The new year is just a few days away, so if you haven’t already, you might want to start thinking about resolutions, if you’re so inclined. Although I personally don’t bother these days, about half of American adults do, although that number is declining. One study suggests that about 55% of these resolutions are health-related, such as losing weight. It also points out that the majority of people don’t keep their resolutions.
Even before multiple sclerosis (MS), I wasn’t big on making New Year’s resolutions. If put on the spot, I’d be determined to do something, or do it better, but rarely did I formally “resolve” to accomplish a goal. I suppose the main reason then was that it wasn’t an emphasized tradition in my family. The main reason now is because goals require a plan, and MS makes planning nearly impossible.
From the military, and particularly the U.S. Army Special Forces, I learned to plan in detail. Hope was never a legitimate course of action, and every possibility had to be accounted for by layers of preparation. Our standard was to have a primary, alternate, contingency, and emergency plan (P.A.C.E.) to cover any scenario.
With MS, every hour, day, and week is an unforeseeable and constant “what if.” I like calling it a predictably unpredictable disease, so it isn’t a stretch to say that it’s often expectedly unexpected, too. Trying to anticipate random bouts of fatigue and dealing with constantly varying abilities, both physical and mental, make a mockery of the most detailed plan. There’s a joke that a plan is simply a list of things that aren’t going to happen. MS can make that joke an irritating reality.
Even in my past, no plan was absolutely perfect, and you couldn’t have standard reactions to every imagined event. Changing plans on the fly happened, and I was proud that I could react, but reacting instead of acting quickly becomes tiresome. In the present, my primary progressive multiple sclerosis makes every plan seem like less of a plan and more of a series of reactions.
Spontaneity can be fun, but being forced by MS to constantly react is not the same as being spontaneous. Instead, I have become flexible — unwillingly flexible — and while that’s accommodating, it’s not very fun.
I mentioned that with a rigid plan, hope is not a course of action, but maybe with MS it is. It might actually be one of the best courses of action available to us. Maybe some healthy, realistic hope and faith are the reaction that can become an action.
I think I will make a resolution this year. While I still intend to work hard at dealing with all that MS can throw at me, I resolve to let myself hope.
If you weren’t aware (I wasn’t), last Friday, June 17, was National Eat Your Vegetables Day. The day wasn’t created to tout any special diet per se, but to increase awareness of the benefits of vegetables in a healthy diet. If you were already aware of those benefits, then at the very least, it raises your awareness that there really is a day for everything.
Growing up, my parents made certain I was aware that eating my vegetables was not only a good idea, but also benefited my health. When I protested, they would offer words of encouragement like “They’re good for you,” “You’ll grow up big and strong,” or “You’ll live longer” — which, now that I think about it, may have actually been a thinly veiled threat.
My parents rarely used it, but one of the more common phrases that parents use to get kids to eat their vegetables, consume a disliked food, or finish all their dinner is the one that invokes “starving kids” in some far-off place. You know the one: “You have to finish your dinner because of starving kids in _____.” The name of the faraway land varied, but the message was the same. Someone, somewhere has it worse than you, so your complaints are not valid.
Multiple sclerosis (MS) and each individual’s experience with it are so variable that it would seem ridiculous to compare symptoms, but people, myself included, do it.
We expect that kind of comparison from people without MS. They all seem to know someone with multiple sclerosis who is better off or more able, or they tell us not to complain because they know someone worse off. Those of us with MS, or another disability, tend to do it, too.
There are several types identified, but even within the same type, my MS isn’t your MS and vice versa. I know that, and I still have to remind myself, almost daily, not to compare my situation with someone else’s and base what I say or how I feel on whether I think I have it better or worse.
My multiple sclerosis is the primary progressive type and has been aggressive, but I didn’t wake up in a wheelchair one day. There were steps — or a lack thereof (ouch! I just hurt my own feelings) — along the way, and with each step I based my actions on comparisons. For example, I can’t complain about my limp because others walk with a cane. I shouldn’t complain about my cane because others have to use a rollator. I should keep quiet about my rollator and be glad I don’t need a wheelchair. And so on.
