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Saturday, September 14, 2013

Sarcoidosis

It's been five months since I've had to juggle appointments and deal with doctors. But those were for others. I hate to admit it but I have not been a good patient. Being Mom allowed be to focus on something other than my chronic illness and I believe motherhood played a big role in my illness becoming stable.

But last week I had a scare that sent me to get checked out. And while what sent me there turned out to be ok, my blood work came back and seems to indicate a "flare up" of my Sarcoidosis. Here's a tip: if one test is abnormal that usually means there are more tests in your near future.

I didn't do much about my disease while the kids were here. I didn't have time and my symptoms were not bothering me. Well, things bothered me but they were not Sarcoidosis related. And there isn't much I can do about it aside from take pills. Doctor have always said stress is bad for my disease but foster kids or not, life is stressful! Is it a coincidence that the kids left and I'm on the brink of illness? Probably not.

The days after the Fab Four moved out were dark. And painful and ugly. And it's been a few years since my blood work showed so out of whack (which is about right for my illness). In short, I was probably due.

So I went about the process of finding my doctors who have moved health systems and have left the area. And as expected, I will have to wait 3/4 weeks to see those specialists. 

I feel fine. Rundown but I don't feel sick and I'm not in anymore pain than usual. Sarcoidosis can affect any organ but is commonly found in the lungs, eyes, skin, and heart. It can also be found one the central nervous system or brain. I have had it in my lungs and my brain. Common treatment for Sarcoid is steroids and other immunosuppressants. I have tried nearly every medication that is used to treat recurring Sarcoidosis. In the past, there have been instances where we have chosen not to treat and let the disease resolve on its own. And by resolve I mean go into remission as there is no cure for Sarcoidosis. (Why would I chose not to treat it? I react badly to steroids and there are risks associated with prolonged use of them. IMO the side effects of the steroids have always been worse than my disease itself. 

Maybe ill get lucky and someone will call me with kids available for adoption tomorrow (and won't decide to give them to another family) and motherhood will kick my disease into remission! :) 

1 comment:

  1. Wow I have never come across a person in bloggy world that has Sarcoid. My husband has full blown sarcoid and a life threatened case of valley fever... the meds are steroids work against the anti fungi meds to work... making him a VERY VERY sick man
    I made him up his life insurance it is do bad. Good Luck with your illness.

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