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.
Spring has been a favorite season of mine for as long as I can remember, but it has taken on new meanings in recent years. March doesn’t just mark the start of spring, but the MS Association of America declares it “MS Education and Awareness Month.” Since a June 1997 diagnosis, every month has fallen into this category for me. Along the same lines, The National MS Society declares “MS Awareness week” to be March 10-17.
So what is MS anyhow, and why do we need to be aware? Valid questions. Multiple Sclerosis is an autoimmune disease, meaning that the immune system, which usually attacks things that make us sick, is misbehaving. With MS, the immune system attacks the coating of the nerves, a fatty substance called myelin. Imagine that your nerves are electric wires, and the myelin is the protective rubber coating around the said wires. Then the renegade white blood cells snip away at parts of that myelin “rubber coating.” When a power cord has this type of damage, it can cause a short circuit. Lights may flicker or sparks may fly, depending where the power was headed. Your biggest bundle of nerves is one that you use whether or not you’re thinking about it; you need it in order to think, in fact. The brain is, essentially, a huge, organized bundle of nerves. For an MS-laden immune system, the brain acts as the main target.
This leads to the reason for the name, “Multiple Sclerosis.” Multiple means many, and Sclerosis refers to scars. What happens when the myelin is stripped away? Scars, or lesions, are left behind. Where? The brain, of course. And this leads to that need for “awareness.” You see, the brain is responsible for quite a bit. Imagine if your home had shorts in the wiring at various spots. More than just flickering lights, your doorbell may not work, the furnace may fluctuate, your computer may flash new error messages, and the electrician would have quite a job in store. Scars in the brain can act this way also, affecting mobility, energy, balance, heat sensitivity, vision, speech, memory, and so much more. A few shorts may only affect the lights in the attic, and a person with MS may not experience very many symptoms. But one trait these both share is the same: unpredictability. What symptoms will strike when?
Do you know people who face MS? Whether or not you realize it, you likely do. Eighteen years ago, just a few weeks before we moved to a new home, I discovered that our next-door neighbor had MS. We had lived there for two years, and I had not realized this, as it was “invisible” in many ways. In the United States, it is estimated that 250-350,000 individuals in the USA currently face MS, about two thirds of these female. A person with MS may experience all or only a few of the symptoms mentioned earlier, and this may change. MS symptoms can come and go, and they aren’t very predictable, though they often become worse during stressful times or in hot weather.
So what to do? The good news is that although we had zero medications to fight MS twenty years ago, there are currently sixteen available. A cure remains elusive, but we keep coming closer. Medicine can help slow progression, and more answers are found each day. There isn’t a single, clear cause for the onset of MS, and there likely won’t be a single, clear cure, but continued research and awareness of this disease and its effects is key.
Summer used to be a much-loved season also, but MS has caused me to shift, as my body just can’t tolerate heat. I do adore new life that begins showing itself in spring, and my hope and prayer is that this “MS Awareness Month,” we can gain understanding of these hidden scars that affect our friends and neighbors with MS. As spring progresses, we can know that each day brings us closer to a cure.
You may also read this article in the “SEG-WAY News” of Grant County, Indiana, published March 9, 2018
To understand how yesterday, September 20, was a key step in my MS treatment journey, allow me to take you back in time with me, where we’ll glance through the therapies I’ve experienced. When I was first diagnosed on July 30, 1997, T.R. and I shared with the doctor that we did want to start a family, so I’d like to wait a bit before starting a medication (the first two injectable therapies were just becoming available). I remember, then, an appointment at his Fort Wayne office in October 1998, and before he could share with me the suggestion of beginning a medication, we handed him a positive pregnancy test report. (We’d stopped at a doctor’s office to make certain.) Dr. Stevens shared the encouraging information that MS symptoms usually decrease during pregnancy, sometimes extra bursts of energy will even come! What I found, I’m afraid, is that the extra energy isn’t quite so likely when two little ones are growing… but I digress. Em and Rach were born June 8, 1999, and while I was nursing, MS symptoms stayed in remission. When my body wasn’t able to keep up with the growing needs of these two little ones, I started using formula also, and this was the norm by Christmas.
So it was that in early January 2000, I started Avonex – interferon beta 1-a. The nice thing is that this medication only needed taken once a week – wonderful! Two negative things: one, it made me feel like I had the flu weekly; and two, I had to give it to myself via intramuscular injection (via a long needle). This is its own story, as my loving husband, who also hates needles, learned to administer this medication. And we gave it on Sunday night – while Monday became a day that my mother often came to help with two little ones while her daughter snapped back from side effects. (They say the side effects stop after a few months – mine didn’t.)
