include:
• Side effects can be serious and could even make you feel worse than you already do.
• If this is a placebo controlled study, or one trying several different regiments, you may not receive the experimental regiment
• It may require travel, and time (such as more doctor and lab visits) that could not only be inconvenient but could also be wearing on you.
• Insurers may not cover all of the costs of taking part in a clinical trial, but they should pay for normal or standard care.

Before deciding whether a particular clinical trial is one you want to participate in, you will need to meet the study requirements. These will be quite specific, including such things as your age, gender, diagnosis, prior treatment etc.

Sometimes providers will suggest studies to patients, other times, people will learn about them from support groups or looking on-line. To find out about clinical trails that you may qualify for, talk to your medical provider, check your medical center’s website, and check Clinical Trials.gov

If you qualify for a study, consider the questions below. To help you in the decision making process, rate each question with a plus –a good reason to participate-or a minus-a reason not to participate. When you finish, add up the pluses and minuses and see which seems to be the best option for you.

• Who is conducting the research?
• What is its purpose? What are the potential short and long term benefits?
• What has your doctor told said about your condition and what the future holds? Could your participation impact this?
• Has the treatment been tested before? If yes, what did the research show?
• How are trial results and patient safety being checked?
• Is there a research site close to where you live? Would you have to travel? Is so, would this present a problem?
• Would you have to change providers to be part of the clinical trial? Who would be in charge of your care? Your long-term care?
• What are the side effects of the treatment? How could they affect your life? Does it require hospitalization? Can you continue to take your current medications or engage in complimentary and alternative therapies that you may be using?
• Can you leave the trial at any time?
• Are there costs involved in the trial, such as having to pay for travel, meals if away for extended periods of time? Will these associated costs be picked up by the clinical trial?
• How long will the trial last?
• Could the trial impact current treatment you may be receiving?

Keep in mind that all clinical trials are voluntary. Do not be talked into something that you are not comfortable with and be sure to discuss your concerns and choices with your medical provider.

Resources
Clinical Trials: What You Need to Know from the American Cancer Society: This site provides easy to read and understand information about clinical trials. While the focus is cancer treatment, the basic information applies to any condition.

FDA Basic Questions and Answers About Clinical Trials

Clinical Trials. Gov

Take a Break: Fruit Carving

2011-07-06T03:44:00.000-07:00

It’s been hot where I live and so I have little interest in turning on my stove, or even cooking for that matter. I tend to gravitate to fruit, which has recently made me start thinking of fruit carving.

I can use a melon baller just fine, and take larger pieces of fruit, such as a melon or pineapple slices and cut with a cookie cutter, but I wanted a bit more zip to my fruit. Don’t get me wrong, there is a lot you can do with a melon baller and a cookie cutter, particularly if you cut out an interesting shape with a cookie cutter and dip a portion of it in chocolate.

If you have a chance to see edible fruit arrangements, they will use a flower cookie cutter to cut pineapple or honey dew melon. They then use a melon baller to make the center of the flower using a different color melon, attachinh the ball to the center using a toothpick. What could be easier?

So get out your pumpkin carving kit, and/or sharp knife with a point, some skewers and tooth picks and use the links below to create some amazing centerpieces as well as keep you amused for hours if you like.

Thai Fruit Carving video

Thai Carving using fruits, vegetables: Includes 16 different designs. Very clear instructions, with step-by-step pictures.

Chocolate Covered Strawberry Roses

Carving Fruit into Edible Arrangements Blog

Asia Recipes This link provides a nice overview of the types of fruits and vegetables to use for carving, how to prep them and ways to preserve them when finish. Step by step directions are provided for making a watermelon basket, apple leaf, simple white lotus cucumber garnish.

Video of roses with citrus peel

Unique Gifts for Hospital Patients

2011-07-02T02:36:00.000-07:00

Years ago my mother was hospitalized for close to a month. I started bringing her something small each day, which she looked forward to. However, after a few weeks I was running out of ideas and started asking everyone I knew for suggestions. Books, magazines and crossword puzzles only go so far.

Her favorite gift was a beta fish, which lived in a small glass bowl, only requiring feeding every other day. This kept her occupied for hours and entertained the staff as well. However, it is unlikely that most hospitals would allow such a “visitor” these days. One of the important aspects of the fish was that it gave her something she felt responsible for. After undergoing major surgery, one of her first concerns was whether “Darth,” her name for the fish, had been fed.

Studies have shown that nursing home patients do much better if they have a live plant they care for. If the person is in a part of the hospital that allows flowers and plants, giving them a plant to look after-not one that requires too much care though.

Before taking something to the hospital, check out rules and regulations about what’s allowed for the area of the hospital where the person is staying. Some parts do not permit cut flowers or plants. Balloons and silk flowers can help to brighten the room along with a special picture in such cases.

Feeling attractive brightens one’s mood, so providing a unique bed jacket, shawl, bathrobe or slippers can do a lot to boost someone’s morale. Old Navy will often have seasonal pajama bottoms and colorful socks that can be fun. A basket of toiletries can be very welcome, particularly if they had to leave suddenly for the hospital and don’t have their preferred toothpaste, lotion, lipstick etc. Be careful about scents as some people are allergic to them.

Take a Break: Having something to do is critical. Using Wednesday’s “Take a Break Day” posts are a good way to have unique projects for them to do. For a quick overview from August 2009 to November 2010, go to the Take a Break Archives. Some of these will be fun projects to do together, which can make the visit a bit more fun for both of you.

Art Kit: You might want to make your own “art kit” for them by including markers, colored pencils, special paper, scissors, tape and even some copies of mandalas for them to color.

Craft Kits: These aren’t for everyone, but if they like to make things, picking up a small craft project from stores like Michael’s or Joann’s can be a lifesaver. Some people can spend all day happily making beaded bracelets or crocheting a hat. If you think it’s a good fit, there are many different types of kits you can pick up. A set of uniquely colored and designed beads can occupy someone who likes to make jewelry for hours.

Puzzle books are entertaining and exercise the brain as well. Many hospital gift shops will contain a variety of such books. However, check out your local bookstore, or even used book store, as many of them have such books on the bargain sale rack. Minute mysteries can keep one occupied for hours.

Comfort Items: Providing items like a special pillow and lotion can help to ease the time in bed. For many, comfort food is a must. Whether it’s a sandwich from the favorite deli, organic chocolate, or that special Mac and cheese that only you can make, having food other than the hospitals is a welcome change. Be sure to check first about bringing in food as some patients will be on special diets. An eye mask may be ideal for the patient that wants to sleep. If it’s something the patient can have, arrange for a massage.

Electronics: A laptop computer, iPad or even a Nook provides hours of entertainment, as well as a way to stay connected. However, these are expensive items so it’s not something you are most likely going to buy. However, some hospitals and libraries do offer iPad’s, or their equivalent, and electronic books on loan, so check out their availability. Keep in mind the toy section of your local big box store (e.g. Wal-Mart or K Mart) will have some portable electronic games, which can help pass the time.

Keep in mind that the staff can be as entertained by something you bring as much as the patient might be. If the staff stays an extra few minutes to talk about the new gift that’s arrived, it gives a lift to the patient.

Take a Break: Make It for the 4th

2011-06-29T02:40:00.000-07:00

Since July 4th is just a few days away, today is a good time to make some things for the holiday as well as test out a new recipe or two.

• Make a stand alone star as a center piece: It’s very easy and this web link has a template you can download. It’s basically cutting out to stars from card stock or another type of stiff paper-can always glue patriotic paper to card stock-and cut two stars. Make slits and interlock.

• Create Your Own Fireworks” Here's your chance to create your very own fireworks with music – just like the exciting display that lights up the sky in Washington, D.C. Made possible by PBS.

• Color a 4th of July Mandala: You can divide the mandala into fourths, and have four different people color a section. Put them together for an interesting design.

• Make Red, White and Blue Lemonade: There are a variety of ways to make this. The simplest is to make lemonade, not pink lemonade, and add strawberries (or raspberries) and blueberries.

• So did Betsy Ross make the first American flag? Are there more red or white stripes? Want answers to these questions; go to USA Flag Site and The Truth About Betsy Ross

For more ideas, go to last year’s post on activities for the 4th.