Conversely, I sometimes think that my meager accomplishments pale in comparison or aren’t worth mentioning to people who I perceive are “better off.”
I touched on this briefly in my last column, so I did a little research and found out that this is a logical fallacy — specifically, the fallacy of relative privation. It essentially says that you can’t dismiss a problem because you perceive that another problem is more or less important.
Do you do this? I know I do — both ways, in fact. I feel like I shouldn’t feel bad about things when I think someone has it worse, or feel good about things if I think someone has it better. I think this could be a part of why those of us with chronic diseases often just say, “I’m fine.”
Yes, yours truly routinely falls into this logic trap. As if multiple sclerosis didn’t have enough problems of its own, I can always find another one. I daresay I’m not the only one who does this, and I doubt it’s the only trap I’ll run — well, wheel myself — into.
Odd way to begin a column, I know. I suppose I’d better explain myself.
That phrase regularly appears in memes and other pop culture media as an expression of dislike for an image or tweet. No one seems to know where or from whom it originated, so I don’t feel too guilty about using it for my own ends.
For me, it’s an expression of both gratitude and abhorrence at the same time. For instance, you can be grateful for the spirit in which a gift was given while despising the gift itself (that sweater from your grandmother, for example). It’s a classic contradiction, and while I certainly don’t consider multiple sclerosis to be a gift, it works well to shed light on a phenomenon that I’ve dubbed the multiple sclerosis paradox.
Let’s look at a few examples.
For obvious reasons, I seek the majority of my camaraderie, advice, and emotional support from the multiple sclerosis and rare disease community. The people I interact with in this small community, via support groups, BioNews (the parent company of this website), online forums, and social media platforms, are some of the most wonderful people I’ve ever known, but I wish we’d never met.
Harsh? Yeah, it is. I’m afraid there’s really no way to soften the blow. Put a slightly different way, I’m so happy to be a part of this community, but I wish none of us qualified for it. There’s no animosity intended. It’s just a somewhat painful contradiction, and I don’t like it at all. Then again, I don’t think I’m supposed to.
As another example, my family and friends go out of their way to accommodate my disability, yet they somehow don’t make me feel disabled (a kind of paradox in and of itself). I am inexpressibly grateful, but I wish they never had to do so because I wish I didn’t need any accommodations.
Along those lines, I didn’t plan on it, but I genuinely enjoy being retired at 47. I love being at home with my wife and young children (I should say that more), but I’m not happy that having a disease was what made it possible. I can be a bit of a handful at times, but I think they like having me around, even if they don’t like the reason I am.
Moving on, I have wheelchairs, ramps, ankle-foot orthoses, reachers, an intrathecal baclofen pump, and so on. I’m glad these tools exist. After all, they keep me involved in my own life and the lives of my loved ones. I wouldn’t want to consider their alternatives, but I wish I didn’t need any of them.
I’ve learned a great deal about MS since I was diagnosed (you could say it has my undivided attention), but I wish I’d never heard of it. I like my neurologists, but I wish we’d never met. The research they do is fascinating and fills me with hope, but I wish there were no need for them to do it and for me to have hope in it.
These are just a few examples of the multiple sclerosis paradox. I invite you to leave a comment detailing your own examples. Thank you for reading this column, but I wish there was no reason for you to ever need or want to.
Here in the U.S. we recently celebrated our Independence Day. In typical, inexplicable, fashion, my friends and family went above and beyond to include and accomodate me. I’d like to pretend it’s because I’m so likeable, but it really is, inexplicable.
Nothing will show you who your true friends are quite like a chronic disease.
Typical of our celebrations, there were all sorts of entertainment, a chance to be among people you love, and food. Lots and lots of food, centered around copious amounts of grilled meats.
It would be a gross exaggeration to say that I ate my body weight in barbequed ribs; maybe the body weight of one of my kids. The point is, I ate a very big meal and paid for it by being sleepy and overly sluggish for the rest of the day. More so than someone without multiple sclerosis and that’s not an exaggeration.
