Life is made up of a whole lot of steps

Think about the average day. From the time you put your feet on the floor beside your bed in the morning to the time you lift them off that same floor again when you finally lay down to sleep. Whether you’re a person who wears a tiny computer to tick off your ten thousand steps or whether you’re just an average under achiever like me (before MS) and you hovered more around 5,000 – in any case, that’s a lot of steps.

Steps aren’t all created equal. You probably take a lot of your steps for granted. The steps you take to get your coffee in the shop up the street. The steps you take in your house between rooms. The steps you take to the bus stop. The steps you take walking to and from your car. Those aren’t “big” steps but they’re steps just the same and until you face a time in your life where you can’t take a single step for granted, you probably aren’t very aware of them at all.

I got cocky. I know, I know. I do it every time.

I have a day or two that doesn’t completely suck and I get all over confident and start to think that maybe this isn’t really happening. Maybe I’m going to just keep feeling better and better and maybe I really don’t need all of these drugs I take every day…Maybe this has all been one big long bad dream that I am now going to joyfully wake up from and go back to being the average middle aged woman (who considers herself rather happily lazy). But no. That’s actually not the case. This is hella real.

I decided to do an experiment today and skip my morning dose of Ampyra to see if I really did need it. I mean, so many things have gotten a little bit better in the last week or so that I thought it was possible, at least conceivable, that maybe I didn’t need the miracle walking drug. I’ve been wishing I could cut down on my daily drug cocktail. I don’t really walk that well sometimes even when taking the walking drug, so I talked myself into the possibility that maybe it wasn’t really working so well at all.

I had a meeting this afternoon at a local high rise downtown office building not that far from my office. I didn’t set myself up for failure. I knew walking to that meeting from my office a couple of blocks away would be pushing my luck so I didn’t even try. I worked from home in the morning. To be honest, I felt rather exhausted today for the first time in a week or so and I felt like I needed the extra rest that would result from not going into the actual office before the meeting (fewer steps…it makes sense). I drove myself to the meeting but as soon as I stepped out of my front door I knew I had made a terrible mistake.

I’d forgotten how bad frankenlegs can be!

I was walking in my head, but the messages were definitely not getting to my actual legs. My legs were dragging. My gait was wonky – as if I’d spent the morning drinking strong hooch and not resting up for a client meeting. I was walking into walls and banging off of trash cans. I tried to park as close as I could to the entrance to the building but even in the parking garage under the actual building, the number of steps you have to walk just to get inside of a high-rise office building is more than you’d think. The handi-spaces aren’t very close to the elevators at all (the close parking spaces were all marked “reserved” and I can almost guarantee they were occupied by able bodied walkers). The entrance I went through was a little further away than the usual one I go into and that meant more (guess what?) steps.

When I parked, I realized I had to pee. I wasn’t sure where the closest bathroom would be (the bathroom that would require as few drunk steps as possible) but when I finally got to the elevator I noticed with joy that it was located one floor down on a lower parking level. I pressed the button down, and not up, where I was actually going, hoping the extra steps to get to the bathroom wouldn’t be too many for me. I saw the bathroom door just outside of the elevator doors as they opened and I heaved a sigh of relief! Not too many extra steps. It was a single. I tried to open the door. It was locked. I waited about ten minutes. I knocked. It wasn’t occupied it was just locked. Awesome.

I head back up the elevator to meet my team in the upper lobby by the security desk where you sign in for meetings. The escalator to get to the upper lobby moves at some insane break-neck speed that required me to focus and concentrate really hard in order not to break my neck whilst jumping on. People are walking very fast all around me. Some of them are obviously annoyed with my hesitation to get on the escalator. They have places to be! I ignore them. I’m used to being in the way of other people who are used to walking anywhere and everywhere without any effort as fast as they please. Don’t they think I’d LIKE to walk faster? Probably not. They assume I’m lazy or just in their way.

