It gets so frustrating some days. You go to bed each night thinking, “Tomorrow. Tomorrow is going to be the day I wake up feeling more normal. It’s gotta be tomorrow.” Then you wake up and it’s today and nothing is different so you start to think, “Maybe tomorrow…” ad nauseum until some day it happens to be true?

I am still clawing my way back to life from Ocrevus infusion number 3. I am still barely able to walk two or three steps without needing support. I still have overwhelming muscle spasticity in muscles that are normally just fine. It’s my thighs, my right leg, my left arm – seemingly random places that I don’t recall ever complaining about before. I should probably keep a list.

I sent a tersely worded plea to The Great Scott, describing my experience post-infusion, describing how I can barely walk at all, my left hand is completely numb, my right leg is spasming painfully and I am extremely off balance. It’s not vertigo this time, it feels like I’m walking on the deck of a boat and I could tip over at any minute. I look like I’m drunk, staggering around trying to remain upright. But guess what?

TGS is out of town.

Evil Nurse Carol told me this in a tersely worded email. He wouldn’t be able to talk to me and before he would even consider any action, he would require you to rule out a UTI. “Because you could have a UTI, Maribeth, and that would cause all of these symptoms to flare. You need to go to a MedExpress and get them to give you a UA and a C&S so we can see if you have a UTI. I called you and left a voice mail.”

Um, Carol, I’m not sure you understand how mobile phones work here in the future. If you had called me and I somehow missed your call while holding my actual phone in my actual hand waiting all day to hear from your office based on the telephone message I left there this very morning, if that had somehow happened there would be an alert on my phone that literally says: MISSED CALL. There would be a little red dot on my little telephone icon on my smart phone telling me oh, look! A responsible and caring medical professional was thoughtful enough to leave me a voice message! You didn’t just leave me a voice mail, Carol. As my mother used to say to 16-year-old-lying-ass-me: Tell the truth and shame the damn devil, Carol.

I have absolutely zero symptoms of a UTI. Nary a one. I know what a UTI feels like and I don’t have a fucking UTI. Do you remember the part where I can’t move around so good? I’d rather not go running all over town getting urine tests for an infection I do not have. Oh guess what else? MedExpress doesn’t have an onsite lab so I have to drive to this other outpatient lab because they can test onsite. For the UTI I do not have.

They make you work for it before they will even begin to allow themselves to consider that it might be related to this drug I just got shot full of, or my MS itself or all the doses of benedryl they gave me on infusion day or something obvious like that ever comes to mind. I have to get up at 7AM on a Saturday and drive a few towns over to get to an outpatient lab that is open on Saturday so I can have a UA and a C&S to determine that I don’t have a UTI.

I know her game.

Nurse Carol is just trying to buy time for The Great Scott so he doesn’t have to interrupt his ever-so-important travel to deal with the problem patient who just won’t seem to get with the program. She knows that it will take time for me to research where the out patient lab that is open on Saturday is, then it will take me time to stumble to my car to drive there and pee in a cup or something and then it will take days for the tests to be run and results to be analyzed and in all of THAT time, neither of them will have to deal with difficult, refuses-to-get-better me.

I know their game.

I’m doing the same thing right now that I’ve done every night this week, since infusion Monday and that is going up to bed thinking to myself, “Maybe tomorrow! Maybe tomorrow I will wake up and all of this weirdness will pass. Maybe I can take a shower!” I may actually laugh a little at how impatient I was to think this was never going to get better. Silly, silly me.

I’m wondering what’s going to happen when TGS gets back to town and he realizes how NOT happy I am. Will he shock me as he has done in the past and give me an actual call? Will he demand that I produce myself at his office next week instead of waiting until July, as we had originally planned? Will he be open to discussing things like stem cell therapy or chemo or something else drastic to get me off of this crazy train? Will he react poorly when I suggest that I question the standard of care coming from his team so much so that I am considering driving to the Cleveland Clinic to see what kind of good MS-specialist-like-objects they have up north?

My money’s on him sending me an email to let me know that he sent me in a scrip for more steroids. I wonder how many times you can take those things before your body just starts disintegrating?

Tomorrow might be the day. I’m not giving up on that yet. While TGS buys himself some time sending me for tests I don’t need,  I will be over here googling the shit out of “Cleveland Clinic and MS specialist.” I will tell myself that driving a couple of hours a couple of times a year is worth it if I can find a better, more focused, supportive specialist by doing so.

I will remind myself that making this drive will be a lot more fun in my snazzy new car. I can’t walk so good, but by god, I can drive. I’m going to enjoy the shit out of that fact until this godforsaken disease takes that away from me, too.

It’s not really a dead end. It feels like one right now, but I know there are roads left to explore. They’re all pretty scary roads involving ever more ugly chemicals possibly causing even more bad things to happen to my body, but there are roads to explore. If I have to be the most annoying patient ever to be diagnosed with multiple sclerosis in order to drive down those roads, you know I have it in me.

They can try to buy time but I’m not about wasting much more of it, ya know?