Category Archives: Multiple Sclerosis

Abbey trip reflections

So, folks. I’ve gotta get this nagging voice out of my head, so I’m just gonna spill it. I said I would talk about what I heard at the Abbey almost two weeks ago, so here goes nothin’.

The biggest revelation, the biggest message I heard God speaking to me was that I need to keep sharing my stories, and with that I need to get back to writing my memoir.

We were sitting in the chapel, following along with the Psalms the monks were chanting, and they came to Psalm 40, which I recognized to be the one given to me when I lost my hearing. Given to me, as in, I heard the song “Jesus, Lover Of My Soul” one time in a movie many years prior, and then it was all I could hear in my head when I could very literally hear nothing else. That song, that Psalm, became my mantra for over a year. The words “taken me from the miry clay” resonated with me on so many levels.

Reading the Psalm in church got my attention, but that’s not the part that spoke the loudest to me. What spoke to me most was when I went back to the cottage and read the Psalm for myself. Verse 3 in particular, and I immediately felt God saying that I needed to continue writing – “singing my song” – so that people will see Him and put their trust in Him.

He put a new song in my mouth,
    a song of praise to our God.
Many will see and fear,
    and put their trust in the Lord.

What my sister helped me see was that writing my memoir is much like training for and running a long race. It takes time, it might not look pretty, but the most important thing is that you keep working towards the goal. The key is consistency. So even if it’s just a half paragraph a day, or even every other day, it’s okay. I just need to be committed to not quitting. I will get this memoir written. It’s going to take a lot of patience, and you can bet I’ll need a lot of help, but dang it I’ll have it done eventually.

I have over 7000 words written at this point, and I’m kind of stuck as to where to go next, but I’ll keep chipping away at it. I’ve told a lot of small stories to make up those 7000 words but there is still a surprising amount of detail left to tell in order to make it a complete story. Some of those are details I don’t possess, memories that aren’t mine to tell because I was either sleeping or only somewhat conscious, but that’s where I’ll need to utilize my new “asking for help” skills.

It’s quite intimidating, the idea of writing a book. I have author friends and family so I know it’s possible. Normal human beings do it all the time. I just worry that it’s not possible for me, because I have cognitive struggles from the M.S. But that’s the primary thought that’s kept me from working on the book, so I need to stop thinking it.

Cognitive struggles due to M.S. Big Fat Sigh. This is probably one of the most difficult parts of the disease for me to accept. I was always the smart girl, the know-it-all, the straight A student. “That Mindy, she’s so smart”. I never had to struggle to understand things. That 4.0, smart girl persona? I let that define me, and now that that part of me is being chipped away, it seems my self-worth is being chipped away right along with it. This is painful to write about, but maybe it needs to be said, because as I’m writing this I am getting rather emotional. And in my experience, that lump in my throat is usually the first step towards healing a deep wound I have been ignoring for far too long. I need to swallow that lump, along with my pride.

I struggle daily with forgetting things. I know people say this is typical of aging, but I know it’s more than that. I also struggle with comprehending simple concepts, whether they are new to me or not. I struggle with holding conversations and putting ideas together. I struggle hard with writing, and this is the most heartbreaking. I have always loved writing. I have kept a diary since I was a little girl. I started blogging back when you had to write your own code. I journal thoughts in my head throughout the day, and sometimes those thoughts actually make it to my written journal. Just today, my laundry folding was interrupted by this blog post forming itself in my head, itching to get out.

Writing is part of who I am, so when I set such an ambitious goal as writing a memoir, having never written a real book before, you can imagine it’s frustrating to feel like you are unable to make any progress. When your brain just refuses to make the necessary connections, it’s very discouraging.

But! I read a meme recently that reminded me that when God calls us to something, he factors in our failures and frailty. So I’m taking that as truth and leaning on Him, always and forever.

Cautiously optimistic

https://multiplesclerosis.net/living-with-ms/differences-after-ten-year-mark/?utm_source=facebook.com&utm_medium=promoted&utm_campaign=Aubagio-CAS&utm_confid=soviec04u

This article came through on my Facebook feed yesterday and I found it interesting because this week marks 10 years since my MS diagnosis. I may be off a little on the date but I’m almost certain it was early October. It was a month or so before my daughter was born, which was 11/05/09. So, close enough.

