Saturday, July 31, 2010

I am not my body/ Awareness and Identity

Recently, a friend, who has been living for many years with a chronic disease that can flare at any time in just about any part of the body., has been having repeated flares, reactions to medications and various issues relating to getting older. Listing theways the disease has manifested itself -skin outbreaks, lesions in the brain, eye problems, bone loss etc., my friend exclaimed, “I am not my body! Who and what I am has nothing to do with my disease.”

While I have heard other people say something similar, it was how they spoke of their body’s willy nilly approach to laying dormant for long stretches-“maybe it tired itself out for awhile”- that struck a chord.

According to mindfulness psychologist and Harvard Professor Ellen Langer, “When you think you have a chronic illness, that’s translated as uncontrollable. Now if something can’t be controlled you don’t bother trying to control it. It’s almost never the case that the person has symptoms all the time. Well what’s happening when you don’t have the symptoms and to what can I attribute this change? The simple act of examining the situation is good for your health.”

When I asked when they felt the best in the past several years, the response was immediate-“when I eat regularly and healthy and when I get exercise.” Further questioning revealed they were taking medication. In fact they posed the question, “could it be the drugs or daily habits” that resulted in feeling better?

We also discussed stress. “I’m not a stressful person,” yet they described situations- changes in key personnel at work, budgets being cut etc-where you would not be human if you weren’t experiencing some anxiety.

With some examination and discussion, it became clear that the flares weren’t necessarily random events. Eating healthy, exercising, medications and reducing stress as much as possible all contributed to a much better sense of well being.

After I began working on this post, I received the weekly e-mail from “Speaking of Faith,” which provided information about this Sunday’s interview. It is with Rachel Naomi Remen, a physician who has been living with a debilitating illness most of her life. According to the host of the show, Krista Tibbets, Remen is not a religious figure per se, rather a kind of quiet modern-day mystic. Her wisdom is somewhat countercultural. Living well, she says, is not about eradicating our losses, wounds, and weaknesses. It is about understanding how they continually complete our identity and equip us to help others. As a doctor, she's seen time and again how even deep pathologies and failures become the source of unsuspected strengths. She believes that however difficult our lives become or how fraught our choices, most of us never lose our capacity to be whole human beings. We may forget that potential in ourselves, yet it can reappear full-blown in times of crisis. The hope that her stories engender is itself a healing experience.

This rang so true for my friend, who is incredibly generous with their time and talents. Life is much richer because of this person.

The “I’m not my body” comment, also reminded me of the Introduction to the handout Healing the Whole Person
great things can be achieved by connecting with your inner self, identity, soul, spirit or whatever form you choose to call the core of who you are versus what you appear to be.

One of the “gifts” of chronic illness and aging is that we do learn that appearance isn’t who or what we are. Yet, the responses and choices we make as we heal and accept who we are, versus what we aren’t, create our inner and most important self.

It is key to know that while body image doesn’t define us, we must listen to what our body is telling us. Understanding who you are and connecting with your inner core does not negate body awareness.

Take a break tomorrow and listen to the Rachel Naomi Remen’s interview. You can either download it, or find out the times it will be broadcast in your areat the NPR website.

Wednesday, July 28, 2010

Take a Break: Spatter Paint

I was at a friend’s house last week and happened to notice their spatter painted floor. It reminded me of being at Girl Scout camp and using a piece of old screen, tooth brush, leaves and some paint to make a lovely piece of artwork.

Like most simple techniques, you can make a “spatter” painting that is simple or elaborate. You can be 5 again or Jackson Pollock.

- Use a leaf or something else as a stencil.
- Lay out sufficient newspaper to keep from getting your table or other surface covered with paint. If it’s a nice day, do it outside.
- Put your paper on top of the newsprint and carefully place your leaf or stencil.
- Using an old toothbrush-can always pick up a variety at the Dollar Store- wet your brush and then dip it into paint (craft paint or acrylic) that has been watered down. Rubbing on a watercolor pad also works.
- Run your thumb to flick back the bristles and spatter the paint over your stencil.
- Don’t want to get your thumb dirty? Use a toothbrush instead or find a piece of mesh and run the toothbrush over it.
- After you are satisfied with the amount of coverage, let the paint dry and then carefully remove the stencil.

