Category Archives: Multiple Sclerosis

Deafness, Low vision, Multiple Sclerosis, Photos, Running, Visually Impaired

Capital City River Run 2022

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I ran another race! This one was kind of special because my plan was to run it solo. Back in May I had a nice conversation with the race director and she made me feel really confident that it was something that I could pull off. And that if anything were to happen to me along the course, I would be well taken care of. The Capital City River Run is a race right here in my hometown. They offer a couple different distances, with the longest being the half marathon. That’s what I ran this weekend. The people involved in this race are incredible and there’s just something magical about running around this city that holds so many memories of my life over the past 25 years.

Hanging out with the back of the pack, waiting for the countdown. I am super grateful for the enthusiastic and supportive pacers.

To be honest, right now, four hours after I finished running, I’m wondering why I even do this to my body. I ran a strong race, my legs were holding up well, but a short time after it was over, I started feeling really ill. Stomach upset, nauseated, and lightheaded. I’m feeling a lot better now after a nap and a shower, but my body is still questioning my life choices.

The bottom line is, I had FUN. And I’m so glad my husband reminded me of that when he dropped me off that morning because I was so nervous and scared that I was forgetting the whole reason I was there in the first place. To have fun. Running is fun. People who run are fun. And when those inevitable hard days come, it helps to remember you ran some really awesome races that were hard to do but you ran them. You set goals and you didn’t give up on those goals. You met people along the way who cheered you on even as they were battling their own struggles, fighting to finish their own races.

And fast forward; it’s now Tuesday. I had to pause writing this post on Sunday because I was just so tired. And I didn’t finish it on Monday because Fatigue. Level 10 fatigue, all day Monday. I wasn’t in so much pain as I had expected to be in. Just a bit of hip pain on the right side, but I was definitely feeling more fatigued than I had anticipated. Y’all, I could barely hold my head up sitting at the kitchen table to eat my breakfast. All day I was struggling to move. Fatigue is the most common symptom of MS, and I’ve learned to avoid it most of the time by keeping up with regular running. This race, however, kicked me right in the rear. Leading up to the day of the race I had already decided to dial it back on the long races, because I had so much trouble keeping up with the training, but Monday, that decision was cemented in my mind. I am super proud of my accomplishment, but I need to take it easy for awhile. My body made that glaringly obvious – the debilitating fatigue that keeps me from doing basic, simple tasks is just not worth it right now. Maybe down the road I’ll set my sights on another pie in the sky goal, but for now I am ready to do some serious resting.

This was Sunday, post-nap. I ran 13.1 miles and did not die!!
Hearing Loss, Multiple Sclerosis, Stories

The Start of My Hearing Loss

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It was early August, 2013. The first week, in fact. I remember because I had jury duty. A welcome reprieve from my demanding job as Accounting and Collections Manager. I remember sitting at the back of the courtroom, waiting for my name to be called, and there was this subtle ringing in my ears. The sort that you might have after attending a loud concert. I believe it was constant, but I was able to ignore it most of the time. Until I went home and had the added distraction of children arguing. Kids can be so loud sometimes. I snapped at them to be quiet, which was not unusual for me to do. However, Mike must have sensed that something was wrong because he told me I should call the doctor in the morning. I did call, and was able to get into the family doctor the following day. By this time the ringing was becoming more persistent, and now when people were talking to me, their voices sounded strange. It was hard to describe then, and even more so now after all this time. Tinny is the word I think I used. As if people were talking into a tin can. That’s just a guess of course; I have no idea what that would actually sound like. This all left the doctor thoroughly stumped, and so she referred me to an ear, nose, and throat (ENT) specialist.

I called the specialist to schedule an appointment that afternoon but they couldn’t see me for a few days. “A few days” doesn’t seem like much, but it turned out to be an eternity. That phone call was the last call I made as a naturally hearing human. By the time I went to see the specialist, those few days later, I had lost any ability for word recognition. What I could hear at that point, which was diminishing quickly as well, sounded garbled and distorted. Turning up the volume or talking louder did no good.