Anyway, I find it helpful sometimes to reflect on how my mindset has changed, whether it’s better or worse, or both. Most of the time these days, it’s better.

Ten years ago I saw myself certainly being wheelchair bound by now, or at least very heavily reliant on my walker. But instead I find myself fully mobile. I have stored away a walker and 3 canes that are for sure covered in dust by now. My husband and I have talked about getting rid of them altogether, because it’s been so long since I’ve needed them. I am not quite sure I’m ready to take that step.

See, if I’m being completely honest, that suggestion frightens me. Yes, I’m doing well and I’m running races, but the nerve damage is still there, and this article reminds me of that sobering fact. I can run all I want, eat all the vegetables my heart desires, but I can’t heal the scarring that has been done to my nervous system. Only God can do that.

I want to live courageously, without fear of the future, because it’s so much better than living in fear, which is where I was 10 years ago. Heck, even 6 year ago I was there, stuck in fear mode. My body and brain were shutting down on me as a coping mechanism. But that is no way to live, and I am fairly confident those days are behind me.

As I’m sitting here writing I’m gaining courage to let go, so pictured below I present to you my canes. From left to right: The gray cane is folded for easy transport, The 2nd cane was actually my first cane following diagnosis and has ladybug stickers on it that I applied myself (Bug was my nickname through high school and many years beyond), and the last cane is covered in a paisley pattern, because I love paisley. The walker is buried in the basement and not worth retrieving for this photo, but I’ll tell you I put flame auto decals on it and named it Speedy. So you know it’s cool.

I don’t know about getting rid of the walking aids. There is still a quiet voice back there whispering “what if?” and they do hold memories for me. However, they are not very joyful memories, so Marie Kondo would encourage me to let them go. Maybe I’ll just keep the paisley cane, because it’s just so pretty. It does spark a teensy bit of joy. 😁

No, I’m still undecided. I’m going to go for a quick run and see if I can make up my mind!

Finding Contentment

I’ve been fartin’ around on Facebook all morning, and then I did some filing, put away clean dishes from the dishwasher, and now I’m letting my phone charge back up so I can go for a run this afternoon. I could really go for a nap but I pretty much always feel better after a run so I’m opting for that instead.

I’ve allowed myself to get really busy with all the commitments I took on, and I think I’m finally getting a handle on managing it without moving around like a headless chicken. I’m finding the key is to allow myself to relax from time to time, and when I say that I mean REAL relaxing, not the fake kind. I’m giving myself permission to sit with my feet up, read a book or crochet, sip some coffee, and NOT feel guilty. It’s really nice, but it’s strange how difficult it is for me sometimes. It does take some self-talking to be totally okay with it. Otherwise I’m just pretending to relax. I may be sitting, but I’m secretly mulling over all the things I “should” be doing at that moment. So the Real Relaxing is nice. Very therapeutic.

I had an interesting thought yesterday while listening to the lecture at Bible Study Fellowship. We were studying the story of the lame beggar at the temple gates in the book of Acts, and the lecturer said that when the man was healed, his life became better because his disability was removed. Something about the way she worded it struck me, and a voice in my heart was asking,

“Mindy, would your life be better if your disability was removed?”

I honestly believe the answer to that question is no. As much as I grieve what I’ve lost, I am even more grateful for what it has added to my life. It has made me a more patient and compassionate person. It has strengthened bonds between my family members and my friends. It has introduced me to new people and new ideas. It has stretched me in so many ways to move outside of my comfort zone. But the most important thing? It’s that God is glorified through all He is doing through me. Because it’s certainly not me. I’m just following His directions. That is the most valuable outcome of all this, and what I have been praying for from the beginning.

As I’ve struggled over these past 6 years with my disability I’ve been trying to find a new normal or a base comfort level. What I realized yesterday is that I am finally at a place of contentment. I am finally at home again in this body and I am content to be where I am. Fully and completely. Hallelujah. Amen?

John 9:3 ESV “but that the works of God might be displayed in Him.”

