Sometimes God sends me little messages to remind me He loves me and that He’s thinking of me. Usually it’s a bunny running across my path while I’m running in the neighborhood, or a deer stopping long enough and close enough for me to see him. I get giddy when I happen to see these things.
Today I spotted this heart shaped water spot on the driveway after taking the trash bin to the curb. Only today I felt less giddy and more comforted. Like God knew I was having a rough couple of days and could use the reminder that He’s always – still – here with me. This disability sh** is a full time job, man. And this week I am feeling beat down. Tired. So this little “love note” was a welcome distraction and comfort.
2 Corinthians 4:8-9 ESV “8 We are afflicted in every way, but not crushed; perplexed, but not driven to despair; 9 persecuted, but not forsaken; struck down, but not destroyed;”
I don’t know about you, but it’s a pretty normal occurrence for me to wake up in the morning with a song stuck in my head. The genre of these songs is all over the map. I was thinking today I should start keeping track of them. And then I thought maybe I would start sharing each day’s song here on the blog! Because some of you may be interested or amused. Right?! Right. Sure! Maybe there’s a poll coming down the line, because to be honest I’m wondering how many others share this affliction.
Disclaimer: I take no responsibility for these songs. They are completely random and often come out of nowhere. I do not choose them, they choose me.
So, would you like to hear today’s song? I shall dub this: Mel’s Morning Music! Today I woke up with the relentless “Move, b***h, get out the way…” I’m not sure where this came from, because it is not on an any of my playlists, I ASSURE YOU, but nonetheless, there it is. And it seemed appropriate especially as I had to climb over my dogs to get to the bathroom this morning.
I wonder what song I will wake up with tomorrow! I’ll keep you posted. Now tell me, do you ever wake up in the morning with music playing in your head? Please tell me I’m not the only one…
I titled this as if I do “end of week” updates regularly. Y’all know… I do not. I’m far from regular. But, I just put a cheesecake in the oven and felt like kicking back and writing about some of the exciting things that have been going on with regards to MS and running. I may have mentioned, I’m training for another half marathon. It’s at the end of May, and I’m running it with one of my best friends. It’s been challenging getting our training runs in during the winter but since we are both committed to this race, we are able to hold each other accountable (though, I’ll admit, it’s mostly her keeping me accountable. If I had my way we would be doing far fewer long runs.)
Anyway, during this training I was noticing, and my friend was able to see as well, that my left leg had become increasingly “lazy”. Lots of scuffing of the toe, slapping of the foot as it landed, etc. I think this had started a long time ago, but I hadn’t bothered with it since I wasn’t doing as much running. I talked to my neurologist about it at my last regular check up and she recommended I get some physical therapy to help strengthen those lagging muscles. So I’ve been going to physical therapy for a couple weeks and already I have noticed improvements. The first was that the PT noticed my stride when I run is very short, and she recommended lengthening that stride to get more use of my hamstrings and quads. I tell you, it’s definitely harder to run with that longer stride, but even with that I’m seeing my pace come up. I’ve shaved almost a minute off my short distance pace since beginning our training, without really trying.
Another improvement I’ve seen is that my left leg seems to be getting more involved in the walking process. See, normally I swing my body a little to give that left leg some extra momentum. Since doing these PT exercises, that’s changing. The PT has hooked my leg up a couple times to a stim machine to activate those muscles and I know that’s helping to get them working properly again. I’m having to retrain my brain to talk to those nerves that operate my leg and foot. It’s fascinating and exciting at the same time.
I’m still struggling with fatigue; that hasn’t changed a whole lot. However, I’m learning to change my mindset and be kinder to myself about it. I remind myself that it comes and goes, and that when it comes, I just need to rest, enjoy the slow down period, and ask for help when needed. My teenagers have been real troopers with that, so I’m grateful to have them around.
We’ve had a lot of illness and health issues going around our family for what feels like forever, but with spring comes sunshine and warm weather and I have hope that healthy days are right around the corner. I also hope that for you, dear reader, that you have healthy days and sunshine. May God bless you! Until next time…
I had originally started this post around the new year, and forgot about it. As we are coming up on the anniversary of the events, I thought it would be a good time to finish the story. Also, a disclaimer: the photos included here lack captions because 1) I couldn’t figure out how to add captions and 2) with my vision I’m not even entirely sure what’s in each photo. So I apologize to all the other visually impaired readers out there.
