Does Hope Have a Dark Side?

In November, I posted a study, which suggests that chronically ill may be happier if they give up hope. Below is additional information and comments from the author about this study.

Does Hope Have a Dark Side?

THURSDAY, Aug. 26 (HealthDay News) -- Imagine suffering from a chronic illness that challenges you every single day. You have aches and pains, difficulty getting around and sometimes suffer from surprising decreases in energy. You take fistfuls of medication for relief and endure countless medical procedures to keep the illness from progressing.

The illness might be physical, such as diabetes, chronic fatigue syndrome or arthritis. Or it might be emotional or psychological, such as anxiety or depression.

Either way, might your life be better if you stopped hoping to cure your condition and simply accepted things as they are?

"Sometimes knowing the adversity you face is permanent makes it easier to face that adversity," said Dr. Peter A. Ubel, a professor of medicine and psychology at the University of Michigan and director of the university's Center for Behavioral and Decision Sciences in Medicine.

Ubel co-authored a study that found that people who'd had a colostomy -- surgery that creates an opening in the abdomen for stool to drain from the body -- but could have the procedure reversed in the future experienced no improvement in life satisfaction over time. But, people who had irreversible colostomies reported increased satisfaction with their quality of life.

It's not a conclusion that's been universally embraced, however. Dr. Ann Berger, chief of pain and palliative care at the U.S. National Institutes of Health Clinical Center in Bethesda, Md., said she believes the finding from the colostomy study only scrapes the surface of what a patient needs to undergo to experience healing from a chronic illness.

"Acceptance is only a very small part of ultimately developing a sense of wholeness in healing from a chronic illness," Berger said.

The study involved 71 colostomy patients, including 30 people with permanent procedures and 41 with reversible procedures. They were all quizzed about their quality of life one week after their release from the hospital and again one month and six months later.

Even though both groups of people had the same disability, those who knew their condition was permanent adapted better to their situation over time, Ubel found.

He believes a couple of factors are probably at work here. First, people who hope for a cure that may never come will grow frustrated over time when there is no improvement in their situation.

"Happiness is not just a matter of circumstances, but also how circumstances compare to your experiences," Ubel said. "If you continue to hold out hope that things will get better, you will feel more frustrated."

Also, Ubel explained, people holding out hope will experience a great deal of "Weltschmerz," a German expression referring to the pain people feel when comparing how life is to how life should be.

"If I'm hoping for something better, then I continually compare my current lot in life to what it could be, and the contrast hurts," Ubel said. "People who have a temporary condition think, 'Why do I have to live with this? I want to be better.' People with a permanent condition think, 'Things aren't perfect, but these are the cards I've been dealt.'"

Berger, on the other hand, thinks people should view the findings from the colostomy patients' experiences "with a grain of salt," in part because the results stem from a small group of study participants.

But in addition, a range of life factors can affect how people deal with a chronic illness, including their psychological state before the illness, their social networks and support systems, and their sense of spirituality, Berger said, and none of those factors were considered in the study.

"A lot of it has to do with people's sense of: 'I have a place and worth in the world. I'm safe and taken care of. I have plans and expectations for my life. I have control over things in my life. I have some kind of secure inner peace,'" she said. "These are things that go on in someone's inner psyche and help in the healing process."

If people have support and a sense of spirituality, she said, they may not be cured but they can be healed. "You need to look at curing versus healing," Berger said. "Cure is cure of an illness. Healing is a feeling of wholeness of an individual."

And the notion of "giving up hope" is flawed, she said.

"I don't think that you necessarily give up hope," Berger said. "When you are chronically ill, you may hope for other things. Hope just changes so that rather than hoping for a cure, you hope to get to somebody's wedding or you hope to see the sunset the following day. You don't hope for the same things as hoping for a cure. That's not losing hope. It's very different, and they can still feel healed."

Take a Break: Fun Holiday Gifts to Start Making Now

Yes Labor Day isn’t even here and I’m thinking of Holiday gifts. Around this time, thanks to 40 degree nights, I start mulling over what I can make for the Holiday season. At the moment, I’m working on the perfect gluten free, heart healthy cookie. I’m pretty close and am now considering a gluten free pumpkin oat cookie. Summer is the perfect time for a bit of R & D. But I digress.

