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Showing posts from September, 2010

AS-my story

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I've been asked to share/tell my story so I thought I'd just share again on my blog as well for those of you who've just started reading. I'm a mother of 2 beautiful daughters And I have a WONDERFUL husband and BF of 20+ years. Ankylosing spondylitis (AS) was not what I wanted to join my family. About 3/4 years ago I started having terrible pain in my lower back and my hands and feet were so swollen and hurt so much. I went to my PCP and she did TONS of blood work trying to find out the cause of all the swelling and pain. I was checked for everything from lupus to rocky mountain spotted fever! I was referred to a rheumatologist (rheumy) who did an exam, looked over my PCP's records/tests/x-rays and he came to the conclusion that I had fibromyalgia . He started me on "drugs" and I had very negative reactions to every drug he would try and the pain and swelling was only getting worse. All the while my husband is saying you don't have fibro . You need

Flare or just paying for what I do? ugh!

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Everyone talks about getting "flares". I don't know that I get flares....do I? I do know that I pay dearly for what I do! It's more like a "side-effect" for LIFE! I'm not going to stop...I REFUSE! Yes, I'm YELLING! It frustrates me to no end to know that it KILLS ME to walk to the football stadium on game day--and sitting on bleachers...who invented those??!!! It KILLS ME to teach on Tuesday! It KILLS ME to work a full day on Wednesday. It KILLS ME to lead in worship on Sunday and then work with my teens that afternoon. BUT I will NOT give in and stop! So, do I have flares?? Who knows...I hurt all the time..sometimes worse than others and I just think of what I did and then say..oh, right--paying for yesterday. My beauties game day!!! Methotrexate seems to be kicking my butt right now! Thinning hair and nausea is the bad. So, if you see me on Thursday...that's my choice of being that

AS I HATE YOU!

Actually saying you hate something is a big deal in my home. You NEVER say you hate someone, but today, I really just HATE AS! So as you saw in an earlier post (if you follow and keep up) I went off humira to see if it was working...well, it was certainly doing something. I had gotten worse! What to do..go back on it? No, we're going to try Enbrel. Let me first say...having been on the shot and the injectable pen of humira--that is one more painful medicine going in and a few min. after. Enbrel...hurts, but not nearly as bad as the humira did. Yea! Something positive. Now.. hoping that it will actually work! Thinking I'll go and get a pretty pill box because I feel like an 80 year old woman with the pills I now have to take (no offense if you're 80). Here's the regimen.. 1x weekly enbrel injection 1x weekly methotrexate injection 1x weekly B-12 injection (I was defieciant here) and yes, I give those to myself 1x weekly Vitamin D (because YEP I was soo defieciant