A friend accompanied me to the visit with the ENT, and it was a good thing she did, because I had no way of knowing what was being said to me. The ENT pulled his hearing aid off his own ear, held it in his hand, pointing to it as he spoke. I tried desperately to read his lips, while also looking at the hearing device as he pointed. It was useless. Even skilled lip readers only understand 30% of what’s being spoken. Don’t let the movies fool you; lip reading is very difficult, and very inefficient.

I went home that day with a borrowed hearing aid – thank goodness not the one the aging ENT had been using – and was instructed to try wearing it for at least an hour a day. It was no use. It did amplify sound, but the sounds were so distorted it was impossible to understand anything. It was just frustrating noise. Hearing aids were not going to help me.

I was soon referred to an ear doctor, an otolaryngologist to be exact. This office specialized in hearing issues, and was not at all surprised by my rapid onset hearing loss. They got right to work at treating it the best they knew how, and that meant steroid shots. In my ears. Now, I can think of worse areas to have needles inserted, but ears are right up there. I had to lie on the exam table, on my side, as still as possible. The medicine was injected into the innermost part of my ear and I had to sit there for a half hour while the medicine dispersed. It was very painful, and I gripped my husband’s hand for the entirety. He never left my side. After the first ear was done, I had to turn over and do it all over again with the other ear. Once that special torture was over, they sent me home with a prescription for oral steroids where I would wait and hope for a miracle.

The miracle I was waiting for did not come.

Journal Entry 9/11/13: “I am nervous and anxious. Every minute of the day. The tinnitus is relentless and loud. The steroids make my legs shaky, and my vision blurred. I worry because I can’t hear what’s going on around me. If I can’t see it happening, I’m unaware. Where are the children? Is the water boiling yet? Did I remember to turn off the garbage disposal? This is difficult for a control freak. I have to let that go.”

I found out later that it was not the steroids affecting my vision…

Coffee, Coronavirus, Multiple Sclerosis, Running

Mindy’s Day of Fun

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I have the house to myself on a cold but sunny winter Saturday, for 2 hours. So naturally, I’m snuggled on the couch with a cup of coffee and cookies, jamming out to Lauryn Hill, Nas, and Tupac while I prepare our tax returns. I am living The Life, people. (This is not a joke. Preparing tax returns relaxes me. I am THAT nerd.)

I would be out running (or on the treadmill) but my lungs are still recovering from Covid and I am trying to give them more time to heal up. That and I’m super fatigued so it would be a massive struggle anyway. Sometimes your body just screams “Rest!!” and you are better off listening to it. Even when you would rather be out there doing everything.

Yep, Covid. This Omicron variant is spreading like wildfire around these parts, and our family was hit with it earlier this month. The rest of the fam had really mild symptoms but I was pretty wrecked for several days. My doctors had me go in to get a monoclonal infusion to treat it. I was actually starting to feel better by that time, but they wanted me to have it as a precaution because I guess they are seeing a lot of people improve but then get worse again, and because I have MS they didn’t want me taking any chances. I’m still a little fatigued, but that’s nothing out of the ordinary for me. My throat is still a tad scratchy and I’m coughing a little, but I would say I’m almost back to full strength.

Welp. I’m going to get back to my taxes but perhaps later this week I’ll update again with other news and ramblings. Perhaps?! We’ll see…

Family, Multiple Sclerosis

Coping with pain

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Warning: After a new puppy post this might be a real downer. Please bare with me.

I don’t think I talk enough about the pain I experience on a regular basis. Partly because I feel like it’s not so bad, in comparison to other people I know living with chronic pain, and partly because I don’t want to sound like I’m looking for pity. I am definitely not looking for pity. In fact, pity is a huge annoyance to me. When people hear about my physical struggles, what I went through and live with, the most common response is, with a wrinkled brow and frown, “Oh, I’m so sorry.” (In fact this just happened to me earlier this month at my son’s doctor appointment). While I appreciate the sentiment and concern, deep down it makes me feel small. I hate to be pitied. I only share because this is a blog about my life, and my ups and downs with multiple sclerosis.

