Saturday, April 28, 2012

Ways to Fulfill the Obligation of the Cured/Healed

In October 1996 Lance Armstrong was diagnosed with end stage testicular cancer, which had spread to his brain, lungs and abdomen. In 1997, he established the Lance Armstrong Foundation and the yellow bracelet and the marketing concept “Live Strong” were born. Oh and he also went on to win seven Tour de Frances, the famous long distant bicycle race.

In his various presentations, Armstrong explains that when he left the hospital after several months of inpatient treatment, his oncologist Dr. Craig Nichols, "asked me if I wanted to hear about the 'obligation of the cured. I answered yes, since I liked the word cured, but he told me it wasn't about being cured, since he couldn't promise me that. It was about how much you want to share your story."

Armstrong often quotes one of my heroes, whose books and life help to shape what I’ve done with my own career. Albert Schweitzer, the famous Alsace-Lorraine doctor, theologian, missionary and organist who spent a life time working in Africa, wrote the following about why doctors must go to the colonies as a humane duty mandated by the conscience of society. Maybe this quote summarizes best what is meant by the “obligation of the cured.” Whoever among us has learned through personal experience what pain and anxiety really are must help to ensure that those out there who are in physical need obtain the same help that once came to him. He no longer belongs to himself alone; he has become the brother of all who suffer. Out of My Life and Thought: An Autobiography by Albert Schweitzer

As I have written before, I tend to use the term heal instead of cure, since ultimately we all die of something. Semantics aside, what is that we can do to help others who are dealing with similar issues to our own? While few of us are in the position of a Lance Armstrong, there is a great deal we can do under the idea of “obligation of the cured.” Some of the best examples I’ve seen where the men and women, living with HIV/AIDS, particularly in the early years of the AIDS epidemic. They formed organizations, fought the FDA, City Hall, and governmental agencies, started “buddy programs” and told their story in public. This was no small task, as there was considerable prejudice against those with this virus.

While this post was prompted by watching Armstrong’s 2011TEDMed presentation, it is inspired by the HIV+ men and women who stood up for themselves and their peers to create a better world for many. One of the important things I learned from them, which is now being supported by research, is that when you give to others, you actually improve your own sense of well-being.

Below are ways to fulfill the “obligation of the cured.”
Be an E-patient and share your data
• Participate in fundraising activities
• Organize a fundraiser. This can be as simple as donating all the money from a yard sale to a condition specific organization or to someone who needs help.
• Work in disease prevention, e.g. help build out door space for people to recreate; take a healthy meal to a neighbor
• Be an advocate for others, help them navigate the system
• Share your story
• Listen to others’ stories
• Support healthcare legislation by calling, e-mailing your state and national representatives.
• Testify about what it’s like to live with your condition.
• Accept speaking engagements so that you can tell your story in a variety of places
• Tell someone you are there for them and mean it
• Do small things, like send encouraging e-mails or notes, to those who may be in treatment and/or are in the middle of a “flair.”
• Live your life
• Wear a ribbon, pin or another item, which lets people know you support others in the healing process
• Identify yourself as a thriver not a victim
• Help to educate others
• Start a support group-in person or on-line
• Participate in a support group
• Offer your skills. Volunteer. Don’t know where help is needed? Try VolunteerMatch
• Donate clothing, cars or other items that can be repurposed and profits given to the non profit of your choice
Donate/recycle durable medical goods and/or unused medications when possible
• If you own a business, offer things like copying and staff resources to help local organizations.
• Grow a row-donate vegetables from your garden to local groups and people that would benefit.

Thursday, April 26, 2012

4th National Prescription Take Back Day

The federal Drug Enforcement Agency's fourth National Prescription Drug Take-Back Day is Saturday, April 28, 2012, 10:00 a.m. - 2:00 p.m. Check for locations nearest to you. Check out what to do with unused medical supplies

Wednesday, April 25, 2012

Take a Break: Repurpose Something

n keeping with this past weekend’s celebration of Earth Day, this week’s take a break is all about repurposing. What do you have lying around your house that you don’t want, need, like, or use that could be reconfigured to be something you might have a use for and/or enjoy? Need some ideas?

