More Lesions: Today I’m Having A Pity Party

Six months ago, I started a new medication to hopefully prevent new lesions in my brain and spinal cord.

In that six months, I’ve gained almost thirty pounds. I’m frequently nauseated, dry heaving, pukey, and enjoying random and sudden bouts of explosive diarrhea. I’m nervous to eat, yet I still managed to get fat.

I mean, I know I’ve been eating some cheese for the past year and a half but I wasn’t eating it by the pound. That stuff’s expensive.

Combining explosive diarrhea with mobility issues and an inability to move quickly is a splendid combination. I essentially live in the bathroom now because I’m scared to be more than three feet away from it, ever.

I feel very sexy, by the way. My self-esteem is at an all time high and I don’t know if I’ve ever felt so attractive and capable. But I digress…

Today I’m having a pity party and you’re invited!

I gave up coffee because this medication plus coffee is just a no go for my poor gastrointestinal system.

I know. Take a moment to digest what I’ve just told you. Me…not drinking coffee. For nearly two years, I’ve had one amazing cup of coffee every morning. Only one, and I loved that cup of coffee. I also love not being blind, disabled, and incontinent so the coffee had to go while I’m on this magical, digestive system ruining medication that was going to protect my brain and spinal cord.

I’d much rather have a functional central nervous system than a gastrointestinal one so no biggie.

I accepted there would be no more coffee. I accepted weight gain, nausea, dry-heaving, and other delightful GI issues as part of the ‘Stephani’s Super Awesome New Life’ package. Because if it stopped new lesions from forming and prevented further or worsening disability, what’s thirty pounds and a couple loads of unplanned laundry and a fear of leaving my house?

I had another MRI a couple weeks ago, during the heat wave.

It was delightful. I needed a wheelchair because I was too disabled to use a cane, or to walk even with my husband’s help. Not only did I need to be in a wheelchair, I needed a perfect stranger to help undress me for the MRI and get me into the gown.

I sure wish I’d put on underwear that day.

(Probably so do they.)

I needed the MRI techs to get me out of the wheelchair and onto the MRI bed, and then back off of it and back into the wheelchair after.

Have you met me? If you have, you know how much I love people in my space, people touching me, and not being able to do things myself.

#soblessed

I have new lesions.

One of them is on an important part of my brain. Damage there is strongly linked to depression, cognitive impairment, learning challenges, fatigue, memory issues, pain, and further physical disability and balance issues.

So this disease is destroying my physical capabilities, and now it’s going to destroy my intellect and parts of my personality as well?

Splendid.

After a year and a half of never-ending great news, I don’t know how much more great news I can handle.

The lesions don’t show time stamps unfortunately, but I’m pretty sure I know when the latest bad one developed. At one point, my balance got worse, my tremor got worse, and I’m so fatigued I just want to slip into something more comfortable…

Like a coma.

I also plunged into a soul-crushing depression.

Some people who’ve known me awhile have correctly concluded I’m dysthymic, but I’m not prone to severe depressions. I get dark sometimes, but it’s not a place I live or stay in for long periods. Even when I’m experiencing a low-grade depression, I’m highly functional. I do things, start projects, do some learning, set new goals, etc. I handle all my responsibilities.

I’m a high-functioning anxious depressive! Going through some things is no excuse for not being highly productive, damn it.

A little while ago, I noticed I didn’t feel like myself anymore. Giving up isn’t something I’m known for. I’ve been in some pretty dark moods, but I tend to only wallow for a day or two before I’m back up and ready to fight, pivot, try something different, try harder, find a workaround, etc. I’m incredibly resilient and I’m really good at finding a way to overcome obstacles and hardships. Even when things really suck, I still have the belief that things are going to get better. This too shall come to pass and a crappy mindset never helped anyone, right?

That’s all gone. I think it disappeared about the same time my myelin disappeared from yet another important brain area.

It was so strange months ago to go from being someone with a really strong sense of self to not feeling like myself at all.

I’m 41 fvking years old and I suddenly don’t recognize myself, physically nor mentally. My body doesn’t work properly anymore, and neither does my mind.

I’m not myself, and that sucks because I really liked me.

Now?

She’s depressed with no fight, no fun, no joy, no hope. I barely like her, but at least I can say she sure tried to be okay.