After about three years, when MRI scans showed disease activity – and I was tired of feeling like I had the flu weekly – we decided to try a different injectable therapy, Copaxone – glatiramer acetate. This one was given with a much shorter needle, and it had a special autoinjector pen I could use, so I didn’t have to watch the needle as it did its job. It was a daily injection, but it had very few side effects. (Copaxone is now available as an injection only given three times a week – nice improvement there!)
After less than a year, though, symptoms and MRI scans were not encouraging, so we moved to injectable medication #3, Rebif – interferon beta 1-a again. Unlike Avonex, this interferon medication wasn’t injected with a 1” needle and didn’t have flu-like side effects. It was also not as effective as we wished.
So late 2004, I was asking Dr. Stevens what he thought we should do… there was something coming that he had read about and was watching. Until it was released, he thought Betaseron – interferon beta 1-b – would give us the best results. (At this time, I was not yet using a cane daily.) The medication he had been waiting for was available January 2005, and I was the first patient in Fort Wayne to take this new medication, natalizumab – only given once a month! But then we hit a snag. On February 28, I called to schedule my March infusion, and I was told there were complications… after a while on hold, they told me the FDA had just announced that this medication was pulled from the market. So back to Betaseron for another year and a half.
During that year and a half, the cane became a necessity. But that was okay. Monthly natalizumab did return to the market, now labeled as Tysabri. There were strict limitations on how it was given, blood tests to watch for really nasty things (that had caused it to be off the market for a year and a half), but I was a proud recipient of Tysabri for almost ten years!
I say “almost” because of a 3-month break. Summer 2013, Dr. Stevens and I wished to try a new treatment option, Tecfidera – dimethyl fumarate. Finally, just two pills a day, not a needle! And he legitimately thought it would be just as effective as Tysabri. But during those three months, I went from using a cane each day to being essentially required to use a walker. And that was the end of my “no more needles” time. So Tysabri re-entered my life, and my final Tysabri infusion was July 2017.
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 Benedryl. 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.
Twenty years is a long time – but sometimes, it seems like no time at all. Time is funny that way.
1997 was particularly significant for me in a number of ways. In late May, I cleaned out my middle school classroom for the last time, saying goodbye to a career that would take unexpected turns. We moved to a new town, and my husband was now much closer to his new job at Taylor University (as he had been commuting until I completed my school year… I had signed a contract, you know). In May, I also visited my eye doctor… who led me to another doctor and a diagnosis in June for probable multiple sclerosis. (Because we weren’t busy enough the first week in June, as we packed boxes to move four days later… but that’s another story.) The official diagnosis came on July 30 – yep, it was MS.
This part of the my own 1997 story took a step in August when I attended a concert of my favorite musician, Rich Mullins – the link here will lead you to a review of the concert I posted the next day. What I did not realize was that this, the final concert of his tour, would be the last of Rich’s performances I’d have the pleasure of seeing. Of the fifteen concerts of his I had attended, this was also the first one that led to tears. During “Bound to Come Some Trouble,” the floodgates let loose. Two weeks earlier, that diagnosis had come, and I really wasn’t certain what it would mean. (Attached is a clip of this song that somebody recorded at his Wisconsin concert on August 10, four days before I had my little tissue-soaking time.)
September 19 was a day like any other – I was a graduate student, commuting to Ball State for class and work during the day, and the phone call came from my younger brother that evening. I had been listening to Rich’s “Canticle of the Plains” as I could throughout the day, but now I stepped into our back yard, where I could lean against the towering oak and gaze at the stars. The lyrics of “Elijah” scurried through my head, as I teared up and wondered about that candlelight in Central Park, and what it would mean to say “Goodbye.”
So here we are twenty years later, and I still feel that my life as it is today has been enriched by the music and ministry of Richard Wayne Mullins. His songs still traipse through my head, and I’ll still be reading scripture and thinking, “So THAT’s the spot where that lyric originated!” But a huge smile came to my face last Sunday morning when our associate pastor was describing what his two-year-old son had been doing at breakfast. Music was playing, and the little fellow left his cereal at the table and felt he needed to dance before our Lord… we were told this was a Rich Mullins album that was playing. I have a feeling this would have made Rich smile. And I have no doubt that Rich’s music will continue touching countless more lives in years to come.
This year, my own story will instead mark September 20 as a significant point. As I begin new medical path for my MS treatment, a new chapter may begin in my own story. I’ll plan to listen to Rich’s music as I venture on – and I’ll post more about that tomorrow or Thursday. In the meantime, I’m thankful for the legacy of Rich Mullins on this day in particular.
