So during Finals in December my face swelled up like an allergic reaction. I went to the doctor and got a steroid shot and it kind of went away for a few days, but by the time I got to my parent's house for Winter Break IT had come back. I figured it was allergies but at this point I had no idea. I couldn't go to a doctor back home because my insurance doesn't work there anymore. So the day I got back to Texas I went to my doctor and got another steroid shot, which didn't work, and was sent to an immunologist. and the crazy journey in diagnosing me really got moving.
This was my face for weeks. It hurt so bad and I had migraines all the time from the pressure on my skull and eyeballs. I was miserable. I had to work like this, and go to school like this.
Part of the diagnosing process included over 90 shots in both my arms, multiple days of blood draws and lots of doctors visits that lasted hours.
I couldn't sleep because no matter what I did I was just in so much pain. They put me on a serious dose of daily steroids and after a few weeks of tests they finally concluded I have an autoimmune disease called Sjorens Syndrome. IT has been causing all sorts of problems with me that I have always just assumed was just life. They put me on a immune suppressant and my world has seriously changed since. I am still having to get tests run every 6 weeks, and only got off the steroids last week (that they put me on in January) and my eyes no longer produce tears on their own and I show new symptoms we have to tackle every few weeks, but I haven't had a migraine since I Started my meds, I no longer have allergies and my face doesn't look like the elephant man anymore. I don't feel as good as I did after I got my thyroid removed, but I don't think I will ever feel that good again unfortunately.
I am up to five new medicines added to my daily routine, I have alarms on my phone to remind me to take them since some of them cant be taken at the same time as other, some have to be taken with food, some without. Mostly it is a mess and all of them mess with my stomach. When I get really down though I think of Heather, my nanny form when I was little. She had Cystic Fibrosis and had to manage so many medications and breathing treatments it sometimes scared me but she always had a smile on her face. She passed away two years ago but I remember her every time my alarm goes off.
#SjorensSyndrome
#SucksBigtime
#AddItToTheList
#CFSucksToo
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