I have to be honest. When I started this series about the surprising and wonderful people that have come into my life as a result of having multiple sclerosis, most of the folks who made the list are people I’ve known for quite some time. I’ve had MS for six ridiculously long years. The number of people both in-real-life and on the socials who have impacted me in amazing and unexpected ways is quite high. Like, this series could go on for a good long time (whew because nobody wants to read about the shit show that my daily life has become lately).

Today’s entry, though, is someone I’ve only known for a few months. Let me tell you about my new best friend Mary Jo.

But wait! I need to set the stage properly first because like most things related to my version of this horrid disease my meeting Mary Jo has everything to do with the fact that I have an intrathecal baclofen pump.

A baclofen pump, for those not in the know, is a device about the size of your average hockey puck that gets implanted into the abdomen and is then connected to the spinal cord by a catheter that delivers liquid baclofen directly to the spinal cord. Read more about it here because The Cleveland Clinic is usually a much more reliable source on these sorts of topics than I am. The pump is intended to do a much better job of managing severe spasticity like mine where my legs most of the time felt like they were made of solid stone.

My baclofen pump journey has been kind of complicated, as with most things related to having atypical, aggresive, progressive, treatment refractory multiple sclerosis. I’ve written about it here a ton. I got the pump thinking it would solve the problem of my legs that refused to bend properly therefore making me better able to walk for a longer period of time.

Pah! Yeah. It didn’t work out quite like that as I am now a full-time wheelchair user not by choice but by necessity, yet I’ve never regretted my decision to get my pump. One can only toss back giant handfuls of various hardcore muscle relaxers that have little to no effect on your stiff body for so long before one starts to think, “Hmmmm. This is awful. It’s not working. There’s got to be a better way.” And for me there was.

You have to get a test dose of intrathecal baclofen before anyone will consider you a good candidate for a baclofen pump. The test dose is injected directly into your spine (via that wondrous procedure the spinal tap). After the test dose is given a minute to do its thing you work with a physical therapist to see how your body reacts.

It’s a pretty hefty dose that usually turns people into human over-cooked noodles but for me, it only marginally improved my walking speed. The testing docs, though, felt the improvement was significant enough to merit me considering getting the surgery that would leave me with a strange hockey puck looking thing under my abdomen skin.

Me? I was a hope junkie back then. If there was any chance at all that a medical intervention could give me back some lost function – keep me more “normal” longer – my ableist self was all over it.

I couldn’t even imagine a life without the use of my legs. I considered that idea the worst kind of failure. I would continue to walk. This pump thing would make it happen. So what if there was major surgery and rehab between me and the ideal of a walking Bethy! How bad could that be? I’m talking about WALKING here, people. WALKING.

To sum up the many, many posts on this very blog about my experience with my baclofen pump the end result was 2019 where I spent more than 100 days broken up into three month-long-plus stays at a place called Inpatient Rehab, also not in my plan. I had to go on disability and temporarily leave my job in advertising.

After trying really, realky hard to keep my legs moving as legs should, I was forced to accept the fact that for me, the baclofen pump wasn’t about mobility. It was about quality of life. Living with severe spasticity that is unmanaged is no fun. Sudden spasms without warning would turn me into a human-shaped unbending board. I couldn’t move at all while in that condition and it scared the shit out of me. I live alone. I liked it that way. Suddenly not being able to move any part of your body is a terrible, awful feeling. That doesn’t happen anymore. I still live alone. This gift of relative independence is nearly enough for me as an outcome of my choice to get my pump.

The thing about the baclofen pump is that it’s not an exact science. Getting the thing to your personal “therapeutic level” takes years (yes I said years). Anything can change your spastcity from illness to the weather to stress. Sounds fun, huh? Every time your leg situation changes – that is you become too stiff and your knees or ankles refuse to bend or the opposite happens and you get so weak it can be hard to bear your own weight. That also sounds fun, huh?

Each time you try to hit this moving target it’s called getting an adjustment. It takes no time at all to get the actual adjustment. The adjustment involves a device that looks like a television remote control that communicates with your pump in your abdomen and a tablet that controls the actual settings. Easy peasy to have this tweaked as often as necessary when one is a resident of IPR but in the outside world getting an adjustment means getting to Franzi’s office. Easy peasy, right?

Wrong.

My wheelchair is super light weight and easy to transport. It’s me that causes the problem. The effort it takes a second human to get my unbendable legs in a car to get me to the magical location twenty minutes away where an easy adjustment can be made is akin to wrestling with a bear if said bear had legs that refused to bend to get into the car. Getting out again is even more fun because chances are it will be my ankles that refuse to bend when I try to stand to get back into my re-assembled wheelchair. When your ankles don’t bend your feet can’t get flat on the ground to give you a strong base for standing. Try standing on your feet with ankles that won’t bend. Go ahead. I’ll wait.

You can’t stand without bending your ankles. No matter how many nurses and aides are outside the doctor’s office to help get your stiff ass inside the building. Your ankles must bend in order to stand. Period.

Any pump adjustment takes doing this tedious and exhausting process of getting into and back out of a car four times. Not to mention the putting on of outside clothing and shoes (I can’t wear shoes often because I can’t feel my feet in shoes) and the regulating of the water intake because you don’t want to have to pee while at Franzi’s office. Yes, the bathroom is “accessible” maybe for some people but not for me. Yes, I’ve gotten stuck on that toilet and had to pull the “oh shit I’m stuck send help NOW cord.” Franzi’s team came running but that was a lot of work for Maria and Stacy. And even more emotional energy expended from me.

