Hi! I'm Erin, aka e-Lo, & I have an invisible BFF. She can be a LOT to handle, but...I know that's all part of the schtick.
It's the way the cookie is crumbling, if you will.
I had a pretty independent life before 'THE BLEED', dun dun dunnn! (aka CCM brainstem bleed that caused another rare brainstem incident/degeneration--HOD) Adult ELL Teacher, Master's degree, house, car, rocking online dating, blah blah blah...ok the last one wasn't super true, but you get it.
Now I'm chilling with my original roommates (ie: mom and dad) and living separately-ish (we're neighbors), and it's a good time. For real, they are rockstars and badass caregivers/advocates. I'm really lucky and blessed to have an incredible network of friends and family. Thanks for all the love, in all the ways you show it.
So...if you're interested, here are the deets, the buzz, and the mad gossip about my invisible BFF:
- I have a common but rare brain disease (I see the confusion on your face, "Who are you? Alanis Morisette?!"...stick with me) called Cerebral Cavernous Malformations or Cavernous Angiomas (CCMs or Cavs--not Cleveland--for short).
- Common because actually 1 in about 200-600 people have them (science hasn't reached a consensus on that yet). Rare because out of that number only maybe 30% of people are diagnosed and have issues.
- My BFF represents brain lesions that bleed and cause deficits.
- Everyone with CCM is different, some have one, some have 100--I have 6.
- For me, technically I have mixed vascular malformations (which means my CCMs are mixed with capillary telangectasia).
- The brainstem one is almost an inch in size (24mm, 2.4cm), and when it hemorrhaged, it also disrupted my left olivary gland causing hypertrophic olivary degeneration (HOD), because one big thing isn't enough, heh.
- For me, they've caused quite a bit of--we'll just call them "annoyances".
- Physically, I have hemi-ataxia on my right side...so basically I walk like I'm drunk and hold/pick stuff up like a toddler (same things, amirite? ha). And then there are lots of other things like constant nausea, headaches, and nerve pain.
- Mentally, I still got it on paper (or screen?), but my speech is sometimes slow and slurry, like I'm drunk, and I'm really slow at processing, like I'm drunk. Oh, and I don't drink. (Anymore...can you guess why? lol, sigh...)
- September 1st, 2016 the day that big bleed that caused all my deficits.
- After lots of swimming upstream in the cascading river of conventional medicine (read: a lot of scans, specialists, and time), we now know that most of my physical symptoms are due to HOD, even more rare than the first of these brain diagnoses.
- There's no cure for either, and the only treatment is surgery. (I'm not a candidate for it because of the location of the "bleeder" on my brainstem, and the HOD that cannot be removed.)
Phew, that was some in-depth shit. Here are some other things about me.
- Likes: art, music, plants, mindfulness, funny things, and TV (HG/HD/any kind, except for commercials, more on that below)
- Dislikes: closeminded-ness and commercials.
Fast forward to now-ish: after working my ass off in PT/OT/SLP/Cognitive rehab for many months, and going on a rollercoaster ride of new and changing symptoms...I decided to write.
Nervously, excitedly, & with grattitude: I decided to write my story in my own words share it with the world.
I write because it helps me deal. That's awesome if it helps you deal too. Or understand someone who is dealing. Or laugh (out loud or quietly) at my jokes (or...not).
So...are you ready to enter the wizarding world of...errr...the sisterhood of the tr...wait.
Nope. Never mind, just go to Blog. You'll know what to do.