• Have earrings, bracelets or other pieces of jewelry you don’t wear, particularly the earring that’s lost its mate? Take them apart and create something new.

• If you have little slivers of soap, put them in a microwavable dish, zap until melted and form into a new bar of soap. A mug that’s chipped or no longer has a handle can make a great mold. You can also do the same thing with odds and ends of candles. However, better to use a double boiler (a tin can with the wax in it, sits in a bath of water) for candles.

• Have leftover stale bread? Make croutons.

• A 60 minute cassette has approximately 285 feet of tape. Because it’s strong and flexible, it can be used like string (bundle up old newspapers). You can also make a Cassette Tape Table Lamp (or you can just say it 10 times really fast).

• Take an old door, repaint and turn into a table. Saw horses can be used for legs. For doors with panels, you can create miniature Zen gardens, by placing sand in them and creating interesting displays, covering it with a glass top to keep it in place. On the subject of Zen gardens, make one from an old bowl or other object you aren’t using.

• Have a stack of birthday, holiday or other occasion cards that you don’t know what to do with? Try some of these ideas:
- If you are a scrap booker, cut out shapes, or use punches and make items that will be useful for future scrapbook projects.
- Cut up to create “to/from” gift tags.
- Glue cut out shapes on to card stock and make new cards

• Lots of paper, magazines? Try Iris Folding.

• Haven’t had a chance to recycle soda cans? Turn them into art instead.

• Check out Websites/Blogs on repurposing
49 Creative Reuse Ideas
50 Repurposed Project Ideas
Blue Velvet Chair
My Repurposed Life

While not repurposing, but inspiring, check out WikiPaintings. The project aims to create high-quality, most complete and well-structured online repository of fine art. We hope to make classical art a little more accessible and comprehensible, and also want to provide a new form of interaction between contemporary artists and their audience. In the future we plan to cover the entire history of art — from cave artworks to the new talents of today.

Saturday, April 21, 2012

Rational Healthcare

In reading an interview of Dr. Otis Brawley’s new book, How We Do Harm: A Doctor Breaks Ranks About Being Sick in America,” I came across the following sentences by Brawley that mirrored by own thoughts after more than 30 years working in health care. A lot of people didn’t seem to realize that in a lot of the discussion, we’re talking about human beings who are suffering because of lack of health care, and sometimes we’re suffering because of overuse of health. People are so focused on fears about rationing of health care. The talk should not be about rationing health care but about rational health care. So much of what we do in health care is irrational.

This morning I posed the following question to myself, what three things could be changed that would create a more rational healthcare system? While I do understand that putting these three words together is a bit of an oxymoron, below is my “first pass” thinking. What would yours be?

• Those who use healthcare and those who provide it accept that death is part of life. Often, more money is spent at the end of a person’s life then at any other time. As much of a concern as the fiscal piece is, the person and those that love them, can loose quality (and even quantity) of life as well as reduce, or even eliminate, the ability to bring closure.

• We accept the responsible for the choices we make and their outcomes. One of the best examples of this came from a nurse working in hepatitis C (HCV). She was beside herself about a patient, whom they had successfully treated for the virus, who then continued to engage in behaviors so he became re infected. While he wanted treatment, he also wasn’t planning on stopping the behaviors that caused him to be infected. She voiced her concern at a meeting where a number of those in attendance were HCV infected. A number of them, as well as some of the providers, were clear that this individual should not be treated until they were ready to commit to their own well being. Interestingly, some believed that it was the responsibility of the provider to heal the patient regardless of the choices the person made. While this is HCV, which comes with a dark cloud over it because the primary reason for infection is IV drug use, is this really all that different from the diabetic that refuses to give up sweets, alcohol and a sedentary life style?

• Understanding that more testing and treatment don’t necessarily translate to better outcomes. Providers order more tests and treatments then are necessary for a host of reasons, with two of the leading ones being fear of being sued and “the patient wanted something done.”

