papercutdeath

[papercutdeath]

"Do you ever think about dying?" -Barbie

My medical records look like the Cheesecake Factory menu. I have specialists upon specialists that never consider what the others are doing or prescribing. With a mast cell disorder, disjointed care is inevitable and allows more symptoms and issues throughout body systems to escalate and debilitate. I'm lucky to have really good specialists who don't gaslight and want to learn more about mast cell disorders while they're treating me. You get used to being a guinea pig and the patient your doctors drag all the medical students and residents into the exam room to see. However, an immunologist doesn't work along side a gastroenterologist, when MCAS shuts down my ability to eat solid food. The GI might not treat mast cell disorders, so they treat for IBS or say "its just stress" - because they won't admit they don't know something or consult colleagues or medical associations.

After two and a half years, my body is much worse for the wear and the medicine cabinet looks like a pharmacy. After ugly crying my eyes out in sheer exhaustion, anger, and hopelessness, my new rheumatologist listened and combed through my Cheesecake Factory menu and said "You need to see a neurologist. I am concerned about how much worse this will get, and I suspect we're missing something more serious with your brain or nervous system. Then we need to try to get you to Mayo Clinic. You need a team to assess and create a treatment/ remission plan."

The seriousness with which she talked to me was not comforting, but bedside manners don't matter when you have a rare-ish chronic illness destroying your body from the inside. I asked her if she felt I was at risk of permanent damage or death. She said, "Yes."