An American horror story.

I finally got the bill for my first infusion. Okay, that’s not entirely accurate. I’ve had the bill, but Husband finally went through the mail and opened it. Now, I knew the medication would be stupid expensive – estimates were in the $1500-3000 range (ugh, per monthly dose). Those estimates were a tad off.

The line item cost for the drug alone (not the infusion or its related costs, just the drug) was twenty fucking thousand dollars. If your jaw isn’t on the floor, you’re numb to the absurdity of this system.

I mean, I could buy a Jetta for the cost of this stuff. That’s a not-shitty car, every. single. month. For eternity. Add in the cost of actually getting the drug administered, rather than having an expensive liquid paperweight, and we’re talking a monthly Passat. The insurance company getting their knickers in a twist makes a lot more sense now.

Oy vey. This post was supposed to be an amusing commentary about all this, but I can’t stay on this subject without spiraling into an rabid political rant. One that’s too fucking serious to be funny. And I really can’t risk popping a vessel over this; goodness knows how much the resulting surgery would cost.

Take a deep breath...

I finally got my first MS treatment. It took forever for insurance to approve the treatment, since I’m skipping the entry-level stuff and going straight to the good shit. That’s partly because I’m in a study comparing the long-term outcomes of the two treatments, and partly because I’ve got lesions in my brain stem and spinal cord so I don’t wanna mess around. Since November I’ve been in a would they/wouldn’t they state of waiting. I got the good news a couple weeks ago. Exhale.

 I made my appointment for last Friday. Then got sick the Sunday before. Really sick. Like, spent the day in bed despite being solo with the kiddos. I didn’t feel much better on Monday. I still had a solid fever on Tuesday. By Wednesday I was getting nervous. This medication compromises my immune system, so if I’ve already got a bug, I can’t take it. Luckily, my fever broke Wednesday evening and my doctor gave the thumbs up for my infusion. Exhale.

I didn’t really know what to expect. I hadn’t found much information about what the process is like or how people tend to respond. My mom (she’s the best) came with, just in case it made me feel shitty. She’d be able to get me home and help Husband with the kids if I was down for the count. Again. 

At the bright and early hour of seven GD thirty, we checked in. The appointment covers one hour of waiting while they prep the meds, one hour for the infusion, then one hour for observation. Fortunately, the medication was ready, so we go to skip the first hour. They popped the needle into my hand, started the meds, and… nothing. No pain, no itching, no hives, no chills, no nausea. I spent two hours gabbing with my mom and sipping on a latte while the lovely nurses checked in, offering snacks, beverages, and blankets. It was a downright pleasant experience. Everything went smoothly and I showed no signs of allergic reaction. Exhale.

After we left, Mom and I had an open day. We’d both been so stuck on the idea of a bad reaction, we never planned on what to do if I was fine. Though I will say, I was kind of expecting that to change at any point. It never did. I felt great all day Friday and Saturday. Exhale.

It’s been a few days now and I haven’t experienced any side effects. I’m still skeptical. For years I’ve been taking birth control and anti-anxiety meds, and neither have any negative effects. Can I dare hope to be on third medication with that same fortune? I guess I’m still holding my breath.

MRIs and OMGs: a very MS weekend

I celebrated my long weekend by bookending it with MS appointments. On Saturday morning, I had my spinal MRI, then on Monday, I sat down with the doc to go over the results.

Saturday: MRI #2

This may sound odd, but I’ve decided I rather like MRIs. I was kind of well-built for the procedure; I’m not claustrophobic, I don’t have a bad reaction to the contrast material, my veins are big and near the surface for easy injections, and I can sit still for long periods of time. The noises, the light, the movement - none of it bothers me. I was relaxed enough that I caught myself snoring. It’s a strange nap, but dammit, it’s a nap and I’ll take it. Hell, I’ll take any two hours during which there are absolutely zero demands on me, internal or external.

