I realized today that I’d not updated the blog with my latest news coming out of my test dose of intrathecal baclofen to determine my suitability for the baclofen pump. That is so unlike me! I may be suffering from health care fatigue, that way-too-common chronic illness symptom that we don’t talk enough about where the management of your own care becomes such a major factor in your life that it leaves little room for anything else. Anything else that doesn’t resemble actual sleep, that is, because that’s what I’ve been doing since my test appointment this past Tuesday.

I’ll cut to the chase. I passed the test.

I couldn’t leave you in suspense that way while I wax poetic about my utter amazement that I’ve become so accustomed to things generally not working out that when something does I’m left in some kind of weird state of shock where I’m just sitting here staring at my computer thinking, “Huh. That’s really something. How do I go about writing about good news again?”

The thing is, I had myself pretty well worked up going into this very long day. It would begin with a lumbar puncture and end with a decision from the physical therapist and my spasticity specialist Dr. Liang about whether or not it looked like I’d be a good candidate for the baclofen pump. After a day that began at 6:30AM and ended with my last check in with the PT around 3PM, they decided that I would indeed be a good candidate. I was so relieved I almost didn’t believe it. I had myself mentally prepared to lose my shit when they gave me the thumbs down. I felt desperate. I’m guessing that’s not much of a surprise since I wrote about that desperation more than once right here. I couldn’t figure out how to react when I was faced with a positive outcome maybe because it’s just the first step. Damon, the friendly rep from Medtronic the maker of the baclofen pump, explained the process to me.

It’s notable that he did this explaining while I was getting the actual lumbar puncture. I was relieved when Dr. Liang explained to me that I would stay in the room where I was situated to have the LP and that she would be doing it herself. I could leave my clothes on and sit on the edge of the hospital bed upon where I was perched. I had a table with a pillow on top to hang on to. Damon was standing in front of my little table talking to me but I was only half listening to him because I could hear Dr. Liang explaining to her PA what she was doing and how to find the right spot. I was only half listening to Damon because I was preparing to be in agony once the lumbar puncture began. The LP I had at the time of my diagnosis was horrible. It was straight up traumatic. I remember frequent jolts of strange pain that felt somehow electrical travel from my spine down my legs each time the doctor fished around in my spinal fluid trying to extract what they needed to confirm my diagnosis. I would start chanting, “It hurts, it hurts, it hurts,” ever more urgently until the doc shifted the needle positioning and I would be OK again. Until the next time when it hurt. It took about an hour and I had to go through that routine about 10 times before the whole thing was done with. When Yang, the PA, explained to me in my recent appointment with her that the medication would be injected directly into my spinal fluid during a lumbar puncture I went white. She also told me during that visit that if I passed the test I would schedule surgery and then be held for two weeks in-patient while I recovered and had rehabilitation to get me ready for release. I blanched again at this detail. Two weeks in the hospital! Jesus.

This time, Damon was still chattering away about how I would be implanted in an out-patient procedure and if all went as planned I’d be released and sent home that same day. That got my attention. “Wait. So there’s no hospital stay involved? What happened to the two weeks of in-patient recovery and rehab that Yang told me about?” That’s when Yang piped up from behind my back to deny ever telling me that. I mean, seriously. Like I’d make something like that up! But I didn’t fight with her about it because I was imagining that might lead to more pain for me so I kept my mouth (mostly) shut and allowed Damon to tell me that I’d be in recovery for 4-6 weeks where I’d have to take things generally easy but I could do that recovering at home. “Hold very still,” said Dr. Liang from behind my back and I clamped my eyes shut tightly while Damon droned on about the importance of maintaining all appointments with Dr. Liang while we figure out the right dosing and pacing for my drug delivery. I vaguely remembered hearing Dr. Liang saying something and I asked Damon to slow his roll while we got through the spinal tap so I could concentrate on what he was saying and he said, “Oh, she’s already done.”

Wait…what?

“I’m all done Maribeth,” piped up Dr. Liang.

“How is that even possible,” I gasped. “My last lumbar puncture was tortuous. How could you be done? I didn’t even feel anything.”

I could hear her chuckle a little, “I’m cleaning you up and placing a bandage. You’re all set. I’ve done a very, very many LP’s in my career,” Dr. Liang explained to me. “I’m very good at them, I’m told.” Well yes you are, Dr. Liang, yes you ARE. I am still a little bit dumbfounded and that was two days ago now. If you ever need a lumbar puncture in your future, it would be well worth a trip to Pittsburgh to see Dr. Feelgood, aka, Dr. Liang at Allegheny Neurology. Holy crap. The woman is a LP virtuoso. I’d been dreading that moment since we set the date! I know I’m going on and on about this but I’m telling you it feels like a happening that deserves to be gone on and on about. My spinal tap was painless. Even typing those words feels like I’m telling dirty lies and I promise you I am not.