Dealing with Pain: Comfort Care

2011-06-25T04:10:00.000-07:00

This is the final post in the series on dealing with pain. The other two posts dealt with acute and chronic pain.

Depending on the individual, as well as diagnosis, treatment, side effects etc., people can experience a level of discomfort that can be very problematic. It can be pain, but issues such as shortness of breath, fatigue, constipation, nausea, loss of appetite, or difficulty with swallowing or sleeping, can compromise quality of life.

Both hospice and palliative care use the term “comfort care,” to manage pain and related symptoms that can accompany end of life, serious illness, and/or during the course of treatment. Note that this is different than a person under going surgery. The surgical and medical staff will manage this type of pain.

Both hospice and palliative care have the common goal of improving quality of life and both help the person and their family deal with end of life issues and bereavement. However, there are some key differences between the programs.

Hospice is provided when a person is expected to die within six months and the only treatment provided will be comfort care. Palliative care provides similar comfort and pain control measures but allows the patient to pursues active treatment for their condition. There is no time constraint with palliative care. Medical centers as well as home health/visiting nurses provide palliative services for a variety of conditions such as ALS, MS as well as cancer. While some hospitals do provide in-patient hospice, and there are free standing hospice facilities in various parts of the country, the majority of people receiving hospice are at home and receive care via home health/visiting nurses.

Because people respond differently to treatment, as well as their specific condition, comfort care is very individualized. For example, hospice provides a “comfort care pack” that is placed in the refrigerator to be used as needed. This pack will contain the basics for controlling pain and some of the more frequent side effects, such as constipation and nausea. Based on the diagnosis and the particular needs of a patient, there could be a variety of other treatment options, such as anti seizure medications for a patient with brain cancer.

Even though hospice care is highly regarded by patients, family and medical providers, for some the implications of being a hospice patient, recognizing that they are dying, is not something they are ready to accept. In such situations, palliative care is an excellent option, as pain and symptom control are key goals of both programs. Further, if the person is at home, a good working relationship can be established with the visiting nurses. Often times the staff for palliative care is the same one for hospice, so a smooth transition can occur if the person switches to hospice.

Regardless of diagnosis or life expectancy, pain and other symptoms can quickly destroy quality of life, thereby impacting not only daily living but also life expectancy/. A study of 151 patients with metastasis lung cancer were randomized to have monthly visits with palliative care and routine cancer treatment or just routine cancer treatment found that those receiving palliative care not only lived longer, but had much better pain control, fewer hospitalizations, less anxiety and depression. New England Journal of Medicine

Resources
Dealing with Pain: Acute

Dealing with Pain: Chronic

Get Palliative Care

Caring Connections

National Hospice and Palliative Care Organization

Take a Break: Make Stars

2011-06-21T21:08:00.000-07:00

For the past several days, I’ve been making stars for our Old Home Day sandwich poster boards. Old Home Day arrives just in time for the 4th of July. Hence, red, white and blue stars. Since we seem to be specializing in rain this summer, and I’m not the best painter, I needed to make them out of something that was weather resistant and would adhere to the sandwich board. And the solution? But of course, duct tape!

These are very simple to make. Take a piece of baking sheet paper-note, wax paper doesn’t work-and put down strips of overlapping red, white and blue duct tape. This type of paper is readily available where you buy lunch bags, saran wrap etc. If you are really good at cutting things out, cut out a star. I needed a bit of an assist and found a star cookie cutter to be the perfect size. You can also make a five-pointed star and use that as your template.

If you are going to trace a shape, trace it on the opposite side of the baking sheet paper from where you put the duct tape. Since I had strips of tape left over after cutting out my stars, I just peeled them off and re layered them to cut out another star. I liked the various colors and designs from layering.

With the 4th of July less than two weeks away, here are some suggestions for making more stars.

• Star mobiles

• 3-D Stars

• Make a star shaped cake using round cookie pans

• Folded origami “puffed star” These are perfect for making star earrings.

And last but not least, don’t forget to “wish upon a star” tonight. If it’s cloudy, you can always enjoy Louie Armstrong singing and playing his trumpet to the Disney Classic. If Louie doesn’t do it for you, try one of the following:

Julie Andrews

Josh Groban

Michael Jackson

Billy Joel

Linda Ronstadt

Gene Simmons

Dealing with Pain: Acute

2011-06-18T05:21:00.000-07:00

In the continuing series on pain, this week’s post is on dealing with acute pain.

Acute pain is usually described as occurring less than 30 days. It can be the result of an injury, surgery, an underlying health problem, dental work, medical treatment etc. The pain itself can be sharp and localized, a dull ache or pressure, or a burning, tingling sensation. It may be constant or come and go.

People with acute pain may worry and fear:
• Becoming addicted to drugs
• Developing a chronic pain problem
• Whether there is an effective way to control their pain.

If you are having/had surgery, or are being treated for cancer, know that pain can be managed. Talk to members of your care team before surgery or treatment. Put a plan in place sooner rather than later.

Understand the source of your pain. Different situations call for different treatment approaches. If you’re in pain but don’t know the reason, see you medical provider, or even go to the emergency room if you have chest pain, a severe headache and/or stiff neck and/or pain accompanied by weakness or numbness.

In trying to identify what the source of pain might be, think about changes you may have made in exercise, diet, shoes, clothing, or habits. Keeps in mind that not doing regular exercises or not eating the right diet can cause headaches, knee aches and more. In WebMD’s Slideshow on “Surprising Reasons You’re in Pain” the solutions are often obvious but easily overlooked.

In preparing for a medical appointment, you will want to make note of the following:
• Where the pain is located and what it feels like (stinging, sharp, dull, cramping, numb, throbbing, aching, shooting etc.)
• How often do you have it and if there are things that make it worse or better? For example, if you run for more than a mile your right knee hurts.
• How much does it hurt? You will be asked to describe pain intensity. On a scale of 1 to 10, with one being no pain and 10 the worst ever, how would rate the pain?
• Have you experienced something like this before? How was it treated?
• Discuss pain control methods that you have used. What’s worked, what hasn’t?
• Be sure to list all medications currently being taken. Interactions can happen, and some medications can lessen the effects of the pain treatment.

Once you pinned down the source of your pain, take action. This may include:
• Prevention measures such as controlling stress, not becoming overly tired, staying with your stretching or exercise regiment (I kinda stopped doing my hip exercises and now my knee is paying for it.) dietary restrictions etc.
• Taking medication as prescribed (non-steroidal anti-inflammatory drugs-ibuprofen and aspirin, acetaminophen-Tylenol corticosteroids, narcotics-morphine, codeine, oxycodone.
• Treatments such as neural blocks, physical therapy, TENS units, local anesthetic
• Listening to your body-biofeedback
• RICE (rest, ice, compression, elevation) usually recommended for sprains, strains, muscle pulls or tears.
• Art, music, positive thinking and prayer

If you are on a pain medication:
• Take as prescribed. Don’t wait until pain becomes severe. Pain is easier to control when it is mild.
• If you are concerned about addiction, talk to your provider about what they are prescribing.
• If you are on pain medication for an extended period of time, your body may get use to it so you may need an adjustment to how much and when you take it.
• Know the side effects. You can control constipation by drinking lots of fluids (water, juice), eating more fruits and vegetables, and exercising. Your provider may recommend or prescribe a stool softener or laxative. Nausea and vomiting can be controlled with additional medication or a switch in regiment. Sleepiness is common, so do not drive or operate machinery while on these medications. If you find your breathing becomes slower, talk to your provider.

Keep in mind the following about pain:
• It is individualized. You are the best judge of what you are experiencing.
• It can cloud your thinking. This is not the time to making major decisions if at all possible.
• It can wear you down.
• Treated promptly and properly, it not only makes you feel better and heal quicker, it can also help to keep it from becoming a chronic problem.

Resources
Dealing with Chronic Pain: This post includes a list of the pain organizations.

Pain Treatment Guidelines

Take a Break: Plan a Staycation

2011-06-15T03:18:00.000-07:00

When the budget doesn’t allow for a vacation, or you don’t want to spend hours looking for the best deals on airfares and hotels, consider the “staycation,”-vacationing at home.