I make it to the top of the escalator and explain my leg predicament to the three co-workers I was meeting and told them I was going to be walking extra slow because my legs just weren’t, well, super operational. They were extremely understanding. They walked slow (really slow) with me. I was surrounded by support as I stumble walked to the elevator to the 57th floor. If you’re wondering, that’s a lot of steps between the escalator and the elevator bank to the 57th floor.

When we arrived on 57, there was yet more walking to the conference room where our meeting was to be held. My co-workers, again, were awesome. They stood around me like a fortress, making it almost certain that if I did fall on my face, one of them would break my fall and probably help me back up again. I was grateful for the support and embarrassed that I needed it. I’m supposed to be in charge. I’m the leader! It does a number on your psyche to hobble to a meeting. I mean, I’ve done it before. I’ve done it a LOT in my recent past but it never gets easier. It never stops being frustrating, embarrassing, and just plain annoying but having people around you who get it does make it a bit better.

I made it to the conference room but then I remembered I had to pee. Guess where the bathroom was? Right. Exactly. It was around the bend, through the kitchen and to the left, which is exactly the path I just stumbled to get to the conference room and now I would be doing it three more times. Mandy, one of my co-workers, offered to walk me there. It’s humiliating, no question about it, but I was in no shape to turn down an escort to the ladies so I gladly took her up on it. Bless her. Really. Life with MS would suck (even more) without understanding people.

We had a great meeting. I’m still me (especially when sitting down). My addled feeling stopped the minute I sat my ass in the seat around the conference room table.

But I couldn’t get it out of my head. Walking, not very far, is a fundamental part of life! What would have made this experience better? I started to think about it. What walking aid would even help me in this situation? A cane won’t help my legs remember how to be legs. A rollator would make it even harder to navigate escalators that move at the speed of light. A scooter? Would I have to get an old lady car to accommodate my giant scooter so I could scoot from the parking lot to my destination (somehow) following the signs that indicate that you have to go completely out of your way to get where you’re going if you happen to need handicapped accessible pathways? None of these options seem workable to me.

Thank god I had some Ampyra in my bag and I popped when once I got to sit down but I still had some time before it would smooth out the walking signals and I know the whole concept of medication needing to maintain therapeutic levels to be effective. I got even more pissed at myself for experimenting with something so important. I walk funny WITH Ampyra. Without it, turns out, I can barely walk at all. Color me informed.

This is on my mind because I have some potential work travel coming up and I’m trying to get my head around how I’m going to manage that in my current state. If driving to a meeting in my own town causes this kind of consternation, imagine what happens when you add in a couple of airports, a southern climate (my travel would be to Atlanta. In July. FML). I’d have to be in good enough shape once I arrived to not only function but to engage, interact, be delightful even. Or make words in sentences that make sense, at the very least.

I thought I’d be farther along by now.

This disease isn’t moving at a speed that I find acceptable. I got cocky. A couple of good days had me booking airline tickets and throwing caution to the wind. A really bad day made me realize how bad an idea that is, right now. Right now? Right now I can manage only the fewest possible steps. I have to plan every detail of every day like a military operation focused on efficiency and minimizing foot traffic as if my life depended on it. When I’m home, I know where to park, where the paying machines are, where the bathrooms are, who I can call to help me, what my escape routes are in case of extreme distress…all of it! It’s not easy but I do it.

Toss in a trip down south for a day of executive training and all of that goes to hell. Will a cane help me? A rollator? A goddamn segway? Good lord. Imagine the damage I could do to myself and possibly others on a segway! I shudder to think of it.

I’ve already reached out to explore my options for attending remotely. I know people will understand if I can’t pull it off just yet. I think so, anyway. How long will that patience last? How do I not consider that question? It’s valid. But I don’t have room for it in my broken brain right now. There are too many other things to consider…like what I’d do if I happened to pee myself while hobbling around at super slow speed in search of a bathroom on unfamiliar turf.

Here’s what this cursed disease is teaching me.

