Multiple Sclerosis Awareness Month: My MS and me


March is Multiple Sclerosis Awareness Month. Though I have MS, I don’t write much about it because, frankly, it’s long been just part of who I am, not what defines me. There are far more informative bloggers when it comes to all things MS—my dear friend Cathy of An Empowered Spirit foremost in my mind—so I typically stick with grandma-focused sorts of stuff.

Yet, with MS becoming a bigger (sometimes overwhelmingly so) focus of my life in the time since last year’s MS Awareness Month, I figured I’d spend at least one post sharing the relatively recent changes to my MS and me. Perhaps doing so will put yet another face on the confounding disease—Selma Blair being the most popular one of late—to maybe clear up a few misconceptions many folks have of the disease. And maybe sharing my story and progression will comfort someone else dealing with a similarly stinky situation.

Before sharing recent changes with MS, though, I should first briefly share the back story.

I was diagnosed with relapsing remitting MS—the least disabling, in my mind, of the four types—in 1992. I gave a few details about that in this 2013 post. At the time, there were few options for people with MS, so I basically did as my neurologist advised: try to be as healthy as possible and contact him if I have “loss of use” of any limbs, or “exacerbations.” Which I did a time or two and was remedied with five-day infusions of steroids each time. I worked a full-time job throughout most years—except a few years when I freelanced because three teen daughters needed mom at home.

Fast forward to 2008. A major exacerbation and an MRI showing increased lesions led to requiring one of the MS medications now available—copaxone—which I injected myself with daily for six and a half years. I stopped working outside the home in December 2008… due to a layoff, not MS.

Fast forward to 2014. Worsening symptoms and scary MRIs led to a change in medications to Gilenya. Hooray! No more daily shooting up.

And fast forward to today… and the point of this post: the following list of recent changes to my MS and me, in recognition of Multiple Sclerosis Awareness Month.

Cognitive ability (cog fog). Folks who have read Grandma’s Briefs—or any of my other writings—in the past may have suspected something’s up here lately. I don’t write like I used to. I can’t think like I used to. My brain is ridiculously riddled with lesions and it’s affected many things (memory and more) but my work—my writing—the very most. Hence the decreased quantity and quality of posts on this site (and elsewhere) than I once produced after kicking off my freelance-only career in 2009. Which flat-out sucks on so many levels—emotional, monetary, and more.

RRMS is now SPMS. In January my neurologist officially changed my type of MS to Secondary Progressive, no longer Relapsing Remitting, based on various markers/factors. That’s not a pleasing—or welcome—progression for me, despite the inevitability. In fact, knowing there’s no more relapsing/remitting, just a steady decline of my brain and body going forward scares the hell out of me. And makes me cry every time I think about it. So I’ll move on.

Even more letters. As a writer, I’m a word person, a fan of letters. But new ones related to my health added in January—in addition to the SPMS—are far from my favorites. Those being JC and PML. It’s a very long story but those five additional letters caused me much stress and distress in January—my family, too—as there was the possibility my being JC Virus positive had led to the fatal brain disease called PML. PTL (Praise the Lord) the tests revealed no PML… but my “levels” are high enough I must be routinely tested for it going forward.

Ritalin has pooped out. Chronic fatigue is one of my major MS challenges. For a few years now, Ritalin has helped me get through each day. (Who knew? Apparently while Ritalin calms down kids with ADHD, it works the opposite for exhausted adults.) It does very little for me now… and insurance won’t cover the next option that might. So I’m still popping the Ritalin regardless, at least ‘til my neurologist recommends another (insurance-approved) fatigue fighter.

Handicap placard. (One positive change, of sorts.) I resisted getting a handicap placard for a very long time. To look at me, most people would never guess I’m disabled (drunk perhaps, some may think on my worst days), and we all know the wrath released upon seemingly able users of handicap parking spaces. Plus, I’ve always felt so many others need those spots more than I. A concert at Red Rocks last summer changed all that. The trek from the car and back to it was nearly impossible for me and rendered my feet so swollen they were nearly unrecognizable and unusable for several days after. I gave in, asked my neurologist, was granted the placard through the DMV. I’m still reluctant to use it and have just once (though I must say, it was perty tempting when holiday shopping!).

Botox? For me? My neurologist has recommended quarterly Botox injections for me. Not to plump up the worry lines increasingly creasing my brow, but to (hopefully) make my right leg function more efficiently than my current Baclofen pills do. The “spasticity” in that leg has gotten worse, and apparently Botox can temporarily fix that. Another “Who knew?” I’ve yet to make a decision on this, have yet to muddle through the insurance matters of such.

Urination urgency. Possibly TMI but it’s a noticeable change in the past year so I’m compelled to mention it. I have no need to depend on Depend products as of yet, but gee whiz, I sure gotta run when I gotta go. Which is a frustrating situation for someone with MS who truly cannot run. So I do my best to be proactive. I no longer have to remind kids they better “use the potty before we leave,” but I sure have to remind myself to do so. Sometimes even before just “leaving” to another level of my house.

That about sums it up. I’m not thrilled about any of the above, but I’m okay. Considering I’ve lived with MS for twenty-seven years, things could certainly be far worse. They unfortunately are for so many—whether due to MS or not.

And maybe that is what I most want to share during this month dedicated to MS awareness. That everyone has something—some cross to bear, some disease or disorder or dysfunction to deal with.

Whether they talk about it or not.

Whether it’s visible or not.

Our world might be a more kind, compassionate place if we remained steadfastly aware of that. Whether related to a designated month for awareness of any sort or not.