As Disability, MS, and other similar Awareness Months draw to a close, I thought this would be an appropriate time to share a in a different way. Describing how MS really affects me can prove difficult, outside of a list of concrete symptoms. So how does one communicate this? How about poetry?
National Poetry Month begins on Monday, so it’s time for poeming and pondering.
“Scars” by Angela Knight
a Misbehaving System is what I call it.
You can call it what you wish.
Cells that should kill germs harm others instead, and what do they leave behind?
What do they take away?
Energy. Control. Ability. Freedom.
“It’s all in your head,” you say.
And I agree.
With scars in my head,
I sometimes wonder what’s left.
But then I hear an inner voice, one of assurance:
“Scars are not alone. When you look, you’ll find unexpected gifts:
The gift of Empathy to offer an ear to hear of invisible pain, filled with frustration and hard to see with the outer eye.
The gift of Peace beyond understanding, easier to feel when busy-ness is forced aside and stillness found.
The gift of Love you’ll feel as dear ones see through and beyond your scars, and the truest love, shown through one whose scars bring new life.”
More than Scars.
That’s what I call it.
You can call it what you wish.
What am I talking about? Well, “MS Awareness Week,” March 10-16 2019, officially marked that week, though it seems repetitive to me. Every day, week, month I face symptoms of what has become my continuing journey. (Even though I managed to post this one day after the week ended, my daily awareness level hasn’t changed. I just need to manage time more effectively.) This journey started for me in June 1997, and the scenery has changed along the way.
For any interested in reading about the said “scenery,” I invite you to a 2017 post, “So what exactly does MS look like?”. When an otherwise functional nervous system is dinged around by a confused autoimmune system, it can wreak a bit of havoc. Not fun, and mostly invisible to the outside observer. My husband also posted about this particular week at his own blog, Freelance Knight. (Thank you, T.R.!)
Though MS has painted paths of life I had not planned, I do know that faith and family continue to be key. Thankful for medical progress and assistance each day, I look forward to seeing how God plans to use what I do have, both joys and struggles. Thank you for joining me for a moment on this journey!
During our earlier years of marriage, T.R. and I enjoyed going to state parks, museums, or fun little spots that we happened upon. After five years of marriage, these walks involved pushing either a double stroller or two smaller strollers. And time moved on. When the former stroller riders were in kindergarten, my own walking abilities started to falter, and I began using a cane on occasion. Then always. Then after medications became less useful, when those two young ladies were in junior high and high school, I started using a walker in the home and at church, and a wheelchair when we traveled or attended school events. As you can imagine, the walks with my dear husband dwindled away in time.
The wheelchair does allow us to traverse the world together, as long as paths or streets are smooth and free of debris and potholes. Which means that very few area streets worked for walks, and many paths were simply not passable. We searched for a wheelchair that was more all-terrain, but we what seemed like a simple request was anything but. The wheels on a wheelchair are generally not meant for use at uneven or rocky paths, and why would we want such a thing? Well, we were determined to find such a thing.
We had seen “jogging strollers,” allowing a mother (or father) to transport a young one, so I swallowed my pride as I assisted my dear husband in the search for an adult version of this. As we called mobility-related places (wheelchair sales locations), we came up dry. But we live in the age of the Internet, we knew there had to be something. Somewhere. We tried different semantics, and the term that finally worked was “push chair.” The Axiom Endeavor , though pricey, appeared to be what we were looking for. Then came the next step. This was Autumn 2017, and after we communicated with the manufacturer about the specifics of this item, we started our research into cost and insurance. I won’t share all of the details here, but suffice it to say that several medical reports and letters assisted in the final outcome, and by late December the push was in our possession!
Winter in Indiana… not the time for an outdoor stroll. So the unnamed Axiom sat unused and alone until the weather broke, and I believe it was early May that the first outside jaunt took place. A “push chair” is just that – an extremely well-engineered lawn chair of sorts, with supports for over 250 pounds of weight (thankfully not all necessary), with three large, sturdy tires. It could be pushed by my loving husband so we could take a walk of several blocks around our street. And that, my friends, shows how this is, indeed, a “love story.” A grown man bent over backward to research and obtain this item, and now he is pushing his wife in it, with them having conversations with folks along the way. He takes care of it, adds air to the tires when necessary, assists her in getting in and out, and demonstrates both patience and chivalry as they take their walks.
I’m jumping ahead in the story, though. What could we call this contraption? We’re not parts of the Facebook Age for no reason, so we asked for suggestions, of course. After receiving several fun acronyms as ideas (no, Steve and Roger, it was not going to be S.M.O.O.C.H.), we started narrowing it down. Barbie’s “Harriot the Chariot” was in the
running, but then we both thought a nod to an 80’s television show would be perfect. “Knight Rider” it is. Friends jokingly suggested we adhere flames to the sides, but that is far from necessary. We’ll each wear a weather-appropriate hat, sunscreen when necessary, and a coat as needed, but we can go on walks together again.
