I’ve been debating doing a month summary for all my doctor visits. Nothing detailed. Types of doctors seen and status of visit. Follow-up, new patient, etc.
I’m leaning towards doing this even though it’s a lot of work and being this sick is a job enough already.
I’ve also decided to try keeping a log of my mast cell explosion episodes since starting Xolair and understanding mast cell activation disease (or syndrome) better.
It’s so damned aggravating that the most information about MCAS on the internet comes from patients. For the Mast cell degranulation attacks (because I think that’s probably the best description) I’ll note what I assume are triggers, times, meds, and ALL symptoms.
If you’re reading this, what would you like to hear about?