Friday, September 11, 2009

Be Your Own Advocate by Jaye Lewis


I just looked into my old health record from when we were in the military. Big mistake. Every page described my list of symptoms preceded by the words “patient claims.” Oh, I see, so you claim. Uh-huh. Another frequent description of me was “cries for no apparent reason.” That was after I was verbally abused while I was in the Cardiac Care Unit.

I also loved reading: patient is obese white female, at 148 pounds, with ― well, you know ― who claims... I don’t know which was more offensive, being described as obese, at 148 pounds ― a weight that I would thank God on my knees if I were today ― or the insinuation that I might be lying; or the physical description of me, bringing to mind a rather swollen cow. This was at 148 pounds!

I’m not alone. Many of you have similar stories. If you do not have copies of your medical records, you may request them from your doctor. By law they must give you copies, without charge, except for a small fee for the copy paper. Usually this is less than $10.

At sixty-three, I have been poked, prodded, ignored, insulted, stripped naked in a teaching hospital (for a better view), and I have felt intimidated, demoralized, frightened, and helplessly angry. Usually, three days later, I would have the perfect response, but when in the presence of a team of doctors, I simply backed down without a word. Not anymore.

When I finally took my stand, I was sitting in a cardiologist’s exam room. He had instructed me to take everything off from the waist up, and to robe myself in a paper napkin sort of gown. So there I sat, feeling like a giant Kleenex, when in walks my very nice middle-eastern doctor, with a companion in tow.

“Mrs. Lewis, this is PA (Physician’s Assistant) So-and-so. You don’t mind if he assists me in my exam?” He sat down confident that I would simply acquiesce, as though this was an every day event, me disrobing for a crowd ― no more! ― and he was totally unprepared for my response.

“As a matter of fact, I do mind.” I said, feeling suddenly liberated and very much in charge. The PA turned beet-red and started backing out of the room. My doctor stood there, stunned, just looking at me for a very long forty-five seconds.

“Oh. Of course. Uh…PA What’s-Your-Name, would you please leave?” PA WHN was already closing the door. He probably had to be dragged, kicking and screaming, into the next exam.

Funny though this story may be, it has a very important message. No one will ever respect you, nor take care of you, quite as effectively as you can take care of yourself. I was in my fifties before I started taking care of myself. To be perfectly honest, my big, strong husband was sitting there, and I probably had more courage in that, than if I was alone. Nevertheless, I took care of myself. I was my own advocate.

All those years that I let myself be pushed around and insulted, I forgot who was working for whom. I forgot that I was the boss, and if I didn’t like a doctor, or he didn’t like me, I could hire someone else. Funny, I never thought of things that way. Now, things are different. I look at it this way. Perhaps my doctor will be miffed at me. Well, if so, why waste the effort? Go for broke. Show her or him that you are intelligent and informed.

Speak your mind. State your case. Bring a list of your symptoms ― one copy for your doctor and one for you. If you have a computer, look up your disease, with any new developments, and print that page. Always bring your Doc his or her copy. Avoid any medical sites online that have no scientific standing. I’m merely sharing what I have learned the hard way. There are numerous valid medical sites that are excellent resources. The sites with the most effective and up to date information are those ending with .ORG.

The American Diabetes Association www.diabetes.org
The American Heart Association www.americanheart.org
The Neuropathy Association www.neuropathy.org

These are just a few .ORG associations, which have a wealth of information, including diet, exercise, and new treatments available.

Other websites that offer great information and guidelines are those websites that end in .GOV

The National Institutes of Health (NIH) www.nih.gov
The Centers for Disease Control and Prevention (CDC) www.cdc.gov
U.S. Food and Drug Administration www.fda.gov

These are just a few of the places that I depend on for updated information. Be careful as you look up health information on the Web, since everyone, including me, has a blog or website. And everyone, not me, is an “expert.” Just ask them. There are more crack-pot “miraculous” cures out there than there are diseases. If you want miraculous, go to God. If you want scientific medical advice go to legitimate medical websites that end in .org or .gov. When you find the information you are seeking, print it out. Make two copies, one for you, and one for your doctor. Go armed and informed. You just may find out that you and your doctor have more in common than you thought.

Father in heaven, give us courage in the grip of our disease. Help each of us to be our own advocate. Help us to not back down in the face of criticism or ridicule. Many of us, including me, have gained so much weight, let us not be swayed by uninformed critics, who look at us, as though it is our fault we have this disease. Help us to forge ahead, looking not to the right nor left, but grant us Your grace to keep our eyes on You. Give our hearts a seed of understanding, and when we see our reflections in the mirror, help us to love what we see.

With love,
Jaye Lewis
www.entertainingangels.org
www.entertainingangelsencouragingwords.blogspot.com
www.jayelewisdiabetesdiary.blogspot.com
www.jayelewisliliesofthefield.blogspot.com