I am a firm believer in advocacy. When I started racing I would make sure I would get at least one cancer racer a year because both my grandfather and my uncle died as a result of cancer. I am still a HUGE supporter of Susan G. Komen, I try to do Tri for the Cure every year and last year I did Ride for the Cure (really enjoyed it).
It has been about four year since a doctor started talking to me about the possibility of having an autoimmune disease. When the doc started mentioning Rheumatoid Arthritis (RA) all I could see was my life as I knew it was over. When the RA blood test came back negative I assumed I was in the free and clear. I tried to ignore the fact that things were not right, but I knew damn well that there was something going on with my body. Nearly a year later my primary care doc started putting one and one together and sent me to lab for a FULL work-up… My blood work came back and low and behold her suspensions were confirmed. She asked if anyone in my family had an autoimmune disease, I had no idea what she was talking about. She explained that I was showing signs of having lupus, but wanted to recheck my blood work in a few months. I started doing research and not liking the answers I was finding. Unfortunately there was no celebrity spokesperson for autoimmune diseases. A few months later my test results were the same. Since my doc is only a family practice doctor (and the best damn one I have ever met) she couldn’t officially diagnose me. She put in a referral for a rheumatologist to figure out for certain if she was correct with her suspected diagnosis of lupus. I did not realize just how long the wait would be, I figured a few weeks maybe a month, yea, right! It was a few months! While I was waiting I went into a flare up (not realizing what was going on at the time). I hurt all over, I could not get rid of the feeling that an elephant was sitting on my chest, it was horrible! When I finally got into see the rheumy I got to enjoy all the tests all over again (she wanted to make sure the lab didn’t just mess up), made me fill out an insane questionnaire, and politely informed me that I had better keep my job (with medical insurance) because I was no longer insurable. Her bedside manor was horrible, she did, however, confirm the diagnosis of lupus. After my second appointment I received a letter stating she would no longer be my rheumy and I had 30 days to find a new doctor, no reason was given. After googling her I found out this is not an uncommon practice of hers. Luckily there was a rheumy in my primary doc’s building and he was able to get in me within a couple of months! His whole office is great! I have been with him ever since, I did get lectured when I ended up in the ER due to back pain and did not notify him right away, but I should have known better.
Long story short, hmmm according to my word count I am already over 500 words, so I guess it is to late for that!!!!! Sadly, lupus is not a well-known disease. Even sadder there is no cure. My goal is to spread the word about lupus as much as I can. One of the groups I support is Cure4Lupus.org, they are urging people to request a proclamation from their states’ governor to make 10 May 12 Lupus Day. I submitted my on Sunday and got my proclamation today! I was so excited! So, here in Colorado the 12th of May 2012 is Lupus Day!
~If you hear that someone is speaking ill of you, instead of trying to defend yourself you should say: "He obviously does not know me very well, since there are so many other faults he could have mentioned"~