Inspired by Mama Kat’s Writer’s Workshop.
I have been sick since I was a teenager, and in my twenty-five years of being sick I have learned to become quite an advocate for myself.
When I was in my early twenties nothing my gastroenterologist was giving me was working for my Ulcerative Colitis. He wanted to put me on steroids, saying that was all that he had left to give me. I had an instinct that going on steroids was not for me. “There must be something else you can do for me”, I insisted. He then remembered that there was a study going on for a new drug at a university hospital for Ulcerative Colitis. I left this doctor and joined the study. The drug helped enough that, while I wasn’t able to complete the trial, it did put me in remission.
In January of 2003, my feet started to swell up so badly I was icing them down up to five times a day, including overnights. I went to see a Rheumatologist who was clueless, as a child could tell I had the classic symptoms of Rheumatoid Arthritis. He was under-medicating me as far as treatment and pain. He just keep giving me NSAIDs when my condition deserved something far stronger.
As luck would have it, I was a recruiter at the time, recruiting Rheumatologists! I got professionally friendly with one of my recruits and told him about my symptoms and this doctor. He told me that I was not getting good care and he referred me to someone in New York City. It required me to take the whole day off of work to get there, but I called up my doctor’s office and asked for all of my records. When they asked why I simply told them I was switching doctors.
I made the painful trip to the New York doctor who took ONE look at me and said, “You have Rheumatoid Arthritis!” He immediately started me on the latest, most aggressive treatment at the time and prescribed strong narcotics. He believed in the horrific pain that I was having. I credit him with having little permanent damage and deformity in my joints.
Unfortunately, the greatest doctor I have ever had passed away. He was a wonderful old man who literally practiced and kept up on the latest rheumatological trends until he became too ill.
Finding a good Rheumatologist is extremely difficult, but I felt that my disease was under control and I was capable of managing it, so I wasn’t extremely particular about who I chose next. I picked someone closer to home. This doctor never really believed I actually had Rheumatoid Arthritis because I was so well controlled. But he gave me my biologic and my pain meds and that’s all I cared about.
But after seeing him for a few years, I began feeling sicker. I had tremendous joint pain but my joints were not swollen. I was exhausted, falling asleep during my commute and taking large amounts of pain meds just to be able to work. When I told him how I was feeling he would look at my joints and point out that they weren’t swollen. “You look better”, he said. I had one positive ANA which was new for me. “Let’s keep an eye out on it”, he said. In addition, my medication had stopped working.
This was ridiculous, I know when I’m getting sicker and I don’t need any blood test to tell me how I feel! So “I fired” this doctor and on the referral of my Primary Care Physician found a new Rheumatologist. She listened to me for an hour and examined me. She suggested we send my blood work out to a laboratory in California that specializes in analyzing blood work for Auto Immune Diseases. It was after that I found out I had Lupus.
The “moral” of this story is that God forbid you ever get sick like this, or already are, is to trust your own instincts. There are good doctors and bad doctors. A good doctor will believe you and treat you according to your symptoms, NOT your blood work, which can often be inaccurate. You can also be starting to get sick and still have normal blood work, or have normal blood work and still have Rheumatoid Arthritis, Lupus or another disease that they do not have blood tests for, yet.
Here’s to your health!
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