You can use this technique to make T-shirtss , wrapping paper and even do your nails!

The latter is a very fun video and gave me all sorts of ideas what I want to try this holiday season.

Sunday, July 25, 2010

Part II If it Sounds to Good to be True: Health Insurance Scams

As a follow-up to yesterday’s post If it Sounds to Good to be True: Scams, Frauds and Quacks, today’s post focuses on health insurance. With the new health reform law going into effect, be aware of even more scams. According to the National Health Care Anti-Fraud Association

• Don’t buy insurance online or over the phone, based on mailers, fliers or ads without investigating first and clearly understanding what you are buying.
• Don’t respond to high pressure or fear tactics from aggressive salespeople.
• Don’t provide your Social Security number, bank account numbers or credit card numbers before confirming that you are dealing with a legitimate company, and don’t give out personal information over the phone.

• Do take the time to research any company before purchasing a health insurance policy from it—a few minutes invested in searching the Internet is worth your time.
• Do check with your state’s Insurance Department to make sure the company is licensed to do business.
• Do compare insurance coverage.
• Do document your dealings with any company from which you are considering purchasing insurance.
• Do get a list of doctors and other providers that participate with the insurance plan you are considering.
• Do ask LOTS of questions.
• Do report suspected fraud to your state insurance department.

If you suspect or know you have been victim to any of the following by a health provider contact the National Health Care Anti-Fraud Association

• Billing for services that were never rendered—either by using genuine patient information, sometimes obtained through identity theft, to fabricate entire claims or by padding claims with charges for procedures or services that did not take place.

• Billing for more expensive services or procedures than were actually provided or performed, commonly known as "upcoding"—i.e., falsely billing for a higher-priced treatment than was actually provided (which often requires the accompanying "inflation" of the patient's diagnosis code to a more serious condition consistent with the false procedure code).

• Performing medically unnecessary services solely for the purpose of generating insurance payments—seen very often in nerve-conduction and other diagnostic-testing schemes.

• Misrepresenting non-covered treatments as medically necessary covered treatments for purposes of obtaining insurance payments—widely seen in cosmetic-surgery schemes, in which non-covered cosmetic procedures such as "nose jobs” are billed to patients' insurers as deviated-septum repairs.

• Falsifying a patient’s diagnosis to justify tests, surgeries or other procedures that aren’t medically necessary.

• Unbundling - billing each step of a procedure as if it were a separate procedure.

• Billing a patient more than the co-pay amount for services that were prepaid or paid in full by the benefit plan under the terms of a managed care contract.

• Accepting kickbacks for patient referrals.

• Waiving patient co-pays or deductibles and over-billing the insurance carrier or benefit plan.

Saturday, July 24, 2010

Part I: If it Sounds to Good to be True: Scams, Frauds and Quacks

People with chronic and/or life-threatening conditions are at high risk for scams and fraud. Because these conditions have no “cure,” and can cause pain, ongoing extensive and expensive treatments, and/or considerably anxiety, quack cures and treatments abound.

If you attend a support group, on-line or in-person, you will hear people describe a variety of things they are trying either prescribed by their provider or something they read about. There are many different approaches to treatment. Support groups are good places to discuss what’s worked and what hasn’t. However, they also lend themselves, particularly on-line groups, to practices that may turn out to be less than healthful.

Once distrusted, and viewed as quackery, practices such as meditation, relaxation, yoga, Qigong, mindfulness training, and acupuncture are now part of many hospitals, cancer centers and clinics. Called complementary and alternative medicine (CAM), a number of hospital website’s include these options when discussing treatment and prevention. The Mayo Clinic’s Diseases and Conditions website is one such example. There is also a division of the National Institutes of Health for CAM, which is funding research into a number of different alternative treatments. The NIH site includes a number of fact sheets and information on various treatments.

Tomorrow’s post will focus on health insurance scams. This post is focusing on medical scams and frauds that are developed to prey on people that are vulnerable. The developer of such treatments is your basic “snake oil” salesman.