Don’t get too cocky. You will be knocked on your proverbial ass. Keep trying, by all means keep trying, but also be realistic. Your B cells are still being killed off in droves and your body isn’t reacting well to the process so give it some time, girlfriend. Patience is a virtue and it’s also not an option in your life just now so suck it up, buttercup, your steps must be numbered and that’s just the way it is for the time being.

But while you’re doing all of that, don’t lose hope that every step won’t haunt you for the rest of your life. This will get easier. You will get used to it OR you will get you a goddamn segway. One way or the other, it has to get easier.

Oh. And stop experimenting with your medication, Einstein! The world is full of so many steps. Stop making things harder for yourself for the love of all that is holy.

And it continues. Sigh.

Relapse: Part Deaux

If this keeps up, I’m gonna need a bigger nightstand.
He called me. He actually called me himself. He didn’t sic Evil Nurse Carol on me, The Great Scott all powerful and good called me back his very own self. 

I explained more about my situation. The intense pain. The inability to stand for very long (like less than ten minutes). The weird numbness in my hands. My fatigue hasn’t been bad at all and my walking wasn’t terrible (thanks Ampyra) but I was so weak I could hardly stand so that kind of prevented any distance walking right there. 

He listened intently. He explained his point of view, bestowed on me from on high, as he is wont to do. He believes I’m experiencing a relapse. He thinks the two month flush was the thing that allowed it to happen on top of the fact that we both thought Tysabri wasn’t really doing all that much for me over the course of 15 months I’d been taking it. Then he explained that the Ocrevus can’t be to blame, rather it was probably benefitting my fatigue levels a bit (he’s heard this anecdotally from the infusion nurses who report on patient response to the new goo). 

“Well, Maribeth,” TGS said to me in the dulcet tones of the expert, “I had hoped to avoid this but you keep giving me new challenges so I think we’re going to give you a little hit of steroids to help cut this relapse short. You’ve done well on them in the past. We need to get you feeling a bit better don’t we?”

I really give TGS a bad rap. He’s really quite wonderful when he’s not arguing with me and my well-researched points of view. 

I’m on low dose steroids (50 mg once a day for ten days). This means stomache drugs to ease the side effects of the Prednisone and a sleeping pill to make sure I’m not up 24 hours a day. My nightstand medical drawer runneth over but if this gets me through my eventful next week of work, it will be worth it. 

It will be worth the bloated face and swollen feet and hands. It will be worth torturing my liver for a little longer. After all, didn’t we just learn that I have a crazy healthy liver thanks to that awesome Hepatitus B scare? Why yes! Yes we did. My liver can take it. 

I’m praying this little boost juices me up enough to get through two big days next week. Client dinner on Wednesday night with visiting dignitaries. All day office festivities on Thursday culminating in the official Grand Opening open house at the new and improved Moxie Pittsburgh offices. I’m not even being remotely sarcastic when I tell you I’m really looking forward to both! I honestly wasn’t sure how I was going to pull it off with the shape I’ve been in lately. I might have been able to fake one day, but both was an exercise in magical thinking even for me, the High Preistus of Magical Thinking. 

I’m hoping Vitamin P doesn’t let me down. I know so many people who hate being out on the steroids. I personally wish I could take them all the time. I’d get used to having a giant fat face and swollen body parts, I really would. Just to not be in pain for a little while and to be able to function almost like I used to is reason enough to put up with a little bloaty mcbloat face. I’m losing my death grip on vanity, it would seem. 

And who am I kidding? I can’t come close to anything near what I used to do. That ship has sailed, thanks to my busted central nervous system. But I can come close to being enough. Enough to feel happy and confident that I did a good job. I guess I never realized before how important that is to me. I guess I just took it for granted. 

So, if I do anything terribly inappropriate at the big office party I can always blame it on roid rage. If Vitamin P isn’t enough to hold me up and I take a fantastic tumble or have to sit all night, I can blame that on my stupid disease but I’m really hoping to feel well enough to actually have fun. 

Remember that? Having fun? I used to be pretty good at that. I hope I remember how. 

