I was diagnosed with lupus on June 18, 2007. My search for a diagnosis began in 1999. I was pretty sure that I had lupus because my grandmother was diagnosed with it when I was in the second grade and her symptoms were similar to mine. My aunt also had similar symptoms, but she did not have a diagnosis. I visited many doctors, described my symptoms, and gave my family medical history, but because I didn't have enough of the symptoms and my blood work was either borderline or normal, no one would diagnose me. It didn't help that none of the doctors were ever able to see any of the symptoms I described. By the time I was able to get appointments, the symptoms would be gone and I would be feeling normal. I remember one of the first doctors I saw in New Jersey - he looked me straight in the face and said "there's nothing wrong with you". He told me stress was probably why I was feeling bad and that I should consider changing my line of work. He was so arrogant and mean in his tone. When I left there, he had me wondering if I had made the whole thing up. Maybe I was crazy or overworked or a hypochondriac.
Here's the small rant: Doctors should be careful how they talk to their patients. I left his office angry and confused - and worst of all, questioning what I knew to be true. Unacceptable!
Fast forward 12 years, five or six doctors, and many episodes of sickness or "flares" later. I had graduated from law school and was working as a law clerk for a judge. The first odd symptom was painfully swollen and itchy toes that would turn either bright red or purple. Then the exhaustion came down on me like buckets of molasses. Then my legs started to disagree with me. Within two weeks, I was walking with a cane. I was very hesitant to see a new doctor because I feared having the same experience as I had had so many times before, but walking with a cane was a scary new symptom, so I went to a rhuematologist. She prescribed prednisone. My body didn't like the dosage, and within two days, I was in the hospital. It was the best thing that could've happened to me.
After spending three days in the hospital, I was released with a pending appointment at Johns Hopkins. I saw a rhuematologist there that specializes in lupus. She was the most thorough doctor I had ever seen. She asked questions that no one else had ever asked me before. She made observations of my appearance that no one else had ever noticed. She put all of the pieces together and finally gave me the answer I had been waiting so long to hear. "I believe that you have lupus." The profound relief produced an awkward knowing smile. "You're taking this quite well", she said. All I could do was chuckle. I had known for about 12 years that I had lupus. I just needed someone learned to confirm it. Now that I had an "official" answer, I could get a course of treatment.
Little did I know that there are very few FDA approved treatments for lupus. The last drug was approved 50 years ago. (Read the bold and underline as another rant.)
Lupus is a chronic autoimmune disease that can damage any part of the body. It affects each person differently, which is one of the reasons why it is difficult to diagnose. Please visit The Lupus Foundation of America website to learn more.
This Saturday, I am doing the Walk for Lupus Now walk in Washington, DC. If you'd like to sponsor me, please visit my site here. Thanks.
Here's the small rant: Doctors should be careful how they talk to their patients. I left his office angry and confused - and worst of all, questioning what I knew to be true. Unacceptable!
Fast forward 12 years, five or six doctors, and many episodes of sickness or "flares" later. I had graduated from law school and was working as a law clerk for a judge. The first odd symptom was painfully swollen and itchy toes that would turn either bright red or purple. Then the exhaustion came down on me like buckets of molasses. Then my legs started to disagree with me. Within two weeks, I was walking with a cane. I was very hesitant to see a new doctor because I feared having the same experience as I had had so many times before, but walking with a cane was a scary new symptom, so I went to a rhuematologist. She prescribed prednisone. My body didn't like the dosage, and within two days, I was in the hospital. It was the best thing that could've happened to me.
After spending three days in the hospital, I was released with a pending appointment at Johns Hopkins. I saw a rhuematologist there that specializes in lupus. She was the most thorough doctor I had ever seen. She asked questions that no one else had ever asked me before. She made observations of my appearance that no one else had ever noticed. She put all of the pieces together and finally gave me the answer I had been waiting so long to hear. "I believe that you have lupus." The profound relief produced an awkward knowing smile. "You're taking this quite well", she said. All I could do was chuckle. I had known for about 12 years that I had lupus. I just needed someone learned to confirm it. Now that I had an "official" answer, I could get a course of treatment.
Little did I know that there are very few FDA approved treatments for lupus. The last drug was approved 50 years ago. (Read the bold and underline as another rant.)
Lupus is a chronic autoimmune disease that can damage any part of the body. It affects each person differently, which is one of the reasons why it is difficult to diagnose. Please visit The Lupus Foundation of America website to learn more.
This Saturday, I am doing the Walk for Lupus Now walk in Washington, DC. If you'd like to sponsor me, please visit my site here. Thanks.
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