Posted below are five things to make, which will make unique gifts for friends and family during the holidays or for any other occasion.

Money Soap (Get clean and green at the same time)

Eyeglass Case

Eyeglass Case and Bookmark: This is ideal for those folks that are forever loosing their reading classes.

If you are only going to need small pieces of fabric for a project, such as eyeglass cases, go to a design store or any other store that may have books of material swatches. I did this last year and made hats and eyeglass cases. The fabrics were delicious!

Fabric Flower Brooch: You can make these in any size and with the right material, can make poinsettias holiday pins.

Candles When I was in college, I had a friend who literally used every mold in his mother’s kitchen cupboard to make candles. The results were quite lovely and he gave them as gifts all the time. The Craftbit site is excellent, as it gives over 50 ways to make your own candles, including directions for whipping wax.

No Job/No Health Insurance/No Care: What Are My Options?

Recently I spoke with a friend, who has been treated for cancer successfully, but needs continual follow up to ensure that it does not return. Self-employed, this person’s business evaporated, and with it health insurance. Not surprisingly, the oncologist said to return only when health insurance has been obtained or reinstated.

Unfortunately, this is becoming an all too frequent an occurrence. So what can one do?

There are three areas to consider. First is what can you do to keep yourself in the best possible health. This can be difficult, particularly if you are under a lot of stress due to a job loss and/or mounting expenses. Second is where to go for free and/or sliding scale fee care in your community. Finally, developing “social capital” can assist you in multiple ways.

Step 1: Research shows that chronic illness can be eliminated or significantly reduced by maintaining a healthy life style. Below are links to help you live as healthy a life as possible.
• University of Minnesota Taking Charge of Your Health

• Beth Israel Medical Center Continuum Center for Health and Healing New Approaches to Chronic Disease

• Preventive Medicine Institute (Dean Ornish program for reversing heart disease)

• 50 Terrific Social Sites for Healthy Living

• Wise Brain.org: A project of the Wellspring Institute for Neuroscience and Contemplative Wisdom, offers tools and skills to making changes in the brain that benefits the whole person.

• Check local news sources, as well as ask your medical provider, about free healthy living classes, smoking cessation, exercise and similar programs.

Step 2: Below are links to help you identify resources in your community where you can obtain free and/or sliding scale fee care.

• Federally funded health centers provide care on a sliding scale fee and include the following services: checkups; treatment; pregnancy care; immunizations; dental care; prescription drugs; mental health and substance abuse care. Find a Health Center

• Many states have free clinics. Locate a clinic by going to http://freeclinics.us/freeclinic.php If you live near the border of another state, be sure to check both states. Some free clinics provide dental care.

• Most hospitals have programs and policies regarding uncompensated care. You can learn more about this by searching on line for your state and/or hospital with the term “uncompensated care.” The Hill-Burton program, a federal program, which expired in 1997, has 200 hospitals and nursing homes that are obligated to offer free and/or reduced fees.

• Contact the national organization and/or local chapter that pertains to your health condition. Use the Medline Plus list of Organizations to help you identify the appropriate organization.

• For dental care, search the National Institute of Dental and Craniofacial Research, a division of the NIH, Finding Low-Cost Dental Care

• For eye care
- National Eye Institute’s Financial Aid for Eye Care
- EyeCare America: A Foundation of the American Academy of Ophthalmology-provides eye care for the medically underserved

• For prescriptions
- Prescription Assistance Program
- Free Medicine Program
- Needy Meds
- Together Rx Access
- Rx Assist
- Tricare Senior Pharmacy For uniformed services beneficiaries 65 years of age or older.

• If you are a veteran, you are eligible for care through the Department of Veterans Affairs

• Contact your local Community Action Agency (CAAs) CAAs are nonprofit private and public organizations established under the Economic Opportunity Act of 1964 to fight America's War on Poverty. Depending on the CAA, they can provide information and referrals, food pantries, income management, housing, jobs, and health care. Most CAAs will have someone on staff that can help you fill out forms for state funded health insurance if you qualify.