For some people, the intensity of travel alone ruins various aspects of the vacation. The goal of time away is that you come back refreshed and not in need of additional time off to recover. While there are unique features to your get away spot, what are those things that you do on vacation that recharge you? Is it possible to incorporate them into a staycation? Ideas to consider include:

• Turn off the electronics. Set the automatic reply message to “away, will be back on ___.” No one needs to know you’re around. In fact, if people know your vacationing at home, they may not take you serious and call with work issues. Ideally, turn off the phone and cell phone. If you were on a sailing trip in the middle of the Chesapeake Bay, shooting rapids on the Colorado, hiking in Yosemite, or swimming in the Atlantic, you wouldn’t be dealing with phone calls.

Since so many people can’t bear to be away from their computer or cell phone, try to minimize listening to messages or reading e-mail to once a day.

• Leave work at work. You’re on vacation.

• One of the joys of being away is food-trying new eateries and cuisines, cooking with family and friends, trying new recipes. All are possible in your own kitchen and community.

• Sleep in. Stay up late. Try sleeping in a different room or even pitch a tent outside.

• Read a good book, watch a movie, and sit for hours over the kitchen table talking with your family and/or friend(s), play board games

• Do what you want to do.

• Have a PJ day, where you don’t bother to get out of your pajamas.

• Throw a spontaneous cocktail or dinner party. Have a picnic.

• Fly a kite.

• Pretend you are a visitor in your own community. Visit such places as:
- local museum(s)
- farmer’s market, county fair
- historic sites
- amusement park
- someplace with water-beach, pond, lake or if all else fails, local swimming pool
- parks
- science center
- sports arena or stadium
- zoo

Check newspapers and on-line information about your town for more staycation ideas and to take advantage of “specials.”

• You can also do things like watch the birds, go for a self-guided walking tour of your town, take a drive, or bike ride

• Learn something new. Take a class in something that’s of interest, be it golf or a jewelry making course at a craft school. You can always check the weekly “take a break” features of this blog for something new to try.

Since you are saving money by not going away, don’t hesitate to treat yourself to some special treats, such as enjoying a spa day, arranging for someone to clean your house, dinner out, spending a night in a local luxury inn or resort, going to a sporting event etc.

Your staycation is not the time to clean out drawers, paint the house or do some other chore you are putting off, unless you find this a very relaxing activity.

Finally, since this is a blog for those with chronic conditions, whether it’s a staycation or vacation, taking a “drug holiday” isn’t recommended unless you’ve discussed it with your medical provider.

Dealing with Pain: Chronic Pain

2011-06-11T07:51:00.000-07:00

As pain is a major issue for many living with chronic disease, the next several posts will explore the different types of pain and what strategies are yielding results.

Today’s focus is on chronic pain, which can accompany an illness or injury, or it may be a disease unto itself. The National Institutes of Health, in their definition of chronic pain, states chronic pain persists. Pain signals keep firing in the nervous system for weeks, months, even years. There may have been an initial mishap -- sprained back, serious infection, or there may be an ongoing cause of pain -- arthritis, cancer, ear infection, but some people suffer chronic pain in the absence of any past injury or evidence of body damage. Many chronic pain conditions affect older adults. Common chronic pain complaints include headache, low back pain, cancer pain, arthritis pain, neurogenic pain (pain resulting from damage to the peripheral nerves or to the central nervous system itself), psychogenic pain (pain not due to past disease or injury or any visible sign of damage inside or outside the nervous system). A person may have two or more co-existing chronic pain conditions. Such conditions can include chronic fatigue syndrome, endometriosis, fibromyalgia, inflammatory bowel disease, interstitial cystitis, temporomandibular joint dysfunction, and vulvodynia. It is not known whether these disorders share a common cause.

One of the best descriptions of what chronic pain is, causes and treatments I’ve seen of late comes from Elliot Krane MD, the director of Pain Management Services at Lucile Packard Children’s Hospital at Stanford. Recently he spoke at the TED Conference about “The Mystery of Chronic Pain.” He said Now most of the time, you think of pain as a symptom of a disease. And that's true most of the time. It's the symptom of a tumor or an infection or an inflammation or an operation. But about 10 percent of the time, after the patient has recovered from one of those events, pain persists. It persists for months and oftentimes for years. And when that happens, it is its own disease.

…. How can the nervous system misinterpret an innocent sensation like the touch of a hand and turn it into the malevolent sensation of the touch of the flame. Well you probably imagine that the nervous system in the body is hardwired like your house. In your house, wires run in the wall, from the light switch to a junction box in the ceiling and from the junction box to the light bulb. And when you turn the switch on, the light goes on. And when you turn the switch off, the light goes off. So people imagine the nervous system is just like that. If you hit your thumb with a hammer, these wires in your arm -- that, of course, we call nerves -- transmit the information into the junction box in the spinal cord where new wires, new nerves, take the information up to the brain where you become consciously aware that your thumb is now hurt.

But the situation, of course, in the human body is far more complicated than that. Instead of it being the case that that junction box in the spinal cord is just simple where one nerve connects with the next nerve by releasing these little brown packets of chemical information called neurotransmitters in a linear one-on-one fashion, in fact, what happens is the neurotransmitters spill out in three dimensions -- laterally, vertically, up and down in the spinal cord -- and they start interacting with other adjacent cells. These cells, called glial cells, were once thought to be unimportant structural elements of the spinal cord that did nothing more than hold all the important things together, like the nerves. But it turns out the glial cells have a vital role in the modulation, amplification and, in the case of pain, the distortion of sensory experiences. These glial cells become activated. Their DNA starts to synthesize new proteins, which spill out and interact with adjacent nerves. And they start releasing their neurotransmitters. And those neurotransmitters spill out and activate adjacent glial cells, and so on and so forth, until what we have is a positive feedback loop.

It's almost as if somebody came into your home and rewired your walls, so that the next time you turned on the light switch, the toilet flushed three doors down, or your dishwasher went on, or your computer monitor turned off. That's crazy, but that's, in fact, what happens with chronic pain. And that's why pain becomes its own disease. The nervous system has plasticity. It changes, and it morphs in response to stimuli.

Well, what do we do about that? …We treat these patients in a rather crude fashion at this point in time. We treat them with symptom-modifying drugs -- pain-killers -- which are, frankly, not very effective for this kind of pain. We take nerves that are noisy and active that should be quiet, and we put them to sleep with local anesthetics. And most importantly, what we do is we use a rigorous, and often uncomfortable, process of physical therapy and occupational therapy to retrain the nerves in the nervous system to respond normally to the activities and sensory experiences that are part of everyday life. And we support all of that with an intensive psychotherapy program to address the despondency, despair and depression that always accompanies severe, chronic pain.

The future holds the promise that new drugs will be developed that are not symptom-modifying drugs that simply mask the problem, as we have now, but that will be disease-modifying drugs that will actually go right to the root of the problem and attack those glial cells, or those pernicious proteins that the glial cells elaborate, that spill over and cause this central nervous system wind-up, or plasticity, that so is capable of distorting and amplifying the sensory experience that we call pain.

If you are living with chronic pain, the following steps can help put you on the path to relief. Keep in mind that everyone is different and it may take some trial and error to find the best approach for you.

Step 1: Assess whether you are dealing with a chronic pain problem. The Mayo Clinic’s Pain Rehabilitation program provides a series of questions to ask yourself about whether the pain is sufficient for you to make a commitment to a pain rehabilitation program. These questions are a good way to also determine if in fact you are dealing with chronic pain. These questions include:
• Is my life focused on pain or other symptoms and what I am not able to do, rather than what I am able to do?
• Are my doctors telling me there is nothing further they can do to relieve the pain/symptoms? Do they tell me I need to get on with my life?
• Am I truly concerned about the long-term effects of taking pain medications?
• Is my family's well-being affected because of my impaired functioning?
• Is my recovery from injury or illness taking much longer than my doctors or I expected?
• Am I not able to commit to social events with family or friends because my pain/symptoms may be worse that day?
• Is my mood affected by pain/symptoms and activities I am not able to do?
• Has my attendance at school/work been affected?

