Archive post six: A new chapter
Originally posted on August 24, 2017 on private blog edited for myinvisiblebff.com.
There are so many things to say--hopefully this is easy to read.
Shout out time!
I want to give a shout to all my therapy peeps, ALL of them. First, I went to U of M Fairview Rehab vestibular PT, OT, and Speech and saw some AMAZING therapists. You all listened, were interested in learning about my case, and tailored my work to me. You taught me how to modify and adapt to my environment despite my deficits, encouraged and helped me make/meet goals, and gave me confidence in ADA & general health advocacy. I will forever appreciate you all!! I even made a new bestie from the center who is an incredible friend and who I met all thanks to PT. It did help too that we are the same age because peeps at vascular rehab, are generally a bit older. *She says sarcastically.
I am now going to Courage Kenny for rehab. I just 'graduated' from pool therapy and am doing workouts in the adaptive gym with a vestibular PT and will be able to get a pool/gym pass soon. I can't say enough how much of a game-changer pool therapy is and how amazing the vibe there is. Most patients there are doing some incredible things, despite some super shitty diagnoses; it's inspiring as heck.
My work schedule
So I haven't taught since the end of the school year in 2016, and I don't know when I'll be back. BUT to keep myself purposefully moving forward I decided to keep my work schedule going, after summer break of course! (We've been going up north to the cabin once a month and it's been really good, for all of us!)
I don't know if you've heard it before, but people with chronic illnesses (which I identify with) treat rehab, managing symptoms, and going to appointments like their job. For me that means doing all that, and combining some extras too. Social time is necessary along with bloggin' & technology time, but I get exhausted with everything so hopefully I can still find that balance.
Pool/gym and adaptive Thai Chi, as well as speech therapy, talk therapy, and managing my symptoms will keep me so busy, but long-term I want to volunteer at my school so badly. I miss my peeps like crazy, but I know this is a goal to keep in the back of my CCM-laden mind.
A new working hypothesis
*Mind. Blown.* So I went to Mayo Clinic yesterday and finally saw a neurologist.
Background: Waaaay back at the beginning of the show, my neurosurgeons (my first, second, AND third opinions) all said I didn't need to see a neurologist because I have an inoperable case anyway, and with CCMs your symptoms will likely improve at some point, an average of 7 months or so (it's the brain so numbers are all over the place). So, I was talking with my original roomies and it was like an "aha!" moment. WTF it's nearly been a year, so why am I not seeing a neurologist?
Reader's Digest version: I saw a neurologist who specializes in CCMs (and is connected with the Angioma Alliance) so most of her patients are CCM patients and travel all over to see her. I already knew my case was complicated, but she said it's rare for her to be surprised from images and that she'd never seen CCM's like mine. (Every other radiologist/neurosurgeon who has looked at them has said that too, so that's somethin'.)
Overall she was such a good listener, and seemed super interested in my speech and symptoms.
SOOOOooo...Long story short, present on my MRI scans is a hypertrophic olivary degeneration (HOD). It's super rare and develops after trauma/bleeding to the specific area on the Pons, and is nerve degeneration and it explains almost all of my symptoms. If you'd like to read more Google it, but warning it's super medical lingo-y. Like almost 100% scholarly articles, and while I get the gist (thanks grad school), they don't say much more than to not intervene and patients present with a plethora of neurological symptoms. Nothing new there I guess.
Basically, and I mean basically, because of my hemorrhage, the Olive in the brainstem got disturbed and caused even more symptoms/nerve damage/cognitive stuff. The doctor showed us that the olivary degeneration showed up on my scans as early as September 2016, and it's possible (probable?) that my symptoms--that basically fluctuate and cycle within a day or two or a week, and haven't improved (that's the important part, as much as I wanted them to)--are due to a combination of the CCM and the HOD (with most it being due to HOD).
Whew! That was a lot of information, but what does it all mean Basil?!
1) I'm riding a validation-high right now. It's so messed up but this "hypertrophic olivary degeneration" is giving me life. Super weird since it's defo not great news considering it's so rare there is no data on whether I'll get worse, stay the same, or improve some of my deficits. I've struggled for so long with comparing myself to other CCM brainstem peeps: feeling I should be better, or I wasn't working hard enough, or I was subconsciously faking it, or I was crazy, or being jealous of not being able to have surgery...so for me, this is a really big deal.
2) It doesn't change a dang thing. Treatment for HOD is time and therapy (same as my CCM path since I can't have surgery) and for SURE no surgery because the olive is one of the central nerve bodies for movement and cognition. So, it's in a way not that much different than before. (But for me, it's BIG--see #1)
The 'new chapter' metaphor
So I'm really low on energy now and need to wrap up. I just want to make sure your takeaway from this is to know how happy I am to keep looking forward, staying present, and embracing and sending love to my deficits and symptoms. Because guess what? Moving forward and connecting with yourself is a helluva lot easier when your new "normal" makes sense. It's not ideal (read: SUCKS), but it makes sense.