In April of 2021, my husband Mike and I were looking forward to celebrating our 22nd wedding anniversary with a weekend trip up north (Up North being a big deal in Michigan). We had planned to leave Friday afternoon, while the kids were still at school, and Grandma was to come and stay the weekend with them.
On this fateful Friday morning, I was frantically awoken by my husband. When I opened my eyes I could sense there was an emergency but could not tell what. I hurried to put on my cochlear implants, and when I did Mike handed me a stack of towels and said “You work up here, I’ll work downstairs.” A few short steps from my bed, and it did not take me long to realize that the floor was soaked. Our bathroom sink had been left running when I got up several hours earlier to use the toilet. I can’t tell you how many times in the past I had gotten up in the middle of the night to go the bathroom and left the water running. Only every other time it had happened, my husband was awake enough to hear it and made sure I got back up to turn the water off. This time that did not happen. The water had been running for several hours, and because it was a slow drain, the water quickly overflowed. The water had spread from our master bathroom, to the carpeted hallway, and through the floor to the main floor ceiling to the kitchen. And then through the kitchen floor to the basement ceiling.
I was devastated. Stunned. In disbelief. In a whirlwind of activity we managed to send the kids off to school and get everything cleaned up the best we could. It was still very early in the morning so while we waited to talk with an insurance agent, I sat on my husband’s lap and sobbed into his shoulder. Not only was our trip cancelled, but I couldn’t believe the mass destruction I had caused to our home. Mike had nothing but compassion for me. He had been angry all of 3 seconds when he discovered the damage, but from every moment thereafter he was in problem solver mode. He kept saying this could be a blessing in disguise. I had always hated the look of our kitchen, and now we would get to pick out our own cabinets, countertops, floors, etc. It could be fun!
I wouldn’t say the process was fun, however it was nice to discover I did have opinions when it came to the kitchen and bathroom designs. And there were a million little decisions we had to make together, so it gave us some good practice as a married couple. After 22 years of marriage it was nice to find we could work out our differences and make compromises without killing each other.
When the restoration crew came to assess the damage they brought very loud drying machines and put them on all 3 floors of the house. They had to cut holes in the kitchen and basement ceilings to get them dried. They ripped out our soaked kitchen and bathroom cabinets, and with them the countertops they were holding up. They put up plastic sheets as barriers because they had detected mold in the kitchen. It was a mess.
We got to work right away at choosing replacement materials, but there were supply chain issues so it did take longer than we had hoped for. We still had use of our fridge and stove, but no place to prepare food or wash dishes, so we lived on fast food for the next several months.
Oh, did I mention that I had already started training for my first marathon at this point? Yep. Marathon training on a fast food diet? Not ideal. But our family got really good at knowing how to get the best deals at all the fast food restaurants. Biggie Bags at Wendy’s, Five Dollar Boxes at Taco Bell, all the value menus. It was fun! (She said, facetiously.)
Anyway, all was restored by early September, just days before my marathon, and it was beautiful. I was so happy to have my kitchen back, I swore to never talk about hating to cook every again. I am grateful for the privilege of having a kitchen to prepare food in.
We put a motion sensor faucet in our bathroom, so that this would never happen again. It took a little getting used to, but it’s been effective; I’ve never left my bathroom faucet running because I’m not able to. I seem to remember one of our kids asking around this time, “why don’t we put one in the kids bathroom too?” And the reply being that there was no reason to because Mom never uses that bathroom. Well, never say never…
Fast forward to April of 2022, almost a year following the major flood. I was blasting my music through my cochlear implants, drowning out all other sounds, and doing a bunch of power cleaning. I noticed the dryer was quite dusty, so I grabbed a washcloth and ran to the nearest bathroom (the kids bathroom, which is the other full upstairs bathroom) to wet the cloth and wipe down the dryer. I continued my work, flittering around the house. My daughter had come home from school, used the small bathroom just off the kitchen, and when she walked out of the bathroom noticed a problem. She hurried upstairs to let me know, “Mom, the kitchen ceiling is leaking!”
