Nicole's Journal
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March 21, 2009
Second Opinion
Thought I'd write a blog about how important it is to be your own advocate.
As you all know from my profile I have had lupus and APS since I was 13. It's been a struggle but until recently I hadn't had any flare ups for over 5 years. Recently I had to switch doctors. For about 4 months now my platelets and kidney functioning have been dropping. I have been in and out of the hospital and have missed school and work...oh and not to mention just being in pain. My old rheumatologist (Dr. Sonofabitch) said my lupus was fine and there was nothing he could do on his end. Which led to my hematologist concluding that maybe my platelets were dropping as a side effect of my medicine (medicine that I have been on since I was 13...fishy huh?) Therefore they took me off of my meds and put me on prednisone, off and on the past 4 months. I wasn't getting any better so I finally got tired of it and went to a new rheumatologist who said, after looking at ALL of my records, that my platelets and kidney functioning were down bc my lupus was active O_o WOAH!!! To which I replied, "No, that's not what my previous rheumatologist said" And then he explained my levels and all the blood work shows that my lupus was active each time my platelets were down. He said had my rheumatologist treated my lupus 4 months ago I wouldn't have been in and out of the hospital and everything would be fine. So I am now back on all my meds and even on a newer lupus medicine (Imuran), which my old rheumatologist failed to tell me about. It sucks. I am happy things are better but am pissed that the past 4 months of my life were spent in agony and anxiety. BUT things are looking up!!
I am an old pro when it comes to doctors. I know the protocol. I have never had a doctor be so uncaring and unprofessional as this doctor has been with me the past year that I have been going to him. As a lupus patient I know that a flare up in inevitable, but this doctor did not do anything to help me! I have to tell you all, even if you have the greatest doctor in all the land, YOU are the best judgment for what's best for you. I can not stress enough that you have to be your own advocate and read up on things and do your research. Ask the doctors questions...there are NO stupid questions. Many times my old rheumatolgist made me feel as if my questions were stupid. I have actually since concluded that ultimately it was his ego that was hurt whenever I questioned his authority.
I wish I had the past 4 months of my life back. But I am feeling better and things are looking up. I just thought I would share this with all of you!!