Step 2: If you haven’t already done so, see a medical provider and determine if there is an underlying issue that might be contributing to your pain. Surgery or other treatment may effectively treat the problem. If there is no root issue that can be dealt with, most insurance companies will require a 3 to 6 month existence of chronic pain before they will pay for a pain program.

Step 3: If you have a pain issue relating to a condition, such as fibromyalgia, arthritis, vulvodynea, Lyme Disease, get in touch with the condition specific organization, e.g. the American Arthritis Association. These groups will have information on pain management. In addition, they can help direct you to support groups, in-person and on-line, where you can talk to others about what has worked for them.

Step 4. Enroll in a pain program/Pain rehabilitation. Many hospitals offer pain clinics and some will offer in patient rehabilitation programs. While there are differences, almost all will offer some form of the following:
- Medications (nonsteroidal anti-inflammatory drugs, such as Motrin or Aleve; non-aspirin pain relievers, such as Tylenol; corticosteroids; antidepressants) It is important to note that many pain programs take people off medications as they find the meds can be part of the problem. Further, if you have several other medical conditions, medication management can become problematic.
- Injections, nerve blocks, electrical stimulation
- Physical therapy
- Complementary and alternative medicine (CAM): Acupuncture, massage, Reiki, relaxation and stress management techniques
- Psychology support and counseling
- Case management and social services

Because pain programs can differ, be sure to ask about their success rate in treating people with your specific issues.

Additional Resources
• Mindfulness Based Stress Reduction (MBSR): Developed at the University of Massachusetts Medical School by Dr. Jon Kabat-Zinn in 1979, programs are now offered all over the world. The eight week course has been proven to significantly improve stress, pain and illness. Sessions are usually once a week for two and a half hour s per week and one all day session. The program usually lasts for eight weeks. Many pain clinics offer MBSR.

• American Pain Foundation an online resource for people with pain, their families, friends, caregivers and the general public. This site is devoted to patient information and advocacy, and provides many links to additional resources.

• American Pain Society a multidisciplinary community that brings together a diverse group of scientists, clinicians and other professionals to increase the knowledge of pain and transform public policy and clinical practice to reduce pain-related suffering.

• National Pain Foundation Treatment Options, Personal Pain Inventory, Personal Pain Journal, Links, Education, Support, etc.

• American Chronic Pain Association

• American Chronic Pain Association’s Consumer Guide to Pain Medication and Treatments 2011

• WebMD’s Pain Management Health Center

Take a Break: Make a Piñata

2011-06-08T03:03:00.000-07:00

It’s finally summer in Northern New England. Homemade salsa and chips are everywhere and it made me think of how much fun it is to make and break piñatas.

Interesting though, piñatas probably came from China. Marco Polo discovered the Chinese fashioning figures of cows, oxen or buffaloes, covered with colored paper and adorned with harnesses and trappings. Special colors traditionally greeted the New Year. When the mandarins knocked the figure hard with sticks of various colors, seeds spilled forth. After burning the remains, people gathered the ashes for good luck throughout the year. History of the Piñata from Mexoconnect

10 Easy Steps for Making a Piñata.

Step 1: Figure out what you’d like to use your piñata for. With the 4th of July just around the corner, a patriotic themed one would be fun. I’ve been having ideas of using various tube shapes from toilet paper, paper towels or even a Pringle can to make a chain of firecrackers. Of course, anything with a balloon shape-fish, star-is just fine.

Step 2: Once you know what you want to make, either make the shape from cardboard (cereal boxes work well for this) or blow up a balloon. If you’ve never done this before, start with a balloon project.

Step 3: Rip up lots of newspaper into strips.

Step 4: Make your paste. I use combine flour and water, stirring the water into the flour until it makes a good paste-runny is better than globby.

Step 5: Dip your strips of paper into your paste mixture and start laying them on your base shape. It’s best if you let dry between layers, but I admit that I’ll add several layers before letting it dry. Hair dryers work to speed up this process. Once you have two layers dried, take some wire or rope and wrap it around your model so that you will have a way to hang the piñata when it’s finished. Keep on layering your paper mache until you have sufficient layers. The more layers, particularly if you use a cardboard shape, the harder it is to break.

Step 6: Cut a slot so you can put candy or other items inside.

Step 7: Decorate. You can use paints, glue on strips of paper, streamers, gems or whatever appeals to you. Glue guns, tape, glue sticks and even Elmer’s all work well. One year my husband made a virus piñata by gluing ping pong balls all over an oddly shaped blob that started out with a balloon.

Step 8: Fill with candy or other goodies and seal up the hole you made in step 6. You don’t have to use candy. Think of different things, such as confetti, gift certificates, tiny but fun gadgets, party favors etc. I’d like to fill the 4th of July piñata I’ve been thinking about with lots of firework type of things so that as soon as it is broken it would start sizzling like a real firecracker. Since there children that will be present, I figure I’m safer with candy and red, white and blue confetti.

Step 9: Hang your piñata so that you can change the height depending on the age of the person welding the stick. You can use any sort of stick-broom handle, cane-just make sure it doesn’t have any splinters.

Step 10: Blindfold the person and spin them a time or two before steering them to the piñata. Wack! Enjoy the contents.

For more ideas on making piñatas, check out the following websites
How to Make a Piñata: Video -Good basic instructions

Making Piñatas: Celebration Mexican-Style in North Louisiana-This is step by step instructions on making a seven pointed star piñata.

Journal/News Watch 6/5/11

2011-06-05T03:59:00.000-07:00

WHO Says Cell Phone Use “Possibly Carciongenic:” Using a mobile phone might increase the risk of developing certain types of brain tumors and consumers should consider ways of reducing their exposure, World Health Organization (WHO) cancer experts said on Tuesday. A working group of 31 scientists from 14 countries meeting at the WHO's International Agency for Research on Cancer (IARC) said a review of all the available scientific evidence suggested cell phone use should be classified as "possibly carcinogenic." Reuters

Cancer Costs Highest for Individually Insured: One of every seven cancer patients spends more than 20 percent of his income on health care and insurance, according to a new study from federal researchers. Among these patients, those who buy private insurance on their own - instead of through an employer - pay the most out-of-pocket for their health care, compared to patients who have other forms of insurance or none at all. Journal of Clinical Oncology, online May 31, 2011

My Plate Replaces Food Pyramid: "My Plate" — a simple circle divided into quadrants that contain fruits, vegetables, protein and grains — will replace USDA's food pyramid, which has been around in various forms since 1992. The new symbol, unveiled Thursday at the department with first lady Michelle Obama in attendance, is simple and gives diners an idea of what should be on their plates when they sit down at the dinner table. Gone are any references to sugars, fats or oils, and what was once a category called "meat and beans" is now simply "proteins." Next to the plate is a blue circle for dairy, which could be a glass of milk or a food such as cheese or yogurt.

Cholesterol Drugs Tied to Lower Prostate Cancer Risk: Men taking cholesterol-lowering medication may be less likely to get prostate cancer than those not on the drugs, suggests a new study. They are also less likely to wind up with aggressive versions of the disease, researchers found. The Journal of Urology, online May 14, 2011.

Omega 3-fats Linked to Lower Diabetes Risk: People who get plenty of omega-3 fatty acids in their diets may have lowered odds of developing type 2 diabetes, two new reports suggest. In one study, of more than 3,000 older U.S. adults, researchers found that those with the highest blood levels of eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA) -- two omega-3s found in fatty fish -- were about one-third less likely to develop diabetes over the next decade than their counterparts with the lowest levels. In the other, researchers found that among 43,000 Singapore adults, those who got the most alpha-linolenic acid (ALA) in their diets had a decreased diabetes risk. ALA is an omega-3 fat found in certain plant foods, including flaxseed, canola oil and soy. American Journal of Clinical Nutrition, online May 18, 2011.

