I would like to present the following facts:
- I am “allergic” to the sun.
- I am highly intolerant of garlic. Consuming even a little garlic powder will compel me to compulsively send the poo emoji as a SOS signal from the bathroom.
- I prefer to sleep during the day.
- I have Raynaud’s; my hands and feet are cold to the touch.
- My sense of smell now rivals that of a bomb-sniffing dog. On Thursday night, before I opened the screen door of my parents’ house, I could smell the presence of unscheduled company. She wasn’t even wearing perfume!
So if this blog mysteriously stops being updated:
a) I have succumbed to anaphylaxis. Please send memorials to my poodles’ trust fund.
b) I have realized I am indeed a vampire and I am exploring new hobbies. Maybe my hematologist will offer me a meal plan.
P.S. I think there is more literature on vampirism than MCAS. And now I’m going to have hive-inducing nightmares.
Not a vampire attack. Just an every day mast cell reaction.
Apparently, today is Anaphylaxis Awareness Day. So here is my educational effort:
If you spend any time with me at all, please learn how to use an EpiPen.
Okay, I’ve worked in politics long enough to know this is ineffective messaging. So how about this:
Do you really want to watch someone die?
Whether we are BFFs or not, if I die in front of you (while making eye contact, of course), I promise you’ll walk away with some psychological damage. And that can be expensive. A two-second stab in my leg and a 9-1-1 call will take a lot less time than all of that police questioning. Also, you’ll avoid a big mess – of the literal variety.
I’m not even going to get into the supernatural consequences.
Be a hero or be logical, I don’t care. Learn how to administer an EpiPen.
Last week, I had my three-month mast cell check up. Here are my top four accomplishments/signs of progress since my last visit:
- No ER visits. Technically, I broke this streak three days after my checkup. I am quickly learning what my triggers are (lemon cupcakes, Cascade detergent, stupidity…) and how to pound Benadryl at the first sign of a reaction.
- I can sing Adele without triggering anaphylaxis anymore. Also technically, not true. I TRY to sing Adele, and my lungs and dogs hate me for it.
- I can shower without turning into a red blimp and passing out, which is not a fun way to start any day, but especially workdays. The alternative, not showering, is frowned upon.
- I found pants that I’m not allergic to. Like not showering, the alternative is frowned upon.
When I was diagnosed, my doctor said it usually takes 4-5 years of prescription and supplement trials for an MCAS patient to discover their optimal treatment plan. Every patient’s response is different, which compounds the frustration and isolation.
This is what a good day looks like.
This is the point where I have to remind people even the best treatment won’t make me normal. It’s okay; I made peace with this reality in kindergarten.
My goal is a more stable, comfortable quality of life. I try to remind myself that progress is not linear, but patience is hard. I worry about my family and friends losing patience too. And then, I remind myself not to worry. Because, for all we know, the zombie apocalypse could happen tomorrow.
So, what accomplishments are you celebrating this month?