Tags » Mystery Illness

No Real Answers

My lip being cyanotic has happened twice since but nothing as severe as before.

I saw the Doctor the next day. When I woke up, my lip was swelt. 389 more words


Shots, Shots, Shots, Shots (LMFAO...the band, not actually laughing, anyone?)

So much has happened, and so little has happened, that it was hard to sit down and write anything at all about it. On one hand I know I won’t know for sure until the middle of July whether or not the Rituxan has done anything, but I know in my gut that it hasn’t. 828 more words

Behcets Syndrome

But you look so good!

I have not posted in a while – life is full and I was feeling somewhat lazy.  However, it is a rainy, stormy day and a long weekend, so I feel a desire to think and write. 828 more words


Well that's new

Had a really weird experience while sleeping last night.

It was like my whole body “fell asleep” in the same way your leg or arm does when it has been a weird position for too long. 203 more words

Redefining Normal after the Unexpected Part 3

Two days into our hospital stay Alicia was moved to the PICU. Her NIFs (negative inspiratory force) were decreasing. She became pale and was having trouble breathing. 853 more words


Redefining Normal after the Unexpected Part 2

Upon admission my daughter had no less than 15 doctors, nurses, and residents milling around her asking questions and doing exams. There was definitely a sense of urgency in the room. 571 more words


Salsa Promised Land

Have I ever shared with you that I have a mystery disease? I saw that. One sentence in and you’re already rolling your eyes. Our middle daughter Amanda has inherited this fascinating unidentified illness as well. 589 more words