Life as MommyMo

Sunday, December 11, 2011

For better or worse...

I know I've said it before: I have an awful time blogging about our "stuff" when it's not just fun stories about the kids. I apparently like to live in denial!

The last time I posted, we were just beginning to explore Sam's eating issues. We finally have his endoscopy scheduled for this Wednesday, an appointment that took forever to secure, and Rob and I came home from (an alone!) trip to Disney tonight to find out Sam is probably too sick to be sedated. I have a feeling I'll spend tomorrow trying to beg for an appointment sometime soon. I was hoping to have it done at the Children's Hospital of Philadelphia center near home so it didn't seem too out of the norm for him. Now I imagine he'll be going to the hospital so it can be rescheduled quickly.

In other news, after years and years of fevers and crazy symptoms that left me feeling like I was losing my mind when no diagnosis could be found, I finally know that I have a weird, rare, hard-to-pronounce autoimmune disease. I've had a suspicion for a while after a crazy blood test, but managed to use my word nerd tendencies to their fullest capabilities and not admit to myself that the evidence was there. Basically, I read the result as I *could* *might* *maybe* have a *tendency* toward this icky illness. Then I did what I do best -- focused on someone else's problems (this time they were Sam's) and waited to follow-up on my own stuff for a couple of months.

My awesome doctor gently broke the news that what I was reading was real and that I needed serious treatment. His advice was to send me to Johns Hopkins where doctors at only one of four locations in the US are experienced in treating autoimmune vasculitis. He also hugged me as he left the room. That is what did me in. Words didn't convey what I was dealing with (and shock was probably playing a factor) but getting a serious hug from my stoic doctor woke me right up. After getting ridiculously nervous and then calming down and doing tons of research (big shocker) myself, I found a doctor at UPenn who jumped right on the case, even coming in early the day after I called his office to see me. I have a lung and sinus scan tomorrow to stage the disease (as much as it can be without a biopsy, which he feels he can spare me from right now) and then I start nasty drugs. We'll see which ones based on the outcome of the scans and what my titer levels are this week.

Before then, I will focus on Sam's test (assuming he can have it), do a few fun Christmas things and have a few friends over for a list hurrah with margaritas on Friday night. I have my priorities.