• Apply for state and federally funded health insurance (Medicaid and Medicare). While Medicare is generally for those 65 and over, many people with chronic conditions qualify for this program. You can apply on-line for Medicare.
- Medicaid is a state run program, and as such has different eligibility criteria and applications. Contact your local CAA about how to apply for Medicaid in your state.
- Contact your state’s health department for other types of health insurance that may be available.

• Some conditions, such as HIV, have special funding structures for care. The best way to find out about these programs is contact your local health department and/or condition specific organizations, e.g. American Diabetes Association.
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• For additional resources and information, contact your state’s 211 helpline

Step 3: Developing “social capital” is defined in business terms as the degree to which an organization or community collaborates and cooperates (through such mechanisms as networks, shared trust, norms and values) to achieve mutual benefits. (Tuck School of Business at Dartmouth) In terms of this blog , social capital refers to mutual benefits available in your relationships to neighbors, family, friends, work, church, and community .

An idea that’s been around for eons, simply put by helping each other we build a strong community, which can help us in our time of need. A good example is the film “It’s A Wonderful Life.” George Bailey (played by Jimmy Stewart), rich in social capital, but financially poor, helps his community and family time and again. When the chips are down for George financially, his social capital kicks in and saves him, and helps Clarence earn his wings in the process. If you haven’t watched the film, the last part makes no sense.

Keep in mind that with the current state of the economy, programs that you may qualify for, may not have the funds to provide the service. In these situations, having good social capital will help you fill in the blanks. If you are unemployed, and seek care from local Free Clinics, build your social capital by offering to help in what ever ways you can.

To help you understand a bit better what your social capital might be, answer the following statements on a scale of 1-5 with one strongly disagree and five strongly agree:

• If I need help around the house, I know I can count on my neighbor, family or friends.

• I often exchange favors with other members of my community-e.g. picking up items from the grocery store for a friend; watching someone else’s children.

• If I were seriously ill, I know I could count on my neighbors, family, or friends for help.

• If something serious happened to a neighbor, family or friend, such as a death, fire or major illness, I would be there to help them.

• If something serious happened to me, my community would rally around me.

If most of your answers are 4’s and 5’s you probably have good social capital. You can cash in on this in many ways-someone who knows someone can help you find a job; assistance in finding a local health provider who will see you for free; and help when you need it most.

If many of your responses are three or lower, Check out 100 Things You Can Do to Build Social Capital.

Take a Break: Read a Book/Sip Tea

The days are getting shorter, the crickets are in full voice, and mornings are foggy while nights are bordering on cold. In short, while fall is rapidly approaching my northern New England home, there are a few warm days left for spending a day reading a good book. However, with a nod to the cold nights, I’ve also included a cup of hot tea in the mix.

Everybody has their own definition of what makes a good summer read. For some it has to be a light book of fiction, where it doesn’t matter if you fall asleep in the middle of it. For others, this is the season to once again to try and tackle “War and Peace.” For me, I want a book that engages my attention regardless of season. The ideal one keeps me from checking e-mail, cleaning or even stopping for a lunch. I want to be totally absorbed by it.

Regardless of how you define it, take a break and read. Most libraries have a selection of books picked out for summer reading. Some even include a discussion group on-line, where you can leave a review. Many libraries offer audio books, which you can download directly to your computer or MP3 player. If you need to locate your local library, go to http://www.publiclibraries.com/

For some ideas about what to read, check out the following lists:

O’s 2010 Summer Reading List

Summer Reading: Indie Booksellers Pick 15 Great New Beach Reads

New York Times Book News and Reviews

List of Summer Reading Lists

So now for the perfect cup of tea.

There is a growing body of research that suggests that certain teas may yield significant health benefits. Black, green, white and Oolong all seem to contain “polyphenols,” which are thought to reduce the risks of cancer and other health problems. Choose what you like. For tips on brewing

Coping with Crises When It’s Someone Else’s

An article in today’s New York Times,” Coping with Crises Close to Someone Else’s Heart,” reminded me of the post I wrote several months ago “When They Don’t Respond.” Below are excerpts from the article.

