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112.29.09Cushing’s Disease: The Start of a Career as a Professional Patient

Posted Dec 29 2009 12:00am

One’s career as a professional patient isn’t determined at birth. Nor is it something a child aspires to be during grade school and beyond. It’s something that JUST HAPPENS. Like that other thing on bumper stickers and t-shirts.

I’m guessing mine started when I was 39 – when I underwent a high-risk pregnancy followed by the traumatic birth of my baby. One year later I still looked 8 months pregnant, had a hump on my back and a very puffy, round face. I asked a doctor about it and was told I was just fat and needed to diet and exercise.

I dieted and exercised for many years after that, with an occasional visit to a different doctor asking “Are you sure there isn’t something wrong with me?” Sometimes the doctors would give me a thyroid test which didn’t show anything wrong either and would insinuate that people like me were always looking for an excuse for being “obese.”

I knew there had to be a reason I couldn’t lose weight, and why my body shape was so odd. Other overweight people had evenly distributed weight, but all mine was in my stomach. Rather than putting myself through what I thought would be hearing another doctor say “You’re just fat,” I quit asking doctors about it. I shouldn’t have been afraid or too discouraged to keep asking, but I was. Fast forward 14 years while working as an emergency room technician, and people were still asking me when my baby was due! New hope came finally when taking pre-nursing classes. I was looking through my anatomy and physiology book and saw a woman who looked just like me and had my same symptoms. She had Cushing’s disease.

When I went to work at the hospital that night, I brought my anatomy and physiology book and showed my co-workers about the disease I thought I had. What I didn’t know was that nursing students (or probably any medical students) are notorious for diagnosing themselves with this or that ailment. So I underwent a fair amount of teasing from everyone except my favorite ER doc. He actually listened and asked some questions. He said he had to look up some things in his internal medicine books and would get back to me before the shift was over. When I saw him again that night, he said “I think you got something there – ask your primary doctor to give you a dexamethasone test.” (Dexamethasone is a steroid serum.) I made my appointment as soon as I could.

Inside my doctor’s office was a sign that said something like “If you came here after diagnosing yourself, or getting a diagnosis you got on the Internet, you can leave now.” By this time, I had done a fair amount of research on the Internet on Cushing’s, so I decided I would tell my doc that it was entirely the ER doctor’s suggestion that I had Cushing’s. My doctor happened to like the ER doc, so gladly listened. I had to buy the dexamethasone from a specialty compound pharmacy which wasn’t covered by insurance and cost about $600 – no kidding! I had read how this disease was so difficult to diagnose, and by now was beginning to figure out why.

Well, this was the beginning of my career as a patient. The whole process of finding a specialist, the diagnostic procedures and the brain surgery followed, but the Cushing’s story is for another day. What’s important to know is that the longer someone has a disease or other chronic condition, the harder it is to recover from it. Had I done more research on my symptoms and not given up on doctors, I probably would have found out I needed an endocrinologist much sooner. People need to be their own advocates, or have a close friend or family member that can help them. Never give up if you think something is wrong even though a doctor thinks there isn’t. Get a second and third opinion. Do research. Family doctors need to know so much about so many things, that they need a little extra information, but be very diplomatic about it (remember the sign in my doctor’s office). This also goes for when a doctor does give you a diagnosis. Get a second and third opinion on that, especially when it involves surgery or taking drugs.



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