No Cancer Link with Blood Pressure pill: The Food and Drug Administration says there is no link between a popular group of blood pressure medications and cancer, despite a recent paper suggesting a slightly higher risk in patients taking the drugs. In an analysis of 60,000 patients published last summer, experts found a link between people taking medicines known as angiotensin-receptor blockers - Diovan, Micardis and Avapro- and cancer. The drugs are taken by millions of people worldwide for conditions like high blood pressure, heart problems and diabetic kidney disease. Associated Press

US Cancer Patients Face Barriers to Care: For newly diagnosed cancer patients, appointments with an oncologist are hard to come by -- even among those with private health insurance, according to U.S. researchers. The study found that in two-thirds of cases, research assistants posing as new cancer patients were unable to obtain an appointment with an oncologist for an initial exam. The findings, from a team at the Perelman School of Medicine at the University of Pennsylvania, are slated for presentation on Saturday at the annual meeting of the American Society of Clinical Oncology in Chicago.

Meditation May Help Women Cope with Hot Flashes: An easy-to-learn meditation technique can help ease the hot flashes, night sweats and insomnia of menopause, a new study says. The University of Massachusetts research showed that mindfulness training, based on a Buddhist meditation concept, reduced the distress associated with hot flashes and improved physical, psychosocial and sexual functioning. Menopause June

HHS to Reduce Premiums, Make it Easier for Those with Pre Existing Conditions to Get Health Insurance: Premiums for the Federally-administered Pre-Existing Condition Insurance Plan (PCIP) will drop as much as 40 percent in 18 States, and eligibility standards will be eased in 23 States and the District of Columbia to ensure more Americans with pre-existing conditions have access to affordable health insurance. The Pre-Existing Condition Insurance Plan was created under the Affordable Care Act and serves as a bridge to 2014 when insurers will no longer be allowed to deny coverage to people with any pre-existing condition, like cancer, diabetes, and asthma.

Yoga Helps Older Stroke Patients Improve Balance, Endurance: An Indiana University study that exposed older veterans with stroke to yoga produced promising results as researchers explore whether this popular mind-body practice can help stroke victims cope with their increased risk for painful and even deadly falls.

Significant Benefits of Yoga in People with Rheumatoid Arthritis Individuals with rheumatoid arthritis who practice yoga showed statistically significant improvements in disease activity, according to a small study presented at the EULAR 2011 Annual Congress.

Acupuncture of Benefit to Those with Unexplained Symptoms: A study of 80 adults, average age of 50, who had consulted their doctor at least eight times in the past year. Five element acupuncture had a significant and sustained benefit for those with unexplained symptoms. British Journal of General Practice http://www.sciencedaily.com/releases/2011/05/110530080513.htm
Many cancer survivors can’t shake pain, fatigue, insomnia, foggy brain: When people finish treatment for cancer, they want to bounce back to their former vital selves as quickly as possible. But a new Northwestern Medicine study -- one of the largest survivor studies ever conducted -- shows many survivors still suffer moderate to severe problems with pain, fatigue, sleep, memory and concentration three to five years after treatment has ended. ScienceDaily.

Get a Grip: Keeping Fear in Check

2011-06-04T03:45:00.000-07:00

For the past two Saturdays, I posted about the Millerites and the recent “Rapture,” as well as what happens when things don’t work out as planned or expected. In the “take home points” of last week’s post, the first bullet was keep “fear in check,” as fear plays a significant role in why people make choices that may not work out so well for them.

Fear is a common enough occurrence that I’ve written about it four different times on this blog, each time with a bit of a different twist. I suspect I will continue to write about it from time to time, as it shows itself in new ways.

My goal with this post is to try and summarize previous articles, listed below, and to explore some ways you can help to keep it in check. I’ve included various approaches as “one size doesn’t fit all.” You know what’s best for you.

So what’s our biggest fear? Americans include public speaking, heights, insects (cockroaches, snakes), financial problems, deep water, sickness, death, flying, loneliness, and dogs. Now compare that to humans living 11,000 years ago and earlier where survival meant knowing how to read the winds and smells and understanding if the shadow in the bush was a tiger or just wind. Needless to say, times have changed but our brains haven’t quite caught up with the 21st century. Our reaction to a dog shouldn’t be the same as it was for our ancient ancestors who had a saber tooth tiger eyeing him. Yet, we do cycle our fears much as if the local beagle is a snarling tiger who’d eat your heart out just as soon as look at you. In short, our brain circuitry needs an upgrade, which we are capable of doing through tools like mindfulness.

If you look at the list of fears above, fear of death, be it from falling from great heights, being bitten by a snake, dog or insect, flying, and deep water, is really the root issue of many of our fears. Financial problems, loneliness and public speaking are variations on this theme of loss. As realistic as your fears may be, know that you are not alone in them. Support groups, on-line or in person, are excellent ways to discuss them with people who understand. Individual therapy can also be helpful.

The Wake Up Cloud website has 33 Powerful Ways of Overcoming Fear…Right Now. One of the strategies the author recommends is Byron Reid’s The Works. Reid was in a severe state of depression and came out of it by recognizing that her negative thoughts were causing her considerable harm. In a flash of insight, Katie saw that our attempt to find happiness was backward—instead of hopelessly trying to change the world to match our thoughts about how it “should” be, we can question these thoughts and, by meeting reality as it is, experience unimaginable freedom and joy ..Loving What Is

What I like about “The Works” website is that it does provide enough information and tools to help you implement this technique if you think it might be right for you.

If you are thinking that it isn’t so much fear as it is stress, realize that stress is a milder form of fear. Left unchecked, stress can compound medical problems and create havoc.

What about moments of extreme fear or stress? One friend told me that when she realizes she’s out of control, she covers one eye. That seems to slow things down and helps her gain perspective. Another person focuses on the immediate environment-there are five birds outside the window, the tea kettle is boiling, the furnace just kicked in, my office mate is wearing a new perfume etc. Create mindfulness reminders to help you remind yourself to be present and not lost in thoughts. Maybe one of the most helpful things is to remind yourself that thoughts are not facts.

Your child isn’t home from his friend’s house at the appointed hour. That’s a fact. Worrying that the child was kidnapped or run over by a truck is a thought. This is a false reality based on your thoughts. Chances are good that something else came up, like winning a new level on a video game, and they lost track of time.

Two weeks ago, many people were caught up in the idea that the end was near. Even thought it had no basis in reality, it caused considerable suffering for some people. Practicing mindfulness is a way to see the world as it really is, not one based on your thoughts and fears.

Additional posts on fear

Getting Perspective on Fear (understand why we are fearful and some strategies for coping).

Fear of Death

Fear in the Patient Provider Relationship

Fear How to Live with It

Recycled Art from Old Magazines

2011-06-01T04:46:00.000-07:00

While you may be well passed spring cleaning, for some of us that were still dealing with snow in early May, we’re just now getting around to hauling things to the transfer station, better known as “the dump.” Since our town doesn’t recycle paper, and I don’t always get to the town that does, they pile up. While I do try to drop them off at hospitals and waiting rooms, I still have a nice stack. So below are some various projects you can try.

Recycle magazines to those who might enjoy them: Besides medical and dental offices, consider dropping off magazines to any place that has a waiting room, as well as places like nursing homes, churches, prisons, senior center and even your local daycare center and school.

Magazine covers are great for punches. Usually made of “cover stock,” these are the perfect weight for punches. I turned an old Scientific American cover into a gorgeous collection of leaves.

Paper Garbage Bin: This is a very cool project and the directions on this video are easy to follow. They will also lay the foundation for the next project.

Magazine Bowls: These can be pretty pricey at a home goods store, but the technique is simple.

Paper Mache: Start by taking a bowl and covering it well with plastic wrap. Cut up magazines and newspaper into strips. Make a paste of flour and water. Dip the strips in the glue and place onto the bowl. For best results, let it dry before adding layers. Once it’s completely dry, unmold. You can then paint it or just decoupage it. A variation is to rip up magazine pages into very tiny pieces and soak in water until it becomes very mushy. You can hasten the process by using a blender and hot water. Prepping a bowl with plastic wrap, just dab on bits of the paper mulch.

