“That’s a lot of alarms,” Mike said, nodding at my phone.
“I know, right? They’re for all my meds throughout the day. I feel like Ms. Pac-Man. All I do is take pills and eat fruit.”
Last month, a few days after Sandy my best friend of 22 years died, my neuromuscular specialist sat me down and told me I have dysautonomia. Basically my lupus gremlin is doing a lot of gremlin-ing and my nervous system is shot. This wasn’t really news; she suspected it from the moment we met. The big news was that my insurance won’t cover IVIg, which she thinks would be incredible for me.
As a consolation prize, I’m on dozens of medications that I take all throughout the day. It’s a lot… but they help. I’m also vindicated, because dysautonomia causes some wild issues throughout the nervous system, things that I mentioned to doctors over the years, things that were often brushed off, making me feel crazy.
The thing about being really sick and not getting answers while watching your life get stolen piece by piece is, you eventually start believing you’re crazy. I felt ashamed telling even the people closest to me about my symptoms. “I can’t make it because I’ve had diarrhea every day for years” and “My arm is semi-numb and also burning and pins and needles?” sounds like bullshit at best, insane at worst. Or maybe I’ve just been too hard on myself.
I’m practicing being more gentle with myself. I’ve been struggling for so long, without the right supports, so it might take a little while to undo all the mental and physical damage. Once the dust settles, I’m not sure what my life will look like, exactly, but I’m hopeful.
My stamina is still pretty shot, so I’m doing everything in little bursts. Even the simplest tasks take forever, and that triggers my flareup trauma a bit. On the plus side, I learned to do things in stages during previous flares, so at least I know how to do this. Now I’ve got a pharmacy worth of medications in my arsenal, and I know what’s causing these symptoms, so it’s not as scary when I almost pass out because I apparently stood up too fast/long, or take a mandatory nap because every muscle just tapped out and I go sleep right here. I also have the right team now, with referrals to more services and specialists.
Knowledge is power. I don’t have to fumble in the dark anymore. And if I see any ghosts, I just eat ’em.
In Case You Missed It…
- ElizabethBarone.com is now on its own hosting! I’m really proud of how smoothly the move went, considering I haven’t migrated a website in a while. Some content is unavailable while I update links and things, mostly because I’m slow. If you notice anything wonky, give me a shout!
- MaiettaInk.com is back (ish), baby! Because of my new hosting plan, I can relaunch my shop. Signed paperbacks, stickers, and more coming soon…
- My free reader newsletter and premium serial edition subscription are currently down, just for a bit while I get all that set up again. I believe everything should resume seamlessly… but gremlins hide in websites, so cross your fingers!
Much love,
EB