Last Thursday I saw my neurologist. While I have had a LOT of improvement with many symptoms, and some of the lesions have become less inflamed- they have not gone away and are unlikely to fully resolve.
That was that. It was confirmed I am at my new "baseline", and now is the time to figure out my next step.
My neurologist acknowledged my knack for persevering, and staying as positive as I am through all of this. Truly, the news that I may not recover more made me pretty devastated, because my personal expectations are high. I anticipated (hoped for) a lot more recovery by now and am grasping at anything that makes me feel slightly more "normal", or gives me any sense of accomplishment.
What ARE lesions, anyway?
"In multiple sclerosis (MS), the body mistakenly attacks the protective layer around the nerves in the brain and spinal cord (also known as myelin). These damaged areas are called plaques or lesions. ... However, lesions tend to happen more in people with relapsing MS."
This is what my brain MRI looked like in July 2019:
What does my MRI look like, now?
The latest scan was done without IV contrast medium (Gadolinium) and does not show all the inflammation, but you can see many of the current active lesions.
So, what does it all mean?
Much of the damage has turned into scar tissue. This means that while I still may recover slightly over time, it is unlikely that symptoms of this episode will fully disappear.
Something you may notice quite quickly is that I am very upfront and honest, possibly to a bit of a fault. My joke has always been that "I don't lie, my memory is too poor for that." I'm being entirely honest when I say that the past 6 months have really, really sucked.
What have my days or weeks looked like lately?
Rest. Rest. Appointment. Rest.
Sprinkle on a little bit of sadness and a lot of self defeat, but also pepper in moments of reflection, triumph, and celebration.
Hard lesson I have had to accept...
The resting often does not feel conducive to productivity, but without taking these breaks we surely break down. Sometimes when things aren't going smoothly with life, health, love or business, we can be extra hard on ourselves and less likely to make time for self care. Not making time for the things that bring mental peace or physical comfort, is the fastest way to absolutely crush your productivity.
It is very important to remember that taking breaks is not the same as failing, or falling off track.
Self care is different for everyone. It doesn't have to be fancy face masks, and sparkling bath bombs from Lush. Self care can also be as simple as playing Super Mario bros. for half an hour (or 3 days straight, which I may have done while recovering from a flu). Do something to let your mind stop beating itself up, and just relax!
January 18, 2008
I always acknowledge this day, and reflect on things I love and am grateful for.
Family (#1, always.)
Oh, bother. Perhaps you can recall from my blog about the massive relapse of July 2019- Symptoms began in my right ear.
Looking back at my track record with MS, it has been normal for me to have a resurgence of symptoms and disease activity 4-5 months after big relapses, like aftershock of my own little earthquakes.
Why on earth would I be intubated in order to have an MRI, in the first place?
Unfortunately the constant sickness would not stop. I could not move out of this position without throwing up repeatedly. No other tilting of my head. No sitting fully upright. No laying down.
They needed me to be able to lay down flat for 45 mins in an MRI machine, to rule out the chance that I was having a stroke.
The vertigo was too intense while coherent, so they had to put me under and intubate me, as I could not breath on my own during this procedure.
Fortunately the stroke was ruled out!
You can imagine how much pain I was in after muscles started to lock in this position. My sweetheart, Nathan, was always on top of making sure I was as comfortable as possible. This man is such an incredible blessing in my life.
Here he is, wrapping up my feet with warm blankets while I took a nap. 5-10 minutes at a time, upright as pictured, was all I was able to manage for 11 days.
In spring 2019, before my summer of hell, I had glorious plans of selling this print on T-shirts at my favourite local nude beach.
Sure, dreams of hustling clothing on a clothing-optional beach sounds a little ironic. I know. I get it.
Here's the deal.
My mind also goes to all sorts of things that are now so truly impersonal.
You can see a doctor via Skype. You can realign your teeth without ever having been to a dentist. You can order evvverything on Amazon, for "cheaper". Instagram even has A.I. "influencers". Think about that. We're at a point where robots are telling us which lipstick to wear?
It's a strange world.