I need to vent. Having both Addison's Disease and a severe systemic mast cell disease has truly started to take it's toll on me.
In order to treat my systemic mast cell, I have been put on #cancerchemotherapy and I wish I had known more about my regiment before starting. currently on a regiment of 2-Cda, a once a month for 5 days treatment of the drug. balancing all the different steroids, how to cortisol pump and stay out of hypertension from pre meds of solumedrol being so high have left my body unrecognizable at times. I often feel as though so little thought is put into my need for fludrocortisone I get so so sick coming off the high dose IV solumedrol to liquid prednislone to my cortisol pump and daily fludro, I have complete and total adrenal failure. And honestly just feel wiped out. I'm not having anaphylaxis to everything anymore, but still on the TPN daily.
Does anyone else feel like they just need a mini break from all the crazy? From the constant blood pressure and pulse ox checks? The constantly accessed port? I would give probably anything for an hour, heck 10 minutes of feeling safe deaccessed from my port.
the chemo is slowly working, and for that I am hopeful. I miss eating food, I miss drinking water.