Like many, I was prone to a “food coma”, properly known as postprandial somnolence, after a big meal long before I had my first MS symptom. The reasons or possible causes include things like post meal blood flow, time of day, size and composition of the meal, etc. However, people with MS seem to be more affected, (or perhaps, more commonly affected?) based on a few studies regarding MS and PPS.
Does this imply that I experience PPS because I have MS, or that I always experienced PPS and it’s just more noticeable/made worse by MS? Is it simply that, like with everything else, my body has to work several times harder to accomplish something and these are the results?
That may just be all philosophical. My personal takeway is that there is no part of my life that is unaffected by my PPMS. Not even gluttony, apparently.
Will I take precautions? Eat smaller portions? Eat less carbohydrates?
I’ll try, but when good food is involved….probably not.
Bridge across the Helmand River. Photo by Mohammed Omar Lemar
A long time ago……no, too depressing.
Some time back……no, too vague,
Once upon a time…..yep, that’ll do.
(Ahem) Once upon a time, I found myself with my ODA, sitting on a bridge over the Helmand River in Southern Afghanistan.
A pre-dawn raid was being conducted in a nearby village by another team and we were there to stop people from leaving the party early via the bridge. Due to the timing, we were forced to skip our morning coffee and as the sun rose and things calmed down, our Afghan Army counterparts broke out the necessary bits and began to brew up a pot of tea.
When it was finished, they offered us some and a teammate asked if it was safe to drink and did I want a cup? I replied that if it was made with bottled water or he saw it boiling, then it was safe and yes, I would very much like some morning caffeine. He went back over with the interpreter, who verified that it was indeed made with bottled water and returned with a cup for me.
As I sipped mine, I looked out over the river and watched two men washing a car in the shallows, a man and his son watering their goats by pushing the whole herd out onto a sandbar, and several women washing clothes while 3 children bathed nearby.
I was near the end of my cup, thinking that the tea had a rather earthy aftertaste and as I watched one of the goats lift it’s tail to relieve itself in the slow flowing water, I felt some grit between my teeth. The tea was sweetened with raw sugar, so an undisolved grain or two was to be expected, but I looked at the, now visible, bottom of my cup and upon examination, the grit was unmistakably sand, with a small pebble or two added in.
I waved the interpreter over and explained my concerns. He went back to ask our tea makers about the water quality. He was raised in Southern California and even though English wasn’t his first language, it was the one he slipped into as I heard him exclaim, “What??!! Oh, no!”.
Turns out that there was a bit of misunderstanding/misinterpretation on both sides. The water had come out of a bottle. An empty bottle that had been filled at the river’s edge, near the base of the bridge. It had also not been boiled because time was variable and the thought was that boiling would make it too hot to enjoy right away.
I dug through my bag and enjoyed a nice chaser of Ciprofloxacin and gave some to everybody that had drank the tea. Well, almost everybody. I didn’t get to everyone in time and that unfortunate soul had to suffer, both the wrath of the river and my less than stellar bedside manner, but that’s another story.
The point of my story today is to make an addition to a previous post about understanding the language and managing expectations between you and your healthcare team. The information you and your team share has to be clearly understood by both parties, as do any expectations. As the head of your own healthcare team, (which you should be, by the way), the responsibility falls on you.
Those of us with multiple sclerosis have, medications, therapies, assistive devices, etc, etc, to consider. It behooves you to understand and have a realistic view of the risks and/or benefits of all these.
For example, I have an intrathecal baclofen pump. The decision to have one implanted was not entered into lightly and was not made before weighing every expectation, possible benefit, and risk. In the end, it was this honest and, understood by all parties, “weighing” that made me decide to accept the risks and inconveniences in favor of the possibility of a better quality of life.
That’s an extreme example of both sides understanding the difference between bottled water and water from a bottle, but hopefully the point is made. When it comes to MS, make sure you understand what is being said to you and that what you’re saying is understood.