Journal/News Watch May 29

2011-05-29T06:24:00.000-07:00

Prescribe Fewer Tests for Better Care: Ordering fewer tests and prescribing fewer antibiotics will not only curb healthcare spending but also improve the quality of primary care, a large group of U.S. doctors said Monday. After soliciting input from more than 250 members, the National Physicians Alliance (NPA) came up with 15 recommendations it believes will help doctors practice medicine more efficiently. The group's report follows concerns over the growing use of new technologies, such as CT scans, that in many cases don't have a clear medical value. The report lists five evidence-based recommendations in three areas: family medicine, internal medicine and pediatrics. The gist of the advice? Leave well enough alone. Archives of Internal Medicine, online May 23, 2011

CDC Warns Against Exposure to Mad Dow Like Brain Diseases: .U S. researchers have new information about how humans are exposed to "prion" diseases, which are rare, progressive conditions that affect brain function, such as variant Creutzfeldt-Jakob disease, chronic wasting disease and bovine spongiform encephalopathy, commonly known as "mad cow disease." The study found that eating wild deer meat (venison) is one of the most common ways people are exposed to these serious, debilitating diseases. Journal of the American Dietetic Association, June

NIH Stops Study of Niacin: On Thursday the National Institutes of Health halted a major study of high-dose niacin, a type of B vitamin, more than a year ahead of schedule because of the lack of benefit. It was the latest setback in the quest to harness good cholesterol to fight the bad kind. A study of 3,400 statin users some of whom received Niaspan or a placebo, found that while the HDL levels rose and triglycerides dropped in the Niaspan group, the combination of statin and Niaspam didn’t reduce heart attacks, strokes or the need for artery-clearing procedures such as angioplasty, the NIH said. NIH

6.5 percent of adults active enough at work: Health researchers say only about 6.5 percent of U.S. adults meet physical activity guidelines while they're working. And those that do are disproportionately Hispanic men and men with less than a high school education. Morbidity and Mortality Weekly Reports

Lists of Prescription Meds' Side Effects Keep Growing: Lists of the side effects for prescription medications on drug labels, packaging and advertisements have mushroomed up to an average of 70 per medication, a new study reports.
Cautions about side effects were designed to inform doctors and consumers of potential hazards, but this expansion may have more to do with worries about litigation rather than actual health concerns, say the study authors, who argue the information could be presented much more efficiently. Archives of Internal Medicine May 23

With Calcium, More May Not Be Better: Getting enough calcium for bone health is essential, but getting more than that doesn't appear to confer any additional benefit, Swedish researchers have found. BMJ May 24

Omega 3 Fatty Acids May Help Heart Patients with Stents: Combining omega-3 fatty acids with blood-thinning drugs may reduce the risk of heart attacks in patients who've had stents placed in their coronary arteries, a new European study suggests. While other research suggests that foods rich in omega-3s, including fatty fish such as salmon, help reduce the risk of heart problems in those with existing coronary artery disease, the new study is thought to be the first to look at the effect of the omega-3s on those treated with blood-thinning medications after stent placement. May 26, 2011, Arteriosclerosis, Thrombosis and Vascular Biology: Journal of the American Heart Association

Special Tinted Glasses My Stymie Migraines: Precision-tinted glasses seem to help prevent migraines in people whose pain is triggered by certain visual patterns, new research indicates. May 26, 2011, Cephalalgia

A Cultured Man is a Healthier, Happier Man: Both men and women who engaged in sports, religious and cultural events reported better health and satisfaction with life than those who were less engaged. But men, especially, saw benefits. Men who attended cultural activities were 9 percent more likely to report being in good health than men who didn't attend, while women who attended cultural activities were 3 percent more likely to report good health. May 23, 2011, Journal of Epidemiology and Community Health.

Heart Failure Risk Lower in Women Who Often eat Baked/Broiled Fish: The risk of developing heart failure was lower for postmenopausal women who frequently ate baked or broiled fish, but higher for those who ate more fried fish This study showed that they type of fish and cooking method may affect heart failure risk. The researchers found that dark fish (salmon, mackerel and bluefish) were associated with a significantly greater risk reduction than either tuna or white fish (sole, snapper and cod). In a similar analysis, eating fried fish was associated with increased heart failure risk. Even one serving a week was associated with a 48 percent higher heart failure risk. Circulation: Heart Failure

Mexican Flu Pandemic Study Supports Social Distancing: Eighteen-day periods of mandatory school closures and other social distancing measures were associated with a 29 to 37 percent reduction in influenza transmission rates in Mexico during the 2009 pandemic. NIH Press Release

New Tests of US Airport Scanners Find Radiation OK: New tests of full-body scanners deployed at airports found that the radiation they emit was within acceptable levels, the Transportation Security Administration said on Tuesday after previous checks found some anomalies in results. Reuters

Regular Brisk Walks May Protect Prostate Cancer Patients: Prostate cancer patients who take brisk walks on a regular basis fare better than those who don't, a new study suggests. They not only lower their risk for disease progression, they lower their chances of dying from the disease, the researchers reported. Cancer Research

CT Heart Scans No Benefit to Patients without Symptoms: For people who show no symptoms of heart disease, there is little short-term benefit to having their heart vessels scanned for plaque buildup, a new study suggests. Archives of Internal Medicine 5/23/11

Eating Less Fat May Cut Diabetes Risk: For the study, published online May 18 in the American Journal of Clinical Nutrition, the researchers put 69 overweight people at risk for diabetes on diets for eight weeks with only small reductions to their fat or carbohydrate intake. Those in the lower-fat group consumed a diet comprised of 27 percent fat and 55 percent carbohydrate. The low-carb group's diet was 39 percent fat and 43 percent carbohydrate.

Significant Benefits of Yoga in People with Rheumatoid Arthritis: Individuals with rheumatoid arthritis who practice yoga showed statistically significant improvements in disease activity, according to a small study presented at the EULAR 2011 Annual Congress.

Losing More than 15% of Body Weight Significantly Boosts Vitamin D Levels in Overweight Women. Overweight or obese women with less-than-optimal levels of vitamin D who lose more than 15 percent of their body weight experience significant increases in circulating levels of this fat-soluble nutrient, according to a new study by researchers at Fred Hutchinson Cancer Research Center. American Journal of Clinical Nutrition, 2011

Rapture Follow Up-What Happens When Things Don’t Work Out as Planned

2011-05-28T05:46:00.000-07:00

In follow up to last Saturday’s post on the Rapture and Millerites, it’s now a week later and Harold Camping’s prophecy was as accurate as William Miller’s in 1844-nothing happened. So what is the relevance for people with chronic conditions?

There are several things that strike a cord with me about this situation: People with chronic disease are often fearful and thinking of “worse case scenarios” makes them very vulnerable to medical sales pitches. This is similar to religious fundamentalism, where fear lies at the heart of many of these groups.

When the plan fails- May 22 arrived with no rapture, the “miracle cure” produces no cure-what does one do?

In the case of the followers of Miller, there were three common practices after the “Great Disappointment”: they went back to their original churches and lives; they continued on with Miller, believing the next rapture date; or they rationalized the events. In the case of a Millerite named Hiram Edson, he became convinced that what was meant by Daniel 8:14, (that section of the bible Miller used for selecting his rapture date) was actually Christ's entrance into the second chamber of his sanctuary (in 1843-44) to examine the lives of all mortals living and dead. This "investigative judgment," said Edson, when completed, the great day of the Second Coming would dawn. Ultimately, this belief became the foundation for the Seventh Day Adventists.

What happened to the Millerites, and now the followers of Camping, isn’t all that different than what happens to people who engage in a health practice, which they are sure is “going to work” and provides no benefit- they go back to previous health practices; continue to believe that it will work, even though the evidence doesn’t support it; and/or rationalize why it is helping them form a new approach to their treatment plan. Fortunately, the situations aren’t completely identical, as sometimes treatments do provide significant relief, even if it’s just the placebo effect.

Last week’s events are once again a reminder that fearful people can be very vulnerable to someone who is charismatic and has a message that may resonant with us. So some “take home” points from these last few weeks:

• Keep fear in check: We are not at our best making decisions when we come from a place of fear. This will be the focus of next week’s post.

• Know how to recognize a scam-the quick way is if it sounds too good to be true, it probably is and if they tell you there is a cure for a condition, such as AIDS, when no cure has been found.

• Focus on well being versus the elusive cure.