There are major problems with such treatments:
• it can be harmful to your health;
• it’s expensive and insurance wont cover it;
• it could delay, or interfere with treatments that work; and/or
• while you are experimenting with an un tested treatment, your disease could be progressing.

Warning signs of a scam:
• The product promises a cure for a disease, such as AIDS, where there is no cure.
• The product is a quick cure for a wide range of ailments. Most products are effective in certain areas.
• The evidence given for its success is testimonials only. Look for research to back up claims.
• There are a number of products that claim “based on scientific study,” but the “study” will turn out to be designed by the manufacturer and will never appear in a peer reviewed medical journal.
• The term natural is often used to suggest that a product is safer than conventional medicine. Because many of these products are not under the Food and Drug Administration (FDA), you have no way of knowing what’s in the product or how much.
• Avoid products where the following key words are used in advertising miraculous cure, amazing breakthrough, foolproof, suppressed treatments, secret ingredients, time-tested or new-found.
• Treatment is only available privately, for a short time or from only one source. Be even more skeptical if it requires payment in advance.
• The product is an experimental treatment only available if you pay to be part of study. Genuine clinical trials provide the treatment free of charge.
• An “infomercial,” newspaper, magazine or website promotion
• Satisfaction Guaranteed. Marketers of fraudulent products rarely stay in the same place for long. Many people never get their money back.
• Lots of medical jargon. Terms and scientific explanations may sound impressive and may have an element of truth to them, but the public "has no way of discerning fact from fiction," says the FDA. Fanciful terms can cover up a lack of scientific proof.
• “The drug companies and medical providers don’t want you to know about this product because it would undercut their profits.” While drug companies may be profit driven, medical providers are in the business to heal and treat.

Ask questions, such as:
• Written information about the product
• The contact information about the manufacturer. Check them out.
• Was the treatment approved by the FDA. If not, why not?
• Where’s the research? How old is the research and who sponsored it?
• What are the side effects and risks?
• Where can your health provider call for more information?

Talk to:
• Your medical provider about what you want to try.
• Condition specific organizations-e.g. American Heart Association.
• Family members and friends.
• Better Business Bureau or local attorneys generals’ office to see whether other consumers have lodged complaints about the product.
• The FDA office closest to you. fed_state/dfsr_activities/dfsr_pas.html

The ultimate question to ask yourself is “Does it sound to good to be true?” If it does, it probably isn’t true.

Wednesday, July 21, 2010

Take a Break: Beat the Heat

In keeping with the rash of 90 plus degrees days this summer, today’s “Take a Break” is all about relaxing and “beating the heat.” Take your pick:

• Make the following:
- “Cooling tie” and wear it.
- Paper fan and wave it.
- Rice cold compress. Fill a clean sock with rice and put it in the freezer. Rice retains cold for a long period of time. Let it stay in the freezer for about two hours before using it.

• Get wet. Go swimming. Visit a water park for the day. Stand in a kiddie pool. Run through a sprinkler or fountain. Take a cool shower or bath. Soak your feet in ice water. Spritz yourself with water with a cheapie spray bottle, or splurge and get one with a mini fan.

• If you are fortunate to live where it’s not humid, place a shallow bowl of ice in front of a fan and enjoy the cool breeze.

• Stretch out in the shade, lie on a hammock or lounge chair, and read a book while sipping iced tea or some other cooling beverage.

• Go to a movie, museum, library, mall or someplace that has air conditioning.

• Rent “snowy” movies. Now you can watch those Christmas movies you didn’t have time for during the holidays. Just thinking of Scrooge in his cold and drafty winter London house makes me feel cooler already. With July 25 in just a few days, celebrate Christmas in July.

• Cool down with iced beverages, ice cream, frozen yogurt or a smoothie. Stay hydrated. Keep a pitcher of ice water in the frig. Spice up ice water with a sprig of mint, or a slice of lemon or lime.

• Give your kitchen a rest and get some salads from your local deli or grocery store. If you must cook, do it in the early morning.

Saturday, July 17, 2010

Finding Hope when the situation seems hopeless

You go to visit your provider and your test results aren’t great. You just can’t seem to face another day of being a caregiver. Bills are mounting and you haven’t a clue how to pay them. You’ve lost your job and think you’re not going to find another one. In short, regardless of the situation, most of us feel “stuck” at some point in our lives. With the present economy, these feelings are more common then ever as many feel trapped and unsure of how to proceed.

