The MS Clinic=A Splendid FunSucker
In case FunSucker is a new word for you:
A FunSucker is one who, or that which, sucks the fun out of things or people. Also known as Debbie Downer or Rainer of Parades.
I felt almost fully recovered. It took months, but I was able to run again. Back to working out 5 days a week, I was getting stronger, and emotionally I felt great.
Then the FunSucker Clinic called.
Good news, I have no new lesions or activity since my last MRI in March, and none of my lesions are ‘active’ right now.
The Funsucker Brigade was quick to point out that there isn’t a big time-span between the two. Got it, don’t get too excited that for now, my immune system has quit attacking my brain stem. Danger lurks around every corner. Or lymphocyte.
I’ve decided I hate dealing with the Funsucker Clinic. They stress me out and make me anxious. They ruin me for a few days after every appointment, and I haven’t even met these folks in person.
I was feeling pretty much back to normal and happy and hopeful for my future that I was eventually going to be okay…and then I had a clinic appointment. I was so happy to report my progress and improvement, and then they said:
Even though my symptoms are resolving, the disease process is always going on in the background and they’re very confident I’ll have another flareup. They just can’t predict when or what symptoms I’ll get or if I’ll recover from the next one. So, I could wake up tomorrow or three years from now, and not be able to walk. And I might not get that ability back. I could wake up blind, and stay that way.
Thanks, Dr. Feelgood FunSucker.
I’m aware that MS doesn’t go away. What I don’t need is any help being anxious or feeling like I’m constantly living under the threat of unpredictable catastrophe at any moment. I get MS is serious. I get it could leave me bedridden and incontinent, or compromise my vision.
Let’s not forget part of my job as a Paramedic many years ago was to pick up bedridden, and at times almost vegetative, MS patients from their care homes and drive them to the Lougheed Hospital at dawn. To get their tendons surgically severed so they could be untied from the emaciated, painful spastic ball MS had twisted them into.
So please…I get it. I’ve been dealing with the fear of this disease for over a decade now. I don’t need extra fear and funsucking on top of it.
I’m aware that it doesn’t go away, it’ll just remit and lie in wait for me.
Of course I’m aware that I’ll have bad days. (I’m having one now, as a matter of fact, thanks to a delightful combination of warm weather, my period, and a raging ear infection.) But my goal is to have more good days than bad days, and you know what else, Dr. Funsucker?
No one gets to tell me my future. I decide my future, and this bleak picture isn’t it.
Apparently I have a ‘loud’ MRI. Lots of lesions and they’re in bad places. Apparently I have lesions in places that should be causing me much more problems than I’m having. The Funsucker Clinic is apparently surprised that I’m not peeing myself regularly, suffering frequent UTIS (I had one in my twenties, it was an ordeal I’m pretty sure I’d be aware of had it been happening again) and having problems with my vision.
Sorry my symptoms aren’t matching up with the picture of my brain, but I don’t know what to tell you. If I was leaving a trail of urine all over the house like I was some kind of bizarre snail, I’m pretty confident I would bring that up with my doctor, because that’s a problem. I have no reason to lie about my symptoms, but I also don’t think every little minor issue is a big MS deal.
We went back and forth a little bit.
My few days of double vision after I started a new med (it’s a rare but listed side effect) that went away when I stopped the med…apparently they’re calling that an MS flareup. I called it a medication side effect. When I wake up with my hand a little numb, they say that’s MS. I say sometimes I sleep on my side with my arm jammed into my shoulder socket, and the numbness goes away after I’m done my first coffee.
It’s challenging because they’re very educated MS experts and I don’t want to be argumentative, but I also know my body and my life really well. Maybe all the minor stuff is MS. But if it doesn’t bother me much or impede my life in anyway, am I supposed to care? Waking up with a numb hand that goes away as I get moving is about as bothersome as when I wake up with a stiff back or having to hold my book a quarter of an inch farther out for my eyes to focus since I turned 40, or how my left knee aches before it rains or how I get super bloated when I eat bread.
As in, it’s not that big of a deal. It doesn’t stop me from doing anything I want to do.
The thing is, I don’t listen very well. I left home at 16. I never completed high school and I got pregnant at 17. My daughter was born shortly after I turned 18. I’ve survived homelessness, family estrangement, poverty (hello, old friend!) and domestic abuse. If I’d ever listened to anyone else, I’d be living in a skid row on welfare, if we were just looking at the statistics.