Wednesday, April 18, 2012

Take a Break: Share a Secret Anonymously

PostSecret is an ongoing community art project where people mail in their secrets anonymously on one side of a homemade postcard. PostSecret, 13345 Copper Ridge Road, Germantown, MD 20874, USA Some are posted at the PostSecret blog, others appeared in books (PostSecret, My Secret, The Secret Lives of Men and Women, and A Lifetime of Secrets), or in an international traveling art exhibit.

Frank Warren is the creator of The PostSecret Project, a collection of highly personal and artfully decorated postcards mailed anonymously from around the world, displaying the soulful secrets we never voice. Since November 2004, Warren has received more than 500,000 postcards, with secrets that run from sexual taboos and criminal activity to confessions of secret beliefs, hidden acts of kindness, shocking habits and fears. PostSecret is a safe and anonymous "place" where people can hear unheard voices and share untold stories. Watch Frank Warren’s TED Talk.

Check out the PostSecret website, be inspired and create your own “share a secret” postcard. You don’t have to mail it.

Don’t have a secret? Well I have one-I love Berger Cookies! As an adult, you’d figure I’d grow out of this overly sweet treat. But noooooo…. The only place you can buy them is in my hometown of Baltimore. Good thing I live in Vermont, but wait…. I just found a recipe for them on-line. Yes!!!

Need some inspiration? Watch Alice Herz Sommer. At age 108, she survived the Holocaust and cancer. Alice lives in a tiny London flat, practicing piano for three hours every day. At 104, she wrote about her life “A Garden of Eden in Hell.” The secret to her long life and optimism, she says, “I look where it is good.”

Saturday, April 14, 2012

Comforting Self, Comforting Others

Whether it’s learning about a diagnosis, significant change in health status, the death of a loved one, job loss, or even just a terrible day at the office, we all need comfort at some point in our lives. So how do we go about comforting ourselves and others?

What made me consider writing on this particular topic is a passage from George Bonanno’s book “The Other Side of Sadness: What the New Science of Bereavement Tells Us About Life After Loss,” which I happen to be reading at the moment.

“We are not accustomed to thinking of grief as a process of finding comfort. The idea seems a bit odd, but this is precisely what resilient people tend to do. Regardless of what the relationship was actually like, resilient people are generally better able to gain a feeling of comfort from remembering the relationship during bereavement. They are also more likely to find comfort in talking about or thinking about the deceased, which, they report, makes them feel happy or at peace.

People confronted with the pain of loss need comfort. We see this same need in just about anyone faced with aversive circumstances. Children who survive poverty or abused, for example, usually have someone in their life they can talk to, someone to lean on, someone they know will be there even when everything else seems to be falling apart. This person might be a close friend or confidant, or perhaps a positive adult figure. The availability to a disadvantaged child of a caring and supportive helper has such a salubrious effect, in fact, that it may even cancel out a genetic risk for depression. The same is true of adults exposed to potentially devastating events like war, assault, or natural disaster. They consistently fare better when they have other people to turn to.”

From the time we’re babies, we learn ways to self-comfort. As we get older, activities such as thumb sucking, are replaced by a variety of different techniques, such as taking a walk, eating chocolate (that is a food group isn’t it?), talking to a friend, watching television, having a drink (or more), yelling etc. Some ways are better than others. Some are effective for the moment only, and others can help to reorient us in our thinking and offer longer-term strategies for coping with a crisis.

If your current modes of self comfort work really well, share them via Facebook or the comment section below. If you need some new ideas, consider some of the following:

• Practice Compassion of Self and Others
- Sylvia Boorstein’s Compassionate Meditation
- Mindful Self Compassion (includes both written and audio instructions)

Live in the present/Practice Mindfulness: Be aware of your present and not trying to relive the past or be in fear of the future.

• Engage the five senses: Walk in nature, so you see beauty and smell the freshness of the earth and sea. Listen to music or sounds that provide you with comfort. Some people find comfort listening to a talk by someone. Dharma Seed has a wealth of talks for free on-line, with over 2,000 alone from Spirit Rock. Have a special treat where you savor each bite. Engage the power of touch by hugging someone, taking a bath, pet an animal, sink into the comfort of a freshly made bed etc.

