So I know I haven't been consistently updating (I've been dealing with a lot of medical housekeeping). I thought I'd fill everyone in on what's going on.
I was in limbo for a good while with home health agencies because no one wanted to make special accommodations due to my reactions. That meant I had a few weeks here and there without my infusions. 2 weeks ago, I finally got a company who was willing to take me & I found a way to get the special items I needed.
Well jump to today. My weight is up; I've gained 40ish lbs. My doc now thinks I should take a break from the infusion. I'm still collecting fluid below my incision but at least it's not coming out of my skin & am getting significant pain in the area. I'm getting severe abdominal pain & have hives around my port site. Stopping the infusion may get rid of the hives associated with the infusions, but it will also bring back the hives I have everywhere else. So either way something loses. It will also make it difficult for me to eat again.
I have been trying weekly to get in with a specialist but I never receive a call back. I'm trying really hard to stay afloat. I'm blaming the sudden change in weather.
I do have a positive update to note: I've been approved for disability! I guess my crappy year in & out of hospitals helped them understand how serious my conditions are.
Hopefully everything is a bit easier now!
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