Take a Break: Paper Mobiles/Chains

2011-05-25T02:26:00.000-07:00

This past weekend, I was visiting with a friend and noticed that she still had the chains of paper snowflakes, we made last December fluttering in her windows. Using punches, some were 3-D. These were made by cutting small slits and sliding one snowflake into the other. Since snow is big business in Vermont, we had a variety of punches in various sizes. Simply cut from white paper, and strung on thread, they are beautiful to see, even if it’s black fly season.

I could understand why she didn’t want to take them down because what could be as lovely? Well this weekend is Memorial Day and the official start of summer, so below are ideas for chains or mobiles, your choice.

Five-Pointed Star: Start with two sheets of paper. Use one to make the star, following the directions for a 5-Pointed Star in One Snip. The second sheet cut in half horizontally. You will now have two rectangles. Make a five-pointed star from one of the rectangles and cut the second in half. Again make a star from one of the rectangles and cut the other in half. Keep working until you can no longer divide and fold.

You can then chain them by size, mix and match with other designs, or stack them together to make an interesting multi layered star.

Five-Pointed Star Outline: Make some of these using the technique described above to provide an various sized star outlines for your star mobiles. You can also link these together in a chain, by cutting one of the star tips, linking it through another star outline and then tape or glue where you made your cut. Once they are hanging, no one can tell that you used glue or tape.

Fold an Origami Butterfly: Use colorful origami paper and these will look delightful floating in a gentle breeze. The goldfish is a good design that lends itself to a mobile or chain.

Punches/Cookie Cutters: Martha Stewart offers a wide array of paper punches that work well. They’re expensive, so try to get them on sale. If you have cookie cutters, just trace and cut.

Modern Colorful Mobiles: This project calls for strips of vellum sewn together, but you can achieve something similar by using paper and gluing or taping. I work in the First Aid Room at my local ski area in the winter and we made a variety of hanging mobiles using hearts, snowflakes etc. It’s amazing what you can do with a glue stick and tape. Unless you look up close, you can’t tell.

Journal/News Watch 5/ 23/11

2011-05-22T03:52:00.000-07:00

Putting a price on blood tests can save money: Letting doctors know how much money they spend ordering blood tests may help rein in unnecessary healthcare spending, researchers report. They found weekly announcements of the previous week's costs to surgery staff at a Rhode Island hospital produced savings of about $55,000 over less than three months. Archives of Surgery, May 16, 2011

Can Selenium Lower Cholesterol: Taking high doses of selenium may help slightly lower cholesterol levels -- but it's still not recommended in the United States, where most people get plenty of the mineral, according to the authors of a new study. Still, the finding is "reassuring" because previous research had linked high selenium with higher cholesterol levels, said study author Dr. Eliseo Guallar, from the Johns Hopkins Bloomberg School of Public Health in Baltimore. Annals of Internal Medicine, online May 16, 2011

Genetic Link to Depression: Scientists say they have discovered the first solid evidence that variations in some peoples' genes may cause depression -- one of the world's most common and costly mental illnesses. And in a rare occurrence in genetic research, a British-led international team's finding of a DNA region linked to depression has been replicated by another team from the United States who were studying an entirely separate group of people. American Journal of Psychiatry May, 2011

Medicare to Exhaust Funds Sooner: Two of the government's most popular programs for the elderly, Medicare and Social Security, will run out of money sooner than thought earlier as a slow-growing economy saps revenues, a report on Friday said. Trustees for the two funds said the Medicare trust fund is projected to exhaust its funds in 2024, not 2029 as estimated last year, and that the Social Security retirement program will run out of money in 2036, not 2037 as previously thought. Reuters

Hospice Care More Common in Wealthier Areas: The availability of hospice care for dying patients in the United States is strongly associated with a local area's average household income, a new study says. Journal of Pain and Symptom Management

Tai Chi Prevents Falls, Boosts Mental Health in Seniors: Tai chi helps reduce the risk of falls in older people and also improves their mental health, a new study has found. However, the ancient Chinese martial art/exercise does not help ease the symptoms of cancer or rheumatoid arthritis, according to researchers who analyzed 35 reviews assessing the health effects of tai chi. British Journal of Sports Medicine May 16

Pills, surgery both effective for chronic reflux: Both surgery and popular medications such as Nexium, Prevacid or Prilosec can successfully treat the discomfort of chronic reflux, according to new research funding by Astrazeneca, the makers of Nexium. JAMA May 18

The Mystery of Chronic Pain: We think of pain as a symptom, but there are cases where the nervous system develops feedback loops and pain becomes a terrifying disease in itself. Starting with the story of a girl whose sprained wrist turned into a nightmare, Elliot Krane talks about the complex mystery of chronic pain, and reviews the facts we're just learning about how it works and how to treat it. TED Conference

Few Docs, Hospitals Exchanging Patient Information: Health information exchange -- a process that aims to simplify and improve patient care by connecting doctors and hospitals -- hasn't been catching on as fast as policymakers hoped, a new survey finds. The results also show that organizations responsible for coordinating the digital exchange of patient records are rarely financially viable, and only a few support the type of information exchange that the government deems necessary. , Annals of Internal Medicine, online May 16, 2011

Smoking linked to age-related blindness: The research, by scientists in Japan and the United States, shows that Japanese smokers face four times the risk of age-related macular degeneration, or AMD, than non-smokers.Ophthalmology, April 22, 2011

Hospital ratings miss many high performers: Looking for hospital ratings on the internet or in magazines may not serve patients' best interests, suggests a study of HealthGrades and U.S. News & World Report. It shows that for three types of cancer surgery, "America's 50 Best Hospitals" as ranked by internet-based HealthGrades are no better than the other hospitals once the number of patients they treat is taken into account. Archives of Surgery, May 17, 2011

Screening Patients for Cancer: Two big studies suggest possible new ways to screen healthy people for cervical or prostate cancers, but a third disappointed those hoping for a way to detect early signs of deadly ovarian tumors.
Researchers found:
_For women 30 and over, a test for the virus, HPV, is better than a Pap smear for predicting cervical cancer risk, and those who test negative on both can safely wait three years to be screened again.
_A single PSA blood test at ages 44 to 50 might help predict a man's risk of developing advanced prostate cancer or dying of it up to 30 years later. The PSA test is notoriously unreliable, but using it this way separates men who need a close watch from those who are so low-risk that they can skip testing for five years or more.
_Screening women with no symptoms for ovarian cancer with a blood test and an ultrasound exam is harmful. It didn't prevent deaths and led to thousands of false alarms, unneeded surgeries and serious complications. American Society of Clinical Oncology

Crossing your arms may help relieve pain: Crossing your arms across the middle of your body confuses the brain and helps reduce the intensity of pain. Scientists from University College London (UCL) who reported the finding in the journal Pain said they think the reason for the phenomenon is conflicting information between two of the brain's maps -- one for the body and one for external space. Pain, June 2011

Treating Back Pain May Reverse Its Impact on Brain: Treating chronic lower back pain can reverse pain-related changes in brain activity and function, according to a new study of patients who had lower back pain for more than six months and underwent either spinal injections or spinal surgery to treat the pain. Journal of Neuroscience May 17, 2011

Today’s Rapture and the Millerites

2011-05-21T03:22:00.000-07:00

For quite some time, there has been considerable press given to today’s reported rapture. Because of my role with our local historical society, I have been fascinated by a very similar event in the 19th century. While at first blush, it may not appear to have anything to do with living with chronic conditions-and yes, I did stretch it a bit because I wanted to write about the Millerites-many people with chronic conditions form very strong beliefs about what’s going to happen because of their diagnosis. When the events they were so sure of don’t transpire-the cure didn’t happen, they continue to live long after they expected to die-it can be very difficult.

I watched a number of people with AIDS run up amazing debt because they believed they would die and not have to pay it back. The problem was so significant that I attended a workshop after the protease inhibitors were introduced. People were getting healthy and many started returning to work. However, what to do with the debt? The short response was bankruptcy but there were a number of people that were grateful for a “second chance” as they saw it so did work out payment plans to pay it off.

