OK... so just out with it already. I have rheumatoid arthritis (or at least that's the most probable diagnosis at this point). Now that that's off my chest...
First off, I need to apologize for those of you who are hearing the news for the first time via a blog entry. I have kept the following pretty close to home for quite some time for a lot of reasons. It's been a long few months and I haven't quite figured out how to address this with people- how to bring it up, how to answer all of the same questions, how to lie and say I feel great or how to tell the truth and say I feel like crap without getting people to feel sorry for me. I wasn't sure who I wanted to know what information- family, friends, patients, colleagues. Honestly, I was just waiting until I achieved "remission" or "flare-free status" and then I could just say that I was taking medicines and it was all behind me but I didn't quite think I would be waiting this long and still be feeling not 100%
As my cousin said to me today, "You are the most refreshingly blunt person I know" and I figured bluntness was the best way to go about this.
So, to answer the most common questions:
I started feeling sick in January- hand pain and fatigue
It got worse in early April.
Went to my primary (who rocks!!) and he did all the right blood tests and Xrays which were all normal so we were reassured.
Felt worse in the middle of April.
Went to a rheumatologist who ordered more blood tests which were all normal.
Felt even worse so went back to the rheumatologist who then ordered an MRI which showed synovitis and joint destruction consistent with rheumatoid arthritis.
Started on meds including prednisone, DMARDS and a biologic.
They didn't work so switched to a different biologic.
Now waiting for them to work.
Yes, I've gotten a second opinion.
Yes, I'm thinking about getting a third opinion.
Yes, I've thought about the role that stress might be playing.
Yes, I've thought about "alternative" treatment options.
Yes, I'm grateful that I've been handed this diagnosis in 2009 and not in previous years as they are more aggressive with meds earlier in the course to avoid permanent disability.
No, there is no family history (that I know of).
Yes, it sucks that I can't drink (especially since Jim started brewing super tasty beers).
Yes, it's hard to be on immunosuppresants while you're in the midst of an H1N1 epidemic and a doctor.
And, no, I'm not pregnant... just gained 10 pounds from the prednisone and a few more prior to the prednisone from the fatigue of the disease but I started exercising again (although at a quite frustrating minimal level) so hopefully those pounds will go away.
Any other questions... feel free to email or call.
I'm trying to fight this with my usual sense of humor and head down, plow on through attitude.
That being said,
3 comments:
Nice post. Thanks for your candor. We're with you! Love, Aunt Barbara
Linda,
It's a natural reaction that people will feel bad for you. Just tell them that you are doing all you can do & a few prayers (no matter what kind) will help. Also a positive attitude will also help. Take it from someone who's knows. Your in my thoughts & prayers.
Love,
Lu Larivee
Linda, just discovered your blog via facebook. I trust you will feel better soon and figure out the best combo to deal with it. I suggest responding to the pregnancy question with "no, but you look like you've put on some weight - if I weren't so polite I would have asked you if you were pregnant." :-) Let's chat soon about stopping to see you all in a couple weeks on our way to Maine. Kristen
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