From there things got pretty tedious. The little blonde PT popped in and did some baseline manipulations of my limbs. She tried to pull each of my legs out straight in front of me and I gasped again (for what seems like the millionth time in the day and it wasn’t even 8AM yet). I could feel the spasm starting as she began to pull my legs toward the end of the bed. “You can’t do that,” I practically spat at her. “They’ll get stuck. They’ll spasm. Please don’t do that.” She said it was ok. We would try that move a little later in the next two-hour check. She could feel the spasm the minute she pulled my leg out straight. She moved my legs around a bit more then we got up to take a walk while a nurse recorded video. The plan for the day was to go through this routine two more times at two-hour intervals. In between those visits I just had to hang out there. It was fucking torture because of a few silly little things.

First, it was just plain tedious. Sitting around in a hospital bed for a day without much to do other than surf social media on your phone is just awful. I was so focused on dreading my LP that I forgot to pack up a few little obvious things like my computer, a book or even some decent snacks. My sister hooked me up with some sweet hospital gift shop snack options so that helped a lot but it still made for a really long boring day. Second, my nurse had inserted an IV in my left hand in the event that I needed sudden fluids or any other meds quickly but she inserted it without thinking that I would need to use my hands to maneuver myself around on that hospital bed all day. Every time I grabbed on to the bed rails to move myself around, that cannula jammed into my wrist painfully. Halfway through the day I was begging her to take it out. But she wouldn’t and it kept getting worse all day. The overwhelming irony that a doctor could ram a needle into my spine and I’d felt nothing at all but that this ill-advised location for an unnecessary IV caused me pain all day long was not lost on me.

When the PT came back for my four-hour check, things had loosened up. I could feel the release in my hip flexors most notably. My hip flexors are so tight 24 hours a day that they make it difficult for me to stand up straight. I never realized that it was my hip flexor spasticity that caused me to fold over at the waist involuntarily. Tight hip flexors make it hard to do a whole lot of things that I’d never thought about before they weren’t tight anymore. When the PT came back we decided to try the straight leg thing again. I wasn’t very excited about it because it’s been more than a year since I could do that with my legs without them springing out ramrod straight, tightly locked in front of me in total painful spasm. It isn’t pleasant. “Just be ready, OK, in case it happens will you bend my knees really quickly?” I asked her. She promised me she would. We stretched the left leg out first. I held my breath and realized that nothing was happening. My left leg was resting nicely on the bed straight out in front of me. Then we did the same with my right. I couldn’t really believe my eyes, to tell you the truth. I hadn’t been able to sit or lay with my legs out in front of me like that in what felt like forever. I almost wept until I realized I couldn’t lift either of them to a bent position on my own. “You’re going to be weak. You haven’t been able to move your legs out of this position in a really long time. The idea here is that the pump lets you move around better so you can then start getting stronger again so you can move in more normal ways. But it’s going to take some work.”

It hit me then. This was just the beginning. Again.

The beginning of another process where I would try to bring myself back. But this time I would be giving myself a pretty big advantage with medication delivered directly to my spinal cord from a freaky hockey puck implanted in my belly. I will be able to stop feeling chained to pill bottles at 6 hour intervals knowing I’d start to feel stiffer and stiffer beginning around hour 4. It would be a ton of work, to be sure, but it wouldn’t feel futile like it has up until now because at least one of my many symptoms won’t be working so hard to make sure I will fail. It won’t be a miracle. But it will give me a better shot at moving around a little better. That feels like enough for now. Just a chance that this one thing won’t be constantly trying to make certain that I’m going to fail before I even begin trying. I’ll take that. I’ll take anything. I just want to stop being afraid of my own muscles, being afraid that I will never feel comfortable again, being afraid that no matter how much effort I put into helping my body it would never make any difference at all.

This will not be a miracle. This is just one very complicated aspect of a very complicated multi-systemic chronic illness that will never get better. By its very nature, my disease is progressive and incurable. But I can maybe feel a little bit better while it’s being progressive and incurable. Maybe I can feel a little less desperate. Maybe I can feel like there’s a little bit of good down the road that has been feeling a bit bleak this past year.

It is hard to overstate what relentless fear does to a person’s brain. The relentless fear that you can’t rely on the one thing, the one thing that had never let you down until four short years ago, the body you live in. The body you have taken for granted and abused and not loved nearly enough. The body you never appreciated until it started to stop working at what has felt like break-neck speed. I am relentlessly realistic to the point of being accused of being pessimistic at times. I have to live in what’s real. I won’t let myself forget that I have to try and appreciate what I still have now because I don’t know how long I will have even that. But this feels like a chance to have a tiny bit more good.

Just like everything associated with having MS, with the exception of my progression, this won’t move fast enough for me. I had delusions of getting this surgery before the end of this year. I know! You can stop laughing now. I am the oxymoron made flesh. The irrational realist? A pessimistic magical thinker? Right. That.

I made the appointment with my surgeon for the initial consult on January 6. We will map out a plan from there and, of course, I’ll take you all along for the ride sharing far too much information along the way. But here we go again. Only months left to be a slave to pill bottles and attempting to live in four hour windows of time with semi-moveable limbs.

As my mother would say, I won’t count my chickens before they hatch. But it’s nice to have what feels like a promising egg on which to sit for a spell while I await the baby chick instead of crying in a puddle of gooey yolks and broken shells. That chicken metaphor was never going to carry this ending very well, was it? Right.