Thanksgiving this year has snuck up on me… I was wholly unprepared for more body backlash on yet another drug experiment that I recently started. This was my first trial dedicated to a “big hitter” drug for my mast cell activation syndrome (MCAS) diagnosis. I am covered in a combination of a rash and acne breakout and have been sleeping mostly since I started this drug. With every new drug, I keep naively thinking “this one will work!” I do not know yet if I am poisoning my body or this backlash will be transient as my body acclimates to the drug.
With all this going on, I am finding it very hard to be in a Thanksgiving mood. This will be the most expensive drug experiment to date if it actually works and I make it past the extreme fatigue and extreme rash/acne body breakout. Should I be thankful when a drug that is a generic will make me go broke? That our healthcare system is so messed up that even having health insurance is so costly? That my body is so screwed up that it continues to reject drugs that are meant to help it?
My vent could go on for hours and I know I would still not feel better. I have cried – and while I am very fortunate that I have the ability to cry still because with Sjogren’s I won’t always – crying doesn’t make me feel better and my head feels worse. So I end up laughing even in this really sh*tty state because it is sort of ironic that the medicine that is meant to help control my MCAS symptoms has now created one epic eruption of a rash/acne breakout virtually everywhere on my body (I mean that is par for the course in my world, right?).
So here’s my unsolicited Thanksgiving timeout advice: Be thankful for what you have (or don’t have, because trust me, you don’t want this nasty rash/acne breakout or fatigue). Always know that you don’t have to keep up with the Joneses (or Kardashians). Family can be a pain in the a** but that’s OK because family love is unconditional (if not, then they are not worthy of you). Of course Thanksgiving or even Friendsgiving can be stressful, especially for the cooks in the kitchen (but try not to stress too much, it ain’t worth it). But above all, Thanksgiving is also a time to give (in some form or fashion, even if you don’t have a lot – pay it forward) and to be grateful (even if it is a struggle). So while I am not thankful for my body, I am beyond grateful for the support that I do have. Wishing y’all a happy, healthy, and not too hectic Thanksgiving! #sickbutstillsassy
PS. I will write a specific post about this drug experiment soon as I am not sure how this will end yet. I also still need to write a “post mortem” on my failed October drug experiment for my POTS. It’s hard to keep up when I’m mostly sleeping…