Two Years Later: Immune System Suppression in T-8

I start immunosuppression next week. Do I love the idea of suppressing my immune system during a pandemic? Nope.

(And we are still in a pandemic, just to be clear.)

I also don’t love the idea of my overzealous immune system snacking on my brain and spinal cord.

Like I told someone the other day, all the choices are shitty in some way. I picked what I think is the least shittiest.

My best chance to protect my brain and spinal cord is to bitch-slap my immune system into submission. Then I just have to live like most of us did in the spring of 2020: copious hand washing, social distancing, and stay the f**k home.

From what I understand, the infusion leaves me pretty much lacking an immune system the first month after each one. That’s okay because I’m lucky enough that I have the option to stay home. After a month or so, my T cells will rebound a bit. That gives me back some immune function but my B cells stay obliterated. I go for all-day infusions every six months, so I can only assume my B cells start to rally about then.

My immune system: I think we’re going to tackle that central nervous system today.

Ocrevus infusion:

A few think it’s a bit weird that I’m excited. Yes, there will be side effects. Yes, I might feel like garbage a bit. But there’s a few things that make me excited to get on with this. Some people don’t understand why I’m not more excited, because they thought it was like chemotherapy. Sucks initially, but after that I’m cured, right? Not so much.

MS isn’t cured, it’s managed.

I don’t sleep well, partly because I woke up broken two years ago with no warning. (Or at least, no warning that I recognized as something going wrong.) I’m afraid every night that I might wake up unable to see or walk anymore. It doesn’t make it easy to fall asleep. It’s a delightful catch-22. Not sleeping well is really bad for MS and MS is really bad for sleeping well.

After that fateful day, I watched every domino fall over the last two years. Everything that I valued about myself and the life that I’d built through hard work, sacrifice, and stubbornness…all gone. Health, physical aptitude, dancing, fitness, hiking…my business, my income, my ability to ever work on ambulance again, everything gone in the blink of an eye.

The last two years, some people were horrible to me. A few perfect strangers behaved in ways that I describe as abusive, for no other reason than I’m visibly disabled.

(And save me the platitudes of ignore people like that, it says more about them than you, don’t take it personally, etc. When a stranger, in front of a group of people, screams at you that you’re a ‘stupid fucking bitch’ because you can’t cross the street fast enough to please them, you don’t smile and say hurt people hurt people, be blessed. It’ll feel really personal, so cut the crap, Ghandi.)

I’m sometimes treated like I’m somehow cognitively impaired because I use a cane. A nurse practitioner even tried to take my driver’s license recently. I have no impairments or deficits that affect my ability to drive. I have a class 4 license, advanced driver training, and a completely clean abstract. So why should I not be allowed to drive to the grocery store, you ask? Because I have a stiff left leg so one day, my so far unaffected right leg might spontaneously shoot out and jam onto the gas peddle. (I’m completely serious. That was her major concern.)

For two years, I’ve lived my worst nightmare. I lost my independence, control over my own existence, my confidence, my career, and my financial stability.

I’m often treated like an errant child who needs ‘help’ making good decisions because I’m apparently incapable. I enjoy when people condescend to me. The times perfect strangers accosted me is few, but scarring. I learned a lot the last couple years. I learned the world isn’t as inclusive as we like to think. Any type of disability, no matter how minor, makes life twice as hard as it is for the able-bodied. I learned many people think folks with disabilities or health conditions should not exist, period. If we do, we should keep ourselves at home so others don’t have to deal with us. Lots of people think we have some nerve to think the world should accommodate us in anyway.

I’ve been really vulnerable the last couple years. Not only because of necessity, but I also figured I’d try it out: being honest about my feelings, crying when I needed to cry, asking for help, being open about my challenges, feeling my feelings.

Part of the vulnerability was that I was afraid, and meek. It doesn’t help that sometimes instead of my fight-or-flight system taking over, I get a freeze response. Over the last 24 months, when people got in my face in an aggressive manner, I either froze or I folded because I no longer felt confident standing up for myself.

My baseline isn’t meek, and I don’t want to spend one more minute putting up with shit and abuse from anyone in this lifetime.

Try Jesus, don’t try me.

Two years of disability, Covid restrictions, and spending so much time alone while my husband worked to support the two of us left me with tons of time to ruminate, reflect on, and relive. My brain breaking in 2019 destroyed decades of therapy. I’ve been in mental health crisis for two years (and haha to those of you snorting and thinking, only two years?). Every trauma I ever worked through was back in intrusive, psyche-breaking ways.

Starting over is fun. It’s all I do.

My life has not been easy but these last two years have been the absolute worst. The few who’ve known me a very long time and know me really well, know what a big statement that is.

I haven’t been in charge of my life the last two years, MS has.

I’m ready to put a stop to that shit. If it takes a 6.5 hour infusion of potent immune suppressing drugs every six months until I’m a senior citizen, I’ll show them where my best veins are.

