Rheumatologist

I went to my rheumatologist appointment yesterday. I only go every year or so, and I’ve become– over the years– much less apprehensive about the experience; I already have a firm diagnosis that upended my life– what else can they discover? But I still get nervous. When I was little, I thought that doctors had magical ability to figure out what was wrong with you just by examining you, as if the stethescope and blood pressure cuff had magical abilities.  In fact, I was nervous that somehow the doctor would discover my secrets.  But becoming a doctor myself– and even more importantly, becoming a patient– I have discovered how little doctors are able to tell just by looking. The first major milestone on the way to becoming a doctor is to be able to complete an “H &P” or History and Physical Exam. And history is often much more important than the physical. But it’s difficult as a patient to relay a good history to your doctor. First, your doctor usually has a particular agenda, a set of questions that he or she wants to have you answer. Secondly, the whole experience of being weighed, blood pressure taken, questioned by several people, tends to be distracting enough that you forget all the questions that you came to have answered.  Being a good patient is much more challenging to me than being a good doctor.  There is a balance that I am trying to learn how to strike between melodramatic about every little ache and pain and being too stoic and not having my questions answered. Monday I go for my yearly ultrasound of the heart and lung function tests; I’ll be crossing my fingers that I won’t have to see more doctors and be more of a patient in the near future.

Vanity

I never spent a long time on my appearance but I did pride myself on having a type of “natural” beauty. I wouldn’t pass a mirror without looking, and I appreciated the glances in my direction from men.  As you get older those glances naturally tend to decrease in frequency I suppose. But I’m struggling with the changes in my appearance that have come from scleroderma. In the past few years I have developed unsightly bumps on my hands where calcium has been deposited, and the skin on my neck and fingers has become tighter, giving me a strained look. What bothers me the most right now, though, are the crops of red splotches (“telangectasias” is the official word) on my face. I also have some on my hands and even on my tongue. I have three vibrant ones down the middle of my forehead that seem to spread outwards every time I glance in a mirror, mimicking, in triplicate, the red dot between the eyebrows of married Indian women.  They taunt me as I look in the mirror now– “don’t forget! You’ll never be rid of this disease!” and I comb my bangs down over them.  In desperation, I went to the dermatologist who tried to laser them into submission, and the bright redness of the spots did fade to a duller purple. But now they’ve come back, redder and splotchier than ever. Mentally I feel I must continue to fight, not only the changes to my external appearance but also continue to work on my body’s health with diet, exercise and a positive attitude. Perhaps I should take a different tack, though, and embrace the inevitable splotchiness as a badge of some sort punishment for my previous vanity.  I guess that’s not for me; I am not proud to admit that I already have another appointment with the dermatologist, scheduled for March.

My cousin

I just heard the horrible news that my first cousin, only 36, suffered 3 strokes on Sunday and is in the hospital, still confused and weak on his right side.  He was carrying a bag of chicken feed on his head and, apparently, one of the arteries in the back of his neck tore.  He is only a few years older than I am and has always seemed so healthy and confident– he went to college at Harvard was the first in our generation to go to medical school. It seemed that he was always the “golden boy” of the family.  I am the one with the chronic disease, thinking daily about my health, and often feeling frustrated that I don’t feel as strong and healthy as I once did. Did my cousin ever think about how vulnerable life really is? I wonder if he took it for granted in the hustle and bustle of everyday life.  It’s a reminder to me, certainly, that we cannot predict what each day will bring. Even though I have my aches and pains, and my life is shadowed by a chronic disease, it could be a lot worse.

Advocacy in December

A group of us from the National Scleroderma Foundation met in Washington DC.  It was a very busy time of the year, so many of the senators and representatives that we tried to meet with were too busy to meet with us, but we met with their healthcare aides. I did get to meet and have a photo-up with Jesse Jackson Jr. from Chicago.  We also met with NIAMS director Dr. Katz. Although funding for scleroderma research has been flat for the last 5 years, he could not promise us increases in funding and told us that as far as he was concerned the best research with the best scores gets funded. That was a bit discouraging, but he did mention that he would like to work with us on a conference about scleroderma that the NIH might host.   Me with Rep. Jesse Jackson, Jr.