Can I vent? I swear, this is the last downer. I'm having a rough week...rough is kind of an understatement. I've been to the ER ( and because of that, a brief stay in L&D triage) twice this week. I've been spasming so badly that if feels like some fibers are tearing, or are seriously strained. It is like fire from my mid back to my ears, and down my arms. Last night I was dry heaving from the pain, so DH made me go back down to the hospital. It is really frustrating, especially because I'm pregnant and I have to explain this 1 in a million disease to doctors and nurses that will never see it again in their career. Hard to do when you're trying to not cry. They treated me last night, after noting my account that it could screw with the pregnancy. I know that - I already met with a perinatologist.
We tried calling the neuro's office, and we were (wrongly) told that my neuro, his NP that I see a lot, and the other doctor familiar with my case were all out of town and unreachable until Tuesday. The jerk of a desk clerk said to call my OB. There was another neuro in the office, but the clerk refused to take a message, or page any of the others. I have a rare disease, not something like diabetes. My ob CAN'T treat this. Family practitioners CAN'T treat this.
I have a friend that works at a different office for the same hospital system, and she said to call her if we ever have issues. She has sent a message to my doctor to call her or us back ASAP. Turns out the clerk was lying, and my doctor is at the hospital doing rounds and what not this weekend. He is the definition of ON CALL. In the meantime, DH called my OB to update her and tell her what we need in case we don't get a hold of my neuro. Since the meds I have at home aren't working, meds like dilaudid from the hospital only took the edge off, and I'm still symptomatic, I need to be in the hospital until they can get this controlled. It is painful, and it can be dangerous if I have a fall or go into respiratory arrest from a spasm. Sorry for the rant...I've been bawling out of frustration and sleep deprivation.
(Rant over) So...if I'm quiet for a couple days, that's where I am. Otherwise...well...it's bed and reruns and copious amounts of tissues. I swear I'll be back to normal eventually.