I think the thing about The Great Scott that I love the most is how he always manages to give me that other thing I seem to run out of a lot lately. 

That would be the most elusive drug of all. The one that doesn’t fit in my nightstand. Hope. He gives me hope. That’s what makes him truly great in my book. 

Meet my little friend

These things are supposed to be good luck, right? *shivers*
My post-Ocrevus experience continues this week in the days leading up to my next half dose on May 23 and I have to tell you, it’s been full of interesting little experiences.

I started out feeling pretty fantastic. I feel I should thank my good friend and reliable juice, Solumedrol. It makes some people feel like they’re possessed of a devil. It makes me feel like Wonder Woman. Go figure.

After that wore off, I was still feeling better than I had been during the infamous two-month flush so I talked myself into the value of trying to get back to something close to my “normal” routine. Mind you, I meant my normal post-MS-post-two-month-flush normal but still. I made it into work pretty well last week. I had kind of a slow and sleep filled weekend but I expected that after two days of playing a Normal in Real Advertising Life.

I knew I had to prepare both mentally and physically for The Great Office Move of 2017 where myself and my team will move to some pretty swank new office space, a few blocks away from our existing office. We’ve had such an amazing couple of years that we outgrew our existing space. Yay, us! We can talk another time about the irony surrounding the fact that two of the worst years I’ve had in my personal life have somehow resulted in two of the most successful years in my long (almost 30 year) career in advertising.

How does that even happen? Clearly, I have no idea.

This week, I raised the stakes on my return to normal. I made it to the office on Monday AND Tuesday before 10:30AM. I have been a whirling dervish of activity. Packing. Dealing with client emergencies. Packing some more. Attending big important meetings by phone. More packing. More functioning as a Normal Ad Executive would function. More packing. Repeat.

Today was especially full. I burned through the charge on both of my cell phones because I was on one or the other of them all damn day. I got a lot done, for sure, but at 6PM I still had three things on my “before end of day on Tuesday” commitments that needed to be done. And remembered I somehow ran out of dry cat food this morning. What kind of self-respecting crazy old cat lady runs out of cat food with every damn home delivery service known to humankind at her fingertips!

I almost can’t even.

So I take my last call of the day from the parking lot at my local Petco. I realize that I desperately have to pee (and for any of my fellow MS’ers out there you know that when you have to go, you really have to go). I walk awkwardly into Petco because I have to pee and because it’s hot. Also I’m tired and I forgot to take my second dose of Ampyra today. But I walk slow and pray the lady dam doesn’t let loose on the way.

I wheel my cart to the back of the store where the Petco has it’s rest rooms. I lurch into the handi-stall because I have the world’s largest backpack since I now have to carry all of my items on my back for ultimate balance and it sometimes sticks out far enough to make closing the bathroom door problematic. I hang my backpack on the hook, barely get my undies down (thank god I’m wearing a dress) when the stream flows like the mighty rapids of Ohiopyle flowing from my very person. At least I assume that is a fast-running river as think I remember being told by several outdoorsy people, of course, because I would never go rafting.

I’m looking down at the floor thinking how I might not stop peeing before the store closes and I STILL have three things to do “before end of day” and it’s now 6:20PM and that’s when I notice him. That guy! The one in the picture up there. He’s staring at me from between my Adidas cap toes.

Then I notice that the floor is moving. The floor shouldn’t be moving but it is because a previous customer in a damn hurry dropped an entire box of crickets on the bathroom floor. The box that contained said insects was on the floor thus setting its contents free. Previously doomed to be reptile food or something, these happy recently freed crickets were scampering all over the floor, willy nilly, trying to escape their cruel fate. Running their tiny cricket legs over my cap toes. RUNNING. ALL OVER THE BATHROOM AND MY FEET.

At this auspicious moment a friend’s voice came to me, in my mind, he came to me and said these words of warning: “You best get your white ass up and out the door of this bathroom. You’re gonna have crickets in your drawlls, sure as your sitting there taking the world’s longest leisurely lady squat.” (I don’t have to name this friend. You will know who I refer to because he’s famous like that.)