Before Special Forces, I was an FO (Forward Observer) in one of the Ranger Battalions. One of our primary missions was seizing airfields and since we lived on one, we had the opportunity to practice a lot. One particular evening, I exited the plane, said a prayer of thanks when my parachute opened (first jump….100th jump…I was always grateful), and prepared to land. It was not one of my better landings. My rucksack, at the end of its 15 foot lowering line, smacked into the concrete runway…..no, really…several other Rangers heard it “smack” and I smacked into the grass on the edge of the tarmac. I was fine, but when I collected my kit, a nice new piece of gear, in my ruck, that I had the “honor” of jumping in, had not survived the landing.
The next day the Company 1st Sergeant called me into his office and when I turned from closing the door behind me, I saw the broken piece of equipment sitting on his desk. He was known to smile on occasion, but this wasn’t one of those occasions.
A week earlier, he had dismissed that particular item as just another piece of FO nonsense, but as he shouted the name, manufacturer, and exact cost at me, I knew that he held it in higher regard than he had let on.
When he paused, I let him know that although I was a little sore, I was unhurt. He stared at me in silence, but his slightly opened mouth and the twitch below his left eye betrayed the fact that he was secretly glad I was ok. He even summoned my immediate supervisor and had him take me outside for an hour or so of vigorous exercise just to make sure. As the two of us left to assess my range of motion, the 1st Sergeant’s parting words to me were a resigned, almost awestruck, “If I gave you two ball bearings and told you to cross the street, you’d break one and lose the other.”.
Multiple sclerosis can be like that.
Ha! You were probably wondering how I was going to transition from rambling, boring story to something pertinent about MS.
Abruptly, apparently.
MS really is like that, in that many of its symptoms don’t seem to have a good option. Just a bad one, or a different, maybe equally bad one. Broken (dysfunctional), or lost.
Due to the effects of progressive multiple sclerosis, I have no use of my legs. Before I had my intrathecal baclofen pump implanted, spacticity kept my legs stiff, or sometimes spasming from hyperreflexivity. When they were stiff, I could pull myself to a standing position and spin slowly around into my wheelchair, like a clown tottering on stilts. Even if we call that “functional”, the spacticity was uncomfortable, to say the least, and really affected my sleep.
Once the pump was installed and the spacticity was controlled, my legs were limp. Comfortable, but even less useful. Sleeping through the night is nice and we are still adjusting the baclofen dose for maximum comfort with maximum function, but right now my legs are merely decorative.
So, dysfunctional, or lost? I chose lost, but I’d rather have functional. There wasn’t a third ball bearing. Break one and (or) lose the other, remember?
My abdomen was also affected by spacticity and now, by the baclofen pump. Unpredictable bowel and bladder function because core muscles are constantly clenched, or unpredictable function because everything is relaxed? I truly am better off relaxed; it’s the better choice of two bad ones, but it still isn’t the one I’d prefer.
When I could walk, I used a nerve/muscle stimulating device to counteract my foot drop. It did lift my foot, but it did it via electric stimulation, ie a shock. Plus, people would see the cuff on my leg and occassionaly assume I was under house arrest. (I guess I look like I should be….. at a minimum)
MS has choices…..just no good choices. Those are just a few examples. We, unfortunately, can’t choose to not have it. We’re just given our ball bearings and told to cross the street.
Image from https://www.whats-thesayinganswers.com/i-understand/
I have never been shot.
I realize that if I didn’t have the background I do, that would be a very odd statement. As the team medic, I saw plenty of gunshot wounds and packed/bandaged a few, but thankfully, never had one of my own. I would venture a guess that between seeing, treating, or just talking with people who have been shot, I have a pretty good awareness of the experience. However, I don’t…….. I can’t really, understand it, because it’s not my experience.
When people find out that you have multiple sclerosis, many feel like they should say something and usually, they mean well. Certain things grate on me depending on their delivery, timing, my mood, etc and there will be plenty of posts on this blog covering them in detail. Today, I want to cover, “I understand”.
People say, “I understand, what you’re going through……how you feel……what it’s like…”, and so on and 99% of them probably mean well. There is that 1% that doesn’t, but they’re easy to distinguish because they usually follow it with something along the lines of, “If it was me, I’d do……”, or, “What you ought to do/try is……”. The implication being that whatever you’re doing now isn’t good enough. We’ll cover those people another time.
