As I sit here, propped up on a couch, typing into my Notes on my phone with my money thumb (my left thumb that does all the typing), I realized I haven’t given a health rundown in about a year!

In my mind, sharing things like this is not a big deal for me, I guess because it does help people. I’m shocked at the responses from people telling me I’ve helped them in some way—it feels pretty good! So in honor of keeping those good feelings rolling, let’s get to the rundown:

Where for art thou Taz?

Yes. You read that right. The devastating and destructive Tasmanian devil, Taz—for the most part—is gone. As of October 2019 my episodes drastically reduced. We’re talking going from 1-3 times per day to 2-3 times per month! For more than 2 years my life was taken over by this beast; oooofda is putting it lightly.

At the end of summer, I started an anti-depressant with some neuro properties, and after a month I started seeing results. Like I didn’t feel the usual electric shocks and the Taz thing, which I was terrified everyday for about two months to actually celebrate not having and start living!

Everyday I’m symptomin’

If you read this like Rick Ross intended in his breakout hit “Everyday I’m Hustlin’”, then you read it right! Now that Taz has mostly left the building, my disability is front and center as something I navigate everyday. When I say disability, I’m talking about my brainstem cavernoma or Cavernous Angioma (CCM for short) which caused Hypertrophic Olivary Degeneration (HOD)—likely most of this stuff is HOD-related. So my entire right side is slow on the uptake and uncoordinated which makes writing close to impossible and walking a feat, no pun intended.

I also wear red glasses because of light sensitivity and a patch to keep me grounded since my eye moves and twitches without permission. Another thing that moves without my permission is my throat and palate. It makes breathing hard sometimes, especially when I’m flat. Speaking of things that make breathing hard, since the brainstem controls heart rate, I have issues with mine. I saw the big honcho cardiologist who says it’s similar to POTS, but because of the brain stuff that caused it, it’s a little different. Picture this: rollating from the living room to the bathroom, and dealing with heart rate in the 140’s, a tight chest and trouble catching my breath. Not to mention a headache, and dizziness as it goes up and down. Yeah, it’s a lot.

There are smaller, more random symptoms that I’m already bored of talking about, so I won’t mention them!

Too cool for pool...sike!

What the what is the good news in all of this? Well, without my BFF Taz, most days I feel ok enough to do stuff! This is a big win since, as I may have mentioned before, Taz took over my life for just over two years.

I thought to myself back in December 2019, “wow if I really don’t have Taz as much, I want to do things that bring me joy everyday!” And that folks I did, err am doing!

Two lovely days a week my mom and I are in the pool at Courage Kenny Golden Valley allinahealth.org/locations/. I’m enrolled in a Neuro Splash class where we work hard and have a great time. My mom acts as my assistant when walking or doing other challenging things. I really love it! It’s totally a pain in the ass to get ready, drive there, get ready for the pool, get a leg weight, decide if today you’ll be using the water wheelchair or conquering the stairs, participating in class, getting out, getting changed and driving home...whew. My mom said it’s like taking me to swimming lessons as a four year old. lol, I get it.

Anyway, I’m also enrolled in an online Watercolor for Rebels class that I love! I can see myself improving and thus having much more fun with the daunting watercolor medium. Josie Lewis is my teacher, and I highly recommend her! www.josielewis.com/

Maybe the best part about not having to deal with Taz nearly as much is my newfound ability to go upstairs to my parents condo and have dinner with them, almost every night! This is such a win because last year I was able to only 5 times total! I’ve been doing it for months now and all parties are happy about it!

All in all, life is what it is. It’s hard but so so good!

xoxo,

elo

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