Living in Vermont, I am acquainted with the story of the Millerites, since this was one of the states where the founder lived. Similar to Harold Camping, the 89 year-old retired civil engineer who has built a multi-million-dollar nonprofit ministry based on his apocalyptic prediction for today, Baptist preacher William Miller predicted Jesus was going to return to earth on Oct. 22, 1884. In Miller’s Lecture XIX he writes "Can ye not discern the signs of the times?" Will God's word fail of being accomplished? Can you show a single instance? Why not listen, then, to the warnings and admonitions, to the calls and invitations, to the examples and precepts contained therein? "Can ye not discern the signs of the times?" Will God cut off the unbelieving Pharisee for not discerning the signs of the times, and let you, with twofold more light, go free? No; how can ye escape, if you neglect this great salvation? Watch, then, "the signs of the times." I say, Watch.

Estimates very, but between 50,100 and 500,000 people were convinced that on this date, the “saints,” those who believed in the rapture, would be taken into the New Jerusalem while fire destroyed the world. The newspapers covered stories of the Millerites prior to the day of rapture and after. An article in the New York Herald, March 24 1843, made the link between Millerism and insanity: We lately published a statement that a Mr. Shortridge, of New Hampshire, had run mad with Millerism, and attempted to ascend to Heaven from an apple-tree, but found the attraction of gravitation too strong for his celestial aspirations, and came to the ground with such momentum as to cause his death. We have just seen two letters of late date from different sources in Portsmouth, N. H., stating that letters had been received there from this same Mr. Shortridge, making no mention of his 'ground and lofty tumbling' or death-circumstances so remarkable that they could hardly have escaped his notice had they actually occurred. We have heard from another source that this same Mr. S. was crazy ten years ago. So in the case of the woman who poisoned her children and attempted to commit suicide some weeks since—her insanity was attributed to Millerism, but entirely without reason. Doubtless the like has been the case in many other instances. Those who know any thing of Insanity are aware that it very commonly takes its hue from the most exciting topic of the hour, so that hundreds of persons have been reported as victims of 'religious mania,' when in fact their insanity was caused by functional disorders, often having its seat in the digestive organs and only by sympathy affecting the brain. Of those who are currently reported as rendered insane by 'Revivals' or 'Millerism,' a great portion would be found, on due inquiry, to have been constitutionally disposed to insanity, and often to have inherited that malady. In other cases, physical derangement consequent on personal excesses, such as intemperance, gluttony, and other forms of sensuality, was the true cause.—We cannot exclude from our columns accounts of remarkable casualties, but our readers will know how to make due allowance for the causes to which they are often mistakenly attributed.

Like today, many Millerites gave up jobs, sold their property and divested themselves of all things worldly. Gathering at the highest peaks where they lived, wearing white ascension robes and some sitting in metal wash tubes, they believed that when the great triumph from heaven sounded, they would be a good position to ascend.

The Millerites were most common in the Northeast. The Akron Historical Society in Ohio writes the following about what happened to the Millerites when the day of rapture came and went. For the faithful, heavy depression set in. This day was perhaps the greatest disappointment to befall the church in the history of the New Dispensation. Fifty thousand of Miller’s followers had found it impossible to stay in fellowship with their former congregations. These fifty thousand now had to face the truth. They hadn’t been taken into glory. The wicked still weren’t destroyed by fire. One by one, they retreated back into their lives.

Humiliated by what has been called "The Great Disappointment," some Millerites shucked their faith completely. Led by Miller, others formed the Adventists. The majority returned to more traditional churches.

Shortly afterward, Miller wrote a letter to his followers: “Brethren hold fast; let no man take your crown. I have fixed my mind on another time, and here I mean to stand until God gives me more light, and that is today, today, and today, until he comes.” (Bliss, Memoirs, p. 278)

Many of those, that didn't learn the first two times, resorted to believing that Jesus Christ had returned to earth on October 22, 1844, and that he is invisible. This particular theory was that it would take an additional three and a half years after Christ’s invisible return before his kingdom would be thoroughly established, which led to setting another date in 1848. What happened in 1848? You guessed it.

For more than five years, William Miller went back to the book of Daniel and Revelation, he went back to his prophetic chart and his numbers, still pondering why he had missed the truth about Christ's Second Advent.

Washington Morse of Northfield, Vermont wrote about the Great Disappointment as follows: “The day came and passed, and the darkness of another night closed in upon the world. But with that darkness came a pang of disappointment to the advent believers that can find a parallel only in the sorrow of the disciples after the crucifixion of their Lord. . . to turn again to the cares, perplexities, and dangers of life, in full view of jeering and reviling unbelievers, who scoffed as never before, was a terrible trial of faith and patience. When Elder Himes visited Waterbury, Vt., a short time after the passing of the time and stated that the brethren should prepare for another cold winter, my feelings were almost uncontrollable. I left the place of meeting and wept like a child.”

While Miller died not long after the failed rapture, two groups continue based on his teachings the Jehovah Witness and the Seventh Day Adventists.

Take a Break: Create Mindfulness Reminders

2011-05-18T03:01:00.000-07:00

As an anecdote for stress and the feelings of frustration or agitation that can accompany living with a chronic condition, mindfulness reminders can help us stop, take a breath or two, be mindful of our surroundings, smile or do whatever is helpful in being aware of the present and not worrying about past events or obsessing about future fears. This reminder should be something that you encounter on a regular basis throughout the day. It can be something that engages one or more of the five senses-hear, taste, touch, smell, or see -that is your “ahhhhh” moment. How many, what type and whether you’d like to have different ones each day, are up to you.

Today’s “take a break” is about identifying and making mindfulness reminders for your self.

Sound
Sounds are an excellent reminder to stop and be mindful. These can include:
• The ringing of the telephone, cell phone or doorbell
• Jewelry such as a charm bracelet that makes a sound when you move your wrist
• A clock that chimes (or sounds like a loon at my house) on the hour or half hour, or a mindfulness bell that rings. You can download a mindfulness bell for your computer for free. http://www.mindfulnessdc.org/bell/index.html
• If you are lucky to live near a large body of water, fog horns, waves, sea gulls
• Sounds from nature. It’s spring here in Vermont, so the peepers (tiny frogs) are creating a lovely serenade and the morning doves coo throughout the day.

I have a particular pair of earrings that I love wearing. As I move my head and I hear them quietly tinkling, it causes me to pause, even for a second. If I’m particularly stressed, these are the right earrings for me to wear.

Smells
This is a bit different than aromatherapy, which uses essential oils to help with mood. Think about smells that are part of your daily life:
• The scent of a certain shrub or flower,
• Coffee,
• Certain foods, such as dinner preparation
• Seasonal smells, such as holiday baking, Christmas trees, burning leaves in the fall, lilac in the spring and honey suckle in the summer

Sight
While I’ve already discussed how wearing a favorite pair of earrings that make a delicious tinkling sound is an important mindfulness reminder, I also make “remembering” bracelets. These are used to help families and friends think about a loved one that is undergoing a major event. A red, white and blue bracelet is an easy reminder to think about a loved one in the armed forces, or a multi colored one can support someone going through chemotherapy or the final few weeks of pregnancy. The bracelets can be worn, left on a desk, bedside stand or someplace where you will routinely see it, so you will stop and send a quick prayer or thought.

This same approach can be used in making a mindfulness bracelet for your self. To help in selecting colors, the following color table is provided:
• Green- healing and stability
• Blue- calming and tranquility
• White-spirituality and safety
• Red-energy
• Brown-wholesomeness
• Yellow-clear thinking
• Purple-spirituality

There are many things that you see on a daily basis that can become good mindfulness reminders. There are certain birds and items in my house, favorite tea mug for example, that are good items to remind me to slow down, stop and breathe.

Taste
Aaahh the first taste of chocolate in your mouth. Hmmmmm. Definitely a good reminder for me. There is a lot of discussion about how mindful eating is a lot healthier for us. However, taste doesn’t need to be just associated with food. When I’m at the ocean, I can taste the saltiness of the air as well as smell it.

Touch
The feel of a T-shirt, stroking a pet, holding a stone, or the feel of sunshine on your skin can all be daily reminders. I’m particularly fond of rocks and keep them on my desk. I will notice them and then have to pick them up.

Keep in mind that involving more than one sense can make the reminder all the more meaningful. Whatever you choose, add some aaaahhh moments today.