Category Archives: Multiple Sclerosis

Walk MS 2019

If I already blogged about this, forgive me. I’m just pretty sure I didn’t, so you’re getting this report a month late.

So! In May Mindy’s Minions gathered again to walk 3.1 miles around the capitol city in support of everyone living with multiple sclerosis. This is such a fun and lighthearted event, but it also does so much good, seriously.

The National MS Society puts on this event, and I am always eager to support them because they have been such a huge support to me from the beginning. Even before I was diagnosed with MS in October 2009 they helped me. During that summer, I had this strange and painful itching in my right arm. I was googling on the interwebs to find out what could be causing it, and I stumbled on their website. What I found was a detailed description of my symptoms, one far more detailed than I could have written. In short, they nailed it. I remember the moment so clearly. I was on my lunch break, sitting in my cubicle, and I had to hide the tears that were rolling down my face. I knew at that moment what I had, and I was terrified.

I was later diagnosed, of course, and the Society helped direct me to support groups for people like me. The first group I walked into was probably 80% older folks who were confined to wheelchairs. So, again, I was terrified. I thought I was staring into my future. It wasn’t until I found a support group for people my age that I started to have some real hope. Our group is a little more dispersed now and doesn’t meet in person anymore, but we still offer each other regular support through a private Facebook group. We share our struggles and our victories, we talk about our changes in diet, exercise, and medications. We are there for each other when we feel like no one else can understand. It’s been a true gift to have these people in my life, and I wouldn’t have them if it weren’t for the National MS Society.

So I raise money to give back. I walk, WE walk, to show our support. It’s an exercise in solidarity. I am surrounded by amazing family and friends all year long, but this day is special to me. It’s a day for my family and some of my dearest friends to come together and show their official support of me and my battle with this awful disease. I could not fight this alone and I am truly grateful to have these people in my corner.

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I’m a big girl now

Something great that has come out of my disability in the past 6 years is that there isn’t much in life that I take for granted anymore. That is a huge gift, to have a grateful heart the majority of the time, without even having to try.

Yesterday I had a hair appointment to get my wig trimmed. Not literally, that’s just the phrase my husband uses for getting his hair cut. Anyway, the salon I go to is about 2 miles away, and in the past I would have utilized the paratransit bus system to get there. However, though it’s a great service that I use quite often, it does come with drawbacks. You have to schedule ahead of time, and then you have to wait. They give you a 15 minute window to work with, which is fine, but it can be a little nerve wracking at times. I had decided that since the weather looked decent, I was going to ride my tricycle. And I did! It was fabulous. I felt so free and uninhibited. I got where I needed to go, at my own pace, all by myself. Which sounds silly when I say that out loud because for Pete’s sake, I’m a grown woman. But you guys! I know you all get it, right? I did it! All by myself!!

You have to celebrate the little things when they are good so you make the good things bigger. God loves to work in the details and I love that about Him. Find something to celebrate today, no matter how small.

Gazelle Girl 10k 2019

I’ll be honest, I’m not even sure where to start with this post. I had a lot of thoughts running through my head throughout the race and these couple days following.

I’ll start by setting the stage for this 10k race. It was cold and rainy, and by the end, snowy. Michigan weather at its finest. We had been watching the forecast so we knew what we were getting into, and none of us were swayed. We were committed to completing this race, no matter the weather.

I should back up. By “we” I mean myself, a friend from church, and two other friends of hers. So you could say this was kind of out of my comfort zone. I had asked Chris, my church friend, if I could tag along because it was an all female race, and it looked like a lot of fun. It was out of town and they already had plans to stay at a hotel the previous night and they welcomed me with open arms. The comradery among runners is incredible. I’m fairly new to running compared to a lot of others, but throughout this whole experience I was never tempted to feel like an outsider.

The race itself started out pretty smoothly. I was feeling strong and confident for the first few miles. However, about halfway through I was noticing my left foot dragging quite a bit. This “foot drop” is one of the symptoms of my MS. Running doesn’t cause new symptoms, but it can aggravate old nerve damage. I have been training for my half marathon this coming fall, and have done plenty of long runs with almost no foot drop, so the fact that it was happening so soon was disheartening. Maybe I was just being more affected because of the excitement and nerves for the race, I don’t know.

My friend Chris had agreed to run with me for the entire race, to be sure I was safe. She did a fabulous job pointing out all the potholes and manhole covers, and steering me away from other obstacles. Throughout the race I did not trip even one time! However, I would not have finished this race without her assistance.

