My mast cells truly have a mind of their own. As I discussed in yesterday's blog post, today was attempt #3 to switch me from oral to IV steroids. After last night went pretty smoothly, I was more confident that the steroid switch would be successful. However, by about 1 PM, I required another dose of injectable and inhaled Epinephrine, so we resumed IV steroids. Of course, I am disappointed, frustrated, and amazed at how stubborn my immune system is being. This is truly a testament to the strength of the immune system, and the fact that my body needs a LOT of time to make any adjustments.
This afternoon, I was fortunate enough to have a friend come visit me to play a few rounds of Finding Dory UNO, as well as visits from my dad, step mom and mom. I worked on two assignments for my online course today, did a sheet from a coloring book, and finished a page in my "painting by sticker" book. I am incredibly appreciative for everyone's love and support through this hospitalization. This is my longest hospitalization yet, and I am still at least 48 hours from potential discharge. I am still really hoping that I will get discharged in time for my little brother's birthday. This has been a very physically and emotionally exhausting week, and my body doesn't seem to really want to give me a break. I had the IV steroids this morning, but I am still having widespread flushing, discomfort, and got another round of breathing treatments. Nevertheless, the only thing that we can do is continue to try again, and eventually, have a successful outcome. My understanding is that we will try again tomorrow, crossing fingers and toes. Hopefully the increased Gleevec will start to kick in and make a difference too.
A blog by Arielle, a twenty two year old with MCAS (Mast Cell Activation Syndrome), Autoimmune Angioedema, POTS (Postural Orthostatic Tachycardia Syndrome), Sjogren's Syndrome, immune deficiency, osteoporosis, and EDS (Ehlers Danlos Syndrome). Thoughts, feelings, academic endeavors, daily adventures (and misadventures). Pitzer College Class of 2018 (Psychology/Sociology) ---- UCLA Extension Patient Advocacy Certificate Program Winter 2019 ------ Family Resource Coach
Friday, May 5, 2017
Still No Luck
Labels:
careaboutrare,
chronic illness,
dysautonomia,
mastcell,
mastcelldisease,
mcad,
mcas,
spoonie,
spooniestrong,
spoontheory
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Crossing our fingers and toes here in Reno too.
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