I wildly shook out my drawlls, gathered my belongings, hastily washed my hands and fled that horrible room flooded with tiny fleeing vermin to get my damn cat food and go the hell home.

By the time I got home, I realized I could barely walk.

My body had that “alive in my mind but dead in my limbs” feeling I’ve come to know so well after a long day of Provigil fueled speed thinking. I’d hit the wall. There would be stair crawling in my future. I could get the giant backpack and my Petco bags in the house, I could feed the cats. But I knew there wasn’t much more in me and I had downstairs litter AND upstairs litter to deal with. And three more things to do before end of damn day.

Crawling up and down stairs it would be!

This is all to say that even when I feel quasi-OK, and I fully intend to give my new-normal routine my well-intentioned all, I still have MS. I still run out of steam. The whole “mind over matter” thing only works for so long until the broken central nervous system says, “Um, nope” and your limbs just stop physically working as limbs should work. Possibly while being set upon by vicious crickets.

The silver lining here is obvious. I no longer have a fear of being attacked in close quarters by creepy crawly tiny critters who threaten to take up residence in my under trousers.

I also know I like feeling a little bit better. I like at least trying to try. I did a lot this week and yes, I realize that it’s only Tuesday but I did a LOT this week. This means a couple of new things in my new life…

  1. I will be working from home tomorrow. I know it’s not ideal. It’s move week. There will be visitors in from offices near and far to assist in the moving effort but I won’t be there in my physical form. I can’t do it. There. I said it. The world didn’t end.
  2. I will also be cranking down the central air in the Aspinwall office of Moxie, since it is supposed to be a balmy 90 degrees tomorrow with much sun. Since I can barely walk as it is, walking through the outside atmosphere, that to me feels like quick sand, is definitely not a good idea.
  3. It’s going to be OK. The world won’t end if it takes me a little longer to get back to my version of normal. I might never get back to my version of normal and for today, that feels OK. I can’t promise I will see it quite the same way tomorrow, but that’s just the way MS life is.

I learn slow. But I learn. I fully expect to have a cricket filled nightmare tonight. That might be the thing that actually does me in.

Quick funny story

So you may or may not know that I’ve been in specialty pharmacy pre-authorization hell for the last few days trying to get my Ampyra refilled longer term. It’s not gone well. I’m down to five days worth of pills. Still no approval. 

I have a business trip next week for which it would be most helpful to be able to walk. It’s longer than 5 days away. I’m kind of in a bind. 

One of my smart friends suggested I reach out to the Ampyra people directly to see if they had any way of sending me samples (or something) while I try to wade through insurance hell. So after being on hold today with CVS/Caremark (aka the seventh pit of hell) for exactly 58 minutes, I decided it was worth a shot. 

Guess what? They can’t help me with samples.  I couldn’t be that lucky. But the very helpful woman from Ampyra wanted to know why I wasn’t in their system. This confused me. I explained I wasn’t aware that I was supposed to be in their “system.”

She then very clearly and helpfully explained to me that when a new patient starts Ampyra the doctor’s office is supposed to send a form to the company to enroll me in their program. 

The program gives new patients a free 60 day supply (which makes a ton of sense since this drug doesn’t work for everyone). While you’re enjoying your free 60 day trial, the drug company handles setting you up with a long term script with your specialty pharmacy. In other words, they do the work. You try the drug. If it works, at the end of 60 days you’re all set with a year long refill system on their patient assistance program. 

“Oh!” I say. “Well that probably explains it then. I probably make too much money to qualify for any patient assistance programs. I pay $250 out of pocket for the 30 day supply.”

Ampyra Rep says,”Do you have private insurance through your employer?”

“Yes I do, which is why I’m currently stuck in CVS/Caremark pre-authorization hell,” I say. 

