Month: October 2021

Categories
Life with multiple sclerosis

The Crappiest Gap

Photograph: RichSTOCK/Alamy

I’m having my 9th dose of Ocrevus this coming Friday (29 October) and since I’m a glutton for punishment, I’m having my baclofen pump refilled, the baclofen dose rate turned up a bit, a flu vaccination, and all my yearly bloodwork done. I figure that even though I’m cleared for the faster infusion rate, I’m still going to be sitting in the clinic for the better part of my day, so I might as well be efficient and get it all knocked out at once. I mean, I’m already getting one needle poke, what’s a couple more? OK, not my best logic and I may be singing a different tune after, but at least I’ll have some good material for next week’s post.

I’m actually looking forward to all this. Getting the bloodwork done ahead of my December GP appointment will save time then. The flu shot may not be 100% effective, but after my bout with Covid in early September, I’ll take even a 10% chance of not getting the flu. It’s past time for a baclofen pump adjustment. The goal has been to find a dose that tames the spacticity while still leaving enough muscle tone for my legs and lower torso to be useful. I let it go this time until the spacticity started to become a problem, so I’ll be glad for the relaxation. Finally, I’ve been on Ocrevus since it was approved by the FDA in 2017 and it seems to have my progression stabilized (no new brain or spinal lesions and no active demyelination), so naturally, I’d look forward to the continuation of therapy based on that assumption alone. However, there’s another reason and that reason is because this time around, I’m having an extra rough time with the “crap gap”.

Ocrevus is a twice yearly infusion that specifically targets the B cells in the immune system that the developers determined were responsible for demyelination. The “crap gap” is a space of time just before an infusion when the effects of the last one are wearing off and you start having a return of your old, pre-Ocrevus symptoms……ie, you feel like crap. I have no idea how medically/scientifically factual this is, but patients on both Ocrevus and its sister drug Rituxan report a period of increased symptoms 2-4 weeks prior to an infusion.

Experiences seem to vary, both in duration and intensity. Some of my gaps have been worse than others, but all have been noticeable. I usually start to feel a little extra fatigued about 2 weeks before an infusion. My last infusion in April was delayed by 2 weeks so as to not interfere with my 2 rounds of Covid vaccine, but even with 4 total weeks of gap, I don’t recall it being particularly noteworthy when compared to others. My pet theory (which is just that) is that my immune system was too busy reacting to the vaccine and building antibodies to put a lot of effort into pestering me for being late with my infusion.

This infusion has also been delayed by 2 weeks due to scheduling conflicts, but this time, I’m really feeling the gap. Extra fatigue, brain fog, uncooperative hands, arms, and legs, foggy, double vision, and just overall crappiness. If I had the wherewithal, my pet theory this time would be that the extra spacticity resulting from not having high enough baclofen levels was a big contributor. (hmm, it appears I have the wherewithal)

Regardless, this is my most memorable “crap gap” to date. Maybe I’ll start referring to it by a title worthy of it; the “crap gully”, the “crap ravine”, the “crap canyon”…….Ok, now I’m just being over dramatic.

I’ll have a good infusion/pump refill/blood draw/flu vaccine report next week. Stay tuned.

Categories
Life with multiple sclerosis

The MS Pirate

In last week’s post, I talked about a new magazine being a fresh reminder of my disability and how it was something of a minor reset of the grief cycle. Fortunately it was pretty minor and I recovered quickly. My recovery probably had very little to do with my own sense of mental fortitude and more to do with a mind occupying family trip to Legoland Florida and Disney World. It was fall break for the kids and after a character building, 8 hour, family road trip, we arrived at the Legoland hotel/resort. Since I might have been a little over dramatic about the magazine thing and because God has a sense of humor, this is what was waiting for me in the pirate ship display outside the hotel.

 That nearly life-size buccaneer fosters a sense of inclusivity and reassures visitors with all sorts of disabilities as to the accessibility of both park and hotel, but after 2 days of rolling around and transferring on and off rides, I decided that he is a multiple sclerosis icon. The wheelchair for his mobility issues is obvious, so I won’t dwell on it, but follow my head to toe review of the MS pirate and see if you agree with my assessment.

First, he has his trusty hat because a little shade goes a long way in the battle against heat. It also helps shield light sensitive eyes and when hands are too clumsy and uncooperative for any proper brushing and styling of your hair, hiding it under a hat is the next best thing.

Next, he’s opted for an eye patch to deal with double vision rather than the close one eye method. “Yarrrr, I’m not winkin’ at ye. I’m just makin’ sure ya ain’t twins”. 