So, back to the pain (you Princess Bride fans are quoting now, aren’t you? “To the pain!”… Focus, Mindy…) I get a lot of headaches, and if I don’t medicate soon enough when I feel one coming on, they are debilitating. This happened two days ago. I felt it coming on but was so busy with the new puppy I didn’t get around to taking my medicine in time. When I finally sat down and took a pill I was able to turn all the lights off and rest and wait for the medicine to kick in. When you wait too long to take it, it isn’t as effective, but it at least takes the piercing edge off. So when I felt another headache coming on last night, I didn’t wait to medicate. And this time I took two pills, just to be extra proactive. This worked, and I was able to enjoy the evening with my family. Lessons learned.

I also experience body aches at times. An all over pain, both like bruising tenderness and pins and needles. While I can’t predict the headaches because I don’t know what’s causing them, I can predict this all over body pain. It happens after lots of physical activity. I compare it to how you feel after a bad car accident (I’ve only been in one, decades ago, but I remember the pain). I had this pain after I chaperoned my daughter’s middle school camp, after girl scout camp, and even after Thanksgiving. And now I’m experiencing it after a few days alone with a brand new puppy. *Sigh*

So when I know I’m going to be doing something that involves a lot of activity, I have to plan in a couple days following in order to recover. I could avoid the activities altogether, but the memories I make are worth the pain. I’m not giving up on my family or friends just for a few extra days of comfort. Some things in life are worth it.

Cochlear implant, Deafness, Disability, Hearing Loss, Low vision, Multiple Sclerosis, Photos, Visually Impaired

Mindy rides the bus!

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Some things that are easy and simple for most people are things that became scary for me 8 years ago. When I suddenly lost my hearing and then half my vision that fall of 2013, it was a drastic paradigm shift for me. The cochlear implants help a lot, but they don’t provide me with 100% normal hearing. And nothing can be done about my 60% visual field loss.

I still remember vividly standing in my kitchen all those years ago, terrified to cut an apple. I couldn’t see much and I was so unsure of myself. I feared I would cut off one of my fingers. However, after some encouragement from a friend who assured me I could do hard things, I took what felt like a massive risk and I cut that apple.

I can do hard things.

I’ve been working very hard these past 8 years to find some sense of normalcy in my life. There are still a lot of things I cannot do, or can only do in a limited capacity. I cannot drive or cut straight lines. I can’t seem to determine north from west anymore. I get lost very easily. Hearing and reading are both extremely exhausting because they take so much mental effort.

But what I’ve recently learned I can do is walk half a mile to the bus stop. I can get on the bus, pay the fare, sit down, and listen to my phone with my cochlear implant Bluetooth connection to be notified when my stop is approaching. I bought my first bus pass several years ago and I didn’t use it for the first time until this year because I was afraid. I had never ridden the bus before, and I was afraid I wouldn’t be able to hear or read the cues and I would miss my stop, get lost. Not know how to get home.

But then I remember that apple and am reminded that I can do hard things.

My first trip was a couple months ago with my kids, before summer break had ended, and they were there as a safeguard to be sure we got off on the right stop. My second trip was last week with my daughter, who was a huge help calming my nerves. She viewed it as an adventure, and was not worried at all about getting lost.

My third trip was today and I went alone. All by myself! It seems silly to me that I get such a sense of achievement and excitement at riding the bus by myself, because regular people do this every day without issue. However, I have to remember that the functions I have lost between my vision and hearing, do make this more of a challenge. Riding the bus was an entirely new thing to me, so I didn’t have any old habits or familiarity to draw from. It took a lot of courage for me to take these trips and I should not discount that. This was hard for me, and I did it anyway. This was a fear conquered, a giant slayed.

Mindy rides the bus!

I can do hard things, and so can you! What hard thing are you avoiding? What’s holding you back? I dare you to stare that hard thing square in the eyes and just do whatever it is.

You can do hard things.

Family, Friends, Multiple Sclerosis, Photos, Running

I did it!!

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Well, it’s a week post-marathon and I’ve put this off long enough. I was hoping to write a beautifully elegant recap of the marathon, but you’ll just have to settle for my jumbled thoughts and memories. Keep in mind this was written in spurts throughout the week, if that tells you anything about how my recovery was going.