On the one hand, I was happy to hear from the MS clinic that the location of my new lesions probably explains a whole lot of how I’ve been feeling.

On the other hand, hearing that these effects could be permanent is just another kick in the CNS.

I’m so pissed.

Mentally, Ragey Stephani feels a bit better then Depressed Stephani, but she’s infinitely more unpleasant to deal with.

I did all the things. Most of the time, I ate healthy, clean meals. I did the cardio. Weight training was my thing. I was strong. Healthy hobbies? In spades. Took the meds, thought positive thoughts. I did the physio, and the neuro rehab. Right after the flare up that ruined my life, I did yoga and ate TEN CUPS of berries and veggies every day for six months. For that time, I gave up gluten, dairy, nuts, soy, and any seeds or grains. At various points, I told myself that yeah, things are tough but it’ll be okay. I’ll beat this, because I can overcome anything.

I’m not going to beat this.

What a pointless waste of time and energy. I’m incredibly angry and now prone to telling people to fvck off and leave me alone with very little provocation. The number of people lately who expect me to jump through hoops for them is mind-boggling and rage-inducing. My life is hard enough, and you think I’m going to let you make it harder? Piss off.

For the record, I’ve seen end-stage MS. It’s horrific. I would absolutely, 100% rather be dead. Anyone who’s never seen end-stage MS who tells me that MS isn’t that bad?

I’ll smack them right in the brain stem with my good arm.

(Remember when I made a rule that if you don’t know, you don’t get to talk? You can read all about it here.)

At least I know I’m not completely crazy, feeling like I’ve dropped twenty IQ points in the last few months. I don’t have the dumb, I have lesions.

As someone from the MS clinic gently pointed out the other day, “Remember to give yourself grace. You have brain damage.”

In other great news, I need to go on a ‘big-gun’ disease modifying medication ASAP. It only costs about $60,000 a year, so no biggie. I probably have that under my couch cushions.

The hope, of course, is that this med will stop my immune system from snacking on my brain stem and other important structures.

The process to be able to start this IV medication is pretty overwhelming and exhaustive. More blood work, an ECG, (an ECG I can’t get in the town I live in but yes, I’d love to jump through another hoop and go to the city for that. I’m sure my husband loves that the rare days off he has are taken over by my never-ending medical appointments) plus trying to find a way to get the medication paid for…

Plus before we suppress my immune system, I need some other vaccines first which of course are out of my already empty pocket and I have a phobia of IM injections. I can’t start the IV infusions for months and every moment between now and my first IV infusion (in the city of course) my immune system is destroying my brain and spinal cord.

It is so fun being me right now, I can’t even.

I had some helpful healthcare provider tell me prior to my MRI that ‘we’ll need to talk about what steps you want to take for your future at some point, maybe a new career…’

Um…..

I had a career and my ‘back up plans’ aren’t possible for me anymore. You know, the careers you think of going into if you get sick of the current one? Yeah, I had lots of those because the world was my oyster and I could do anything.

That was before I had lesions. In fact, my lesions are deemed ‘innumerable.’

My future plans are cheese and binge-watching RuPaul’s Drag Race and I don’t need a life coach thanksssssssssssss. Been there, done that, not interested. And you’re probably fired.

I just want to be left alone to process the last year and a half of my life and the new developments. (And I’m not even talking about the lesions.) I don’t know how long it’s going to take, but it’ll take as long as it takes. I can’t do anything quickly these days.

In the meantime, I’ll be over here being incredibly snarky and eating cheese.

If reading all of this makes you feel uncomfortable, I promise it feels worse living it.

There’s no certainty and my uncertainty tolerance is really low. Everything is a waiting game: Will I wake up blind tomorrow waiting to start this med? What if I end up in a wheelchair before I get to start it? Will the med work? Will I stay this depressed forever because now it’s structural? Is this as bad as the MS is going to get or will it get worse? Will I eventually be able to rally one more time if I can get my feet back under me? Can I rebuild my business post-Covid despite people seeing that I’m visibly and permanently disabled? How do I avoid going to prison for smacking stupid people who say stupid things? How long before I’m a person with significant cognitive impairment? Is there a point in our future when I’m not even remotely like the woman my husband married?

Thanks for coming to my pity party. Just put the bottle of wine you brought for me over there with the others and help yourself to the cheese plate…