Is there a possibility that your feelings are a result of your health issues? Did you recently change medications or stop some? Are you fearful because of a diagnosis? If you are answering yes to these questions, talk to your provider as soon as possible. Take advantage of programs and supports offered by the facility where you receive your care.

If you find that your feelings of sadness and hopelessness are so overwhelming that it’s hard for you to function, you may be dealing with a level of depression that requires professional help. Take the Mayo Clinic’s Depression Self Assessment test to help you understand if you are having symptoms of depression. This assessment can’t give you a diagnosis of depression, but it can help you evaluate your mood, so you can seek treatment if necessary.

“Talking it out” is a very helpful strategy. Three people can watch a movie and come away with very different views. When you talk to someone you trust, such as a family member, share experiences with a support group, or talk to a counselor, they maybe able to help you see things in a very different light.

It can also be helpful to write down why you feel hopeless. Just like talking to someone, it helps to clarify what the root issues might be. Solutions may appear as you continue to talk and write about them.

Years ago, a psychologist working with families dealing with chronic conditions told the audience that a high percentage of our daily frustrations could be easily addressed by eating something, taking a nap or going to the bathroom. Feelings of deep hopelessness aren’t going to be as simply resolved, but it is a good reminder to take care of the basics of eating healthy, exercising and getting sufficient sleep.

As much as possible, live in the present. Dwelling on what has happened or could happened can create feelings of being overwhelmed and fearful. Practice Mindfulness

Work on a plan for change. Write out steps for changes needed to address root issues. Periodically check to see how you are doing with them. Take small well thought out steps. Be deliberate and practical. Don’t go and toss out all your medications, quit your job or tell your spouse you want a divorce on impulse.

Research on the effectiveness of Cognitive Behavioral Therapy (CBT) is showing that this approach can be very helpful in helping people become “unstuck.” CBT is based on the idea that we are responsible for how we respond to a given situation-not the other way around.

How Emotions Work and How to Manage Them

• Adjustment Disorder Strategies, includes Cognitive Behavioral Therapy strategies

Wednesday, July 14, 2010

Take a Break: Make a Vase that Reflects Your Environment

Take a Break: Make a Vase that Reflects Your Environment

While on vacation, I happened to wonder into the lobby of a hotel that had the most beautiful flowers in a vase filled with mussel shells. The flowers not only were highlighted by the shells, but they were locally grown.

Today’s break is to create your own vase of flowers, which incorporates natural materials in your area. If you are fortunate to live near the ocean, you can collect beach glass, periwinkles, small pebbles or whatever else that appears on the beach. Try to collect wild flowers to accent the objects you put into the water. If you aren’t able to go picking wildflowers, purchase flowers that are locally grown. Farmer’s markets are a good place to look.

If you live in a city, there are going to be all sorts of objects you may find. Years ago, I saw a water vase filled with Barbie Doll shoes. Very cool. Just make sure to clean whatever you find. Don’t think there are wildflowers in the city? Think again. New York City offers a Wild Flower Week every year. Chances are good there are interesting things growing in your community, some of which you may never have noticed.

This weekend, I decided to make some of these arrangements. I ended up using stones, found in the river beds in my neighborhood. My “flowers” included grasses, day lilies, cat tails, Black Eyed Susan and some I don’t know the name of. It was easiest to get the stones in the vase if I tipped it on its side. I made my arrangement and then filled it with water. Because wildflowers don’t last as long as commercial ones, I looked for items that would dry well. If you are lucky enough to have them, cat tails will hold up until it’s time for winter greens, as will various thistles.

Saturday, July 10, 2010

“They don’t take care of themselves.”

This has not been an easy post to write, since it deals with some basic fears and concerns of those who are living with someone with a chronic condition. However, the issue of change has come up so much in the last month, I would have been remiss if I didn’t try to write about it.

So what do you do if you are partnered/married to someone with a chronic condition who refuses to take care of themselves?

