This weekend has not been easy, I’ve been battling several issues all weekend long and at times have contemplated a trip to the ER. However I am doing everything I can to keep myself out of the emergency room by staying hydrated, forcing myself to eat, and forcing myself to take meds and complete my physical therapy regardless of past injuries flaring up. Who knew a little “pop” sound and a loss of strength in my right thigh would lead to so many falls, so much extra care necessary, and prevent me from doing many activities I wanted to do during this past summer. Unfortunately I can no longer do that yet another summer has gone by and I missed out due to chronic illness. This cannot keep happening year after year I sure hope John Hopkins Vasculitis Unit calls soon, they’re seemingly my only hope!
This Labor day weekend and all this past week has been sheer hell for my right knee and thigh. I’ve tried everything contant Ice packs all day long to keep swelling down, a knee brace, using my wheelchair, but no matter what I do getting to my room upstairs is still one of the most painful portions of each day. Where as I used to go up and down the stairs often except when weak I now avoid this perilous activity altogether unless someone else is awake or home to help me and to prevent me from falling backwards and splitting my head open. My brains wouldn’t be any good to the world sitting on the floor in a mangled mess, so i’ll stick to being better off safe than sorry. All that said I truly hope my right leg really begins to heal up well soon.
Now for the real scary stuff I’d like to reveal the fact that I’m now on medication to control my heart rate and that yesterday in severe pain it was resting below 60 so we were quite scared especially with my Mother at work and my Father having to leave for work too so I was left at home fighting to breathe with my fiance. Somehow I was still getting enough O2 my saturation levels came back fine on 2mL O2 not room air. I was rightfully frightened when my mom came home she kept checking in on me and my body is in a state of constant flux. First my skin was hot then cold, then I was drenched in sweat from the perceived temperature changes so I had to shower, not to mention I had been vomiting all day due to the changes in temperature and the migraines as well as 3 cluster headaches all taken care of with O2. In fact I’ll admit I slept 1 hour before I awoke feeling that terrible emptiness in my chest like I wasn’t getting enough air in my lungs. My Mother was so worried she even checked my blood sugar. Both of us no longer know what to do besides wait for Johns Hopkins to call. Yes there are tons of other doctors involved but at this point none of them has anymore recommendations on what to try, they are only willing to write letters to tertiary care units in vasculitis to accept me due to the rare and confusing nature of my condition.
Unfortunately my neuropathy, migraines, and cluster headaches complicate things so it may be a while before I hear back from Johns Hopkins on when we can come in. We’re so desperate for something to happen to my benefit that we even told the people at Johns Hopkins that we can be there with 24 hours notice or so. My Mother has an intermittent leave from work so we can go whenever they do eventually call. Until that day I will be writing to maintain my sanity.Right now I don’t know how I am managing but somehow I am, there were several times yesterday I nearly called for an ambulance but just cannot handle being in and out of the hospital yet again without any answers.
I truly hope my vasculitis can be resolved or that some miracle medication could relieve me of my pain which currently cannot be helped by even morphine, I simply get no relief! I know chronic migraines are difficult but at least most of my readers have a few hours of days even each month pain free…that’s all I want. Heck I’d settle for still being in 24/7 pain just less of it. I feel literally as if my body is being stretched until I break and I have no doubt that’s the Vasculitis and neuropathy acting up on me. As I’ve said many many times I’m just sick and tired of being so damn sick! Anyway I hope you all enjoyed this article it took a hell of a lot out of me. Just from typing and looking at this screen for a little while I know have a migraine, nausea from pain and the lighting, and my right leg is killing me. I just hope for some sort of relief and soon! I truly and honestly can say I am somewhere near my breaking point and I don’t know what to do about that.