I just got back from the Drs. I swear, I have seen the Dr. more times in the last 6 months, than ever before in my life! This wasn't for NF related stuff, surprisingly.
I have ulcers....Thanks to a little bacteria in my blood called H-pilori.
I've been having a lot of ulcer-related symptoms, so I thought I'd go in and get it checked out.
The tiny office I go to was swarming with other doctors...Most of whom I have never seen before....Some sort of conference was going on, I'm not sure.
Anyways....I get to my room (but first stopping to weigh myself...And I have to say that I was actually excited to step on the scale! I have been TRYING to lose weight actively since February of this year and been pretty successful at it!)
The nurse tells me to strip down from the waist up and wear the lovely paper napkin shirt...So I do as I am told and sit on the exam table for what feels like an hour....
Wait Wait Wait
A nurse pops her head in to ask me if it would be alright if one of the visiting Drs comes in to "have a look at me".....She goes on to say that "Neurofibromatosis is SOOOO rare, that some of the doctors were wanting to see me....."
Gasp! NO WAY! AN ACTUAL LIVING - BREATHING PERSON WITH NF!
I smile and say- "SURE!"
A few minutes later, a handful of nicely dressed doctors come into the room, squeezing around the exam table. I shake hands with a few and smile my sweet....(great I'm a guinea pig) smile.
"So...What makes you think you have Neurofibromatosis?"
HUH? Was I seriously being asked this?
I bite my lip and gulp down a lump in my throat.
I open my paper napkin shirt and showed them WHY I think I have Neurofibromatosis.
Yeah...So I flashed these doctors. What was I supposed to do? :) (Krazy Kristi winks)
The drs asked if they could exam my back as well.......I tell them,
"Well it's not nearly as attractive as my front, but go ahead!" :)
I gave a brief family history ---"Mom, brother....."
One doctor told me that NF was REALLY rare, and it was nice to meet me....
I explained to HIM, that Neurofibromatosis was THE MOST COMMON GENETIC disorder know to humans....and that it was NOT so rare. Impressed -The Dr again shook my hand. I thanked him for his willingness to learn....then everyone scooted out.
Ok...? I was alone again for a few minutes, when my regular DR came in.....
I left the doctors office feeling....I don't know....Weird. Did I teach those drs anything? Would any of them think of NF differently? Could I have done MORE?
Anyways...I put myself out there--I guess THAT'S what matters.