Keeping one eye tightly closed can pull your mouth into the classic MS snarl….or sneer, but since he’s probably got his eye open under the patch, his snarl is either due to a facial muscle spasm, or some good old MS attitude.

He’s unshaven because some days MS and a razor just don’t mix. You can have a little scruff, or you can look like you lost a fight with a wildcat, your choice. That goes for whatever body part you shave. The MS pirate might have had stubbly legs, but I didn’t check because I respect his privacy.

Moving on, he’s wearing a gait belt over his clothes. We found this to be almost indispensable for transfers in the park and when we weren’t using it to help move me on and off rides, we secured it around my legs to keep them together when fatigue and baclofen caused me to do the MS spread.

Speaking of clothes, his are scrunched up because sitting and shifting in a wheelchair for several hours does that. We can’t see it, but I bet there’s a bare patch of lower back/butt showing where he’s either shifted down and hiked up his shirt, or scooted back and moved his pants down. 

One of his hands is curled by spacticity into a semi useful hook while the other, more capable one is wielding an item not intended for it, as a reacher, back scratcher, shoe horn, etc. The proper tool is elsewhere because it’s a wheelchair, not a Swiss army knife and while necessity may be the mother of invention, disability is its irresponsible uncle.

Finally, even though they’re not my thing, his knee high boots are practical slip ons so he doesn’t use a quarter of the day’s energy trying to put on real footwear. I’ll bet there’s knee high compression socks under them too. Those, unfortunately, are my thing.

Here’s my theme park ensemble. 

In hindsight, it is October so I could have gotten away with dressing like a pirate. I think he might have a better sense of MS fashion than I do anyway.

Categories
Life with multiple sclerosis

Give Him The Chair!

Electric wheelchair convenience, illustration on chalkboard

I recently joined a new (to me) disabled veteran’s organization, and received an issue of their quarterly magazine in the mail last week. As I probably should have seen coming, the magazine is full of disabled veterans. There are pictures of disabled vets in wheelchairs involved in a variety of sports, there are pictures of vets in wheelchairs working at different jobs, or lobbying to change or update laws regarding people with disabilities. There’s even advertising geared towards the handicapped with ads for adaptive clothing, exercise gear, and wheelchair accessories, some of which, I have to admit, are pretty cool. Still, something about getting a disabled magazine was bothersome; no…. depressing really.

Don’t get me wrong, it’s not as though I was unaware I was disabled until this magazine brought it to my attention. I may be far too grumpy to be one of the smiling people in the pictures, but I am very aware that I also use a wheelchair. I actually have 3 wheelchairs to be aware of; my primary, power chair, a manual, and a pretty awesome, all terrain one with tank tracks instead of wheels. The power chair is parked right beside the recliner I’m sitting in at this exact moment. If I wanted to go anywhere, I’d have to transfer  into it. Even if I were to sit here for the rest of the day, I would have to move it in order to see the entire TV screen, so I can’t be in denial as to its existence and/or depressed by my dependency on it………..,or can I ?

Image from psycom.net

Have you ever heard of the Kubler-Ross 5 stages of grief; Denial, Anger, Bargaining, Depression, and Acceptance? You probably have, but did you know that the stages are a nonlinear cycle? As many times as I learned about this process in college, etc, I apparently didn’t grasp that part. I guess I always thought of it as an orderly checklist, “Ok, I’m done with denial. What’s next? Oh, it’s time to be angry now.”, or, ”Whew! I’ve finally gone from depression to acceptance. Depression sucks and I am so glad I won’t have to do that again”.

Yeah, yeah, you already knew the stages don’t necessarily have to be in that order, although, if they weren’t, they wouldn’t make the cool acronym DABDA. You probably already knew that you can be in multiple stages at one time, and that nothing says you can’t go through a stage more than once, right?  Well, I didn’t, or I did and forgot it, or maybe I’m just now grasping the core concept of “nonlinear”, but this is my lightbulb moment, so let me have it. 

I’ve denied (how many times do you have to fall before you admit somethings wrong?) I’ve been angry (…um…a lot?…I don’t have anything witty for this), I’ve bargained (If I can just get back to using my rollator, I’m going to do….), I’ve been depressed (also a lot, because multiple sclerosis is depressing), and I’ve accepted (so, so many things that I didn’t want to and never thought I’d have to). I’ve repeated the cycle so many times since I was diagnosed that you’d think a little melancholy over a disabled magazine taking the place of the abled magazines that used to occupy my side table wouldn’t faze me, but it does. Apparently, getting a magazine for disabled veterans was a fresh reminder that I am one and it tossed me right back into the denial and depression steps of the cycle.