2019 Capital City River Run

Welp, I did it! I ran a half marathon. All 13.1 miles with minimal walking. All of this training I’ve been doing really paid off, and I was able to run pretty much the entire way. I walked over slippery bridges and once late in the race because I was sensing some drop foot, but other than that I was good to go. I did NOT feel like I was dying, and despite how I looked to others at the finish line, I felt fabulous. I was all smiles and ready to sign up for the next one.

The Comradery: I simply could not have done this race without my friends. Alicia and Staci were with me every step of the way, guiding me away from obstacles and leading me down hills so I wouldn’t lose my balance. They even kept me from taking off in the beginning at too fast a pace, which is something I tend to do, and pay dearly for on these long runs. I happened to see a couple other running friends before the race started, and that really helped to boost my adrenaline. All the runners I have gotten to know are pretty special people. We are a diverse crowd, and yet everyone is so supportive of on another, regardless of all our differences. We are all running with the same goal, but for very different reasons, and I find that pretty awesome.

The Spectators: I had an entire team of spectators cheering me on throughout this race, and this was pretty dang awesome. My husband, my son and daughter (who had no shortage of hugs), my dad and stepmom, my sister and her boyfriend, my niece, and as a last surprise of the morning, my big brother. I was so surprised to see him there because he has been so busy working lately I just didn’t expect he would be able to make it. But he was there. They were all there, and they knew why this was such a big deal. It wasn’t just a race. This race happened almost exactly 6 years from when I lost my hearing and vision. In fact, that morning a memory came up on my husband’s Facebook feed. It was a posting he had sent out updating everyone on my long hospital stay. I was so sick and no one knew what was wrong with me, and I could not walk unassisted, among other numerous issues. So to have that come up on his feed the day I was running my first half marathon was just incredibly fitting.

The Final 5k: At 10 miles my family was there cheering us on, as they had in several other spots, and my son started jogging next to me. The excitement of the moment took over, and I invited him to run the final 3.1 miles with us. They frown on this sort of thing, I guess, but no one bothered us about it. He did a great job keeping me going and holding me steady down the hills. However, when we were nearing the finish, we were at the top of a very steep concrete ramp that feeds into the baseball stadium where the finish line was. He danced on ahead of me while Alicia and Staci took my arms to help me down. I was so embarrassed to see my husband at the bottom of the ramp, taking our picture. It looked rather pathetic, as if my legs had stopped working, but really it was just a matter of keeping my balance down the incline. When we reached flat land my son was waiting for me and we began to sprint the last stretch towards the Finish. I was so giddy I was almost in tears. And after I crossed the line I tried to stop but instead just fell to the ground. This is what seems to happen after my races and it alarms people because it looks like I’m hurt but really it’s just muscle weakness and poor balance. The motion of running keeps me on my feet somehow, so when I try to walk it never works. They brought me a chair and a woman put a medal around my neck and we all just stayed there congratulating each other and taking pictures.

It was a fantastic race and I am so glad I did it. Every time I try a longer distance I think about how far I’ve come, and I wonder how far I can go. My curiosity I think is what drives me. I just want to see how far I can go before my body says no. Yes, it tries to tell me no some days, but I’ll always try to call it’s bluff.

I am so grateful to everyone for supporting me and cheering me on. I could not have done this without you. Most of all though, I owe my gratitude to Jesus Christ. I would not have even started on this journey into running and health if it had not been for His sustaining grace and comfort. He is my constant, every day all day running partner. Hallelujah!

The Finish Line:

Courage

Yesterday was my scheduled long run of the week, in preparation for my very first half marathon in 36 days (but who’s counting?). I planned out my route, a simple 5 miles out through town and on to the park trails, and 5 miles back. I started out feeling really strong, and I was excited for this run because up to this point my longest run had been 8 miles. I knew I was going to have to walk for parts of it, to rest my knee, and I was okay with that concession.