• Remind yourself not to ruminate. A friend, who happens to be a member of the clergy, told me that one of the strategies she used to cope with the death of her son was to remind herself that she didn’t need to think about it all the time. Giving herself scheduled breaks helped her a great deal.

• R.A.I.N: This is a very common acronym used in the mindfulness community to help people deal with strong emotion. This particular one is from “A Mindfulness-Based Stress Reduction Workbook."
“R” is to recognize when a strong emotion is present.
“A” is to allow or acknowledge that it is indeed there.
“I” is to investigate and bring self-inquiry to the body, feelings, and mind.
“N” is to non-identify with what’s there. This non-identification is very useful in that it helps to deflate the story and cultivates wise understanding in the recognition that the emotion is just another passing mind state and not a definition of who you are.

• Laugh. Be around people that make you laugh.

• Seek out friendships.

Having been so involved in the running of my town’s shelter after Irene, it was quickly apparent to me that people know instinctively what to do when they and others are in extreme crisis. There was no need for specialists, as we helped each other with the basics-shelter, warmth, food, hugs, and factual information as it was available.

Below are some comforting things you can do for others:
• Reach out to them by visiting, calling, sending a text, e-mail or a letter to them. Let them know they are important to you and that you are available for them. Nighttime is often the hardest for people, so scheduling a visit then or being available for a late night phone call is very helpful. Keep in mind that the more significant the loss, the more important it is for you to stay connected over a longer period of time. Don’t tell people that they can call you any time or tell them you’ll be in touch because you think it’s the “correct” thing to do. Only make promises you can keep.

• Be present. Listen to what they are saying. Sometimes all that is needed is just to be an attentive listener. Other times, they may want more of a dialogue. I know that when I was in the throes of deep grief over the death of a significant loved one, it helped me to hear the stories of others who had similar experiences. This was also true when I received the results of a medical test that scared the hell out of me. That said, be careful about sharing your experiences. At certain stages, they may just want to vent and all you need to do is listen. My sense is that women, more than men, tend to comfort each other by sharing their stories.

• Let them choose the topic: Trying to force someone to talk about their situation isn’t necessarily helpful. “You need to talk about it,” isn’t a golden rule. In fact, in some cases, it has the opposite effect.

• Food is a wonderful comfort item. This can be done in many forms-a delicious home cooked meal; dinner out at a favorite restaurant; gift certificate to a much loved eatery; a fruit basket; or a favorite dish that can be eaten at any time. Be mindful of what you offer as far as food. While manning the shelter following Irene, I thought if one more person brought brownies I was going to scream. As one volunteer pointed out, “we’re pissin’ into the Black River (the town’s sewer’s were destroyed) and feeding the town Dunkin Donuts.” Half the time people didn’t even know what they were putting in their mouths, so better they snack on healthy foods, like carrots and dip, grapes etc. Everybody has their own idea of what comfort food is, so try to bring what would be most appropriate. Ask them what they’d like.

• Help where it’s needed. There are things you can do that you know will make a difference without even asking-emptying the trash, taking out the garbage and recycling, washing dishes, cleaning etc.-and there are others where you do need their input. Offer to help as you have skills, time and the emotional energy to do so. Be careful about offering advice. Even if they ask for it, just be mindful of what you are saying.

• Give assurances. When someone is dealing with a major crisis, they can exhibit some pretty over the top behavior. This can be scary for you to witness and even more frightening to the person. However, this is often very temporary and one of the most comforting things you can say is “you are having a normal reaction to a very abnormal set of circumstances.” In general, it takes about a week to 10 days for the brain to shift to the “new normal.” Letting them know they wont always feel this bad can be a real help. If a person is still exhibiting extreme behavior after six months since the event, or is trying to harm themselves or others, get professional help. Note that six months is currently considered the minimal time passage for identifying a prolonged grief reaction. “As much as might want to encourage a person to seek treatment after a loss, we can’t reliably determine whether there is a true psychological problem until at least six months have passed.” Bonanno, George “The Other Side of Sadness” pg 110

• Encourage the basics of getting up, brushing teeth, eating, dressing, taking a short walk, going to bed etc.