I’m still processing the reality of what I accomplished by finishing a marathon. I mostly feel relief and post race pain. Maybe when I’ve physically healed it will start to hit me. I want to tell you all about it, I really do, but I’m honestly just tired and sore. I need to rest and recover.

****Here is the pause while I am recovering****

Okay. Still fatigued but my brain is feeling much better. So, I finished in just under 7 hours. That’s nowhere near the time I had been hoping for. However, it occurred to me this morning that the number 7 is Biblically symbolic of completion. And this race was certainly that. Not just a completion of 26.2 miles, but the completion of the goal I set to prove to myself that MS hasn’t won.

Running was never my thing. Running was what my brother and sister did. However, there was a point along the way, along this journey with MS, that I discovered I could run. And I remember sitting at that table with Brett and Kari, out for a drink to celebrate one of our birthdays, when I told them both – “I think I want to try running a 5k.” That was six years ago, and here I am running a marathon. Incredible.

“One step. One punch. One round at a time.” This was the mantra Kari and I kept repeating in the last several miles of the race, in order to keep me going. (It’s from one of the Rocky movies but we weren’t sure we got all the words right.) I was losing motivation quickly. My legs were failing me in ways I had only partially anticipated. I had developed a mysterious lean to the right, my vision was even more foggy than usual. It was clear I was not going to finish anywhere near my time goal, well after the official race had closed down. But I set this goal, I decided back in the spring I was going to do it, so quitting was not an option. Kari reminded me of that. My son, Luke, ran the last 5 miles with us, cheering me on. My brother, Brett, was there for the last 2, lending an arm on the left side to keep me steady. There was a whole group of family and friends waiting for me at the finish line.

As the four of us (Kari, Brett, Luke, and myself) rounded the corner towards the finish, Brett and Luke snuck away and Kari moved further to the right. They knew this was my race and were gracious enough to let me finish on my own. Stubborn me, I did not want to be carried to the finish. I wanted it to be clear I could cross that line on my own two feet. And maybe that’s a little selfish of me but I had to know I could do it.

My sister and I were crying as I hobbled toward the end. I’m sure many others were crying too. I crossed that makeshift finish line and fell into my friend Sarah’s arms. Oh, Sarah. Let me break for a minute to tell you a bit about her. We’ve been friends for a couple decades. She’s the one who helped me get the job where I met my husband. She’s also the amazing woman who cared for me daily when I had my most devastating relapse in 2013. She has fed me, clothed me, even helped bathe me, when I was at my very worst. She has never shown me pity, but always strength and courage. She brings out the best in people when they can’t see it for themselves. She is an incredible human being and I’m so grateful she came to support me at this monumental race.

There’s so much more I could tell. My daughter, Natalie, smiling at me and reminding me, “you were in a walker!”. She knows this was big. She’s proud of her mom, yes, but my hope for her is that this memory will be a constant reminder that she also can do hard things.

And my husband, Mike. Sarah handed me off to him at that finish line. By this time my legs were collapsing and he wrapped his strong arms around me and wouldn’t let me fall (literally and figuratively!). He knew all along that I would finish this race because he knows me. He knows my stubborn determination and he knows how much this meant to me.

I guess all this is to say that running a marathon was not just about the running. This was an experience I’ll never forget. Yes, I may forget the pain, and the lost toenails, and the weeklong fatigue I felt after it was done. I may forget all the long training runs and the miles I put in each week. But I will never forget all the people who supported me along the way. There were lots of people at this race to cheer me on, but there were so many more back at home who have been rooting for me to slay this giant. And I couldn’t do life without any of them. Thank you all, for walking by my side and for carrying me when needed. My hope now that this crazy race is over is that I can put all my energy into giving back to you. I’m truly grateful.

Movies, Multiple Sclerosis, Photos, Running

Last long run!

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Saturday was a memorable day. Actually, the whole weekend was pretty dang awesome. My sister and I have been talking for some time about having a Rocky movie marathon, and we finally had it set but then had to reschedule. As it turns out, the weekend we settled on happened to also be the week of our final long run of our marathon training – 20 miles. So it worked out perfectly that we could watch some movies and then take a break to run 20 together.

