Uncategorized

GI portion of HSP

I know that this disease rarely affects adults and the adults I know that have the disease,  that I have spoken to, all share pretty much the same issues with their gastrointestinal tract. I always have such a hard time explaining to people what it feels like when I’m full on flaring. My flares never start the same but they usually include these starting out in no particular order. I get an infection on the side of one of my finger nails that causes puss and lots of pain, I get a mouth sore that is filled with blood and usually pops, I get a 3 day long migraine with vomiting, my feet start to hurt really bad if I stand or walk, I swell up all over, I get bad light sensitivity, my skin starts to hurt really bad like carpet burn, I start to break out with little puss filled bumps all over my chest, face, back, scalp, I get dizziness, my joints start to hurt really bad and get really still, fall down because my joints are too weak, brain fog, can’t form sentences correctly, hear sizzling sounds coming from the base of my skull when I’m laying down and in pain, I start having involuntary muscle spasms when I’m trying to be relaxed but in pain, and I’m sure I’m missing some. When I’m full on flare I get vasculitis skin rash, severe abdominal pain that can only be described as someone being in my gut pushing their legs on my lower back (heavy pressure) and at the same time clawing their way through my intestines with sharp nails. When the pain goes it always comes back within minutes and it’s always worse than it was before, I have horrible liquid diarrhea with whole pieces of undigested or partially digested food, I loose my appetite, I get so tired that literally no amount of sleep will safice, in also just always tired regardless (started as soon as this stupid disease started), I get joint pain so bad that sometimes I have to use a cane or just stay in bed, I can’t function I basically cry because of pain and sleep in between crying/pain sessions. I also constantly have issues with my esophagus which gets much worse when I’m flaring, I choke on food because it won’t go down or I cough because I get food in the wrong pipe, I choke on my undigested regurgitation at night, I have chest pains, I drastically lose and put on weight based on my flare status. The list goes on and on and on. The list gets bigger, just when I think I might be safe will have no more new symptoms more come up. Every single time I eat anything I get sick. The rashes are embarrassing. People always stare when the rash is involved. They think you have lepersee. I think in the last year I can count on one hand how many good days I’ve had. Just thought I’d give a symptom update. 

Yours  truly, 

A very tired goddess

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