Often the closer one feels to the family in crisis, the harder it is to cope. “Most people cannot tolerate the feeling of helplessness,” said Jackson Rainer, a professor of psychology at Georgia Southern University who has studied grief and relationships. “And in the presence of another’s crisis, there’s always the sense of helplessness.”

Feelings of vulnerability can lead to a kind of survivor’s guilt: People are grateful that the trauma didn’t happen to them, but they feel deeply ashamed of their reactions. Such emotional discomfort often leads them to avoid the family in crisis; as Dr. Sourkes put it, “They might, for instance, make sure they’re never in a situation where they have to talk to the family directly.”

Awkwardness is another common reaction — not knowing what to say or do. Some people say nothing; others, in a rush to relieve the feelings of awkwardness, blurt out well-intentioned but thoughtless comments, like telling the parent of a child with cancer, “My grandmother went through this, so I understand.”

“We have more of a societal framework for what to say and do around bereavement than we do when you’re in the midst of it,” Dr. Sourkes said. “Families say over and over, ‘It’s such a lonely time and I don’t have the energy to educate my friends and family, yet they don’t have a clue.’ ”

The more vulnerable people feel, the harder it may be to connect. A friend whose son suffered brain damage in an accident told me that the families who dropped them afterward had children the same age as her son. They could picture all too vividly the same thing happening to their children; they felt too much empathy rather than not enough. …..

Dr. Rainer describes this kind of distancing as “stiff-arming” — creating as much space as possible from the possibility of trauma. It’s magical thinking in the service of denial: If bad things are happening to you and I stay away from you, then I’ll be safe.

Caregiver Resources

This post is dedicated to Annie, whose e-mail prompted me to think more about caregiver issues.

Being a Caregiver can be rewarding as well as challenging. Below is a list of resources to help make things easier:

From Healing Whole
Note that every Wednesday is Take a Break Day, which is very important for Caregivers. There are also a variety of posts on choice and decision making, which are not included below but may be of interest. Be sure to check through the blog to find other resources and information that may be most relevant to your situation.

• Healing the Whole Person Handout

• Caregiving: The Challenges and Ways to Deal With Them Part I: Talking Care of Self

• Caregiving: The Challenges and Ways to Deal With Them Part II: Other Suggestions and Resources

• Caregiving: The Challenges and Ways to Deal With Them Part III: We Both Have a Chronic/Serious Illness

• Getting What You Need Checklist: Checklist for those living with a chronic condition and those that care for them.

• An Answer for What Can I Do to Help

• Discharge from the Hospital

• Finding Support On-line

• Hospitalized: What Family and Friends Can Do

• They Don’t Take Care of Themselves

• Why Don’t They Respond

Other Resources
AARP’s Navigating the World of Caregiving

Family Caregiver Alliance

National Alliance for Caregiving

National Family Caregivers Association

Well Spouse Association: Support for Spousal Caregivers

Hard Choices for Loving People CPR, Artificial Feeding, Comfort Care and the Patient with a Life Threatening Illness: Provides a resource for professionals, patients and their families regarding end of life decisions. Written by Hank Dunn, a full time chaplain at a nursing home and hospice.

Long Distance Caregiving

Caregiver

Empowering Caregivers

Caregiving from the National Library of Medicine

Take a Break: Visit a Farmer’s Market and Eat Well

I was fortunate to grow up in a city with a very active Farmer’s Market year round, six days a week. Now that I live in the country, I have to travel a bit, but I can still pick up local produce, cheeses, bread, flowers etc. There is also the option of buying items, such as eggs and meat, from local farmers and of course, this is a wonderful time of year to “pick your own.”

If you don’t know where to go, check out Local Harvest. This website offers a great deal of information including local farms, farmer’s markets, restaurants and more. This site also let’s you know where opportunities exist for local community supported agriculture (CSA). While most likely too late for this year, farmer’s, who are part of a CSA, offer 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.

Try some new recipes based on the produce you purchased. Local Harvest’s newsletter includes a number of recipes to try. The New York Times Recipes for Health is another good site. Of course, your local vendors will tell you their favorite recipe.

Bon Appetite !

The Gift of Than

This is a different type of post, but then it’s been a different kind of week.

