This summer wasn’t my favorite.
I mean, summer in general isn’t usually my favorite but this one sucked more than usual. That’s probably the result of my multiple sclerosis which seems to be on a collision course with full-time misery what with being the world’s fastest progression of disability maybe ever. OK. I know there is probably a faster progression to disability on record out there but my head is still spinning with all the things on my body that have just plum given up the ghost this summer during weeks and weeks of high 90 degree weather with humidity that felt like breathing water.
My rollator is now a fancy machine that allows me to amble about ten or fifteen feet max before I’m good and cooked. I’ve had to get my head around the idea that I need a mobility option for longer distances so I bought myself a starter motorized wheelchair which I immediately had to send back when it proved to be impossible for me to lift – even with the “easy to use quick-release wheel motors” removed. Here’s the thing. They were neither quick nor easy to remove. The chair had to go back for what I hope is a smaller, more easily managed model. This smaller model is still likely to require help for me to transport but it’s a lot more practical. Color me informed. We’ll see how it goes when it arrives sometime around September 10.
That is timely because it gives me exactly two days to learn how to drive it before I need to use it to get myself to the office for a very important meeting with our brand new CEO who is coming to town for said meeting that I am expected to host. It will be bloody brilliant should I go careening into walls and cubicles trying to get myself to and around my office on Friday September 13. Nothing impresses a new CEO more than wheelchair hijinks. Or so I’m told.
The funniest thing of all, really, is that I’d been hoping to be feeling a bit better for this auspicious day based on the fact that summer seems to be coming to an actual end, right on time for a change. This Labor Day is cool and the forecast for the coming weeks is lot of cooler, dryer weather. The kind of weather my hot mess of a body actually loves (usually). Oh, I’m sure there’s at least a week or ten days of super hot humid stuff coming for me. There always is. It’s Pittsburgh, after all, so I’m already mentally preparing myself for it. But the funny thing is, this nice cool weather isn’t really having the body invigorating affect it normally has.
It appears that my legs have decided to call it actual quits. They don’t seem to want to move very much at all these last few days. I am back at the whole physical therapy thing and I have to say, the first two sessions pretty much sucked. My legs are dragging more than lifting off the ground. My first session wasn’t as bad as the one I had this past Friday. This past Friday my legs, more specifically, my right leg doesn’t seem to want to lift off the ground at all. It kind of just wants to drag itself around. I noticed the difference between my Monday performance at PT and my Friday performance quite distinctly. It was marked.
Now unless my MS has decided to get all cranked up for a new and improved descent into disability for no good reason (which, as we know, is entirely possible and not out of the question at all), it might be worth noting that between Monday’s PT and Friday’s PT was Wednesday’s doctor appointments. One of these appointment was my morning session where I visited the spasticity clinic for my next round of Botox in my legs.
After the first round we didn’t get much action from a starter dose of 200 units split between both of my calves and behind the toes of my right foot, so we upped my total dose to 400 units in all of those same places for this second go. We also added two shots in my right hamstring that was so tight it made the EMG machine sound like an entire herd of killer whales singing under water. Or a pod of killer whales, such as they are actually called according to Google…but who’s counting? I got a total of 16 shots of Botox last Wednesday morning before Dr. Liang was done torturing me. I thanked her profusely because there is nothing worse than spastic muscles and toes that randomly turn into tiny little claws, is there?
Well. As it turns out, there might be something worse after all! That would be when you get too much Botox in large muscle groups and you find yourself becoming weaker and weaker with each passing day until today comes around and your right leg is pretty much dead.
Will not move. Won’t lift off the floor. DEAD.
This very well could be an ill-timed worsening of my symptoms, of course that is always a possibility especially when you’re my MS. My MS seems to get its jollies from being a super duper overachiever. The one thing that has been relatively consistent since my diagnosis is the ever lengthening list of things my body just doesn’t want to do anymore. This could just be the seemingly inevitable death of another limb. That’s entirely possible because as we all know, that MS, she’s a fucking asshole like that but the coincidence is a bit too on the nose for this to be the culprit.
Wednesday’s 16 shots came with the warning that this was possible. It’s always possible when you decide to randomly paralyze big muscle groups with dosing that is anything but an exact science. The whole trial and error process for dosing Botox in big muscle groups could very well lead to things like this happening. WE DISCUSSED IT. I poo-pooed it thinking…P’shaw! I won’t be that unlucky! This is going to be the dose that lets me have legs that move just like the legs of a real, live flesh and blood girl! Later, wooden doll legs! Momma’s got soft human flesh to get used to.
Or not.
One of my valuable resources for information, a friend who also gets Botox for spastic muscles told me a story of how this happened to her with her right hand. Yes. She’s right handed. And with each passing week, the effects wore off just a tiny bit. It was several weeks before she could give her husband the finger for laughing at her inability to give him the finger at all. Because, obviously, there’s no remedy for too much Botox other than time. The sheer time it takes for that shit to wear off. I mean, check out any episode of any of the Real Housewives shows and you will see that there really isn’t much you can do when you’ve overdone it with the Botox. I may have learned this lesson the hard way myself once in my early forties, but I will neither confirm this point nor deny it. But I might have the selfies with the oddly Spock-like eyebrows to remind me that this might have indeed happened before I wised up and gave that shit up for good. In my face anyway.
