I hate POTS

No seriously I hate this disease! I hate the disease that robs my daughter of the things she loves to do!  5 weeks into a bone bruise on our foot and we are still down and down hard!  Yesterday after a rush doc visit to learn that we aren’t sure why the pain is so bad and not being able to stand for more than a few minutes today its more of the same.  Heart rates going from the 60’s to the 100’s upon standing and BPs that are going up mean that again she is still in bed.

This disease that robs kids of their lives, their fun and just simply their childhood.  Today is the second day of dress rehearsal for Elf Jr.  and I am hoping and praying that she’ll make it. Not sure what happens if she doesn’t! If nothing else I’ll take her and stay with her to make sure she’s OK.  I would give anything to have her be better to have this not be our normal.  In fact I’d give anything to go back to what our normal was!

I just want her to at least to be up and walking around instead of lying in bed unable to stand.


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