“It doesn’t matter how much you make, honey. You qualify. We need your doctor’s office to fill out a form they can get on our web site. Once that’s done, we do the work. Your co-pay will be $40 for a 30 day supply. For as long as you take the drug.”

“I’m sorry, what?” I say. 

“You qualify for patient assistance. Get them to fill out the form and get it to us. We’ll take it from there,” she says. She is super duper nice and very helpful. 

“Wait. So you’re telling me I could have had 60 days for free? So $500 (to me) worth of medication and then YOU would have handled this whole mess for me? For the refill for the drug that I still DON’T HAVE?!” I’m trying at this point to modulate the tone of my voice.  “Um, can I just get in that program now?”

“I’m so sorry. You’re not a new patient anymore. But you still qualify for the assistance program. Just have your doctor’s office send in the form today. It will take ten minutes tops, I promise,” the helpful Ampyra representative says to me. 

So who do I have to call? Freaking Nurse Bane of My Existence Carol. She’s far too busy to help me. She will let me know when she has time to send in the form. It’s the end of her day after all. 

Let me recap. 

I could have had 60 days free (thus saving myself $500 dollars out of pocket) if Nurse Carol had done this the right way. I would have had no lapse in medication because I’d have pills to take for 60 days – while the company works out the details for the long term with the insurance and specialty pharmacy. 

“Honey, that’s why we have this program. Your doctor should have told you about this. We know how hard it is to get your authorization approved so we give you 60 days free.”

And…scene. 

In the category of “always learning the hard way…”

I offer this quick update.

As evidenced by my schlumping, stomping, dragging, bobbing and weaving all over downtown Pittsburgh today, I can confirm that it is not actually a good idea to take one dose of Ampyra on one day, and then no Ampyra at all a second day and still hope that it works. BAD IDEA. Color me informed.

Oh. I also didn’t take my modafinil yesterday in order to give my obsessive broken brain a little break and subsequently slept until 3:30PM. It’s also two days before infusion and I generally feel like shit.

So, experiment over.

I go through phases where I openly resent needing expensive daily meds in order to operate at levels anywhere close to what used to be considered normal for me. I talk myself into the fallacy that if I only tried harder, I too, could be one of those energetic, strong, MS-Cross-fit ladies who looks this disease in the eye and triumphantly yells, “HA!” in it’s face…While lifting heavy weights and running frequent 5Ks. I am all-powerful and will not let my MS get the best of me!

Yeah. So much for that exercise in self-delusion.

I’ve already called my specialty pharmacy today (please call back later, closer to end of day, we should know more then, they tell me). I made it to my office well enough today but my foray into the streets to procure something to eat for lunch was more than a little bit wonky. My muscles are aching like I did a very strenuous workout yesterday (I didn’t). Eyes are blurry as if I’m suffering from lack of sleep (I’m not). I could literally lay down on the floor of my office and go to sleep right this very second.

The see-saw of positive/negative feelings from day-to-day, minute-to-minute, sometimes gets me down. I tell myself I’m doing great. I’m still at the beginning. My life has yet to level out to achieve any kind of new normal. It all just takes time. You can’t rush multiple sclerosis. You can’t ignore multiple sclerosis. You can’t outsmart it either. I’ve personally tried all of those things and failed miserably. Time after time.

I’m going back to focusing on getting my thinking right. It’s a much more productive pursuit where chances of success are much, much higher.

Playing games with drugs is dumb and demoralizing, said the girl with a firm command over the obvious. Bring on infusion day!

 

 

 

A little love…for me

I’ve written before about how bad I am at optimism.

I know it’s nothing to be proud of. I know our thoughts have a direct impact on our lives and how we experience the world. I hate being so hyper realistic bordering on pessimistic. I really do. I just can’t seem to get myself to the place where I can allow myself the kind of peace that is supposed to come from thinking happy thoughts.

But sometimes? Sometimes one or two positive thoughts sneak in at the strangest possible times. Like today, for example. I am going out on a limb of positivity right now to make the following bold claim: I think the walking drug works for me.

