I Am My Own Worst Enemy
...literally. I haven't written a health update in a while, so I guess now's as good a time as any.
Since my last post I continued to feel great, avoid germs, gain weight and increase my exercise. All systems were good...until one day when they suddenly weren't. About 3 weeks ago I was blindsided with an autoimmune "flare." Apparently my body thought it was getting too healthy and decided to attack itself, and by attack I mean wreak systemic inflammation. It first began with my pancreas and gallbladder, then quickly followed in my lungs, joints, muscles, heart, veins, GI tract and even my esophagus.
The pickle is that most autoimmune disorders are treated with drugs that suppress the overactive immune system. But because of my CF and high infection risk, I cannot take any of those drugs. The only immune-suppressant I can take is prednisone, and only for short periods of time. However, my rheumatologist (the doc who's supposed to help treat these flares) feels that even prednisone is "too dangerous" and should be avoided; she'd rather I wait it out. All the while each and every one of my other specialists tells me to take the prednisone, which sometimes makes me feel stuck in the middle.
As the flare continued to worsen, I made a judgement call to try one week of low-dose prednisone. The good news is that it helped...a lot! The bad news is that since I stopped things started to go back downhill real fast and have continued to worsen day by day--worst of all, my lungs, muscles and esophagus. So per my CF doc's request, I went in to my CF clinic today for a "sick visit" where it was confirmed that this autoimmune flare has triggered my lung infection, thus causing my PFTs to drop 11-12%. Balls!
They prescribed me 2 antibiotics and 2 weeks of a slightly higher prednisone dose, which I started the second I got home. I also have lots of pain killers, muscle relaxers, some herbal oils and, most importantly, Xango! I feel confident in the plan and hope that it works quickly because I have really been looking forward to a night of dancing next weekend (for the first time since last August.) Anyone who knows me knows that dancing makes my heart sing and that I need my body (and lungs) in peak performance mode to keep up with my brother.
In other news (yes, this is a totally random U-turn):
Dear Cancer,
You are a total asshole. I'm sick of you hurting the most marvelous, kind, genuinely good people who have done nothing to deserve your unwanted company. Try as you may to dim their bright, dazzling spirits, they will only continue to shine brighter to spite you...so suck it!
I think I'm done now.
Since my last post I continued to feel great, avoid germs, gain weight and increase my exercise. All systems were good...until one day when they suddenly weren't. About 3 weeks ago I was blindsided with an autoimmune "flare." Apparently my body thought it was getting too healthy and decided to attack itself, and by attack I mean wreak systemic inflammation. It first began with my pancreas and gallbladder, then quickly followed in my lungs, joints, muscles, heart, veins, GI tract and even my esophagus.
The pickle is that most autoimmune disorders are treated with drugs that suppress the overactive immune system. But because of my CF and high infection risk, I cannot take any of those drugs. The only immune-suppressant I can take is prednisone, and only for short periods of time. However, my rheumatologist (the doc who's supposed to help treat these flares) feels that even prednisone is "too dangerous" and should be avoided; she'd rather I wait it out. All the while each and every one of my other specialists tells me to take the prednisone, which sometimes makes me feel stuck in the middle.
As the flare continued to worsen, I made a judgement call to try one week of low-dose prednisone. The good news is that it helped...a lot! The bad news is that since I stopped things started to go back downhill real fast and have continued to worsen day by day--worst of all, my lungs, muscles and esophagus. So per my CF doc's request, I went in to my CF clinic today for a "sick visit" where it was confirmed that this autoimmune flare has triggered my lung infection, thus causing my PFTs to drop 11-12%. Balls!
They prescribed me 2 antibiotics and 2 weeks of a slightly higher prednisone dose, which I started the second I got home. I also have lots of pain killers, muscle relaxers, some herbal oils and, most importantly, Xango! I feel confident in the plan and hope that it works quickly because I have really been looking forward to a night of dancing next weekend (for the first time since last August.) Anyone who knows me knows that dancing makes my heart sing and that I need my body (and lungs) in peak performance mode to keep up with my brother.
In other news (yes, this is a totally random U-turn):
Dear Cancer,
You are a total asshole. I'm sick of you hurting the most marvelous, kind, genuinely good people who have done nothing to deserve your unwanted company. Try as you may to dim their bright, dazzling spirits, they will only continue to shine brighter to spite you...so suck it!
I think I'm done now.
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