Do you ever embark on a new challenge and you feel really confident about it, only to fall flat on your face, metaphorically speaking? Well, I did this, only it wasn’t metaphorical. A mile and a half in to this long run, I tripped on the sidewalk and fell Flat. On. My. Face. I sat on the grass between the sidewalk and the street and inspected my wounds. Were my teeth still in tact? Was I gushing blood? Were my cochlear implants still on my head? Yes, no, and surprisingly, yes. After about 20 seconds I stood up, brushed myself off, and continued to run. But as I ran I could feel my upper lip swelling and I could taste blood. I decided to call my husband, who happened to be working from home that day, and ask him to bring me some ice. Until he drove up to give me the ice pack, I fully intended to run the remaining 8.5 miles with a fat lip and what would eventually turn into a massive headache. I think he could see that I was on the verge of tears, and he suggested that I ride back home with him and just rest a bit, that I could always go back out when I was ready. After a few moments of hesitation, I said yes. I kept my running clothes on for several hours, under the delusion that I would go back out and run the 10 miles. But then the headache came, and I decided I was better off taking an Aleve and sleeping for awhile. I could always try again Saturday.

So Friday felt like a bust and I woke up Saturday knowing this was my day to get that long run in, but really feeling like I need to be safer about it. This had been the 3rd time I fell this month, and while I need those long runs to prepare my body for 13.1, I don’t think it’s wise to run so far from home without a guide. I can still get the same workout on the dreaded treadmill in our basement. I hate running on the treadmill, but I need to get ready for this race, and not injure myself in the process.

To be honest, I woke up Saturday not really sure if I was going to run or not. But then I was on Facebook and my friends were posting reports of their long training runs. And then a friend texted asking how my face was doing, and another friend reminding me that yesterday’s fall was not failure, because she still remembers when I needed a walker to walk. So with a few messages of encouragement, in just a matter of minutes, my extreme discouragement transformed into full-on Courage. I was ready to run these miles. The icing on the cake, folks, was when I walked down to the treadmill and was reminded of the picture I keep above the display that says: “There will be a day when I can no longer run. Today is not that day.” I had forgotten all about it, but you can bet that was the final word of encouragement I needed to make sure I got that run started. And once I start, you better believe I’m a stubborn mule and I will finish, dang it.

I learned some things about running on the treadmill. One, when you run longer than 99 minutes, it stops moving and restarts the timer. Thankfully it didn’t reset the distance because that would have really frustrated me, but I ended the run at 9.99 miles just to be on the safe side. Some other advantages to the treadmill are that I can watch tv, I can stream Pandora without using data, and I have immediate access to a bathroom. So it wasn’t all bad. I did struggle with finding a good pace but I suppose that’s all part of the training. Better to figure this stuff out here in the safety of my home, than out on the course on race day.

I’ll be honest, compared to most of my runs, this one was pretty sucky, but it’s done and I have to be okay with that. My legs didn’t fail me, although my knee did cause me to fall once so I was glad I had a grab bar, I had zero drop foot issues, and I was actually able to finish with a very slow jog. So it’s a win in my book, whether I like it or not. Two days of rest and then I’ll be back out again for some short runs!

Waiting for the crash

Last night I stayed up way too late watching Pretty Woman on tv. Because I don’t know why. Because I had recorded it, and then started watching it not being entirely aware of the time, and then not being able to turn it off in the middle. Because you’ve gotta finish what you’ve started, right? I won’t get started on what a classic, feel good movie that is. It just is for me, and I don’t care if you judge me for it. Julia Roberts is just genius in that role. That’s all.

Anyway, so I was up way too late, and then had to get up early this morning to wake my daughter to get ready for the second day of horse camp. Then, even though I kept telling myself I was going to go back to bed, I just sort of kept moving on with my day. Luke and I rode bikes to get lunch at Taco Bell, my vitamins from Rite-Aid, and then ice cream at Sweet Sensations. It was a great afternoon, and then I thought maybe I would catch a nap before Natalie got home from camp, but I just, well, didn’t. Then I made dinner for the family and now I’m sitting here wondering when I’m going to hit that wall of fatigue. Yet, it just doesn’t seem to be coming. Hallelujah, praise the Lord, I’m operating like a normal healthy person!

This may be the healthiest I have ever felt. I don’t even remember having this kind of energy when I was in my twenties. I’m sure I did, I just don’t remember it, ha! So I’m writing this down so that I can remember how I feel and perhaps what I’m doing to feel so good. I believe it’s all the healthy things combined that work together to allow my body to operate at its best. Staying active with running, cycling, and walking. Eating my fruits and veggies, taking my greens daily, drinking lots of water. Even the celery juice I’ve been drinking every morning seems to be having a positive effect on my sleep quality, somehow. I know the celery juice is a fad right now, but you never know, this might be one that sticks. We shall see. But all the exercise and the healthy eating (with itty bitty cheats here and there) is really working.