I think it was around the end of mile 4 I was having serious trouble keeping my foot from dragging. I was also experiencing some side and shoulder pain, but I was afraid to slow down and walk. My balance is better when I’m running. Something about the motion, I guess. I have another friend with MS who says the same thing about running. Walking requires a different movement and different nerves, I suppose. I told Chris what I was experiencing and she urged me to walk to give my body a rest, and use her arm for balance. At this point I was pretty discouraged and frustrated with what was going on with my body. I had not expected this to happen so soon. When Chris explained to me that my pace at the beginning of the race was much faster than I had been training at, it all made sense. I had been training between a 14 and 15 minute mile, but I had been running closer to 12! So clearly I had made a mistake, and I was paying the consequences.

I tell myself I don’t care about times and personal records, but that’s a big fat lie. I do care. I am always competing with myself, and I feel a great sense of pride when I am able to see my pace improve. The problem is, I want it to happen sooner than is realistic. So now thanks to my prideful denial of my physical abilities, I hobbled the last two miles of the race mostly hanging for dear life on Chris’ arm. I felt ashamed, defeated. My ugly pride had taken a hit. I started off too fast and it hurt me in the end. This felt a lot like failure, because I feel like I should have known better.

But listen – this was NOT failure. I finished the race! And with a PR to boot! So I made it more challenging for myself by starting too fast, and I had to lean on a friend to accomplish my goal of finishing. So what? Can we all agree there’s nothing wrong with that? We all have challenges in our lives, and very often we have to lean on our friends for help. Friendships enrich our lives, make us stronger, make us better. This is good!

Ecclesiastes 4:9-10 ESV “Two are better than one, because they have a good return for their labor: If either of them falls down, one can help the other up.”

There was a point in the race that I was feeling particularly angry. Not angry at myself, but angry at the multiple sclerosis that makes things so difficult. On most days I am able to function like a normal person and can almost forget I have this affliction. But then you run 6.2 miles and you are reminded. And that sucks, Big Time. So yes, I was angry. But then I was reminded that I hated running for most of my life. I didn’t start running until 2015, six years after I was diagnosed with MS. I run because I have MS. To show myself and others that it’s possible. MS doesn’t have to mean life in a wheelchair. This is what I believed when they first diagnosed me, and I know now that’s not the case.

I watched the following day as Worknesh Degefa dominated the Women’s Elite Race in the Boston Marathon. She ran the last 20 miles alone. Way ahead of the pack. Yes, it was cool that she was in the lead, but what was even cooler was that she was doing her thing. It didn’t seem to bother her one bit that she was surrounded by absolutely no one. The mental fortitude that must have taken is something I aspire to. If I can run these races and just zone out Degefa-style, then perhaps I can keep a steady pace and finish strong.

So I learned a few lessons with this race. I learned that you can’t rush the process. You have to pace yourself, and that requires patience and humility. There may be people zooming by you, but pay no attention. As Chris encouraged me I think during mile six – “you do you”. Forget about the other runners. Just keep moving toward the finish line. You’ll get there. Lesson #2: You want to change your pace? Do it in training. Don’t switch that up during a race. Sorry, I don’t know how that applies to life. It might pretty much just be applicable to running 😉 And lesson #3 was that friendships are invaluable gifts and not to be taken lightly.

My dad was able to join us to spectate this race, and it meant a lot to have family there rooting me on. He called me the following day and asked how I was feeling. He specifically asked if I was still planning on running a half marathon and I answered without hesitation – YES. No question. At this point in time I have no idea how I’ll physically manage it, but I’m choosing to trust in the training process. Four years ago I was barely walking, three years ago I ran my first 5k, and just 6 months ago I ran my first 10k. This body just keeps getting stronger. The more I push, little by little, the farther I can go. I don’t know how far MS will let me go with this running stuff, but I’m gonna keep pushing the line until she forces me to stop. And with God’s grace, I have hope that day will never come.



Madam Sleepsalot

If you’re ever curious about my day to day routine, today is your lucky day. Now that kids are back in school and snow days are hopefully well behind us, I’ve settled into a daily routine. This time around I sort of just go with how my body is feeling, and it’s interesting to me how well this is working.

Every morning I get up at 5:30 with my son, and stay up until 8 when my daughter leaves for the bus stop (her school starts an hour later than his). While the kids are getting ready for school, I’m drinking coffee, reading my Bible, and sometimes eating breakfast (If my stomach is up for it). After the kids are off to school I go back to bed. I don’t set an alarm, I just sleep as long as my body needs to. Some days that’s only an hour or two, some days it’s more. Thursdays I generally sleep much longer because I’m recovering from a full day on Wednesdays, between Bible study in the morning and Financial Peace University at night.

