Finally, good news to report! The CDI seems to be making a HUGE impact so far. For the first time today in 3 months, I woke up with NO swelling in my lips. We have been playing with the doses throughout the day to try to hit the "sweet spot." Regardless, I didn't have any swelling today except for some minor cheek and lip swelling an hour ago, which is a miracle, considering I have been swollen non stop since the routine shot that set me into a tailspin back in March.
Since nothing is airway related, I get to go home tomorrow! At some point tomorrow, the home health management company is going to bring the pump to the hospital, and show my step mom, Beth, and I how to use it, change out the medication, cover my port to shower, and all of the technicalities involved with the CDI. At least once a week, a nurse will come to change the needle in my port, deliver the "cassettes" of medication, and generally check in. Tomorrow will be a learning curve, and an exhausting day, but I am ready to get out of here and work on having a more "normal" life. I am currently waiting to be moved to step down, and hopefully get a good night's sleep. Today I was fortunate enough to be visited by Connie, a Zentangles teacher, and my neighbor, which were a welcome break and much appreciated. Thank you all again for all of your well wishes, let's keep the positive momentum going!
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
Tuesday, May 9, 2017
SUCCESS!
Labels:
careaboutrare,
chronic illness,
dysautonomia,
mastcell,
mastcelldisease,
mcad,
mcas,
spoonie,
spooniestrong,
spoontheory,
strength
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