I had NO idea what could be causing that but I zoomed into crisis mode. I handed her a bunch of towels and told her to grab a large bowl from the kitchen cabinets, put it under the leak, and start drying the floor (our practically brand new kitchen floor!). I was frantic, not knowing what to do, so I called my husband. He calmly walked me through turning the water off in the house and then gave suggestions for where to check for the source of the leak. I walked upstairs and opened the door to the kid’s bathroom (why was the door shut anyway?) and walked into a cloud of steam and water dripping off the countertop. It was then that I realized I had left the water running after wetting the cloth to clean the dryer. I could not believe it. I had done it again. Thankfully my daughter had caught it in time and the damage was not as severe, but the damage to my ego was just as devastating the second time around, if not more so. I had come to learn after the first flood that it was actually quite common, for people to leave faucets running and flood their homes. I never learned the statistics for two-time offenders but I was sure it was more rare.
The ironic thing is, we had planned a trip for our 23rd anniversary, since we didn’t get to take it the year before. And when I asked Grandma to come stay with the kids, I told her – jokingly – I wouldn’t flood the house this time. And then, of course, I did. Thankfully it happened a few weeks before the trip so we were still able to go. And boy, did we need that trip. It was just for the weekend, but it gave us time to process and reflect on all that had happened, and to be thankful that we were still crazy in love even after all the difficult things we’ve been through. Maybe even more so because of the difficult things we’ve endured. And when we look at those challenges we’ve had to face over the decades, dealing with a flood or two is no big deal.
Now I’m just praying that I make it through this year without causing another major disaster. And I’m extremely grateful that my family loves me despite my propensity for calamity and can laugh about it all now!
Half marathon training is in full swing! Between winter weather, sickness, and just plain busy lives, it’s been a challenge to get these weekly long runs done, but we’re still at it! We’re up to 7 miles and are keeping a pretty decent average pace. To be honest, we are trying not to care about the pace. Just want to focus on building up that mileage without injuring ourselves. I have some hip and knee pain that’s lingering after a short run last week, where I know I ran too fast, so I need to be more careful about that.
My left leg is still an issue that I’m not sure there’s a solution for. It’s weak, yes, but I don’t know if making it stronger would make a lot of difference. Because when it’s tired, it simply doesn’t respond. At the end of most of these long runs I’ve had to lift my leg to get into my friends van. So I suppose I should count myself lucky I haven’t fallen during a run **knock on wood**. I do hear my left toe scrape sometimes and I can definitely hear how my left foot slaps on the ground when it lands each step. Over all these years of running I seem to have found a running form that works for me, but I always wonder if I could improve.
We had to switch the days we do our long runs so it just worked out that I also had my monthly Tysabri infusion this morning. I wore my running clothes to the infusion and had my friend pick me up when I was done and we headed straight to the trails to get our 7 miles in. It made for a long day and my Garmin says i only got 5 hours of sleep, so you can bet I’ll be napping as soon as I finish this post!
I have a 5k coming up that I’m excited about! It’s for pi day, math nerds know… 3.14. And guess what you get at the finish line? Pie! I love me some pie, especially after running 3.14 miles (yes, they adjusted the length of the race, gotta keep with the theme, of course). I have a couple other friends running so it should be a fun time.
Well, that’s all I have to say about running… for now. Peace out, homies.
My daughter has been riding horses for years. She’s been obsessed with them since she was a little girl. She’s 13 now, and that obsession has blossomed into a true love for everything equine.
This past year she has been riding a beautiful black and white pinto named Trixie. I had only seen photos until last month, when I joined her for a riding lesson. Watching her interact with Trixie was really special to see. And then to see her riding with such ease? It was such a gift to be able to see her in her element, so full of life and confidence.
I joined her for a few more lessons, as sort of a Christmas gift to myself. I had secretly been wanting to for a long time and finally decided to just do it. I was given a horse named Millie to ride. Millie was slow, stubborn, and mildly obsessed with eating. So, basically my spirit animal.