There. I said it.

I have no idea how two little pills every day could have such a magical effect. It makes my brain hurt to think about how a chemical substance could trick my brain into thinking I can walk like a normal human again. But it appears to be doing just that. My legs feel like legs instead of what they usually feel like (something akin to alien limbs controlled by a will entirely their own that don’t like to bend or move properly).

According to drugs.com, Ampyra “is used to improve walking in patients with multiple sclerosis (MS). Dalfampridine produced an increase in walking speed in clinical trials. Exactly how it works is not known. It is thought to increase nerve function.”

“Exactly how it works is unknown.” Huh. That’s not shocking to me at all. What’s shocking to me is that it actually seems to be working at all. The Great Scott told me that some patients experience positive results from taking Ampyra but not all. He said there was about a 30% chance it would work for me. That didn’t sound like the best odds to me. But goddamn, if it doesn’t appear to be working pretty well. I might be the 30%! I almost can’t believe it.

Now I’m also characteristically realistic about this potential good news. I know it might not work for long. It might become less effective over time (TGS warned me of that). Some other horrible outcome could rear it’s ugly head at any time and I’d just have to deal with that. Drugs are complicated.

For example, Modafinil, the other wonder drug that I take daily for my overwhelming fatigue is definitely messing with me and not in a good way.

Modafinil works to keep my brain alert and it really does just that rather magically. But it also seems to make a lot of things work a little too well because I’m all of the sudden anxious, full of anxiety, unable to stop obsessing over strange things, maybe even a tad paranoid. It also messes with my sleep – this cannot stand. I need all the sleep I can get. I find it hard to read. That, too, is completely unacceptable. I’m struggling to finish book #4 of 2017 and this is not helping me reach my ultimate goal!

I wanted the drug to give me energy not make me hyper vigilant and notably crazier than normal. I’ve decided to lay off of it for a few days to see if I notice a change back to my version of “normal.”

The thing about the human body is that it is a vast, complex maze of interconnected systems and parts that nobody really truly understands. They try. They really try. But most “medicine” is an elaborate process of trial and error. Doctors know a lot, I realize that, but even the best ones will tell you that what they don’t know boggles the mind. The fact that I currently take more than one drug daily that uses the phrase “exactly how it works is unknown” to describe its mechanism of operation in the human body is a little bit mind blowing to me. But there you have it.

There are more drug adventures coming for me in the near future.

I have my last Tysabri infusion in March and then I am going DMT-free for two to three months. I will be on ZERO major disease modifying drugs for two to three months. This fills me with fear unlike any other I’ve ever known. I’m having horrifying visions of myself crawling around on the floor or sleeping 15 hours a day for three months. Then today while chatting with Cheryl, my therapist with MS, a different thought popped into my head..another oddly optimistic thought.

Maybe I will feel better without the big bad drug. Maybe it’s making me feel worse while it also appears to be keeping my disease in check. The side effects of the DMTs are hard to separate from the actual symptoms of MS. The Great Scott doesn’t think this current drug is the one for me. He seems much more optimistic about the potential for the “new goo,” as he calls it.

The whole process of modern medicine is about trial and error! You just keep trying and trying until you find the magical combination of things that work for you.

Instead of feeling frustrated by that fact, like I usually do, it sounds oddly hopeful to me tonight. I’m giving myself a little Valentine’s Day love and allowing myself to believe that the right combination is out there for me.

I will find it. It will help me. I mean, look at me! I seem to be walking.

 

Hope in a bottle?

Hope is a funny thing.

If you’re me, you avoid it because you hold a fundamental philosophy about life that states that if one prepares for the worst possible outcome, one won’t ever be disappointed. I believe this may be a common philosophy among young widows. It started for me before that, though. And it continues after. It’s just how I think. I’m not terribly proud of it, but it feels safe. Cozy. Familiar.