I suppose, when I’m ready, I’ll move to the step of accepting this “new normal”, just like I eventually accepted all the “new normals” each time the goal posts moved. It helps to know that accepting  doesn’t mean liking, finding the “silver lining”, embracing, or otherwise being happy about. It might be the final step in the cycle, but accepting is still part of grieving.

Please don’t misunderstand. I am genuinely happy to be loved and taken care of by my family. We are so blessed that all our needs are met and I am very fortunate to be home with them instead of the alternative. I am grateful to have the tools available that allow me to participate in my own life, so I guess I’m grateful for and accepting of my wheelchair, but I refuse to be grateful or happy that MS put me in one. 

I guess that’s another example of a multiple sclerosis paradox. I’m grateful that there’s an alternative to crawling across the floor, but I’m not grateful that MS took away my ability to walk. 

Maybe I should publish my own magazine. I wonder if the name, “Grudgingly Disabled”, is already taken?

“Be sure to pick up your copy of next month’s “Grudgingly Disabled”. Articles include: 10 things to say to people who tell you that ‘you don’t look sick’ and MS support groups; how to love the camaraderie while hating that you were ever qualified to join one”. 

Then again, it probably wouldn’t attract (m)any advertisers so it would be really expensive to publish, not to mention, a lot of hard work. I don’t really care for either of those things, so maybe I should just start a snarky, lazily written blog instead.

Categories
Background Life with multiple sclerosis

New Shoes

I’m throwing out an old pair of shoes. I realize that isn’t very remarkable sounding, in and of itself, but they’re running shoes. They are, in fact, the last pair of running shoes I ever bought and the last ones I actually ran in. 

I was never fast, but for most of my life, I enjoyed running for long distances. The army sucked some of the fun out of it, as it is wont to do, but I liked it enough to make it an activity that I regularly did, unforced. In the months before selection (SFAS), I even got 3rd place in my age group for a half marathon. It took place in January, was called the “Frostbite Half Marathon”, and there were only 2 other fool….I mean, runners in my age group, but I’m still proud. 

I came back from my last trip overseas in the fall of 2011, knowing something was definitely wrong with me and started knocking out the things I knew about but had been ignoring. I had knee surgery before in 2002 but had torn a few things since then and had a kneecap that would occasionally end up dislocating to the outside of my leg, so I had a second knee surgery that December. After rehab, this was followed by an ankle reconstruction (modified Brostrom Gould) in the summer of 2012. You know you’ve let it go too long when the foot and ankle specialist at the teaching hospital asks if he can let some residents see this and one of the 5 who come in to see a positive ankle drawer sign asks if you were in a car wreck. After recovery and rehab, I figured I had that annoying foot drop problem fixed and was ready to get back to the way things were. To celebrate getting back to normal, I treated myself to new running shoes.

By “treating myself”, I mean I went to one of those places where they make you walk on paper with wet feet and stand on a special panel that scans your foot alignment, weight distribution, pressure points, stock portfolio, personal hygiene, etc, and recommends the right shoes for all your problems. Fortunately, lots of people had my exact foot issues because my shoes were in stock right there on the shelf and were less than twice what they would cost at a store where I just walked in and picked them out myself without expert assistance.

I got to run in them a few times, but not nearly enough to wear them out and commit them to lawn mowing duty, which is the last step, (pun 100% intended), of a shoe’s life. Instead, I kept them around wearing down the side of the toe where my foot dragged, rather than the tread and soles. 

They’ve been good shoes, but they’re just an old worn out pair of shoes. It’s time….actually it’s  past time to let them go, so why the mixed feelings, you ask? Ok…nobody asked, but I’ll tell you my thoughts anyway. After all, if you’ve read this far, you’re sort of obligated to finish this post.

It’s not the shoes. It’s a link, (maybe a desperate little lifeline) to the pre-disabled past. I’m in a wheelchair wearing running shoes that I’ve actually run in before. Mrs. Havisham was right, it’s perfectly fine and normal to leave out the cake and decorations til they rot.

It’s time to go on to the next chapter. I don’t have to like it, I don’t have to “embrace” it, (whatever people mean when they say that), but it’s time. Really, I’m already there, I’ve just been hanging on to the little things that make the book of my life sometimes fall open to those pages. It’s good to look back on fond moments in the story. In fact, I’m pretty sure that’s normal, but the next chapter is waiting, and the next, and the next, until the book is done.

I’m getting new shoes. They’re slip on with laces for adjusting the fit…..and for show. They’re supposed to be easy for me to just slide into without the back part folding in. We’ll see when they arrive, but I have great expectations for this next step.