Tag: ppms

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Life with multiple sclerosis

Skin In The Game

Just in case that was too much of an American idiom

When I was getting ready to leave Fort Bragg after 2 years of the qualification course, I had a few days of idle time before my various appointments in the clearing process began, so I decided to be proactive for once. I started by paying a visit to the personnel (think human resources) section to let them know I had an appointment in a few days time and to ask what I should do, or bring to make it as smooth as possible. They congratulated me on my foresight and went to pull my file so they could see if everything was in order and if anything was missing. The clerk returned after a moment with a nearly empty folder. It turned out that almost everything was missing and after asking, hopefully, if I was just starting instead of clearing, they said there was going to be a delay as they tried to piece my records together.

Fortunately, years before, on a wiser person’s advice, I had started an “I Love Me Book” and happened to have it with me that day. It’s simply a large 3 ring binder with dividers and document protectors that contains a mostly, chronological record of everything I’ve ever done in the military, including my time there at Ft. Bragg. Because of it, I was able to provide copies (no way I was giving up my originals) of every set of orders, every course completion document, every evaluation, and so on.

Proactive, because I’d been in the army for more than a day and knew things, especially paperwork, got lost, or misplaced? That too, but more importantly because it was my record, my documents and I had a huge personal interest in them being accurate, much less, actually being there. I’ve crossed paths with some amazing people in my time in the military, but no one cares about me like……me. You could say I have skin (quite a bit of it, in fact) in this game.

Something else, another “game”, that I do, quite literally, have all my skin in, is my healthcare. Even if I didn’t have multiple sclerosis, no one should be more involved with, or care more about my well being than me. It bothers me to hear someone tell me that their doctor, etc is the head of their healthcare team. Wrong! You should be the head of your healthcare team.

I see 2 neurologists, both MS specialists. There is no doubt in my mind that either one knows way more about MS than I do. That’s why I see them. Otherwise, what would be the point? They know me, know my history, abilities, progress, and lack thereof. It would not be stretch to say they care about my health,……..but not as much as I do.

I hate to use cheesy motivational phrases, or sound cliche, but, I’m more than my MS. The neurologists are very high up on the list of my healthcare team members, but certainly not the only ones. They know more about MS than I do and that’s how it should be. My orthopaedic doctor is aware that I have MS and vaguely remembers a lecture on it in medical school, but has forgotten more about shoulder anatomy than I’ll ever know and that is exactly what I need/want. The list goes on and includes, my GP, physical therapists, ENT, and so on. The point is that each one knows and is an expert on, a part of me, but I know me.

With my progressive MS and level of disability, there is never a waking moment when I forget that I have this disease. You might say that it has my undivided attention. I’ll be the first to say that your MS isn’t my MS. Experiences, disease types, disability levels, etc, vary greatly, but if you have it in whatever way, shape, or form, you are sort of obligated to learn as much as you can about it. Not thinking about it, or bothering to learn about it, are not good options.

You are your own best advocate. So advocate.

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. 

Categories
Life with multiple sclerosis

Bad Landing

From the US Dept of Defense https://www.defense.gov/Explore/Inside-DOD/Blog/Article/2062418/airborne-school-what-its-really-like-learning-to-jump/

Given that I have primary progressive multiple sclerosis, my genetics probably aren’t all that great, but there are a few perks, one of which is my bone density. I sink like a rock in water but have never broken anything, despite all my clumsiness and mishaps. Well, I have broken my nose 3 times but that hardly counts. I wish I had a good story or 3 to go along with those incidents, but when I say, “I” broke my nose, I mean that I was the responsible party each time. I should probably make up something involving a fight, a daring rescue, or something of that sort, but there are just too many witnesses to dispute my claims. 

Actually, come to think of it, my good bone density is a mixed blessing at best. I like the water and enjoy being in it, but it might be nice to be able to float. I am proud to have never broken a bone, but something’s got to give, so instead, I ended up with 2 knee surgeries, an ankle reconstruction, have a bulging disc in my neck, and have dislocated both shoulders, the right one, several times. Even though my left shoulder was only dislocated once, it is the more memorable experience because of how it happened. 

When I was a young Ranger, we were doing an airfield seizure exercise at Cecil Field in Florida and while jumping in late one night my enormous watch (I like big, dumb, gadgety watches*) became tangled in the suspension lines of my parachute. When I landed, my attention went to my trapped left arm and instead of activating a canopy release assembly and deflating my chute, I started to unwrap the lines from my wrist. Unfortunately, the wind picked that moment to gust and instead of dragging me across the ground by my harness, my parachute stretched out the suspension lines wrapped around my wrist, extended my arm, and slowly pulled my shoulder out of socket.  

For years, that was my 10 when asked to describe my pain on a scale from 1 to 10 with 10 being the worst pain I’d ever felt. Later on when I first dislocated my other shoulder, it happened quickly and before it popped back into place, there was a moment when I marveled at how little it hurt compared to that other incident. I suppose there’s a lot of differing factors that went into these two experiences but the general mechanism of injury was the same, something tugging me by the wrist until my shoulder dislocated, so why the big difference in the pain levels? My personal theory is that it was the mental aspect that made the difference. In one situation, I was surprised, with no time to react or resist and in the other, I knew what was about to happen, tried to stop it from happening, but had to watch it slowly happen anyway. Now that I think of it, that would have hurt me if I’d watched it happen to someone else, so I’m sure the mental factor made up a lot of, if not the majority of the difference.

MS is like that………..What, too abrupt of a segue? This is a multiple sclerosis blog, so you knew I’d eventually make some sort of comparison, right? 

Like I was saying, MS is like that. Don’t misunderstand, it would still be bad (not to mention, really confusing) if I suddenly woke up like this one day, but having it slowly happen while I watch, knowing what’s happening, but powerless to stop it, feels worse somehow. For me, the parachute isn’t pulling anymore. No new lesions and no active ones in 5 years (Ocrevus?), but with no way to heal the damage (remyelinate), those demyelinated areas eventually die, and the disability continues to progress, even if the disease doesn’t. 

The parachute isn’t pulling anymore, but the shoulder won’t pop back in. Great….now I’ve depressed myself. 

Come on remyelination therapy.

*My home page picture was taken about 12 years after the events of this story. Note the big, gadgety watch. Joke’s on you parachute, I didn’t learn anything.