Pictured above is the latest hope in a bottle recently delivered to my doorstep by the nice, if somewhat infuriating and idiotic people at the CVS/Caremark Specialty Pharmacy. It arrived in a giant box, about 20 times larger than it should have been to ship such a tiny bottle. I eyed that box suspiciously. I was almost afraid to open it. The bottom line is, hope scares the shit out of me.

This potential miracle in a bottle called Ampyra is supposed to help me walk better for which I am charged a $200 monthly co-pay. Thanks, shitty pharmaceutical companies. Thanks very much.

The thing about not being able to walk very well is that it pretty much affects your entire life. Every outing becomes a highly complex planning experience. Can I park close enough? Will there be something for me to hold on to? Will there be steps? How many? What if when I start walking my legs have other ideas? These are all things that go through my mind before I leave the house for just about any reason at all. The thing is, I don’t mind my funny walk or crawling up steps in the comfort of my own home, but it’s not something I love to experience out there in the public.

I’m not sure if it’s as simple as being vain, but I’m sure that’s part of it. It does look funny, there is no doubt about that, but more and more I really, truly don’t give a shit how I look. I think it’s more about how horrible it feels. There’s this strange experience when your brain is telling your legs to do something, but your legs aren’t down with the plan. Your brain is saying, “Walk! Head up the street! Here we go, one foot in front of the other, easy peasy!” Even toddlers can do it. Eventually.

But your legs all of the sudden don’t feel like they are entirely under your control. Or even a little bit under your control. I wish I had words to describe it better, because it is a singular, maddening, flat out bizarre experience to feel that something connected to your person isn’t under your control.

When people ask that question, you know the one, if you could change anything about yourself – anything at all – what would it be? Without a second’s hesitation my answer is always the same. I would love to be graceful.

Have you ever seen the way a dancer walks? They are very straight, erect and strong looking. Yet they glide across a room as if propelled by an invisible force that only they can conjure that makes them look like they are walking on air. I’ve always wanted to walk like that. Even when I was healthy, I never came even close.

I stumble, I stomp and I stutter step. I clunk and creek and clomp. And that’s when I stay on my feet. I see myself as the antithesis of graceful. I am the definition of non-grace. Then I started to have those “legs-not-legs” feelings on a more regular basis. I was diagnosed with MS. And my hope to ever be a graceful walker was permanently dashed. I mean, there are worse things that could happen! But being able to walk…it’s kind of fundamental. It’s not like having nice skin or getting a reliable erection (if you’re a man). Those things are simple to get prescriptions for. And they are usually cheap. Drugs that help you walk, on the other hand, take over 7 weeks to be approved, too many phone calls to count, mix ups with insurance details, mean emails to nurses and yet more phone calls.

There are two categories of drugs I take to help my MS. The big MS drugs are the Disease Modifying Therapy drugs (or DMTs to us in the know). For me, that is my monthly infusion of Tysabri. We all know how well that’s been working for me so far. Big snore.

Then there are the little MS drugs – those that affect (or try to affect) daily symptoms. I take Modafinil for fatigue. I take Baclofen for night-time muscle cramps. I take Amitryptiline for nerve pain. I take something called Oxybutynin for my stupid spastic bladder that makes me pee a thousand times a day.

And now, I also take Ampyra, the magical walking drug that is intended to help my legs remember their primary function on a more regular basis.

I’m only on Day 2. I’m not ready to sing it’s praises from the rooftops yet because I’m still pretty shaky but I have noticed that my legs aren’t as stiff and weirdly awkward. I seem to be able to walk a tiny bit faster and straighter instead of my usual drunk-like stumble drag gait. It seems to make me a little dizzy which is odd for a drug intended to help you walk better but I’m trying to give it time to pass. Like many side effects, it might be temporary. I’m learning slowly but surely that time is the factor of life I have zero control over. So I’m trying to be more patient. Emphasis on trying.

But today, I felt like I did indeed walk better. I’m not going to be doing graceful pirouettes any time soon. But I never really could! So who knows. Maybe this one is a winner?

Only time will tell.