For my first post in this area, I want to first start off by saying I know that there’s a considerable number of people with mastocytosis that unfortunately can’t count on emerg as an option more often than not.
The smells, the medication, the lights, the adrenaline and stress. I get it!
But for another and likely smaller portion of some of us, it is an option and one that we tend to count on heavily in times of bad flares and reactions.
Because of my high reaction levels to hormones and chemicals, my period is a true living hell every month.
Not only is my nearest ER very familiar with me and my disease, they are now very familiar with my cycle.
Same goes for my hematologist. She said last week she’d like to see me around my period, followed by a “in about 2 weeks right?”
Then we looked at each other and burst out laughing at the ridiculousness of a busy specialist knowing a patients menstrual cycle.
That’s a glimpse into how twilight zone mastocytosis is.
Fighting for your life every two and a half weeks because your body is doing something you don’t even need.
Becauae you’re even more allergic to the pregnancy hormone, therefore reproducing is not an option.
So for me, I’m now a different kind of “frequent flyer.” I have to behave because I’ll be there again soon and don’t want to piss any one off.
Even most of the paramedics in my neighbourhood know who I am. The ER is my second home. For now. I like to believe that will change 🙂
This video is not me, but this is generally how it goes.