Life Lesions: How Splendid!

It’s not a typo, I absolutely meant to type lesions. Glorious, glorious central nervous system lesions. And I’m a little mad about it.

I had a phone appointment with my new neurologist from the MS clinic yesterday. They were really nice but that didn’t stop the hyperventilating panic attack once I hung up.

I already knew about the brain lesion on my pons. My favourite neurologist called to let me know about it right after the March MRI. But the March MRI was the first time I’d ever had my spinal cord viewed and that report took longer to come in.

I didn’t expect to hear that I have many lesions all over my brain. I took the news like a champ, though!

What set me off was hearing that I have 18 lesions on my spinal cord, 13 of which are on my cervical spine.

The neurologist said I don’t have ‘large lesions, but they’re numerous and they’re in bad places.’

Well, isn’t that just splendid.

Luckily I’ve spent most of my life gritting my teeth and saying, “Great!”

I phoned my husband at work after because he’s my human equivalent of Ativan but after that, my plan was to go upstairs and take my ‘meltdown meds’ that my doctor has prescribed but I’ve used only twice.

In the last six months, I’ve reached a point where I don’t feel like white-knuckling through emotional upheaval and despair and anxiety anymore. I’ve felt all the feelings. I’ve hidden all the feelings, I’ve ignored them, processed them, explored them, sat with them, and breathed through them. Now I’m just going to medicate them when necessary because I’ve paid all the emotional dues. I’m done with ‘just wait for it to pass’ when my brain and cPTSD take me to a godawful dark place. I’m a very smart cookie (that’s probably part of my melancholic, dysthymic problems) and I have tried all the things to pull myself out of soul-crushing depression or feelings and none of it really works that well so I’ve done a lot of white-knuckling. So now?

Better living through pharmacology!

Luckily, I don’t go into the depths of despair very often but the past 6 months? I’ve had a few visits to Despairville but seriously, would that surprise anyone? My life isn’t great right now and the last year has been very challenging. The last 6 months have been hell. It’s a lot to process and pivot and adjust and stay positive. I’m tired.

I went upstairs but before I took the two different pills that I can take to moderate when my emotions are dragging me onto the Crazy Train, I decided to jump in the shower and wash my hair for the first time this week.

(Before you judge, I have almost waist-length, dry and wavy hair. I wash it rarely and it does just fine so no need to be concerned about my hygiene.)

I felt much better after I got out of the shower, so I didn’t take any meds. My plan was to just forget about my To Do list (which wasn’t extensive, I mean, we’re in a pandemic after all) and cuddle up on the couch with my fuzzy blanket and just relax mindlessly in front of the TV.

I’d left my phone downstairs but I heard it ringing when I came down the stairs. I carefully made my way down the stairs to my phone, but my left foot got flipped over and I stumbled. (Because…lesions.) Unfortunately, I stumbled on our large entryway rug which is quite textured. I removed a lot of skin from my left foot and ripped off half a toe-nail.

It’s fine, I’m fine, this is FINE.

It was the neurologist again. They’d consulted with the other neurologist (the most in charge neurologist) and based on what they were seeing on the MRI and the ‘severity of this relapse’ they want me to go on disease-modifying drugs. One option is daily injections. I could opt to take pills twice a day. There’s even an infusion of immunosuppressant that I could get twice a year.

Being an immuno-suppressed Paramedic living with another Paramedic sounds like just the thing, right? The one option that I might consider is about $20, 000 a year but the doctor assured me that my benefits will cover the bulk of that.

Oh, my benefits I had to cancel months ago, because Jordan Smoliak from Astral Harvest didn’t pay his invoice for his 2019 Paramedics and this ruined me financially when I used every cent I had to make sure the people who’d given of their time and effort and energy to work at Astral got paid? Those benefits?

Splendid!

The MS clinic is sending me information and they’re referring me to some resources and then we hung up and I really lost it. Too much information and bad news and not enough emotional bandwidth to handle it appropriately.

So I hauled myself slowly back up the stairs, took my Meltdown Meds, and resumed my plan of lying on the couch and staring mindlessly at the television. The tightly-wound anxiety of “what’s going to happen to me” and “my life is damaged beyond repair and I don’t know how I’m going to recover from any of it,” mellowed into a not really pleasant numbness. At that point, I tried to remind myself that this too would pass and I won’t feel so awful forever.

Today is better. I sat outside on the deck for a bit when I got up, listening to the birds before everyone else got up and started driving super-loud “I’m a good ol’ country boy” trucks up and down the road behind my house. I went for a drive with my husband to the city and the big dog, and we went for a walk. My left knee hurts from my stumble yesterday, (lordt I hate the entire left side of my body, constant pain in the ass and most other parts, too) but I did two walks today without needing my cane. The first, I took the dog for a walk outside while my husband dropped something off for repair and the second, we walked around the recreational pond in the town we live in. They weren’t fast walks, but they were pleasant.

I wish this post had some super-enlightened takeaway, but it really doesn’t. Surprise!

I have a bunch of lesions on my brain and spinal cord, the majority of which are high on the cord. (That’s bad.) I don’t know how to afford to manage this disease before it cripples me further. We definitely can’t afford me to be crippled further. We can’t afford the level of disability I live with now. There’s no answer as to how much farther I might recover, if at all.

I asked the neurologist flat out if I can recover from the damage the lesions have caused if I keep working hard, or if I need to accept that this is my life now. The answer was, “Well it’s possible to show improvement for up to a year, and sometimes even past a year. It’s a slow process. But it’s also possible that the deficits will be permanent.”

Man, I love vague, non-answers. I love uncertainty, and grey areas. Ask anyone who knows me. Ask anyone with PTSD or anxiety what their uncertainty tolerance is. It’s not our best trait.

And it’s nothing against my neurologists. It’s just the nature of MS. Nobody really knows, it’s poorly understood, and it’s unpredictable and different for everyone. It’s not my doctors’ fault that they don’t have definitive answers for me.

That doesn’t change the fact that I’m living my personal hell right now.

I’m trying to find grace and gratitude. I’m grateful for my husband because I couldn’t ask for a better human to partner with. I just wish I could once again be more of a partner instead of such a burden. I can’t help but be grateful that the pandemic didn’t happen when I was living with a twisted monster bent on making every aspect of my life as miserable as possible. I’m grateful that I’m safe at home, and that this home actually is a safe place for me to be. I’m grateful for friends. Both asked what I needed and offered to come sit in my driveway just to be somewhat present with me, which was very kind of them.

It might not be much, but it’s all I’ve got for now. And hey, at least I don’t have a brain tumour, right?

https://www.webmd.com/multiple-sclerosis/ss/slideshow-multiple-sclerosis-overview