I saw the GI on Wednesday and he was unhappy with my progress (or lack there of) and doesn't know of anything more he can do for my nausea. I have vomited three times in the last week at school so what we are doing now is clearly not working. He is frustrated with my endo and primary care because it is obvious that there is something more than just the AI going on, but they don't seem to be that concerned. He tried to play the depression card and when confronted about it he said that when doctors don't know what something is then its time to blame it on some sort of mental illness (we already know that they try this and they have been majorly wrong more times than I care to count). He then said that I have enough physical symptoms that it probalby isn't depression (after we offered to give him my therapist's name who would happily chew him out for suggesting it again) since it wouldn't cause me to have low estrogen prolactin and an abnormal brain MRI.
He suggested that our next step is to try some place out of state. His preference was Mayo clinic,but seeing as our insurance won't cover it we are out of luck. Cleveland clinic isn't covered there either, but I'm not sure I would want to go back after my experience with the senile Dr. Stanton-Hicks all those years ago. He called the day after my appointment because he couldn't sleep the night before 'cause he was worried about me. He called my geneticist and talked with her about going out of state and is planning on comming to my genetics appointment later this month so that we can get a plan together. I don't think she is as on-board as my GI and thinks my problems aren't real because I didn't have a seizure in the 15 minutes I was alseep for my EEG. In fact she didn't even realize I had the bladder pressure tests and that they showed that my bladder is basically just a giant bag. So she kind of sucks.
The wound clinic appointment on Wednesday was unpleasant. You put on EMLA cream an hour before and cover it with tegaderm so that it is nice and numb for the debreidment. Unfortunately local anesthetics don't really work on EDS'ers and he didn't particulary beleive me, that is until he was slicing open my already sore and inflamed incision and I was clearly feeling every scalpel slice. Then it was packed with collagen to provide a foundation for it to heal and covered with a silicone dressing. Hopefully I won't prove allergic to this dressing-I have already proved to be allergic to the 100% silicone foley catheters and by allergic I mean giant blisters inside and out-he insisted that it had to be some sort of coating that I reacted to and that this would be fine. We will wait and see, hopefully I won't end up with a bigger problem than I started with.
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