The plan was to get up early and start running by 5 am to beat the heat for a good chunk of the run. When I told my son about this, he wanted to join us for the first couple miles, just to see what it would be like to run in the dark. I honestly didn’t think we would be able to drag him out of bed at 4 am but he surprised me. He was up and ready to go without any trouble!

Kari had the loops planned out so we were able to stop back at the house after the first two miles, and then again after another couple sets that I can’t recall. I just know we got some short breaks for bathroom and fueling and we completed the 20 without much issue. We learned a lot on this run that will prepare us for race day and we both feel pretty confident that I’ll be able to complete the distance. The only thing I’m a little nervous about is finishing within the time limit, but I think with the taper period and changing up my run/walk breaks a bit, I might have a good chance at finishing in time. That’s the goal anyway.

I was really surprised to not experience much foot drop throughout the 20 miles, and my leg only threatened to give out once, and that was on our very last mile. That just shows the progress I’ve made throughout this training process! I got some major friction burns on my back from my hydration pack, so I won’t be wearing my “Beast Mode” tank for long runs anymore. Not sure what happened there. Also, my problem toe blistered pretty good under the silicone toe cap, but I didn’t feel it much during the run so I can live with that too.

I am very happy to say that the hardest part of the training is over! Now I just need to stay on track with the remaining training runs until race day. After that, I’ll probably stick to 5Ks and 10Ks for awhile. I’m not gonna lie, this has been pretty rough but I think it will be worth it. I’ll wear my medal proudly and maybe reward myself with a tattoo to commemorate the achievement 😉

Multiple Sclerosis, Photos, Running

Fourteen on the 14th

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This week’s long run was 14 miles, and the weather was looking perfect for a cool, early morning run. I use my watch as an alarm as opposed to the bed vibrating alarm and I had it set to both 6:30 and 7:30 am, just in case I slept through that first one. I did not sleep through either alarm. I was awake at 5 am. My body did not want to get out of bed but I thought I could at least start on hydrating myself for the long run ahead. So I took a gulp of my bedside water and went back to sleep.

An early morning run would have been really nice, but my body just kept telling me it needed more sleep. So I didn’t actually get up and out on the pavement until after 8:30. I wasn’t terribly worried because it wasn’t supposed to be super hot today. And in hindsight, I’m glad for the way it worked out because my neighbor drove by as we were both leaving the neighborhood and she gave me some of that good will and encouragement that always helps keep me motivated for these long runs.

I also spotted a neighbor just as I was approaching the trail entrance, only I didn’t recognize her as I had only met her two weeks before on a long run (I’m sure my visual impairments didn’t help). She shouted “Hi, Mindy!” and I shouted a meek “Hi” back to her as she passed me. Only then did I realize who she was but it was too late to address her properly. She’s training for the same race I am, only a different distance so I’m not sure I’ll see her on race day. It’s so much fun meeting other people out on these weekend runs, smiling and waving and wishing them “good luck”.

When I returned from this challenging 14 mile run, my husband was home to greet me. He asked me how it went and I said proudly that I had finished, but that it was brutal. He said there’s a reason why not many people run marathons. I’m still not entirely clear why I signed up for this but I’m committed to finishing on my feet. I have read somewhere that less than 1% of the U.S. population has finished a marathon. Far less, actually. Not 0.99%. We’re talking more around 0.15%. A super small percentage. And out of that percentage I’m guessing a much smaller percentage has M.S. Because who in their right mind has M.S. and decides to run a marathon? Me. This girl right here. I am not in my right mind. Clearly.

But enough about my mental state. Let’s talk running gear! I think I’ve almost settled on my race day gear. I’ll have the hydration backpack for sure, and it will be filled with cold water mixed with Tailwind electrolyte powder. I’m going to have to wear sleeves because the backpack chafes a little and that’s just annoying. But it will be cooler in September so that shouldn’t be a problem. I’m going to keep peanut butter filled pretzels in my running belt, because I love them and they give me a little protein, a little carbs, and salt. Plus, they are bite-size and don’t melt!