• Engage in activities that they generally enjoy.

• Laugh.

As always, when you are in a position of helping others through difficult situations, take care of yourself. If you don’t, your effectiveness dwindles rapidly.

Other posts related to this topic:
Ten Things I learned from Irene

Six Months Later: Learning from Crisis

Is Counseling Necessary to Cope with a Crisis?

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

How to Respond When Someone is Ill or Injured

Healing the Whole Person: Ways to Increase Well-Being

Wednesday, April 11, 2012

Take a Break with Thomas Jefferson

Since Thomas Jefferson’s birthday is April 13, (1743) today’s “take a break” is all about celebrating the third president of the United States and the author of the Declaration of Independence. Some fun things to do:

Make Macaroni and Cheese: Jefferson loved macaroni and cheese and served it during his presidency at dinner parties , which certainly helped to popularize the dish in America. Below is a recipe that Jefferson wrote down:

6 eggs. yolks & whites
2 wine glasses of milk
2 tb of flour
a [?] salt

work them together without water, and very well.
roll it then with a roller to a paper thickness
cut it into small pieces which roll again with the hand into long slips, & then cut them to a proper length.
put them into warm water a quarter of an hour.
drain them.
dress them as maccaroni._
but if they are intended for soups they are to be put in the soup & not into warm water

Tour Monticello on-line

Experience a day in the life of Jefferson

Learn about Deism: While Thomas Jefferson may have played a role in governing his local Episcopal Church, in terms of his belief he was inclined toward Deism. Anticlerical, he said, in “every country and every age, the priest has been hostile to liberty. He is always in alliance with the despot...they have perverted the purest religion ever preached to man into mystery and jargon, unintelligible to all mankind, and therefore the safer for their purposes."

Do you know what inventions Thomas Jefferson was responsible for? Learn about his secret decoding device, farm implements and more.

Garden. Jefferson was an avid gardener, keeping a gardening journal for 60 years. Learn more about his gardens.

Saturday, April 7, 2012

Choosing Wisely: To Test/Treat or Take a Pass

This past week, nine medical organizations (American Academy of Allergy, Asthma & Immunology, American Academy of Family Physicians, American College of Cardiology, American College of Physicians, American College of Radiology, American Gastroenterological Association, American Society of Clinical Oncology, American Society of Nephrology, and the American Society of Nuclear Cardiology) along with business and consumer groups have started an effort to reduce costs and reduce patients’ exposures by minimizing the use of medical tests and treatments only when they are needed. Called Choosing Wisely, this is a project of ABIM Foundation (Advancing Medical Professionalism to Improve Health Care).

One of the efforts of the Choose Wisely campaign is having patients and physicians ask five questions. Nine United States specialty societies representing 374,000 physicians developed lists of "Five Things Physicians and Patients Should Question" in recognition of the importance of physician and patient conversations to improve care and eliminate unnecessary tests and procedures. These lists represent specific, evidence-based recommendations physicians and patients should discuss to help make wise decisions about the most appropriate care based on their individual situation. Each list provides information on when tests and procedures may be appropriate, as well as the methodology used in its creation. For example, under Family Medicine, the list of five includes:
• Don’t perform a Pap smear on women younger than 21 or who have had a hysterectomy for non-cancer disease.

• Don’t order EKGs or any other cardiac screening for low-risk patients without symptoms.

• Don’t use dual –energy x-ray absorptiometry (DEXA) screening for osteoporosis in women younger than 65 or men younger than 70 with no risk factors.

• Don’t do imaging for low back pain within the first six weeks, unless red flags are present.

• Don’t routinely prescribe antibiotics for acute mild-to-moderate sinusitis unless symptoms last for seven or more days, or symptoms worsen after initial clinical improvement.