For the 99% that mean well, I’m genuinely grateful….. 99% of the time. Sorry, I’m not perfect. No, no, I can be honest. If you catch me at the wrong time, on the wrong day, etc, my mood may vary, but most of the time, I know what you mean when you say, “I understand”, and I’m grateful.
Thank you, from the bottom of my itty bitty, grinch heart, thank you. I know, you’re trying to understand; you want to understand and that means a lot, it really does. Here’s the thing. You can’t understand. I don’t even want you to understand (I spent a long time thinking I did), because that would mean you were just like me and I don’t want that for you. What I do want is for you to understand……that you don’t undertand and that that’s a good thing.
Don’t try to understand, but do try to be aware. Being aware is so much more than just knowing something exists. I say that because I once thought that was all it meant. Sure, I want you to know it exists, but I want you to be aware of what it does, why I cancelled plans at the last minute, why I keep dropping my fork at dinner, why a full day in the sun at the beach doesn’t sound exciting to me, and why I’m so different than your cousin’s, friend’s, uncle, who also has MS.
That last part is so important. I’ve mentioned before that I’m only part of one MS forum, the Kurmudgeon’s Korner. I think that one of the reasons it is a good fit for me, is that even though we all have MS, are very, very, aware, and can empathize with each other, we don’t presume to understand everyone’s unique experience with their unique disease process.
Maybe, “get”, as in,”You have to get MS to ‘get’ MS”, doesn’t mean understand completely. I have it and I don’t fully understand it. No one does and no, I don’t think that’s too bold of me to say. The best of my family and friends don’t understand, know they don’t understand, don’t try to understand, but are keenly aware of my limitations and the predictably unpredictable nature of the disease and inexplicably want to hang around me anyway.
As with everything I write, this is all just my opinion and as much as I’m loathe to admit it, I don’t know everything.
Image from Medicus Health https://www.medicus-health.com/hardside-cooler-small-13-qt.html
What does this have to do with advocacy, or creativity? I promise there’s a reason for my image choice….other than being a pretty good attention grabber.
Some time back……I’ve learned that if I actually think about how far back it really was, it will unnecessarily depress me, so, like I was saying, some time back, I found myself with my team in Kandahar, Afghanistan trying to catch a flight back to Bagram. It was unscheduled and we kept getting told that everything going that evening was full and to check back later.
“Later” kept turning into even later and was on the verge of turning into never. This was probably because when the bored Airman at the desk told us that, “The Airforce is not a taxi service.”, a less than diplomatic teammate replied that that was exactly what it was. It was decided that he would no longer be sent into the terminal to inquire about flight availability and that I would perform the next “check back later”.
As luck would have it, I bumped into the Group veterinarian while waiting. He asked if I was going to Bagram, and when I said yes, he asked if I would carry a package there for him so it could be sent back to the states via courier. The package turned out to be a cooler, sealed and marked with a biohazard symbol, and contained tissue samples that were to be tested for anthrax. I was nothing if not helpul, so of course I was happy to carry a cooler full of what could be samples containing a potentially fatal disease. Months later, I would catch Q-fever while helping that same veterinarian vaccinate livestock as part of a civil affairs project and after that, I was way less inclined to be so helpful, but that’s another story.
No matter, it was soon my turn to go to the terminal desk and ask if there was any space available on a flight to Bagram. I absentmindedly set the cooler on the desk and after the Airman gave his automatic reply of “everything’s full”, he looked up, saw it in all of it’s sealed, stickered, glory and asked, “What’s that?”.
I was beyond tired at this point and forgot to add words like, “potential”, or “to be tested for” to my reply of, “anthrax samples”.
We got several rows to ourselves that had just, that moment, become available on a C-17. I even had an empty seat next to me to set the cooler on and sprawl into as I snoozed.