The past several weeks I have been helping a friend prepare for her wedding. Set in the country, it’s part medieval, part midsummer night’s dream and 100% magic. Anyone that thinks magic just happens is clearly on the receiving end only.

By the end of the week, my feet and back ached and I was worrying about having the right clothes to attend the various events. I was so weary, I had half a mind to just pass on most of the festivities. Then I received an e-mail that the son of two people I work with had died that afternoon.

Than had battled cancer for 13 years. He went from late adolescents to adulthood trying one treatment after another. And here I was whining about a few aches and pains.

My thoughts quickly shifted. I felt so sad for my friends, who dearly loved their son. Who cared what I wore to these various functions? What mattered was being present to honor the bride and groom. Ultimately, a few aches were a small price to pay to see the smiles of the couple and their respective families and friends. Thank you Than for this reminder.

Years ago, when I was attending a hospice workshop, we were given a copy of “Final Gifts.” Written by two hospice nurses, the book provides a wealth of information on the dying process and how much the living can learn and be given if receptive to the “gift” of a loved one’s passing. My initial reaction was, “you’ve got to be kidding me,” but it has proven true time and again. In fact, the person running the workshop explained that her husband’s death, while the hardest gift she had ever received, was still gift.

The second “gift” I received from Than came in the form of a quote from one of the people we work with. He too had an adult son die. He wrote the following about attending the funeral or visiting the family. Unfortunately, having lived thru this situation, I know that having friends at the funeral or in your home the following week, helps soften the pain that they are all feeling. If you can make it, I am sure that they will greatly appreciate a visit.

I have tried to explain to friends and colleagues why you show up for funerals whether you know the deceased or not. I couldn’t have put this any clearer and it’s a quote that I will distribute in the future.

In the e-mail relating Than’s passing, there was additional note from a friend and pastoral figure for Than. He spoke of how Than was savoring the moments he had with his family, at their home on a lake. He knows his body is failing him, but he also seems able to appreciate joy - the joy in the sunlight bouncing off the lake, the joy in the waves piling off the boats, the joy in the children digging a hole to China in the sand.

My final thanks goes to Than for reminding me to live in the present and find joy in what I have.

Take a Break: Watch the Clouds

Recently, I spent an afternoon lying in a hammock, supposedly reading, but in reality I napped and watched the clouds roll by. I became enthralled with two clouds that were about to collide. One was shaped like the United States and the other like Europe. I thought of continental drift theory and was mesmerized for a long time. It reminded me of being a child again, lying in bed with my Aunt on a windy March day, and watching the clouds fly by. It’s incredibly relaxing.

If it’s in the middle of the night and can’t see clouds, or it’s a “blue sky day,” as my son calls a cloudless day, try some of the following videos

Beautiful Clouds

Dance of the Clouds

Blue Skies and Fluffy White Clouds (Time Lapse)

Dangerous Supplements

According to the August Consumer Reports, article “Dangerous Supplements,” What consumers might not realize, though, is that supplement manufacturers routinely, and legally, sell their products without first having to demonstrate that they are safe and effective. The Food and Drug Administration has not made full use of even the meager authority granted it by the industry--friendly 1994 Dietary Supplement Health and Education Act (DSHEA). As a result, the supplement marketplace is not as safe as it should be.

Consumer Reports has identified a dozen supplement ingredients that we think consumers should avoid because of health risks, including cardiovascular, liver, and kidney problems. We found products with those ingredients readily available in stores and online.

Working with experts from the Natural Medicines Comprehensive Database, an independent research group, we identified a group of ingredients (out of nearly 1,100 in the database) linked to serious adverse events by clinical research or case reports. To come up with our dozen finalists, we also considered factors such as whether the ingredients were effective for their purported uses and how readily available they were to consumers. We then shopped for them online and in stores near our Yonkers, N.Y., headquarters and easily found all of them for sale in June 2010.

The “Dirty Dozen” are
- Aconite
- bitter orange
- chaparral
- colloidal silver
- coltsfoot
- comfrey
- country mallow
- germanium
- greater celandine
- kava
- lobelia,
- yohimbe.