I knew today was going to be tough but I wasn't expecting this tough. It feels like "if it could go wrong it will" and I am battling with the feeling of pure defeat .. I woke up so sickly and it all went downhill from there.
My nurse came to "discharge me" today and if that isn't enough she went to put the new needle in and it wouldn't go in right 7 times. Yes 7. I even tried once and it wouldn't go and lets just say these needles ain't tiny. She gave up and after letting it heal a bit I was finally able to get one in after 2 tries . pain. pain. pain. I have it in but it's temperamental leaving me in a spot where despite my allergy I HAD to wear tegaderm to keep it stable. I have leftover supplies that I am using to see how far I can get without home health, I already know how to change the needles and such so I will be doing that myself every week. If this needle I put will stay working that would be great. What also would be great is if I don't react to tegaderm.. All in a perfect world (Jesus Come Quickly, pleaseeee)
I then went to see the dermatologist who still won't do a biopsy and she is sending me off to a clinical study thing at wash u called the itch center. This burning and tingling and redness is APPARENTLY nothing but my normal skin tone and the pins and needles feeling that takes over my entire body and is oh so painful has no origin and this clinic might have an idea to make me more comfortable because "none of this is medical"...pain is real though. Imagine the pins and needles that occur when a limb falls asleep..take that and put it over your entire body even the eyeballs.
please pray that this needle will continue to work, my pain to be under control, and that my blood pressures and heart rates won't get too bad because my fluid supply is limited and if yesterday is any indication of how my body will handle it, it's not pretty. BP 80/40ish Pulse: 140
POTS-3
ME 0000000
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