The situation I’m describing is one where the person knows their diagnosis, has been told of the risk factors yet continues to engage in behaviors that are counterproductive to their health. This is not a situation where the person has dementia or some other problem that clouds judgment.

This is also not a situation where a person’s chronic condition has progressed to the terminal stage, where stopping smoking or eliminating the offending behavior isn’t going to make a bit of difference in outcome. Sadly, families and friends, who are stressed by the pending demise of someone they care about, do make caustic comments. This is also not part of today’s post.

Note: If they are endangering themselves by cutting, taking pills or some other highly destructive behavior, call a crises center or 911 immediately. It may be a “cry for help,” but people can die in these situations, so err on the side of caution.

Over the years I’ve heard many variations on the lack of self care -he/she wont keep their medical appointments; she still smokes even though she’s had a heart attack, is a diabetic or has/had cancer; he’s 100 lbs over weight if he’s an ounce and he had bypass surgery a year ago. The examples are endless.

These observations aren’t just made by family and friends, but also health providers, who do question at times whether they should be treating a patient who is unwilling to change.

Do any of these comments sound familiar?
“He smokes and coughs like he is dying. I told him I’ve been a caregiver all my life and I don’t feel like seeing you die.”

• Responding to “I’m going to live my life as I want to and if I die, just bury me,” by saying, “that’s fine, if you want to die. Keep doing what you are doing and that is exactly what is going to happen. Better yet, maybe you won't die and you will have a stroke and have to live crippled and in a wheel chair the rest of your life.”

Go together with your husband to see an attorney. Have him/her draft an advance medical directive (living will), a regular will and something for guardianship of your children (should you pass away as well). Then go together to visit an insurance agent and up your husband's life insurance policy. Then call a funeral home and price out the options he'd like, along with discussing arrangements for the service -- pallbearers, hymns, etc. Explain to your husband that since he seems intent on slowly committing suicide, the least he could do is get his affairs in order so that his eventual early death won't be a logistical nightmare on top of the emotional gut punch.

Do you think any of these spouses changed by hearing comments like this? Maybe, maybe not.

So how do you get them to give up unhealthy behaviors? This is a question that I have spent many hours exploring while doing HIV prevention. Without a doubt the most important thing to recognize is that you can’t change anyone. You can only change yourself.

You can change how you respond to them, which might impact their behavior. You can decide to stay with them or leave. You can figure out how much time and energy you have to spend on trying to motivate them to change. You can determine what type of impact of being a motivator is having on you and whether this is something you can sustain. At the end of the day, they get to choose whether they change or not.

Working in AIDS, we were constantly attending lectures on behavior change theory. What I came to believe was what I call the “law of substitutions”-people don’t change and sustain a behavior unless it can be substituted by one perceived to be of equal or greater value. Further, root issues need to be dealt with, often times before new behaviors can be introduced. A man is spending many hours a day in the sex clubs immediately following his partner’s death from AIDS. Teaching him safer sex techniques, no matter how erotic and enjoyable, isn’t going to change his behavior. However, grief/loss counseling and support just might slow him down. Over time, the combination of both interventions might sustain a long-term change.

Another example is a person who losses 100 lbs. They feel terrific, have a new social network and receive complements every which way they turn. Is this sufficient for them to maintain the weight loss? For some it certainly is, particularly if they are part of a program, such as Weight Watchers. For others, feelings of inadequacy, anger, fear or anxiety can take them back to known comfort behaviors of excess eating, particularly after people cease telling them how fabulous they look.

Motivating people to make changes in their life can be inspiring as well as discouraging. However, it’s one thing to do this as part of your job, it’s another if it’s your spouse/partner or close friend.

People living with chronic disease may be angry, frightened, feel vulnerable, chose to live in denial, or experience a host of other emotional responses. These are very real and difficult issues for them to deal with and shouldn’t be dismissed. These are often “root” issues and they may need help in addressing them before the unhealthy behavior can be eliminated or reduced. However, it’s still their issue. As much as you’d like to “kiss it and make it all better,” you can’t.