My first two lessons with Millie were pretty tame. We mostly walked around the indoor arena while the other riders pranced around with their horses. Millie got really nervous when everyone changed direction and started trotting toward her. She was not a fan of oncoming traffic. I was told that they couldn’t leave Millie to hang with the other horses because they all made fun of her. So she spends her days hanging out with the goats instead. I have thankfully not dealt with too much teasing in my own life, but for some reason that information made me feel a connection to her, if only for the vague connection of emotional suffering and pain.
At our final lesson, I could tell right away that Millie was in a special mood. She seemed more eager this time to move around with the other horses. We were having a good ol’ time walking around the arena, trotting a little here and there. Until she caught sight of that big door out of the arena. That’s when she would ignore everything I was telling her and fight to walk straight for it. I would have to tell her to stop and just stand there until she learned she wasn’t heading that way. She was in Time Out until she learned to follow directions.
At one point during the lesson I was directing her to trot, but she had a different idea. I think she saw all the other horses loping and decided she wanted to join them. So she did! Loping (or cantering) isn’t full out galloping but when you are new at riding it might as well be. I was hanging on for dear life as I scrambled to pull on the reins and shout the key word for stop – “Woah!”. She finally stopped about 6 feet from the door; she was ready to make a run for it. I don’t know how she planned to open the door, but I guess she was just going to figure that out when she got there. Details, details. It was equal parts terrifying and exhilarating.
And that is why Lesson #1 is always: How to tell the horse to stop.
Overall it was a fun experience and I may try it again down the road but for now it was enough excitement to satisfy my curiosity for awhile. I’m happy to stick to running, where I get to decide where I’m going and how fast.
This is just getting really old, so I thought I would tell you all about what it’s like, while I’m in the thick of it. I know it’s not going to be like this every day forever and ever, based on my history with MS, but Damn. It’s hard to see the forest for the trees right now. Is that the right phrase? I don’t know, my brain’s low on gas right now…
The most common symptom among MS sufferers is fatigue, and that is what I suffer from the most. I’ve learned to adapt and live with the hearing loss and the vision loss, and the weakness in my left leg, but the fatigue is the Beast I can’t seem to tame. It causes the most trouble the week before my monthly infusion, presumably because my body is running out of the medicine coursing through my veins. The problem is, once I get that infusion, I don’t get some magical burst of energy back. It just sort of slowly creeps back to a manageable level.
I have recently started charting my daily fatigue levels to see 1) if that fourth week after my infusion truly is when I’m at my highest level of fatigue and 2) how long does it usually take to get back to a functional energy level. I’ve just started charting, so it’s way too soon to have any usable data, but I’m hopeful that after a couple months I’ll be able to use what I’ve learned to plan my days better. If I can have more reasonable expectations on myself, than I can stop getting so frustrated.
Today, for example, I started out the day at about a fatigue level 6, on a scale of 1-10, 1 being plenty of energy for everything and 10 being flat out, unable to move. I went to Bible study, ran a quick errand, and came home and took a two-hour nap. Caffeine has almost no effect on me, so coffee is purely for looks. When I woke up from my nap the fatigue was actually worse, at an 8, so I went back to sleep for another hour. Not because sleep helps, but because what else is there to do when it’s such a struggle to move? I could watch tv or read but even my brain is fatigued so I would really just sit there feeling like a vegetable. The beautiful unconsciousness of sleep shields me from falling into depression.
I feel like I let down my family when I have to back out of activities or delay promises I’ve made, but they have yet to complain. In all honesty, I think I’m the only one bothered by this fatigue. My family and friends are always extremely gracious and understanding of me. I need to be just as gracious and understanding of myself. Because this is just a string of bad fatigue days, and they’ll be behind me soon enough. Until they are back again, of course.