Monday: The results

I brought Husband to my appointment this time. I expected a brief meeting during which my spinal column was cleared, we determined which medication I’d start, and I’d get a prescription. Yeah. It wasn’t that. We went over the brain stem and found a few scars along with an active spot. Ditto my spinal column. Right off the bat, I felt a bit thrown. The brain stem and spinal cord tend to result more in mobility issues. I haven’t had any, but since I know those neurons are being affected, it’s only a matter of time. Or not. After all, this is MS, and no self-respecting mindfuck would be complete without a total sense of unpredictability.

So yeah, it was bad news. But on the other hand, nothing’s really different than it was. More lesions than expected doesn’t change the fact that I’m still largely unaffected in any serious way. And while it’s hard to know how to react to a nebulous future, I’m still fairly lucky. If tired a lot.

So here’s where I’m at. Sometime this week, I’ll talk to a coordinator to get in on a medication study. Not new meds, I’m not that brave. Or scared. This study is designed to determine long term effects of two treatment approaches. Once I’m in a group, I’ll talk to my doctor about which medication is best for me. I should be able to start treatment in 2-3 weeks. Which, dammit, feels like a fucking eternity.

I’m frustrated that every time I get information, I realize it’s not as illuminating as I think it should be. Wait for an appointment, get some info, wait for another appointment, get some more info, all underscored by a general lack of definition, expectation, or action. I feel like the first stage of this whole thing is accepting perpetual annoyance.

A peek inside my head. Figuratively.

In my last post, I mentioned that I’m feeling things about my diagnosis. As that one was already fairly long, and this one is likely going to be as well, I figured I’d two-part them.

So, here are some of the thoughts, feelings and concerns that have been floating around this flawed brain lately:

I have to start with the most impactful: my friends and family have been amazing. Offers to help or listen, assurances of support and love, general understanding and concerns. A lady can’t help but feel loved. Even folks I haven’t known very long have been awesome. I am eternally grateful.

Most people seem more concerned than I am. I suppose it’s because I had some time to read up when it was still a question mark and not particularly relatable. By the time I got my diagnosis, I’d already adjusted somewhat to the possibility. But I haven’t felt a strong sense of fear, sadness, or panic yet. No tears have been shed. Not by me, anyway. I can’t help but wonder whether other people are overreacting, or if I’m just being naive.

MS is a weird condition, both in how it presents and how it’s perceived. I always thought of it the way I do cancer or Huntington’s – basically, a patient is fucked. For some, yeah, they kind of are. For others, not so much. Research and treatment have advanced quite a bit in the last 15 years or so, so a case like mine isn’t necessarily the fast track to disability it may have once been.

Then again, it could be. The hardest part to deal with is the nebulous nature of this disease. It affects everyone differently, with a broad array of presentations, different rates of disability, and varying efficacy with a number of treatments. And there isn’t a whole hell of a lot I can do right now.

When I visited the neurologist for the first time, I had a real kick in the teeth: the elevators opened at the MS floor, and immediately in front of me was a woman in a souped-up wheel chair. There was another such patient at the other end of the reception counter. I looked around and saw many canes and walkers. I didn’t know the extent of my case so far (still don’t), so seeing people who have, in a sense, been ravaged by this disease was the most sobering part of this experience yet. 

Getting an MS diagnosis has a strange commonality to having a miscarriage. You don’t hear much about either until you’re affected, then people come out of the woodwork with related stories. One friend told me they’d been diagnosed in the last year, while several others have a parent or friend with MS. Most are doing well, especially those who caught the disease early, like me.

Speaking of, thank goodness my first symptom was visual. I waited a couple of weeks before getting that checked out, so something less obvious? Who knows how long I would have ignored it.

And along those lines, I’ll always have a new thought in the back of my mind: Is this another symptom? I will spend the rest of my life wondering if anything weird is due to MS, or if I’m just sick, tired, drunk, hungover or getting older.

I don’t have any particular issues against talking about this, other than it’s early and I don’t have much to say. I plan on being pretty open about this as it goes forward. So, yeah, expect more posts about MS. And other things, too.