I have my race day shoes and I’ve been breaking them in this week. They are half a size up so my toes aren’t squished, but I still blistered a little on my problem toe, even with the silicone cap. Oh well, it’s more annoying then painful, and I am pretty sure it will heal up once I ease back on the running this winter. My race day shoes are pictured above and you can see a little ring of mud around the bottoms. Good thing I wasn’t thinking about returning them! The bridge wasn’t flooded but it still had some low muddy spots. I walked through it on the way out but on the way back I climbed up on the berm just for funsies.

It was a good week of running and I’m starting to look forward to the race. I have one more super long run, 20 miles, and that one I’ll be running with my sister who is also serving as my guide runner at the marathon. It should be epic, so stay tuned!

*As I’m sharing my stories and running journey I am raising money for the National MS Society and I would love your support! Visit my fundraising pages here or here to learn more.

Multiple Sclerosis, Photos, Running

Why I Run

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Another weekly marathon training update! This week I wanted to share how I came to start running.

2020 Capital City River Run Half Marathon

Some people have asked me if I have always been a runner. The answer is an emphatic NO. I was the kid in high school who waited until my senior year to take that dreaded gym class, and I cried trying to run the four laps around the track because it hurt so bad. I loathed running.

When I had the MS relapse in 2013 that left me deaf and half blind, I also struggled to walk unassisted due to nerve damage in my left leg. I was at the lowest point in my life, physically and emotionally. I had thoughts of giving up, throwing in the towel, but my friends wouldn’t let me. They came to sit with me. They prayed for me and walked with me, both literally and figuratively. I started walking around the block with a friend, using the walker and going tortoise slow, but I was doing it. After some time I was able to trade the walker for a cane, and soon I was well enough to walk my kids to the bus stop in the mornings. On one of these mornings I was walking home after the school bus left and a question entered my mind – could I jog a little without falling? I just wanted to see what would happen. How would my legs respond? If I’m able to walk unassisted, maybe I could jog unassisted. I just had to know if it was possible.

And friends, that thought is where this all started and it’s what keeps me going to this day. I just want to see what more my legs will let me do. I want to keep pushing the boundaries of this broken and scarred body. I don’t run races to beat times or earn participation medals. I do it because I CAN. Eight years ago I didn’t think I would be able to walk from the couch to the kitchen, and here I am running. I am constantly amazed to look back and see how far I’ve come. I couldn’t do this without my faith in Christ and I certainly couldn’t do it without the support from my friends and family. That’s you! I couldn’t do this without you!

MS affects people of all kinds in all different ways and threatens to steal our lives and our joy. I want to be an encouragement to others that it’s never too late to fight back. I am in your corner.

Will you join me in supporting others living with MS? Please like, share, comment, donate and help me reach my goal!

My Fundraising Page

Multiple Sclerosis, Running

Easy weeks

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This past week of marathon training was an easy one, because I had plans to be out of town for the Highland Games in Livonia, Michigan with a friend. The festival turned out to be great cross training between all the walking and the dancing. We had a BLAST. My legs were hurting the following day but with a little rest and naproxen they are almost back to normal.

Without the weekend long run, I still logged 18 miles of running. My toe is healing, with the use of the silicone toe cap. I cut the nail all the way down, so it still looks pretty gnarly, but it doesn’t have any pain or tenderness and that’s a good sign. I did buy a new pair of running shoes, a half size up, so I can start breaking them in. I plan to wear them for the marathon and keep my feet happy as long as possible.

Speaking of happy feet, I bought some Balega socks at the recommendation of my sister (aka my marathon guide runner and super awesome supplier of moral support) and ran with them last week. Oh. My. These socks are like heaven. I have never been dissatisfied with the running socks I’ve been using, but these Balegas are a really nice treat for the feet. So I think I’ll reserve them for all my super long runs.

So while this week didn’t feel as productive as far as miles logged, I certainly made some headway with race gear preparation. Last week I was starting to doubt I could do this race, but this week I’m slowly regaining some confidence.