Another reason I’m happy someone will drip this drug into my veins twice a year is that many people have some mobility improvements after going on this drug.

(Frankly, the docs should have led with that tidbit a year and a half ago.)

It seems that once the immune system is under control from attacking the brain and spinal cord, some repair can occur. Right now, my immune system damages my central nervous system faster than my body can try to repair it.

I can’t bank on improvement because it’s not guaranteed and I already wrote about how painful hope is (check that out here) but I’m a tiny bit optimistic that maybe this two years of anxious hell is coming to an end and yet another new phase will start. Maybe even a good one.

I plan on going to ground for the winter.

Not because I’m expecting that the infusion (2 in November to get started) is going to make me feel terrible or that I’m likely to die from the common cold, but because I’m tired. The last two years…phew. I just have nothing left in my tank, emotionally or mentally.

I know some people might think that since the fall of 2019, I’ve been plenty relaxed. I’ve been able to mostly stay home. Any work I’ve done hasn’t been terribly stressful, and I’ve only worked 5 days in the last two years anyway. Between Covid, my broken brain, the financial mess, living in redneck hell in the Alabama of Canada, and the frustration that I can’t work as long as gatherings of people aren’t allowed…there’s no end in sight and that’s excruciating. As humans, I think we can get through anything if we know there’s an endpoint but so far Covid doesn’t have a definitive end point. MS has precisely zero endpoint, ever.

At least now there’s an end to one aspect of this MS crap. No more trouble sleeping because I don’t know where the next lesions are going to be and what they’re going to take from me next.

My intention for this winter is fuzzy blankets, great food, books, and movies. I might publish my fourth book. Maybe I won’t. I might just live in my giant fuzzy hoodie without pants. Maybe I’ll eat popcorn for dinner two nights a week and take frequent naps and accomplish nothing more than that. Whatever I choose to do, or not do, that makes me comfortable and content, is going to be fine.

People have asked if I want anything for my birthday (smack dab between my two infusions) or Christmas.

I told them yes, I want to be left the f**k alone.

Not because I feel terribly depressed and I’m isolating myself and need to be checked on. As I told the husband, I just need some time to get my feet back under me. (For the 87th time in 42 years, but it’s cool.)

My benefits initially denied my prescription for Ocrevus which was incredibly stressful because I don’t even make $60,000 a year now , let alone be able to spend that on medications annually. My neurologist and his team got that handled, but it was another emotional kick in the face to deal with for awhile. The way that nurse practitioner treated and spoke to me was traumatizing and I’m still losing sleep over it a month later. She told Registries an incorrect diagnosis, and now they’re up my ass. (Yes, I can easily pass more road tests, driver’s medicals, and review boards but the point is I shouldn’t have to and it all comes out of my pocket, which is pretty empty right now.) In the past year, I’ve lost three pets, my last cat and my beloved giant dog suddenly within a month of each other a few months ago.

In the most stressful moments, it’s been in the back of my head the last six months that nothing matters. No matter how hard I’ve worked to rebuild my life, everything I’ve done to try and improve my physical capabilities, there’s always some asshole or organization happy to make my life even more difficult, some new obstacle or shitty thing to overcome.

Everything is just so hard, all the time, and I’m tired.

I’ve lain awake some nights wondering why I even bother. Would life be easier if I just parked myself on the couch all day, every day and quit trying for better? I’m having a hard time interacting with the human race, as in, I don’t want to. I’m trying to figure out who I am now and how I move forward. How do I live with the MS nightmare I don’t get to wake up from? What am I supposed to do with the rest of my life? What do I even want for the rest of my life?

Right now I can’t think of much that I want, other than walking normally again (which isn’t likely to happen no matter how determined I am), and that’s weird for me. Never in my life, no matter how down or stressed, have I ever been without dreams, plans, goals. I don’t know if it’s even a bad thing.

Maybe I just want to be for the first time in my life.

Before anyone asks, the last two years have not been me just ‘being’. It’s been MRIs, neurologists, insurance companies, medical appointments, diagnostics, lab work, ECGs, shots, medication adjustments, physiotherapy, (oh my lawrd so much physiotherapy, every day) neuro rehab, fear, stress, anxiety, a lot of loss, and a lot of grief in addition to everything else going on in the world that we’re all dealing with and trying to process.

Basically, I’d like to bring an end to my two year long existential crisis. In addition to the brain chemistry ‘helper’ meds that I take daily, I think I just need to shut myself away for the winter to be unbothered by everything and everyone. It’s the perfect time. I don’t have anywhere to be, the stress of ‘how long until I’m pissing myself in a wheelchair’ will be dramatically reduced, I hate short days and cold weather anyway, it’s going to be flu season in addition to Covid, and I’m sending my immune system into hibernation.

Yeah, I think I’ll just stay in and work through my watch list while eating baked brie and drinking red wine. I’ll emerge in February to look for my shadow.

Maybe.