And that was the biggest reason the Knight Rider resides now in our home. My “Knight in Faded Denim” still wishes to share walks with his wife, even though many things have changed. He still loves ME, and I certainly love him!
I am frequently asked about my current MS medication regiment, so this is a good time to catch up my readers. On September 20, 2017, I wrote about my first dose of Ocrevus:
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My MS has changed over the years – originally diagnosed as “relapsing-remitting,” Dr. Stevens now classifies it as “relapsing-progressive.” Progressive forms of MS have fewer treatments available, but this spring, a new one entered the field: Ocrevus – ocrelizumab. News stories showed promising results, and though our goal is for this medication to help prevent further progression, I can’t help hoping for a smidgen of improvement. Yesterday, I had my first half dose, and the second half will come in two weeks. Then, I will receive this infusion once every six months.
What will it do? I don’t know. I can tell you that my only reaction was a bit of an itchiness and redness that was zapped with Benadryl. So it is that September 20, 2017, marked the first page in this chapter of my medical saga – time will tell what the other pages hold.
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The immediate part that came next had absolutely nothing to do with the new medication, though I first thought it did. That itchiness and redness, then hives that followed? My thick, dark, curly hair (with natural silver streaks) had been hiding something I had never experienced: head lice. We traced back the source, and it has since been dealt with (not in our house, church, or school), and my dear husband assisted me in winning the fight against the nasty buggers. Once my locks were louse-free, I had them chopped two inches shorter, helping me avoid tangles and other issues. So…the second half of my first Ocrevus dose came about four weeks after the first, and those four weeks were no picnic.
Because of the unrelated craziness, it was difficult to tell if the medication was making a difference in my health. With this medication formulated for one infusion every six months, I do appreciate that I don’t have to go in as often or treatments. Is it effective? I can tell you that that the debilitating tongue and jaw problems (hypoglossal and mandibular neuralgia) that hit me two years ago have not returned. This is indeed HUGE.
Three months have now passed since my third Ocrevus treatment. I do take other daily medications in relation to symptoms, but I feel like I’m at as level of a spot as I’ve been for a while. I must admit that when I first started this medication, I had truly hoped to see a few glimmers of improvement. What I think I have found is a more solid line that may be slowing down progression. MRI scans have shown no additional scars in my brain, and we did find scarring in my spinal column… it was encouraging, in some ways, to find that there was a clear reason for some difficulty walking. Did those scars come before or after Ocrevus? I do not know, but I do feel that, paging through the current therapies that fight this MonSter, Ocrevus is the one that serves me best.
Several years ago, I was an example patient for a medical school course Dr. Stevens was teaching. After I shared my symptoms and they guessed my diagnosis, he shared that my disease was trying to progress. He said he’d give this an 8 on a scale of 1-10, with how fast it was trying to move. And this would explain why he had tried so many options. In November, my husband and I had a consultation with the director of the IU MS Center in Indianapolis, and I was encouraged that he agrees completely with Dr. Stevens. The trail thus far has been appropriate, and of two medications that could help me, Ocrevus is the best choice for me.
So for those who ask how this is going for me, the answer continues to be a process. It has involved a fine-tooth comb, patience, education, faith, and partnership. As I continue travelling this odyssey, I will certainly share snippets of life. The next blog post proves to be a fun one, “Knight Rider.” Is it an 80’s series about a talking car? Likely not, but stay tuned…
Happy 2019, friends! It’s been entirely too long since I have posted to this blog. Am I still battling “invisible issues,” you ask? Hmmm… will there be snow in January?
Yes, life with disability leads to paths I never would have foreseen. MS may not be a walk (or stroll) in the park, but blessings still come our way. Though I’m not one for “New Year’s Resolutions,” I do wish to give my blog a jumpstart of sorts. I intend to post at least twice a month, sometimes more. Topics ahead include our “Knight Rider,” driving decisions, my Ocrevus experience, caregiver challenges, chair that offers a lift… and definitely National MS Awareness month and National Poetry Month
So why “Queen Anne’s Lace” on my cover page? For one thing, it’s one of my favorite wildflowers. I also love how it pokes up where it wasn’t planted, sometimes considered a weed. I’m convinced that people would pay good money to grow this bloom if it weren’t so common. I find blessings in this flower that was not purposely sown. In a similar way, I wish to bring attention to blessings that may be found despite very real struggles.