The best part about feeling good is that I am feeling confident about the upcoming commitments I’ve made: leading a bible study, a discipleship group, and a Financial Peace class. I’m not afraid that it will be more than I can handle, or be too much to take on as a person living with MS. I do realize that none of this healthy living makes me immune to a relapse, so I’m keeping a level head about that, but I’m praying that all this healthy stuff I’m doing will make a relapse far less likely. I’ve always said I don’t want to let fear drive my decisions, and that applies here. I can’t say no to these exciting opportunities to serve God for fear that I’ll relapse. I’m trusting that He’s the one that gave me these desires and that He’s leading me down these paths, and if that’s true, He’ll take care of the details. M.S. is no match for my God!

Just an overall great day

Today was a really great day. Nothing out of the ordinary or spectacular, it was just a good day, so I wanted to share before I head off to bed.

The kids and I went to church this morning. Hubby was at a shooting competition so it was just the three of us. We had been preparing to ride the bus, but were able to secure a ride with the pastor’s wife at the last minute. So while we were a bit excited about doing something new by riding the fixed route bus, we were thankful we didn’t have to get up super early to catch the bus. We’ll hopefully try again on another day before the summer is over.

Church was great, as usual. I love my church family, because they are just like that: family. I was able to have a bit of time after the service to catch up with the some of the other women and invited two of them to BSF in the fall.

The afternoon was spent relaxing, having lunch with the kids, chatting with my sister, and doing a bit of bookkeeping for the church. By the evening, after dinner, I was feeling pretty sluggish and the sun hadn’t set yet, so I threw on some running clothes and went for a quick two miles around the neighborhood. I’ve been doing a pretty good job with resting my knee and doing the exercises the doctor gave me, and tonight’s run really showed me that it’s paying off, because I only took a few brief walking breaks and I had no knee pain throughout the run! Even after I got home I didn’t feel any pain. Not only that, but my pace was pretty strong for the time I was running, at around 11 or 12 minutes, which is pretty fast for me. I usually average closer to 13 minute miles. So I was pretty ecstatic about that run, and it really gives me hope that I’ll still be able to complete the half marathon in 56 days!

I’m excited about the upcoming race, but I’m even more excited about a lot of leadership opportunities I have coming up. Leadership is not necessarily my comfort zone, but I feel like God has really been working on me in this area, and helping me to step out of my comfort zone little by little. I can still be my introvert self and interact with others. I really enjoy getting to know people and hearing their stories. In the fall I’ll be leading a Bible Study Fellowship group, a discipleship group through my church, and Financial Peace University. That sounds like a lot, but I’m hopeful I’ll be able to keep a good balance and manage my time well enough to handle it all.

Shifting gears here, but I recently saw the dermatologist and I thought it was just going to be a follow up to get refills on the antibiotic for my rosacea, but the doctor I was seeing left the practice so I was seeing a new one. Not new to the practice, just new to me. I was very reassured from the minute he walked in the room because he actually examined my face under the light, and the last doctor never did that, which I always thought was odd. This new doctor is changing up my medication a little bit and putting me on something stronger, with the hopes that eventually I won’t have to take the antibiotics. He also gave me a prescription for a cream that should help the specific problem areas on my face. So that was a really positive visit and I went home feeling hopeful that we can get my face cleared up even more.

So the last couple weeks were filled with a couple doctor’s visits, my monthly Tysabri infusion, and lab work to make sure I can still take the Tysabri. Then in a week or so we go to the dentist for cleanings, and take the kids to the orthodontist for evaluations. Not exactly your idea of summer fun, but you gotta do what you gotta do. Being healthy is super important to me because if I didn’t have this energy, I wouldn’t be able to do any of the volunteering that I’m signed up to do. So I’m staying focused (i.e. mildly obsessed) with the running, daily exercises, eating my fruits and veggies, drinking my greens, and taking my vitamins. Staying healthy for this M.S. girl is kind of a full time job.