The Danger of "Search"

Preliminary research revealed several things:

- only about 300 people in the world have been diagnosed with melorheostosis

- the disease usually hits the very young (little kids) much worse than those over 20

- a closed bone biopsy might not be possible because the affected bone has become harder and denser and might very well be impervious to a needle

- an open bone biopsy might require an overnight hospital stay and staying off my foot for 48 hours


What I know is there are many friends praying for me and I feel calm.  I do.  I do not feel panicky.  I do not feel frantic.  I feel annoyed that this could be one more weirdness - fanciness - about me.  Just in case you do not know how fancy I am, lemme tell you, there is a list:

- unexplained fainting - after years of different tests, the doctors finally decided I "vagal" and pass out.  Over time, I finally figured out that if I'm simultaneously too tired, stressed, physically hurt, hungry, and emotionally distressed, they work together to create the perfect storm for me to pass out.  Ask my college roommate who found me sitting in the litter box, passed out cold.  Ask my doula who caught me as I passed out in the parking lot when my husband parked ridiculously far from the door when I was in active labor (a 6 already).

- chronic ITP - after several pregnancies with plummeting platelets, a hematologist finally decided I had chronic ITP.  ITP basically means "unexplained low platelets" and the only time it could cause a problem is in a horrific accident or surgery without a CBC to check my platelet levels first.

- pelvic congestion syndrome - a congenital condition where a pelvic pain pumps blood the wrong way.  I had surgery in December to correct it.


My best guess is I will have the bone biopsy and the specialists will all get together, scratch their heads and say, "well, we don't know why or how, but it does not seem to be causing any problems - go live your life."  My medical chart is full of that.  And I am okay with that answer.  Truly.

In the meantime, I am wearing the boot most of the time and staying off my foot as much as possible.  Ha.  My, what a turn this blog has taken.