That story is an example of creative, albeit, accidental advocacy and I don’t recommend that particular method for either a real airport or a healthcare visit. In both cases, not only will you not get what you were after, but you will very possibly be tased and/or pepper sprayed, handcuffed, and arrested…..not necessarily in that order. The point is, sometimes you have to go the extra mile when advocating for yourself or someone who is unable to.
I am able to advocate for myself…..most of the time. My wife accompanies me to appointments whenever she can, to fill in things that I’ve forgotten*, or (maybe more importantly) to ask questions and add to the discussion from the perspective of a caregiver. I realize my situation may not be your situation, but there are things a caregiver, physical therapist, occupational therapist, etc, etc, could add to your next neurology visit. They may not be coming with you, but believe me, it’s worth asking them for their input.
I mentioned it in my last post, but if you haven’t already, take the time to learn about multiple sclerosis and whatever medication, treatment, therapy, device, and so on, that you’re asking about. It’s not about sounding smart, or using big words, although if you lead off with, “I saw on Facebook”, or “I googled______”, you should probably immediately follow it with something that shows you’ve looked a little deeper into it. It’s about sounding like you care enough about the answer to have put some effort into the question. If you don’t like the answer, be prepared to ask why that answer was given. If your provider can’t, or won’t explain the answer, it might be time to get a second opinion.
Yes, I’m aware there might not be options when it comes to providers. I get most of my care from the department of Veteran’s Affairs and like many taxpayer funded healthcare systems, you get what you get (my kids would add, “and you don’t pitch a fit”). I know I have been extremely fortunate in my neurology care, but I would like to think it’s at least partially due to my being a successful advocate for myself.
I don’t bully (I don’t even think I’m that assertive), I don’t manipulate, coerce, or even pitch a fit and I don’t suggest you do either. I do, however, suggest that you be your own advocate and that you advocate creatively if need be.
If MS is ever cured, it will be the result of someone asking the right question.
*There is some debate as to why I forget things. I say it’s because I have MS. My wife’s theory is that I’m getting ol……you know, it’s so far fetched and harmful to my pride, that I won’t mention it here.
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.
I started a Valentine’s Day post, but couldn’t make it work. I was trying to be funny about being diagnosed 8 years ago on Valentine’s Day, but it ended up as kind of a dark post and that wasn’t what I wanted. I’m sure there will be plenty of those, but I didn’t want to go that route on the 14th.
Next, I had a swallowing study and a visit with the speech therapist. Yeah, multiple sclerosis doesn’t stop with arm and leg muscles, so I’ve been choking more and more and having a weak cough doesn’t help clear my airway when I aspirate stuff. Of course I didn’t choke once during the barium swallow, so other than the barium drinks and coated snacks, including half of a cookie, it wasn’t a super productive experience. I did get a little device to strengthen my expiratory muscles so I can cough, etc forcefully. It’s a nifty little exhalation resistance device and seems to be working well. If it made trumpet, slide whistle, or whoopee cushion sounds (I have 3 little boys), it would be just about perfect.
A couple days later it was MRI time. My annual brain one (no new or active lesions) and both shoulders (not great reports, but I’ll get to that). I’m not claustrophobic and my hearing isn’t great, so as long as I have well placed ear plugs, I just go to sleep in there. I had planned on one long scan (and nap), but for a variety of reasons, they treated each body part as if it belonged to a different person and I had 3 scans with about 30 minutes in between.
My implanted baclofen pump is MRI safe and shuts itself off when it detects the magnetic field, then back on 10 minutes after it no longer detects it. Between MRI 1 and 2, I stayed in the MRI suite and apparently didn’t get far enough away, so the pump stayed off long enough to set off the alarm. It was the 2 tone, critical alarm, which sounds a bit like a European ambulance, and coincidentally, like any number of hospital alarms, so I didn’t even notice until I left to grab lunch before MRI 3. I was actually in the restroom when I realized that the beeping was coming from me. I noted the time and sure enough, it went off again 10 minutes later and 10 minutes after that and so on.
