Tag: uctd

Call me Ms. Pac-Man

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.

“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

Photo by Sei on Unsplash

Winter’s getting on my nerves, literally

Every time my lupus flares, it does so with a chef’s special, a new or worsened symptom I already had that becomes the showstopper. 2020 gave me flare a la pleurisy; 2025 is serving peripheral neuropathy. Bon appetit.

I almost made it through this winter without prednisone—almost! It’s okay, though, because it’s still another winter I’m on less steroids, another winter without chemo entirely. For me, that’s a major win. Go Benlysta!

Peripheral neuropathy is hard to manage, I’m finding. Mine presents mostly as fiery pain in my hands and feet, with tenderness in my fingertips that defies all reason, the same treatment in my toes, swelling too, and pins and needles, and coldness. It also causes balance issues. It really makes me miss amitriptyline—but not enough to die. 🙃

Since my labs are okay, I’m managing it with a course of steroids, round-the-clock Tylenol, Motrin 800, and medical cannabis, and lots of rest. I’ve also recently cut out carbs almost entirely, which weirdly has made a huge difference in my overall pain and energy levels (until winter really got going here). I’m not allergic to gluten, so I’m not sure why this works, and I’m not asking any questions, either. I’m just saying no to the carbs.

It’s frustrating because things change so fast for me, especially during the colder months. I’d just gotten into a groove, after having just gotten into another groove interrupted by renovations, and the only thing I’ve found to be true with chronic illness—especially when it’s a dynamic disability you’re dealing with—is that the game is constantly changing, and I’ve gotta be ready to trade the system I just created for myself for a whole new system. Or go into flare survival mode, a place that I simultaneously appreciate and hate.

It forces me to focus on what’s really essential. It also makes me look forward to when the flare will pass. Even pleurisy didn’t last forever; I’ll never forget the moment I realized I could take a full breath without excruciating pain. I still get twinges of chest pain, but usually only when I’ve overdone it or I’m too cold.

This will pass, too.

Photo by Girl with red hat on Unsplash

I’m on Kobo Writing Life!

This is a “pinch me” moment, for sure.

This week, I’m a guest on the Kobo Writing Life podcast! I’ve been listening to KWL for years while building my writing career, never imagining that one day I’d be listening to myself. Craziness!

Thank you so much to Rachel, Vanessa, and both the KWL and Kobo Originals teams for this incredible opportunity. I was so nervous going in, because I knew I needed to talk about mental health in the writing community, but it can be really tricky doing so. I once approached a mod in a writers’ forum about starting a thread, and she DMed, “We so need to talk about this stuff—I’ve struggled with mental health, too, even had to take a break—but we don’t talk about that here.” Well, where else are we supposed to talk about it, if not in the same chat rooms we discuss writing while flexing our substance abuse issues? 🤦🏻‍♀️

Thankfully KWL practices what they preach. Kobo truly supports authors, and I’m so grateful for them sharing their platform with me and letting me talk about this important issue.

You can listen everywhere podcasts are available.