Encourage them to attend support groups, go to medical appointments with them, be the “friend with a pen,” learn as much as you can about the condition, and participate in caregiver support groups. However, feeling sorry for them, or making excuses for their behavior doesn’t help in the long run. It may just delay their getting on the right road to self-healing. Being a supportive spouse/partner or friend does not mean becoming a nag or turning your life upside down to the point that you’ve let their self destructive rule your life as well as theirs.

With that noted, here are some things to consider when trying to understand how to deal with someone that refuses to take appropriate care of themselves:

• Is there a possibility that the behavior you are seeing is a result of an underlying undiagnosed condition?

• Has the person been counseled by a medical provider? Do they participate in a support group or in some way discuss their problems with people, including medical and social service providers, who are familiar with their issues?

• Are there any behaviors on your part that are not supportive of your partner/spouse? For example, if they are being treated for high blood pressure, do you serve salty foods or have a saltshaker on the table? Do you say to them “you need to go for a walk 30 minutes a day” but don’t exercise yourself or offer to go for a walk with them? For a present, would you give them a two-pound box of chocolates knowing that they shouldn’t be eating it?

• Have you discussed your concerns with your spouse/partner? If yes, do they acknowledge there is a problem? Are they willing to work with you and/or a neutral third party to address them?

If your partner/spouse is unwilling to acknowledge there is an issue and/or doesn’t want to work on it, you’ll have to decide what impact this will have on you. Is it healthy for you to watch them self-destruct?

If you find you continue to stay with someone engaging in unhealthy behaviors, you need to start looking at your reasons for doing this. Does “caring” for someone at this level give you a sense of purpose? Is being in a relationship of any kind more important than not having one? Do you believe that you’ve invested so much time in the relationship you can’t imagine being without it? Are you financially dependent on your partner/spouse?

There are many instances of partners/spouses and even medical providers who finally just say, “I can’t do this anymore.” This isn’t necessarily a threat, but rather a decision not to be a party to destructive behavior. This is a critical wake up call for all involved. Sometimes the couples separate and they do better apart then together. Sadly, there are instances where the person doesn’t modify their behavior and they do end up dying or living a very compromised life. More optimistically, there are lots of cases where both parties make changes and the relationship grows.

If you do come to a place where you need to say, “I can’t be in a relationship with someone who is engaging in such self destructive behaviors,” and then don’t follow through when no change occurs, you are setting yourself up for a cycle that is going to make you both miserable. Don’t make this type of comment unless you know you can carry through with it.

Some take home points:
• The only behavior you can change is your own. By modifying yours, you may notice a change in your spouse/partner.

• If you can’t accept your partner/spouse the way they are, give them the distance you both need.

• It’s not how we think, feel or say, it’s what we do that matters.

• Ultimately it’s their life and their choice. It’s your life and your choice.

Tuesday, July 6, 2010

Take a Break: Unplug

I’m heading off for a few days of vacation, which is my inspiration for this week’s Take a Break Wednesday. Simply put-unplug. Take a break from cell phones, e-mails, faxes, computers and even your land line. Instead, if you are locked into a heat wave, as many of us are, make a cool drink and just chill for a while. This is the perfect time to practice S.T.O.P-stop what you are doing; take a breath; observe what’s happening around you and proceed.

Once you are unplugged, and feeling a bit cooler, consider sitting outside under a shade tree or take a walk in the woods. A study published last January indicates that exposure to plants and parks can boost your immunity. Being among plants lowers concentrations of cortisol, and lowers pulse rate and blood pressure. It can also increase white blood cells (natural killer cells).

Friday, July 2, 2010

Families Aren’t Trusting of Bad News from Docs

Studies have shown that the doctor and family often differ in their opinions on critically ill patients’ chances of survival, with the family being more optimistic than the family. A new study found that giving statistical information (only 1 % of patients survive), versus qualitative information,
( it’s very unlikely that the person will survive), families still came away with a more positive estimate of the prognosis.

The author recommends it may be that ICU doctors need to limit the amount of the information they convey, so that family members are less likely to be overwhelmed at a time when they are distraught. They could also try explicitly asking family members if they understood the information they were just given. Finally, establishing trust in such a short and emotionally charged time frame is difficult.

To read more about the study, go to American Journal of Respiratory and Critical Care Medicine, online June 10, 2010.