***After I’ve had some time to think about this day, it occurred to me that maybe going back for that second nap was the wrong move. Maybe it would have been better if I had gone for a crappy run instead. I was scheduled to run 1.5 miles according to my current training plan, so I had every good reason to do it. After we had dinner tonight (a late, late dinner because my son had wrestling), I bit the bullet and got my miles in on the treadmill. It was hard to start but I kept with it and I’m glad I did. So, I’m going to try to remember that next time this beast rears its ugly head.
Oh! And speaking of my current training plan, I have another big race I’m signed up for, with a fellow friend who is crazy enough to run it with me. It’s a half marathon, and it’s happening at the end of May (because we’re only half crazy, get it??). This week is our first week of training, and so far, she’s doing better at staying on task than I am, but I feel like I gained a little momentum by squeaking out that treadmill run this evening. So here we go, wish me luck!
Don’t mind me, I’m just cleaning out my draft folder here. I found this one from January of 2016, with some photos of a few sentimental Items I was saying goodbye to., Marie Kondo-style. Just for funsies, I’m sharing them with you.
The first one is a t-shirt my sister bought for me when I was pregnant with my firstborn. It’s an infant sized shirt that says “I was worth the wait.” I remember bursting into tears when I first saw it. See, my husband and I were unable to conceive for many years, but after a successful surgery in that sixth year, I was finally pregnant with a son. That son will be 16 years old in a few months and I still believe he was worth the wait.
This second photo is of a raggedy stuffed teddy bear that I had affectionately named Elizabeth. This is a stuffed toy I loved on for many years when I was a child and I have no idea where I got her from. I had dressed her in this adorable dress adorned with white lace and blue puppies. Why I had waited until well into my 30s to get rid of her, I’ll never understand, but I remember it being quite a difficult decision. Probably because it truly felt like saying goodbye to a childhood friend. I certainly don’t miss her anymore, but it’s still fun looking back.
And the last photo, for your viewing pleasure, is of a plate I made in preschool. The kind you draw on a paper circle and they somehow transfer it to a plastic plate. I don’t know how that process worked, but I remember drawing the picture. A hideous picture of three trees of varying colors, a bright shining yellow sun high above, and a stick person with a big smile and long legs coming out of her head (presumably yours truly) off to the side. My first name and last initial, with a backwards ‘Y”, scrawled underneath. I held on to this plate for as long as I could, until it was accidentally used in the microwave (if you look closely you can see the bubbles). We have a friend who once dubbed it the “pēnī plate” (he didn’t think they looked like trees), and the name survived for many years but unfortunately the plate itself did not.
So that’s all for today. I have a post about house flooding I still have swirling around in my head and hope to get that written and posted soon. I am having a chill day and am looking forward to the new year, as I hope you are too!
I’ve been mulling this story over in my head for awhile now, trying to figure out how to tell it in a way that conveys the hilarity that I felt when it happened. Here we go!
My friend Tara was coming to visit from out of state. She, her husband Scott and their two sons had moved out of Michigan years ago and it had been some time since I had seen them. They were in town for a few days and she wanted to stop by and catch up. I was so excited for this visit, and for them to meet our new dog, Punky. I was letting the dogs play outside while I waited for my friends’ arrival. I like to do this when company comes over because the dogs can be a bit much and the exercise helps to calm them down (or so I like to believe). Tara and her family arrived, and I was so excited to see them! Scott was dropping Tara off for a few hours while he took the boys to the zoo, but they wanted to come in and say hello first.
Scott and Tara are dog people, so I asked if they wanted to meet our new golden retriever Punky, and of course they did. I let the rambunctious dogs inside and they did their dog greeting thing, wagged their tails, barked obnoxiously, etc. And then this conversation happened…
Scott to me: “It’s a bird.”
I have to stop right here and remind you that I am still half blind and deaf. The cochlear implants are great, but I need to be paying attention in order to hear and understand when people are talking to me. Also, if there are other loud noises happening (e.g. dogs barking), they are pretty useless. In other words, I miss out on a LOT of input. My guess is that Scott had said some things that I did not hear, and those things would have given me the necessary context to understand this bird business. Instead, I was starting from scratch with his statement. Now let’s continue…
Me looking blankly at Scott: “Huh? What’s that?”
Scott: “It’s a bird.”
Me: “What’s a bird?”