There are other reasons to go to Franzi’s office in person beyond the frequent need for adjusting my ever-changing pump settings.

We have to refill the thing every now and then, too. That liquid gold doesn’t get into my belly by magic! It has to be put there, usually by Franzi’s pal Dr. Wang and Maria and Stacy who have the job of getting my stiff self on an exam table so Wang can stick a needle in my pump to drain any old medicine left before they fill you up with new liquid baclofen. The refill process itself isn’t all that difficult but that’s only true if I’m not actually involved in the process. I am the difficulty. I bring the difficulty with me and it’s shaped like my body but it doesn’t move very well in the outide world.

Here’s a funny side story related to how Dr. Wang knows where to stick the needle to hit my pump on the first try. See, in my early thirties I went through a phase wherein I dated an amazing tattoo artist and found myself the proud owner of say 6 or so tattoos. I love them. My mother? Not so much. She couldn’t understand why someone would defile their body in this way and to do it by choice! She was verklemt. Needless to say she never met this guy while we dated because he was covered in full body art from head to toe. He was not only the nicest guy I ever dated but he looked like a walking masterpiece. I loved my tattoos and assured my mother that when I was a fat old woman I wouldn’t regret getting those tattoos for even a second. I am a fat old woman now and I don’t regret my tattoos at all…well. The tramp stamp location I do wish I could change but it was the 2000’s. Give me a break.

But the reason my tattoos are relevant in this post about Mary Jo (I promise you’re going to meet her…bear with me!) is that one of my butterfly tattoos provides the perfect guide for needle placement. These pics are in my chart with the words “Right wing, orange section, second black line.”

Wow. That is huge and I cannot figure out how to change it so it’s staying that way which is kind of making me crack up.

I had to find this image again just yesterday because it was pump fill day but I wasn’t heading to see Dr. Wang, Maria or Stacy.

No, reader I did not because I got my pump refilled AND adjusted in my office (that’s the view from my office up there and I have to say it is lovely). My office/kitchen area had the best light for pump refilling so that’s where we did it. The only car involved is the one Mary Jo drove to my house. Well. And Brandon my contractor’s truck because he was here too finishing up my kitchen just a few feet away from where Mary Jo accessed my pump.

I never had to get out of my wheelchair! She used the butterfly guide and was able to get into my pump on the first try. Shocking. I was in shock. But the good kind. Even Brandon was impressed.

Mary Jo works for a company called Pentec Health a provider that handles baclofen pump maintenance services in your home. Let me say that again. THEY CARE FOR YOU AND YOUR PUMP IN THE COMFORT OF YOUR HOME.

Mary Jo has been doing adjustments in my home for a few months and that convenience in and of itself had my mind blown. But refill day took me to entirely new levels of gratitude.

I looked at Mary Jo with tears in my eyes and said, “I don’t even know what to say.”

She looked back at me with concern on her face, “Did something go wrong? Are you OK? We’ll fix it.”

“Nothing went wrong. Everything went right. I’ve been stressed out about this for weeks and here you are making it so easy in my own home, in my office, like it’s nothing and you’ve basically changed my whole life. I don’t even know how to begin to express my gratitude.”

Ok. I was super emo probably because of stress and also because that pretty much describes my mental state at ant given moment these days. I’m spewing love and gratitude like a geyser. I’m making people feel uncomfortable and even that doesn’t stop me. 

Here’s the strange thing about Mary Jo. She lives exactly seven minutes from my house. Anytime I need adjusting she can usually be here within ten minutes. Another strange thing about Mary Jo is that she is the mother of my nephew Alex’s friend from childhood,also called Alex so we’ve always called him Alex M to distinguish between the two Alexes. Alex M’s mother is changing my life. Who could have seen that coming?

Mary Jo is lovely. She’s efficient. She has a little portable printer so I can have my official pump adjustment reports just like I was in Franzi’s office. But better. Because I’m not. I only have to go there for dysport injections now and that’s an every three month thing. When I get my new power chair even that won’t be traumatic.

That’s the thing about these complex inter systemic illnesses. It takes literal years to learn what you need to know just to make life even livable while ALSO having a chronic illness. So much of the time you stumble across this info as if by accident. Like when I said to Maria at one of my most traumatic office visits (it might have been the stuck on the toilet visit), “Why can’t you guys just come to me to do this stuff? I mean my house is lovely and I’ll feed you or let you drink alcohol and stuff. Can we make that happen Maria because this feels like torture.”

And then she says completely nonchalant like, “There is a service where a nurse comes to you. I just never thought of that for you. I don’t even know why. We still direct your care but we do it working with a home nurse. I’ll get you the number.”

Wait. What? YOU’LL GET ME THE NUMBER?!?!!

Maria is a busy and wonderful woman. I wouldn’t trade her for anything but I have kind of traded her for a Mary Jo, Alex M’s mom who comes to my house and takes care of me to the point where I’m left nearly weeping.

“Give me a text if that adjustment is too much,” she said before she left my house yesterday. “I can come back and change it back. No problem.”

No problem. Holy crap, Mary Jo. You just said a glorious mouthful. Thank the Universe for Alex M’s mom who can usually be at my house within ten minutes. I just typed those words and even I can’t believe they’re true.

Welcome to Team Bethy Bright and Dark, Mary Jo. Please don’t ever leave me.

Ps. If you have a baclofen pump Pentec Health is a National company. Tell them I sent you and then get all emotional and gush your gratitude at perfect strangers. It’s part of the whole experience.