I don’t let Lupus define me. Most of the people I encounter everyday don’t know I have it. But, I do, and for the first time since I was diagnosed 10 years ago, I am speaking up.
The fall of 2000 and the beginning of 2001 was a busy time for me. I was planning a March wedding, in college full-time, had both an internship and a part-time job. For most of that time, i was feeling run down and achy, which I attributed to my hectic life. However, I then developed what looked like a rash on my legs. After a week or so, when it didn’t go away, I had it checked out by my family doctor. He referred me to a specialist, a hematologist. The hematologist examined me, ran several tests and since the “rash” was actually inflamed blood vessels, he gave me a prescription for a corticosteroid (Wikipedia: prednisone). A few days later, while with my brother picking up his groomsmen tuxedo for my wedding, my Dr. called me with the results. All the test results pointed to Lupus (Wikipedia). He told me to enjoy my wedding and I would see him again a few weeks later. That was the first (of many) occasions where I told myself to bear up and focus on the positive.
Over the years, I have seen the specialist at least twice a year and have controlled a fairly mild case of the chronic disease. I have had two, healthy children, hold a full-time job that I love and lead a fairly normal life. However, there have been many days of pain. My joints are arthritic and achy. I run low-grade fevers often. I can’t spend much time in the sun and I sometimes am so fatigued that I can’t get enough sleep. Recently, I have had new symptoms that include pain and a heavy, tingly feeling in my legs. This may be from arthritis in my spine. (I’m waiting to get some lab work back.)
Besides a handful of short rounds of prednisone over the years, the drug that has given me the most relief has been Celebrex (Wikipedia). Celebrex is classified as a Cox2 inhibitor non-steroidal anti-inflammatory drug (NSAID). It suppresses the inflammation, so fevers, arthritis, and fatigue aren’t a problem while I am on the medication.
I was recently denied coverage of Celebrex by my health insurance company, Aetna. When the nurse called me with the news, I was shocked. My first thought was: how can I live the rest of my life in pain? My doctor’s office is still fighting the insurance company, but I am starting to lose hope that the drug will ever be covered. The out of pocket cost is $180/month. Aetna has specific criteria the patient must meet for the expensive drug to be covered. One of them is having documented gastrointestinal bleeding. In other words, I have to be bleeding internally from taking cheaper medications, in order to be on a more expensive one. Make sense? No.”
I would describe our healthcare system in one word: broken. Why should anyone, including the health insurance companies, make a profit from people being sick? Why aren’t more politicians trying to change this? I don’t want to fight this problem for the rest of my life. People who are really ill don’t have the time (and many don’t have the resources) to do so.
While I know that this blog post won’t change the system or make my pain go away, it feels good to put it in words.