Scott: “It’s a bird. It looks like she brought in a bird.”
As understanding crept in and my heart started racing, I frantically scanned the room, looking for the “she” that Scott was referring to and that’s when I saw it. A happy, proud as can be Punky, parading a dead bird around my living room.
That’s when I lost my ever-loving mind. I scooted Punky outside as quickly as possible, not wanting her to drop the dead thing in my house. Once she was outside Scott was able to get her to drop the bird, and I brought him an old grocery bag to put it in. Then we let Punky back inside and resumed our introductions.
“So, how have you been? The boys have grown so much! Are those muffins you brought?” Blah, blah, blah.
Then I noticed Scott and the two boys jerking their heads and arms oddly around, looking up and down and all around. What the hell is going on now? Then I hear someone say, “I think we let in a yellow jacket.”
?@#$@?#%#*&!
I couldn’t find the fly swatter, but the dang thing wouldn’t land anyway. It ended up flying inside one of the window blinds and Scott had to vacuum it out. I didn’t use that vacuum for a few weeks, just to be sure it was dead before I emptied the dust cup (yes, I had to look that term up).
I don’t even remember much after this point because it was just utterly ridiculous, all this happening at once. I had gone in a matter of minutes from the excitement of seeing my friends to full on freaking out that there were dead things and sting-y things in my house. All I could do was laugh at the timing and the absurdity. I’m still laughing now.
Scott and the boys left for the zoo and Tara and I settled in for coffee and muffins and talked for hours. It was so wonderful to catch up with her and if it hadn’t been memorable enough, we’ll always share that memory of how it started off with dead birds and dangerous bugs.
I drafted the following post back in 2017 and I think of the 30 drafts I have stashed over the years, this one still rings true. The good news is that through lots of intensive therapy I have come to find and embrace that self-awareness I was so lacking. I now have a strong sense of what I love and am getting pretty good at embracing it. I praise God every day for the healing He has accomplished in my life.
***** I sometimes notice the people around me, enjoying things, and it often seems foreign to me. How can they know what they love? It must be really great to have that self-awareness, and to embrace it.
I don’t know if I’m making any sense here, but whatever. All that was to say that lately I’ve been trying to make note of the things that make me smile from the inside, deep down in my soul.
1) Parades. I freaking love parades. I can’t not be giddy watching a parade go by. I think it began when I was introduced to Easter Parade by the girls I used to babysit for. Maybe.
2) Caramel corn. I can’t stop eating the stuff. I lament that any time good snacks come into our home they get eaten before I even realize they are here. Not the caramel corn. That’s all mine. I will wrestle you to the ground for it. And if it has nuts? I’m not afraid to send you to the hospital.
3) Paisley. This is not a new realization, of course. I know I love it, and have for decades, and everyone else knows it too. You could even say that for this list, this one was my first love. It makes my heart flutter. Every time.
4) Led Zeppelin. In particular, Over the Hills and Far Away… something about how it eases you in, seduces you for a minute and a half, and then comes in pounding with those drums. It just gets me every time. There are certainly many other songs to love, like Kashmir, Ocean, or D’yer Mak’er, but Over the Hills was I think what sold me on the band in the first place. And it didn’t hurt that I first started listening to them on vinyl.
5) Sunrises. The rising and setting of the sun are visually similar, and both beautiful, but somehow the rising sun is what really calms my spirit and whispers to my soul. When I am privileged to stop and see the sunrise, I am always, always reminded that the fact that I am here another day is an enormous gift. Oh, and coffee. You can really enjoy a good cup of coffee while staring into the sunrise. *****
I still love all those things and have added more since then. Sipping bourbon, writing, singing karaoke, dancing in my kitchen, listening to the mourning doves cooing in my backyard, tending to the lilies in my planters. Lots of simple things bring me joy. Things that have always been around but now I’m finally able to notice them and really enjoy them. I’m three seconds away from breaking into a Barbra Streisand song so I’ll stop here. Have a wonderful night, my friends. This week I challenge you to look for joy in the simple things.
Deaf and half-blind runner with multiple sclerosis
Little M.S. Runner 