Friday, September 11, 2009

Sarcoid Rears It's Ugly Head

Well, my sarcoidosis has been acting up again. What does that mean to me? Well, I have Iritis/Uveitis in my eyes that is chronic. This condition causes my eyes to be very sensitive to light (if untreated). When it first occurred it was so bad that keeping my eye closed wasn't enough, I had to cover it (I used my hand...not a patch). On the more annoying, less painful side, it also feels like you always have a piece of dirt in your eye. I take a once a day Predisolone (yes, liquid prednisone...and it hasn't been tested for safeness during pregnancy) drop to keep it at by. This doesn't make it gone, I still have very mild symptoms and if I miss a day or two my eye gets all veiny (a sign that there are worse things to come).
Additionally, about a month ago I started an outbreak of Erythema Nodosum. What are they? Well, in laymen's terms they are growths in the fatty tissues of your skin. They are hot to the touch and they look and feel like bright red painful goose eggs (although they are usually only about an inch to an inch and a half in diameter). They covered my legs from lower thing to my ankles, concentrated in the area around my knees, at it's peak I had 18. It was hard to sleep because no matter how I laid I was putting pressure on them.
I thought that I had one of these growing under my knee cap. I think I was wrong, or at least it has now mutated into something else because my knee has now swollen to a small melon size. It comes and it goes and I'm not sure how my lack of movement affects it. I think in this case it actually affects it for the worst. It is mildly painful, particularly when I stand up (I think fluid rushes back).
I called my rheumatologist yesterday morning and got this new secretary who I could tell would leave my message on the pile for the end of the day. I called back about four hours later and left a message again. Got a call back almost immediately from the nurse I usually deal with and was talking to my rheumatologist as soon as we could stop playing phone tag. Unfortunately it was too late for me to make it to her office before it closed. Had the freakin' secretary known what she was doing I could have gone in right after school. Anyways, the frustrating part is there is a definite ebb and flow to this and I'm not sure how long it will stay and so it is easiest to go in right when something flares because I might make an appointment for next week and things will only be mildly swollen...and then the next day be in the middle of a watermelon sized knee. So I guess I'll just have to wait until next week. Here's the fun part though...I'm a teacher and for reasons hard to explain next week will be my first instructional time and only the second time I've seen my kids this year (I have a cycle schedule). Go in the afternoon? Sure, BUT, my rheumatologist has hospital hours all next week during the afternoon.
So what to do to fill the time between now and then? She suggested I go back on my Ibuprofen regiment to decrease pain and swelling. That is 800mg 4x per day. This is the maximum allowable dose per day, it is the equivalent of 16 Advil per day in four larger than bite size fun pills. Since I don't know if I'm pregnant I'm just not sure this is a good idea. She said it was okay and I've read online that Ibuprofen is okay in early pregnancy...just makes me really nervous - especially at this dose. She also suggested an early detection pregnancy test, to ease my fears. I SHOULD get my period on Tuesday (only a few days away, yay!!!). However, I've read that before your missed period they are not necessarily accurate as for some people implantation might not even take place until the day of your missed period. Kind of seems like a waste of money. Then I keep thinking...what if I take it and it is positive. That would be amazing!!!! If I am pregnant though I am a little worried how my body is going to respond considering the way things are starting off. Sarcoid can get better but also worse during pregnancy. Has to be worth it though :) Thanks for letting me vent, again!!!

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