One of those times was in an elevator and the other passengers started to look around for the source of what was obviously an alarm before all turning to look at me. No one said anything, but you know it was just the embarrassment of having to ask if I was beeping that stopped them. I felt like a person compelled by shame to confess to farting on an elevator, “OK, it was me! That awful sound came out of me!!”.
None of us said anything, but I probably looked guilty enough that everyone knew it anyway. The perfect scenario would have been if someone had worked up the courage to ask and I had the wherewithal to stare back,wide eyed, and hoarsely whisper/croak, “Oh no!! Run!! Save yourselves!!”.
Then again, I bet the penalty for causing a panic on a Veteran’s Affairs hospital elevator is pretty stiff.
I haven’t completely lost my touch. The MRI techs were a little nervous about my pump anyway, so when I told them the alarm was going off, there was a little hand wringing and they wanted to know if they should do something, or call someone. I kept a nice, straight face and told them I was meeting the pump rep after the 3rd MRI anyway (standard procedure) and probably wouldn’t explode for an hour at least. This didn’t ease their minds at all, but my smirk was probably big enough to be seen on my head/brain scan.
Both are MRI images of my right shoulder
OK, I’ve digressed enough. My shoulders are not good….well the right one in particular. Both have been dislocated in the past, the left, just once, in the parachute incident I wrote about before and the right about 3 times, in way less exciting incidents. I knew the right one was getting worse but ignored it and had my bad knee and ankle fixed instead because they were my more important, weight bearing, joints…..right?
MS, thy name is irony,……or maybe mean spirited coincidence? I’m not sure how that works, but I am sure that turning my arms into my weight bearing, wheelchair using, transferring, etc, limbs, is just making my shoulder problems worse. I’ll post the MRI report at the end of this post, but the impression I get is that we’re past the point of more rehab and probably past the point of steroid injections too.
I’m afraid of what the ortho doc is going to say, but I guess it’s because I know what he, or she is going to say. I really can’t afford to let this get much worse, but I dread being down to one fully functional limb while I recover from whatever the “fix” is. I’m hoping it’s a minimally invasive arthroscopic clean out, debridment, cartilage shaving/planing surgery with no weeks of immobilization. One that I can move and rehab as much as I can stand after. I know “hope” isn’t a course of action, but I’m daring to hope anyway.
Here’s the report. Maybe I’m worried about nothing, but it doesn’t sound very cheery to me.
Findings:
Marrow: There is no bone contusion or fracture.
Acromioclavicular joint: There are severe degenerative hypertrophic changes at the acromioclavicular joint with cystic change in the distal clavicle at the joint and bulky osteophytes extending inferiorly from the joint.
Subacromial and subdeltoid space: No significant collection of fluid in the subacromial or subdeltoid space.
Rotator cuff tendons: Tendinopathy supraspinatus tendon with low grade undersurface partial tear at the insertion site posteriorly. Mild tendinopathy infraspinatus tendon. The subscapularis tendon and teres minor tendon are unremarkable.
Rotator cuff muscles: Unremarkable. No atrophy or edema.
Glenoid labrum: There is a 0.6 x 0.7 x 0.9 cm para labral cyst associated with the posterior superior glenoid labrum consistent with underlying labral tear. Possible labral tear at the junction of the anterior inferior labrum at the site of a probable small full-thickness cartilage defect.
Long head biceps tendon: Intact. Small amount of fluid within the extra-articular tendon sheath which could represent mild tenosynovitis or physiologic medication with small glenohumeral joint effusion present. Additionally, there small loose bodies/debris within the tendon sheath of the extra-articular long head biceps tendon.
Glenohumeral joint: There is mild thinning and irregularity of the glenoid cartilage with small full-thickness cartilage defect suspected at the anterior inferior glenoid labral junction. Additionally, there is full-thickness cartilage loss anterior-inferior glenoid. There are multiple loose bodies within the inferior glenohumeral recess, the largest measuring roughly 1.2 x 0.8 x 0.6 cm. Small loose bodies are seen anterior to the glenoid, posterior to the subscapularis tendon. Additionally, there is a loose body within the subscapular recess measuring roughly 1 x 0.7 x 0.7 cm in diameter.
