You are currently browsing the category archive for the 'About Me' category.
I got an unexpected email last week from a former colleague, now an attending plastic surgeon living in a different state. I hadn’t heard from him in a long time. He was my senior resident on the Transplant Surgery service in the days before laws restricted work hours for residents. We spent every 3 nights in the hospital and would often work more than 100 hours a week. He was a careful, thorough and fair senior resident, and he was respected by the general surgeons even though he was in training (as I was) to become a plastic surgeon. When I resigned from my plastic surgery residency program, I never spoke to him personally about my decision or my illness.
This man’s nephew is in his second year of medical school and has wanted to be a plastic surgeon for a long time. He was diagnosed just two weeks ago with an autoimmune disorder himself, and my former colleague wanted me to talk to him about his future in medicine, to be an example to him that there are other fulfilling options in medicine besides surgery.
Being asked to meet with this young man made me think back to my diagnosis of scleroderma as a surgical intern. My hands were turning blue in the operating room constantly, I was having reflux symptoms, and red blotches started appearing on my face. I knew something was wrong, but I had to convince the first doctor I saw to draw my blood. He told me “you work too hard and look to good to have anythign wrong.” When I was diagnosed with CREST syndrome, I remember asking the rheumatologic specialists how the disease would progress, and whether I should quit surgical residency. I remember asking if there was anyone that I could talk to about what my future would be like. I tried to connect with other people with the disease, but the first few women I talked to were so diabilitated and depressed I couldn’t relate to them. It seemed no one had gone through what I was going through.
I yearn to help this medical student through this time in his life, but I wonder in my heart what connection, if any, I’ll be able to make with him. He has been diagnosed so recently that I’m sure he’s still in denial. When I was first diagnosed, I certainly denied a lot of realities. I didn’t want to believe that I would have to change a career that I was so passionate about, that I had worked so hard to get into. I didn’t want to believe that I would be in pain every day for the rest of my life, that having a baby and carrying him to term would be so difficult, that my appearance would change dramatically. Denial is a defense mechanism that served me well early on– if all these realities had hit me at the same time, I couldn’t have gone on.
I’m worried with all this baggage that I take to this meeting that I’ll be too intense and serious, that I won’t be capable of telling him what he wants and needs to hear.
It seems as though I am in constant motion. Being a doctor is a very active profession. Obviously, you have to see each patient, lay hands on them, evaluate their complaints. Examining kids is challenging, too; often you have to hold them down to look in their ears or the backs of their throats. You have to bend over to press on their bellies, and sometimes chase them around the room if they get away from you and their mom. Then, I have an 18-month old at home, who still wants “up” often. And we live in a third-floor condo. All this activity add up–for me– to chronic aches and pains. I end up taking several pills a day of aleve or motrin and I worry about taking too much anti-inflammatory medication. The issue with scleroderma, too, is that most of us suffer with reflux as well which is often worsened by anti-inflammatory medicines. So I often end up taking more of my acid-reducing medicine, like Nexium.
COX-2 inhibitors (like vioxx, celebrex) are more selective for the inflammatory substances that cause pain in the body and have less stomach upsetting side-effects. These were a boon for arthritis patients who often have gastritis and even bleeding with conventional inflammatory medication. Unfortunately all these medicines were taken off the market in 2006 because of reports that they had increased the risk of heart attacks. The data actually showed that if you had no heart disease to start with, these medications were completely safe. These medications are still on the market, but they have a “black box” warning, which means that you have to have a special dispensation from your doctor to be able to buy them.
I had a hoard of free vioxx samples that I would take in special pain occasions– when the pain was really bad. Now my hoard is gone. So I’m stuck with doing a balancing act: should I help my pain and hurt my stomach, or vice versa?
I can’t believe it’s been over a month since I last posted! I am hoping tomake it into more of a routine, but it seems like there is always something else that needs to be done first– dinner, bathing Liam, seeing a patient, paying a bill. This winter has been very hard on those of us with scleroderma– my friends with the disease have been mostly homebound and many are depressed. Yesterday it was finally 60 deg (yeah!) here in Chicago! I have been in the Treatment Room at La Rabida, a chronic children’s hospital, for a month now, and I seem to have gotten every virus that the kids are bringing here. It’s been a bad flu season here because the flu vaccine didn’t cover the flu virus very well.
Yesterday there was congressional testimony by a scleroderma patient from Los Angeles named Cynthia. (See this link.) She is 13 years old and her congresswoman, Linda Sanchez, was instrumental in pushing the request for congessional testimony. Another woman with scleroderma who also had a bone marrow transplant also testified. Although I recorded CSPAN all day I didn’t catch the testimony on tape, unfortunately. This is great exposure for scleroderma!
Today the actual AIR temperature is zero to -2. And don’t even think about the wind chill! As I went to my ER shift tonight, even with my down coat and my hothands in my boots and mittens, I thought I might freeze to death as I crunched through the dangerous-looking sparkling, frozen-solid snow. So, then, why am I thinking about watermelon in February in Chicago? Apparently I am at risk for something called “watermelon stomach.” I learned this in the clinic note that my rheumatologist wrote– and mailed me. She was the concerned that because I had increasing numbers of telangectasias on my face and in my mouth (see? I’m not crazy) and so she wrote in her letter that she was worried about my developing watermelon stomach. Apparently, in people with scleroderma, telangectasias can also develop in the stomach, in a weirdly stripy pattern resembling a watermelon (see picture). 
It’s actually not too serious as these things go; the fragile blood vessels in the stomach near the surface of the lining break open and can cause bleeding. Most of the time, the condition can be cured using a scope and laser surgery to burn up the tissue. The name of this new (to me) process made me think that it’s a weird propensity of doctors to name things after food. In pathology, we learned about all kinds of things named after different foods (“strawberry tongue” in strep throat; “cherry red” for carbon monoxide poisoning; “prune belly” a childhood syndrome; “sausage digits” in patients with psoriatic arthritis, etc, etc). I always thought it was odd, sitting in medical school lectures, to learn about a horrendous disease process that was almost gleefully named after food. Medical school teaches you how to place a distance between you and the patient: the first three months at medical school are spent dissecting a dead human being. After a while, the weirdness passes and the time spent dissecting becomes mundane– that dead person, so terrifying just a short time before, becomes just an object of study. Oddly, the formaldahyde preservative makes you starvingly hungry; we would all dash to the cafeteria after our morning’s work for a huge lunch. Perhaps pathologists are just a hungry bunch, having been exposed to formaldahyde throughout their careers. But I also think that naming scary things after something known, even comforting (like food) echos the distance that we learn in medical school to put between our patient and ourselves.
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.
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.
I hope to write about living with scleroderma, my experiences as a young woman living with a chronic disease. I plan on gathering information from a variety of sources to make living with scleroderma easier.
Recent Comments