Dear Immune System: No More Chances

I’m about to show my overzealous and melodramatic immune system who’s boss.

I also had a medication adjustment and I’m feeling much more like myself for the first time in ages. There are, of course, days when I’m not feeling great and my demeanour is a bit more subdued. Mostly though, it’s been great to get my emotional feet back under me after a somewhat challenging couple of years.

I kind of feel like I can adjust to my new normal. It only took a year and a half, but hey. I’m stubborn like that.

I started feeling like I do still have some options. Maybe it’s possible to rebuild my main business? Could I transition to just being a supervisor instead of actively paramedic-ing? Can I be a disabled paramedic? I’ll never work on an ambulance again, but I’m still capable of patient care. I just can’t go walking all over hell’s half acre hauling heavy equipment anymore but that’s why I work with younger, fitter folks. But do I even want to do that, or do I transition into something else completely?

Running a business is stressful and maybe I don’t even want to do it anymore. Maybe it’s time to let everything from my old life go. I don’t know yet. There’s too many moving parts and variables right now for any decision making. I have other priorities for the moment, but it’s good to at least feel like I have some choices.

I still don’t know how my future is going to look or even how I want it to look, but the takeaway here is I feel like I at least have one.

I feel a bit sassy again.

Luckily I started to feel more like my slightly feisty self again before I started the medical marathon of prepping for an IV infusion that will hopefully stop my immune system from snacking on my brain stem.

See, being a patient makes me irritable AF. Being a patient is really hard for me. I have a lot of programming that tells me suck it up, not whine, (ha but starting a blog is ok!) nobody cares about my issues, and other people have way bigger problems, etc. I have my own medical expertise and access to a lot of supplies and medications because of my company, so there’s plenty I can handle myself but if I need more healthcare, I get anxious and short-tempered.

I’ve had enough therapy to know it’s feeling a lack of control. I’m a terrible patient on so many levels for so many reasons.

I snarl at healthcare folks if they say something I think is dumb. I get really snippy if I feel dismissed or condescended to. It’s really no excuse for biting someone’s head off. I need to be better with that.

It’s been three weeks without a snark at anyone, and all I’ve done in that time is interact with healthcare folks.

Thanks, high-dose anti-depressants! With enough neurotransmitter assistance, I’m not permanently depressed despite the scary location of a new lesion.

Better living through pharmaceuticals!

There’s an exhaustive list of things I have to do before I can start this IV medication, which months ago would have put me in a terrible emotional state of overwhelm and despair.

I’ve had so much blood work I’ve got to be anemic by now. I’ve had urinalysis, ECGs, and I need a crap load of vaccines. I hate IM injections and vaccines tend to hit me pretty hard. Maybe it’s an auto-immune thing? I’m not sure if getting vaccines ramps up my immune system in a scary way or maybe distracts it from my juicy, delicious brain stem? Regardless, the neurologist sent me a list of mandatory vaccines so I got on it.

I should have been losing my few remaining marbles but I wasn’t.

Months ago, the whirlwind of appointments, injections, blood tests, paperwork, financial aid applications, etc would have made me stressed out, anxious, overwhelmed, and short-tempered.

I accept that I need a ‘big gun’ intervention, even though it’s a little disconcerting to know I’m going to infuse a medication into my veins for hours. Before I even do that, I need a battery of tests to make sure I’m healthy enough to subject my body and internal organs to it.

I need other medications just prior to the infusion to hopefully manage any infusion reactions and how the med might make me feel. It’s disconcerting that I’m given medications prior to a medication, so I can hopefully tolerate the medication.

I’m not thinking about it too much because it’s a few months away. I’ve learned that working myself up into an anxious mess months before a stressful situation occurs, doesn’t do me a damn bit of good. I suspect it’s also bad for my beleaguered brain.

I’m trying to take things one day and one task at time.

I’ll stress about various dumpster fires when I’m actually facing flames.

I’ve tried lifestyle changes and ‘light’ medical interventions to see if my histrionic immune system would pull itself together and leave my central nervous system alone. It’s really left me no choice but to nuke it into submission. I gave it lots of chances. I asked nicely.

Nothing really worked, so I guess I have to remove my immune system’s ability to make bad decisions. My B cells are soooooo grounded.

This is my reality now. I have to do what it takes to save the rest of my central nervous system, and drowning in misery over it isn’t going to help me or my brain stem. I need to do these things, so I choose to just do them without all the feelies. I spent the last 20 months feeling allllll my feelies and while that’s not a bad thing, because I spent pretty much my entire life without feeling my feelings, I think I’m mostly done now.

Now it’s time to be analytical and unemotional about things I have to do.

Everything about going on this med sucks. It sucks even more that I’m permanently disabled. More sucky than going on this ‘big gun’ medication is that I go to bed most nights scared I’m going to wake up blind or without the ability to walk.

It doesn’t promote restful sleep, and staying well-rested seems to be pretty important for this stupid disease.

I’m choosing which sucky I’d rather live with.

I might feel really stressed closer to when I can finally start the drug sometime this fall. There’s a chance I’ll weep for the entire four to six hour infusion because how is this my life? But I think I’ll feel mostly relief because if it works, my immune system won’t be able to snack on my brain and spinal cord anymore. That means I likely won’t wake up blind and I won’t experience any new or worsening disabilities. Which is great, because my current neuro deficits are more than enough to keep me plenty challenged for the rest of my life.

First, I get my immune system under control while I still have some brain stem left. Then maybe I resurrect my plan for world domination since my original plan was rudely interrupted at the end of 2019. Or maybe I turn into a super chill chick retired at 42 who eats cheese and reads books.

Just kidding.

I could do that, yes. But if you’ve met me, you know there’s never any chill involved.