That shit has to wear off.
OK, stay with me here. This is a bit complicated and I don’t want to lose you. It could be that the treatment I was given to help improve my gait and ability to move my legs has actually gone awry and made it impossible for me to move one of my legs at all. I was told that the effects of the second dose of Botox for spasticity kick in almost immediately and continue to ramp up for about the first ten days until they reach full power and begin to wear off ever so slowly over time. Over months of time. OVER MONTHS OF TIME WITH A DEAD RIGHT LEG.
Seriously, I can’t make this stuff up. Of course I plan to call the spasticity clinic nurse on Tuesday as soon as we are all done celebrating the American national holiday officially signaling the end of summer. Neurologists and their teams are also not working tomorrow, much like my right leg. I’m not sure why I’m even going to bother to call them, to be honest. I am almost certain there is nothing they can do to speed up the wearing off process from my latest round of poisonous injections. It’s not like Dr. Liang or Nurse Barb is going try to suck the poison out of my wound as if I’d be bitten by a rattlesnake on the way home from PT on Friday.
And it is entirely possible that this isn’t because of the Botox at all and it’s just my MS (she’s that bitch, as we know). I’m not sure if that will make me feel better or worse. Worse. Definitely worse.
Anyhoodle…this whole having a dead right leg thing is putting a damper on my ability to enjoy the lovely cool weather we have on deck for the next ten days or so. It’s difficult to drive with a dead right leg, you see, so it hardly even matters that I wouldn’t be able to walk far enough outside of my home to actually get to the car in the first place. I have no idea what this means for my big upcoming meeting. I mean, the Botox should be hitting prime paralysis by that time, about ten days from today, so a day in the office meeting a new bigwig whilst sporting dead legs and a brand new wheelchair thing with MOTORS should go off without a hitch, right?
I said, RIGHT?!?!?!?!!!!
Barbara Cartet
September 1, 2019 8:51 pmStarting the big Lemtrada this week. I am having, anxiety an don’t know if I’m making the right choice. Actually I’m scared to death
I know you have been there
bethnigro0212@gmail.com
September 1, 2019 8:54 pmI have been. And all I can tell you is that infusion week was so much easier than I thought it would be. I had myself all worked up for a hellish week and it was really just fine. I’ve had some tough days in the recovery but that is different for everyone. You might feel great! I know lots of people who did. I’m sending you good positive vibes. 👍🏻💕
Lisa Berube
September 2, 2019 12:17 amYou have to be fucxing kidding me. You do put the fear of God in me. How long have you had MS.
bethnigro0212@gmail.com
September 2, 2019 12:42 amI was diagnosed on December 1, 2015. It took three years of one mysterious ailment after another before I finally got a diagnosis. It’s sure been a helluva lot of fun. That was a joke. 😉
Amy E Ropple
September 2, 2019 9:10 amUnbelievable. You are tougher than you think, or than you want to be, probably. Keep writing your heart out.
bethnigro0212@gmail.com
September 2, 2019 2:15 pmDefinitely almost never feel very tough at all. Mostly I feel frustrated as hell. Thanks for saying that. 🙂
Melissa Marks
September 2, 2019 12:50 pmMy left side is like your right due to a cervical spine lesion .. I am sorry that these additional scary things are affecting you now . It really sucks .. make sure you have Uber or similar in case you can’t drive for the important meeting .Its another piece of armor you need to continue functioning. Sending you hugs xx🙏🏻😊
bethnigro0212@gmail.com
September 2, 2019 2:16 pmGreat advice! I’m giving myself the day off today. Totally only dragging my damn leg around at the very barest minimum. It just gets so…exhausting, ya know? Yes. I know you know. 😉
Lisa Berube
September 3, 2019 12:59 amI was diagnosed in June 2017. But they really knew in January 2017. Almost exactly 2 years after you. I hate this disease and I hate me and am so mad. I also have sjrogrens autoimmune. Cornea issues. I must have done something horrible in another life. I have aged 10 yrs in 2.5yrs. And I hate me. But I adore you and your honesty. 🤩😍❤
Positively Alyssa
September 9, 2019 5:07 pmI am with you 100%, this summer has been brutal! I think it has been much hotter and it is killing me slowly. The only good thing about summer is the beach, but hell I haven’t even been there. Living in the south, I am counting the days until this nasty heat will end and the temperatures will be cooler. I have been dealing with MS for 18 years and this summer was the worst yet.
Msintheus
September 15, 2019 7:04 pmHave you considered leaving the country to get HSCT?
bethnigro0212@gmail.com
September 15, 2019 7:32 pmI have but I decided that I’m not comfortable with taking that kind of risk on an aggressive treatment like that. It’s not something I can see myself doing.