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POTS

Ball Rolling!

Oh my gosh yes!

Monday morning I woke up and Master had the best news for me!  We have finally found a rheumatologist that takes my insurance, and on top of that my neurologist was able to mark my referral as urgent so that it can be reviewed more quickly.  I still may need to wait up to two weeks just to get my referral approved but I have already been waiting months for this referral so I’m just glad we finally got the ball rolling there.  The thing is, once I get the referral approved it still could be weeks or months before I am seen in person by a rheumatologist but at least we are one step closer!  Right now I’m just trying to take things very day-by-day and see the positives.  For me this is a huge positive.

I’m still tapering off of my Prednisone, and it’s going poorly.  I feel absolutely terrible, and I’m having trouble sitting or standing for too long.  Sometimes I’m able to sit up for a few minutes at a time, and sometimes I can stand for a few minutes but I have lots of times when I can only lay flat which is just awful.  My potassium is low again (we found out at Infusion) so we’re working on trying to get that up in addition to the iron but it’s really hard because of all my stomach problems.

My days are so crummy right now.  I’m still managing to get my chores done, but instead of doing them in an hour or so I can only do very tiny bits at a time (like putting away two or three dishes out of the dishwasher whenever I’m standing up for something) and it’s taking me all day.  Still, I’m getting things done.  Master had to fold one load of laundry in the last ten days because I couldn’t do all the bending and was extremely lightheaded, but I think that overall that’s a pretty good track record considering all I’m going through physically right now.  I’m not saying the house is amazingly spotless or anything, I’m just saying I’m managing the very basics right now, even if they are taking me all day.  Little things to be thankful for, says I.