Earlier this year, the American College of Physicians issued guidelines on 37 types of cases when physicians should think twice before ordering tests that maybe wasteful and possibly harmful to the patient. Annals of Internal Medicine

Also published this week, was another study on mammography, Annals of Internal Medicine, which, according to Harvard School of Public Health researchers along with those from Norway and Sweden, 15 to 25 % of invasive cancers detected via mammogram would never have turned life threatening. Further, screening afforded women only a slightly smaller risk of dying from breast cancer and didn’t appear to reduce the total number of deaths from any cause. So how often should breast screening be done using this technology?

The bottom line is that the medical profession is coming to terms with the fact that just because the technology is there, doesn’t mean it’s right for every patient all the time. That approach not only escalates health care spending, but it also posses real danger to the patient. Over testing and treating can be just as dangerous as not testing or treating. This is a scary situation for some people, particularly those who believe more is better and that the latest directives are “rationing” of healthcare.

The take home is that both patient and provider must have open dialogue about what makes sense for their particular situation. This requires patient and medical provider to educate themselves about testing and treatments and to discuss the pros and cons given the specifics of your situation.

The next time you see your provider, and there is a discussion about tests and treatments, consider the following questions: What is the purpose of doing the test? Are there any risks? What are the costs and does it provide significant information to warrant it? Does the outcome affect treatment options?

Several years ago, my son developed a very clear allergy to gluten. He went to the gastroenterologist, who performed a blood test for Celiac’s Disease. Needless to say, since he no longer eats gluten, it came back negative. The doctor offered two choices, do a biopsy to determine if it is Celiac’s or do nothing. Either way, since staying off gluten made him feel much better, the treatment would be the same. Doctor and patient both agreed that a biopsy didn’t make sense at this time.

The cost of testing and treatment is a factor that needs to be considered. Find out upfront what tests and treatments cost. Are there lower cost options? Are there behavior changes that can be tried? Can a generic prescription work as well as a name brand?

Ultimately, you have the right to refuse or request testing or treatments. A good discussion with your provider can help you make the best choice for you.

Wednesday, April 4, 2012

Take a Break with Peeps

For at least eight years, my friends and family have done some interesting things with marshmallow Peeps. On Easter, we have a “Peep A Pault” contest, where we see who can make a device that tosses the yellow chicks the farthest. My husband has a knack for winning this competition. One year he took a helium balloon, attached a tiny basket, inserted the peep as the balloonist and set it sailing. We never did see where it landed. People have made catapults, and peep cannons as well as strapped them to the backs of bottle rockets and inserted them into tennis balls, which were then launched with another device.

We’ve had Peep eating contests-very gross so don’t recommend it. Peep toss (who could throw one the farthest) and last year, my husband and I went out well after dark and “peeped” houses. I made a variety of strange wreaths and ornaments out of peeps, which we hung on friends’ doors, placed in their mailboxes and strung on their house. One friend had her niece and nephew visiting for Easter. They were convinced that the Easter bunny had visited.

This year, we’re working on “Put Put Peep,” a miniature golf course with peeps. I’m not giving any details away until after Easter.

So some suggestions for Peep Novelties:

Make Peepshi (Peeps as Sushi): Think Rice Krispie Treats, fruit leather and beheaded peeps

Peep Pelting: Make marshmallow blow pipes (cut PVC piping (inner diameter 1/2 inch) in 12 inch lengths). Use miniature marshmallows as ammo. Line up peeps as targets. Insert ammo and see how many Peeps you can knock down.

Peep S’mores: Use a peep for the marshmallow in the graham cracker, marshmallow and chocolate camp trip. You can “warm” the peep in the microwave. It only takes a few seconds.

Peepsicles: Stick a lollipop stick in the peep, dip in chocolate, dry and serve.

Sunflower cake with Peeps: Make a layered cake and ice with chocolate frosting. Place yellow peeps around the rim of the cake top and place chocolate kisses in the middle.

Ten Fun Facts About Peeps

If Peeps aren’t that appealing to you, check out previous Easter Take a Breaks.

Decorate Eggs

Make an Easter Basket/Remembering Anderson/Roosevelt

Make a Ribbon Wreath

Jellybean Projects

Reusing/Recycling Easter Candy