After the morning nap I get up, eat a late breakfast or lunch, and then I get going with that day’s work. This usually includes dishes and laundry, and sometimes paying the bills and running. I’m usually done by 3:00, just before my son gets home from school, and then I can relax with a book or a tv show. Then I start thinking about what to make for dinner. The rest of the evening changes from day to day but in general I’m letting myself relax and enjoy time with family. I’m not stressing about my to do list because I’ve already done the day’s work. The rest can wait until tomorrow.

So you could say I work about 4 hours a day and sleep 10. This seems excessive to me, and the old me would think I was lazy. The new me is learning to understand this is just part of my disability and it’s what my body needs in order to heal and stay healthy.

It’s been really refreshing to be able to establish a routine that allows for a good work/rest balance. I’m getting things done, but I’m working WITH my fluctuating energy levels rather than fighting against them (or giving up altogether, as I have done in the past).

Much of this new attitude has resulted from consistent reminders of the grace God gives us. When I read in Scripture that He tells us to rest and to stop striving, or even to “strive to rest”, I am encouraged to know I’m doing the right thing. Amen? Amen.

Hack hack, ahem ahem, cough cough

You guys. I’ve been sick for all of two and a half days and I’m trying sooo hard not to be a baby about it, but geesh. I don’t get sick very often, but when I do, I just want to snuggle up in a cozy blanket and let people wait on me. The first part works alright but the second one, not so much. Because folks, I’m the mom. And mom doesn’t take sick days. Which is only kind of true. My family is really great about helping out and giving me my space. No one’s even complained that the laundry is piling up while I’m downstairs nursing myself back to health.  It’ll get done, eventually.

Anyhoo. Since I’ve been out of commission all I can do is sit around thinking about how little I’ve blogged lately. Not cuz my life is boring (though it is a little) but because I just haven’t been in the mood for blogging. It happens every now and then. Whatevs.

What’s going on lately, you ask? Well, the son has been busy wrestling, both for the local club and the middle school. This is exciting stuff folks. Now that he’s on the middle school team he practices every day right after school. He does not seem to be tired out by this, thankfully, and it’s been a huge load off for our resident chauffeur, my hubby. Now he doesn’t have to drop him off, then go back and pick him up. Just one trip per day, and he’s home by dinnertime. Which means we all get to eat as a family again. Every day!

The daughter is not in sports. Has no interest really, at least for now. That could change down the road but I don’t think that’s likely. Her two loves right now are art and animals. Since it’s -38 degrees outside these days, she did not want to go for more horseback riding lessons, so we found her an outlet for her art. A gentleman from our church is willing to give her weekly lessons and teach her whatever she wants to know. Right now she’s on a big Bob Ross nature scene kick, and it’s friggin’ amazing what she is able to create just after watching a few YouTube videos. I know I’m a tad biased because I’m her mother, but there’s no denying that she has some serious talent that will only get better with more training and practice.

It’s kind of weird but I’ve had zero motivation to write that book I had been talking about. I still want to tell my stories, just maybe not in that format. Maybe we’ll just keep them here on the blog for now. I could do some kind of kooky flashback series where I tell short stories about what happened to me five years ago. Or maybe I’ll get the hankering again to write the book. Who knows?

I’m just really happy doing the things I’m doing now that I don’t really feel like going back to that time. It feels too heavy. Right now good things are happening. My kids are growing and changing, and I’m able to be a part of that. I’m slowing down and trying to be more focused on the most important things. Spending time with God, family, friends. It’s been a good change.

And speaking of slow, I set myself a new goal: to run a half marathon in the fall (it’s speaking of slow cuz I’m a slow runner, get it?). I have a race picked out and a friend to run it with me. I have a training plan picked out on my Runkeeper app, and it doesn’t start until March 5th. So I have time to warm up to running regularly again. I’ve not been running since before the holidays so my legs are a little rusty.

I even spoke to my neurologist about how to train safely, and was reassured that this was not too big a goal for someone with MS. If I take it slow and am careful, it’s totally possible. In fact, she said regular exercise is just as crucial to my health as is my disease-modifying therapy. So as far as priorities, I need to bump it way back up to the top. She said that running will not cause me to relapse, but will only help to keep me from relapsing. When I run, certain symptoms flare up, like foot drop and difficulty seeing, but she said that’s because those are nerves that are already damaged. As long as I’m being safe about it, I should be fine. Which is why I always run these races with friends who can be a good set of eyes and ears for me and keep me safe. So that’s on the docket. 13.1 miles. In a row!