I always knew I’d find a way to make it through and I’ll be damned if I’ve made it through everything I’ve made it through, for MS to ruin my life. Imma have to RSVP no on that.
It took me several hours to shake off this phone call, which is actually an improvement from the last one which had me an anxious, emotional disaster for three days. And it’s not the doctors, just to be clear. They’re very nice, very competent. I just have other issues besides MS and some trigger buttons that get me going. This entire situation tap dances all over those buttons as I’m trying to get rid of them altogether.
The problem with the Funsuckers is they haven’t met me.
They don’t know me. Those who know me, know I’m a safe bet. If ever there was anyone with a ‘loud’ MRI who was going to be just fine regardless, it’s me.
But they really really want me to take these pills that will help prevent anymore damage to my nervous system. They assure me that the side effects are typically minimal. I have to do blood work every 3 months to make sure my organs stay ok but hey, small things, right? (Yes, I’m rolling my eyes.)
I asked a ton of questions about the medication options. As I told the neurologist, of course I don’t want to be disabled. But these meds are almost $30,000 a year and I don’t see any point in taking meds I can’t afford so that all I get to do for the rest of my life is sit on the couch and watch TV. Can’t travel, go out to eat, go to events, concerts, can’t buy books, name-brand groceries, or buy a car to replace my blown-up 20 year old one so I can’t go anywhere. Can’t go hiking or road-tripping because all my money goes to my pills…but hey, I’m not disabled while I sit in my house on the couch?
I’m not interested in that life.
I want to experience things again, once life post-Covid returns to normal. Until the day I die, I want to make good memories to spackle over the plethora of bad ones. I can’t do that when I’m housebound and broke.
I’m also not interested in taking a medication that has side effects worse than the problem it’s trying to improve. So if this med makes me dizzy, nauseated, exhausted, in pain, depressed, etc…I’d rather take my chances. I’d rather be out living my life not feeling like a miserable bag of garbage all the time, thanks.
I believe that the length of my life is irrelevant compared to its quality. There’s no point in being alive until your eighties or nineties if you spend most of it sick, in pain, or unhappy. I’d rather be taken out by an asteroid next month on a good day than spend 20 years in a long-term care facility wearing a diaper and staring at institutional-neutral coloured walls from the time I wake up until the time I’m put back in bed.
Ugh. Hard pass.
But apparently the medications are well-tolerated by most. So I said to the FunSucker team, if you guys have a way to get them paid for, I’ll take them. If a pill has minimal impact on my daily life and helps prevent my brain stem and cervical spine from deteriorating further, then I’m in. But I can’t afford to pay for it so someone needs to find me a solution. I’ve already looked into tons of them. The clinic assures me we’ll figure something out. Someone is going to call me about helping me with my ‘financial hardship.’
Trust and believe I really love being 40 years, having worked a lot since I was 13, telling people that I’m broke. Yes, I have looked into non-group blue cross. Yes, I know it’s only about 80 bucks a month. No, I can’t afford that either. No, there’s nothing I can sell because I have nothing of value. Hahahaha sigh.
Yes, I did have savings. That’s how I’ve been buying groceries since September 2019 when things started to slide downhill. My savings were how I kept buying groceries when the Covid shut down started and my business contracts were cancelled. I actually had quite a bit of savings but things have been less than optimal for almost a year now. My savings are all gone. I’m grateful I had such savings to start with, but I was income-less and disabled for ten months. Now I’m physically better, and thanks to Covid, every event contract I had for the rest of the year is cancelled.
It is what it is.
Everyone in the event industry is hurting right now, so it’s not like I’m alone in this.
But when I say, I’m broke, I legitimately mean that I don’t have any money. I don’t mean, guess I’ll eat at home a couple more times this week and not buy that new bag. I mean, I have enough money for no name groceries and to make my two minimum debt payments until September. After that, my bank accounts are completely empty. I’ve gone off my anti-depressant and my allergy medication because I can’t afford them anymore. My belt can’t get any tighter, promise.
So that’s where we’re at. I told the clinic if they can find a way for me to get these meds paid for and they don’t make my life miserable, I’ll take them. Those are my terms.
Then I plan on doing my blood work every 3 months and checking in with the Funsucker Clinic once a year after my annual MRI. Other than that, I’d like to just be left alone to live my life.
Frankly, this chronic disease stuff bores me and I have much more interesting things going on right now 😉 But that’s another post for another day…
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