Sometimes, hopefully as someone who is not an over-sharer, I don’t know what to post on social media. And then sometimes, when I share the “real life” hard stuff, I get notes from people I don’t even know, thanking me for sharing it. So… today some sharing.
I had two long ER trips in the last 9 days. Days with throat swelling and chest pains, and a BP reading of 148/108 being something the doctors celebrated with me. (MUCH better than 199/130).
An evening spent sitting at the ER parking lot to test out a new mast cell stabilizing med, per my primary care’s orders, in case it caused anaphylaxis. Because I had reacted twice to things given to me in the ER. (the new med seemed to be a success so far! Prayers appreciated!)
Tracking the growing in of my grey, as I have decided to let nature have it’s way with me. Not everyone gets to grow old enough to be grey. I may play with fun highlights still, but I don’t want to dread having the sparkly white and silver show. It’s part of me!
I managed to teach almost all my students this week! (My daughter subbed for me for a few when I was at the hospital. I wore real pants for 2 1/2 days. Now I’m back to leggings. I’m toast. Hyperextended my knee due to the mcas flare this week. Just to keep it extra fun!
So now I head to Portland to pick up another compounded medication to the tune of $$$ because that’s my only option. I test it out in the parking lot outside the ER again. And my long suffering husband will sit and watch NCIS on my phone with me while I ride out the first hour of the med. (He’ll also drive me to Portland to pick up the med. We have the ability to turn just about anything into a date! lol)
Just a week in the life of MCAS.
I don’t share for sympathy. But more to help tell the stories of those like me, who can find it hard to put it into words. Who fear being seen as begging for attention, or complaining, or worse.
This is our life. We find our joy-moments. We have days when we are afraid to eat because we don’t want another day spent with an epi-pen in hand just in case. Or several hours of a day lost at the ER again. And then we nap off the benedryl and and find reasons to laugh with our kids. Right now there are a couple tiktok stations and some youtubes I go to to keep me laughing. 😉
I am tired, and emotional, and encouraged, and a little nervous with another med trial ahead of me. I am thankful for my new team who care to find a way to get up to speed with MCAS, hEDS, and POTS (or in my case, hyper-pots)
And I am thinking of all those like me out there. I get it. It’s ok to tell your story. Someone like me will see it, and send you virtual hugs. <3 We can do this!