And that folks, is all I have for an update right now. I had a funny thought earlier and I was going to post it, but now I can’t remember it. So I apologize for my foggy memory keeping me from leaving you on a humorous note. Oh wait! I can leave you with a pun… this one I choose because we bought new winter gloves for my son today…

“I got a new pair of gloves today, but they’re both ‘lefts’ which, on the one hand, is great, but on the other, it’s just not right.”

He hears me

Last night as I lay in bed I asked God for help. Nothing fancy. Just that – please help me. I’m feeling lost and unwell and discouraged, and I need your help. Thank you, amen.

And then I got up this morning and read my morning devotional from Our Daily Bread: https://odb.org/2019/01/02/its-good-to-ask/

I don’t think this could have been any more relevant to how I’ve been feeling lately. The scripture alone spoke volumes to my heart. From Psalm 143:4-11: “Therefore my spirit faints within me”, “I stretch out my hands to you; my soul thirsts for you like a parched land.” “I have fled to you for refuge. Teach me to do your will, for you are my God!” (I love the Psalms. I feel like David and I would have been friends.)

To give you some specifics as to why I’ve been feeling down in the dumps – full disclosure is a strength of mine lol – my brain is foggy. My body hurts. I get random pains on my left side, both the sharp kind and the throbbing kind. I’m still sore from a long car ride two days ago, and I’m not sure how long that will last. I slept ten hours last night and I’m still tired. Even after coffee. I don’t remember what “feeling rested” feels like. Sure, part of this may be aging, but more likely all of this is exacerbated by the M.S. Multiple sclerosis has destroyed my nerves and while most days I look just fine, underneath everything is going haywire. And I can deal with the inconvenience, but the permanence scares me. There is no cure. It’s here to stay. But I can decide how I want to look at it. I can decide to live in fear of the unknown of the future, or I can decide to accept how it affects me today and find ways to enjoy life despite it.  I need to choose the latter.

But back to this morning’s message. What I’m learning here is that sometimes we don’t need concrete answers. Sometimes it’s enough comfort to know that we are not alone, and to know that God is listening to our prayers. I am encouraged today. Yes, I’m still in a gray sort of mood, and my body is still not cooperating like I want it to, but there is a light shining through the gray, and that is Jesus. So I’m just going to keep my eyes on Him and trust Him to guide me through to wherever it is He wants me to go. One. Day. At. A. Time.

Distraction

Can I just be honest right now? Because of course, everything else I’ve written on this blog is completely made up.  Just kidding. But seriously. I want to be lazy. I want to abandon my responsibilities and sit, curled up on the couch all day crocheting or reading or playing Farmville. But there’s this nagging voice, and my hunch is that it is the Holy Spirit and I don’t want to admit it, that says I was made for more, and that being lazy is not God’s purpose for me. I know that God places value in rest, that He commands it even, but how do I know when I’m taking it too far? I wish I had a cut and dried prescription that says you need ‘x’ amount of rest on these days, and ‘x’ amount of time you ought to be working. It’s probably true that I need more rest than the average 40 year old woman, since I have MS, but that doesn’t really make this dilemma any easier to solve. I’m in better health than your average woman with MS, so there’s no template for me to go by. Not that I think there should be one. I’m just thinking out loud here.

Journaling is very helpful. It helps me focus, and especially helps because I treat it like a prayer. All of my journaling is really just a conversation between me and God, and He often speaks to me through my journaling. He probably speaks to me a lot more often than that, of course, I just don’t hear it because I’m distracted by everything around me. But when I’m typing, there’s no distraction. I’m entirely focused on the conversation.

So what I feel like God has been whispering to me over the past several months (yes, I’m a slow learner) is that I am too distracted. So I asked for His help and guidance with life and time management and finding a balance between work and rest and all the other stuff I want to do, like writing my book, running, baking cookies and crocheting.

This is so silly, but the biggest distraction I’ve allowed into my life is a little game called Farmville 2. Heard of it? It’s super addictive because there are always things to do, missions to complete, challenges to meet. And it’s fun, but it sucks the life out of you. Or at least it does for me. I’m sure there are people who are able to balance games like this with real life, but I’m not one of them. I am the demographic they built this game for. I know they devote lots of money into research to know how to keep people addicted to their games in the hopes they will spend money, but I never spend money in the game. I am firm about that rule. So the joke’s on them, right? Wrong. Because I have still let it steal hours and hours, days even, of my life. I’ve decided I’m done with it. For good, I hope. Please.

Romans 7:15 ESV “For I do not understand my own actions. For I do not do what I want, but I do the very thing I hate.”

Hebrews 12:1 NIV “Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of our faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God.”

I feel better, I think. Last time I uninstalled the game I think I made it a full three days. We’ll see if I can make it longer than that this time. The last time, I hope. Gee whiz.