Yes, Day 3 of Gen Con came, and though the numbers were technically not larger, it seemed more packed, I think. Yesterday ended later for us, but for a fun reason, as T.R. attended an awards ceremony for the ENnies, the EN World RPG Awards. His “Cyclopaedia” blog was one of five blog nominees for an award, and though it was not a winner, two different games he assisted with did win gold and/or silver awards!
But what were those other snapshots of on Friday? The one plain shot of an elevator was a reminder of how thankful we are for the elevators and skywalks that allow us to attend events in and around the Convention Center without trying to navigate stairs or crazy twisting ramps. …We hit our first snag here, though, when Thursday evening’s elevator from the skywalk to the Convention Center was dead. And there was nobody to contact, no number to call. We ended up making our way across to a parking garage where we could take an elevator down, then walk along the city street to enter the Convention Center, once we found an entrance on that side that didn’t involve a stairway. Thankfully, it had been repaired by the time we were on the way back from our evening event.
Other events Friday included demo-ing (then purchasing) two new games. One that excited me to most was Codenames Duet, a cooperative two person version of the popular party game. Yes, it’s a neat game, but what excited me the most wasn’t just the game itself, but the fact that the convention demonstration size of the lettering on the cards was huge… so I could read it from a few feet away without problem! Though the demo sized tiles are not sold, I’m contacting the company to encourage them to make this version available! Small text size on playing cards is one of the more frustrating bits of gameplay I face, and what a beautiful solution this option could be. We shared these thoughts with those running this game room, and I will communicate with the publisher after we’re home.
One little piece of Gen Con I enjoy each year is the balloon sculpture.
This year’s Golden Dragon, representing the 50th Anniversary, is quite lovely. More was pieced together each day, and we could view the final celebratory piece on Sunday! (I didn’t attend the final popping.)
Saturday evening had also been an extra special game time, with friends gathering in our hotel lobby/breakfast area to share pizza and snacks, then play new games we had purchased – my favorite was one that is now available at Target stores. If you also grew up watching “The Joy of Painting on PBS, you also may enjoy the game where you earn points for painting fluffy clouds, happy trees, and mighty mountains. Some of those who gathered were those who rarely meet face-to-face, but know one another via online communications through Innroads Ministries.
Sunday brought one of our favorite parts of the week, the Christian worship service. This gathering of believers to sing praise, share communion, and hear a telling message from Tom Vasel. Though the speaker is known in the gaming community as the founder and host of the game review podcast “The Dice Tower,” he is also an ordained minister. His message was right on target with this audience. The three points (as most sermons possess) were simple:
1. Be content. (even when you’re attending an event that shows you so many games and things you “must have.” 2. Listen. In our busy world – and a busy Con also – take time to stop and listen. And Hear. Sometimes, we need reminders to stop talking, to take in messages from others. 3. Rest. This goes hand-in-hand with the previous note to rest… and no, resting does not indicate laziness, but it is necessary physically, emotionally, and spiritually.
We certainly appreciated Tom Vasel’s timely words, and after we left to join the final day at Gen Con, we prepared to meet with various people, then we had a unique, unexpected lunch that showed another way a business took an “invisible issue” seriously. At a daughter’s request, we decided to visit “The Walking Waffle Company” in the food court of Circle Center Mall. Their menu offered different meal options – the breakfast waffle with bacon, eggs, and cheese looked lovely, and the chicken waffle sounded fun. I have an unusual, rather annoying allergy: black pepper. As I do at any restaurant, I asked the gentleman taking orders if the chicken or breakfast waffles contained any black pepper. He thoughtfully responded, “The eggs don’t, but several items do, and I’m afraid pepper could remain on the grill and leach into the eggs.” He then carefully considered and found that the Waffle Club Sandwich should work for me. Not only was he correct there, but I found a new, unexpected treat. I know that food allergies can be tricky, particularly when they’re uncommon. I do appreciate a private restaurant owner, even in a popular food court, taking the time to accommodate a silly allergy.
As we walked toward our room after lunch, a game-editing friend passed us in the hallway. John had injured his foot and was in a wheelchair (where he had not been when I talked with him on Saturday morning). “The world is different from this view – it’s quite… disconcerting.” John then described an interaction he’d had with a taller friend – about 6′ 5″ – and he said they were so far apart that he felt cut off from the rest of the world. Trying to converse with a taller friend woke him up to a different perspective.
Gen Con 50 did hold more than the snippets I described. So many neat conversations with people from around the world, here just a ninety minute drive from our home. Games and costumes and celebrations and more. But me? My “battery” is such that I took a nap each afternoon, while the rest of the family worked at a booth each afternoon. I enjoyed and appreciated the experiences I had – Nice job, Gen Con 2017!