I’m tapering folks. So scaling back on the miles has led my brain to check out a bit on other things. Or something like that. Let’s see, last week was week 17, and my long run was a measly 8 miles! Weekday obligations kept me from some of the shorter runs but I did manage to run on Thursday. I had to pick up another prescription at the pharmacy so I ran there and back for a total of 4.23 miles. When I run errands, I *literally* run errands.
Saturday I would have loved to run my 8 miles early in the day before it got too warm out, but my son was playing in a tennis tournament and I wanted to be there to watch him. It was a lot of fun watching him, but I’ll admit when the sun came out I was growing anxious about completing my 8 miler. I watched his first two matches and then had my husband take me home (the tournament was being held at a local high school) and then returned for the last match. So while the boys were finishing up with tennis, I was out hitting the pavement. I don’t remember much about this run, and I didn’t take notes afterwards, but nothing memorable happened, which is a good thing. No pain, no injuries, no real struggle at all. I’m still feeling strong.
Let me remind you, I’ve never been an athlete. I’ve never been remotely athletic. For many it comes naturally, or so it always seems to me. So this journey into running still really blows my mind. Ten years ago I was using a walker to walk from the couch to the kitchen. Now I’m running 8 miles on a hot day with ease? Little by little, I have become someone who does that. And it’s WEIRD. Because I’m still the same goofy girl inside. I just move a lot differently and am able to say yes to things that would have previously exhausted me. Hallelujah, thank you Jesus.
So week 17 recap is pretty minimal. Total weekly miles were 12.23, bringing my grand total marathon training miles to 489.69. As of today’s posting, The marathon is 10 days away and I am getting excited to slay this beast!
I need to find a shorter title for these because what I have here is gonna get old real quick. Anyhoo, last week kicked off my official training for the marathon I’m signed up for in October. The GR is for Grand Rapids, Michigan, which is the location of the race. I’m excited about the location because I’m hoping it will be a little more accessible to my friends and family who may want to come cheer me on. Also, it’s a race my family members have run before and have nothing but good things to say about. It’s a flat, smooth course and should be perfect for my fitness level and physical challenges.
My weekday runs weren’t exactly what I had expected. I had an outdoor run that was going beautifully until the last leg, when I had about a quarter mile to go. On a walk break, I started to have this very sharp pain in the left side of my right kneecap. It just seemed to appear out of nowhere, and grew stronger so quickly that by the time my walk break was over, I couldn’t start running because I couldn’t put any pressure on the leg. I was able to s-l-o-w-l-y walk back home, and the pain subsided. However, I’m treating that knee with kid gloves for awhile, wearing a knee brace when I run. I’m still not sure what happened, but the pain has not returned so far, and I’ve done a lot of running since then.
The other weekday run I decided to run on the treadmill because there was an air quality warning in our area due to the wildfires in Canada. I had been seeing from friends on Facebook that they were having issues with breathing so it just made sense to stay indoors.
I’m pictured below, post treadmill run in the man cave. You’ll see my hair does some funny things when I sweat. Hanging on the wall to my right are black and white photos of Tiger Stadium, and behind my head is a seatback from the old stadium. I am still not crazy about running on the treadmill, but at least I have the dogs and my husband’s sports memorabilia to keep me company. I’m smiling because I’m done.
My final run for the week, the long run, was 4 miles and I had the opportunity to run it with my son. He has wrestling camp coming up real soon and is worried he’s gotten out of shape so he’s joining me in some of my training. Teenagers are a lot more talkative when they are moving, did you know that? If you’ve got one you are wanting to connect with better, I highly recommend taking them on a walk or a run. My son has always been a talker but as he gets older the competition with cell phones and video games has become increasingly challenging. So I was really grateful to have that time with him and I hope he joins me for more runs this summer!
That’s it for week 1. I was feeling a little hesitant about this marathon immediately following the Bayshore half but my body is fully recovered and rested and I’m feeling strong and confident again. Training for and running a marathon is a really big deal even for normal runners, so it’s not lost on me what an undertaking I’ve committed myself to (again). But with all y’all’s encouragement I know I can do this, one day at a time. Remember, the only way to eat an elephant is one bite a time!
So. I ran another half marathon. This is the one I was training with a friend for, only she was not able to run the race due to a foot injury. However, she was sending me cheers from home throughout the race and was surely with me in spirit! Also, the race went as well as could be expected. Would you like to hear all about it? Grab a tasty beverage and sit back.
This particular race, Bayshore, has been kind of a dream of mine ever since I heard of its existence. The race offers 3 distances, the 10k (which I ran last year), the half marathon, and the full marathon. The races are located in Traverse City, Michigan, where my dad’s family essentially called home for many years. The small city is located in northern Michigan and is home to the Old Mission Peninsula, which is flanked by the Grand Traverse Bay. My grandfather owned property on the peninsula, on the West Bay, and my cousins and I spent a week every summer there. We have so many great childhood memories from our time “up north”. We ate cherries, we hiked, we swam, we strolled along the shore searching for Petoskey stones. My husband and I honeymooned at the cottage, sharing my childhood memories and making new ones. We’ve had family reunions there. My paternal grandparents are both now buried on the peninsula. The property my grandfather owned was eventually sold and the cottage is now gone, but a big piece of my heart still lives on Old Mission. So when I learned there was a race that actually allows you to run all over the peninsula? Sign me up! I ran the 10k last year, which was satisfying but slightly disappointing because only a small portion of the race I felt like I was ON the peninsula. The half marathon distance starts at the north end of the peninsula and follows the coastline of the east bay all the way south into town. This was the race for me.
Now I want you to understand that racing for me is terrifying at moments. Not being able to see the start from far away, being unfamiliar with the terrain. It’s not like home where I’ve memorized the potholes and cracks in the roads and sidewalks. My anxiety for this race began building several days before the race. But standing in the chute among all the other runners was somewhat calming. I was finally here. And I had trained for this, I was ready to go. Until I realized I was standing near the wrong pace group, among runners way faster than me. Not to worry, I simply shuffled back until I found my people. As I stood there waiting I checked my phone and realized I had lost my Bluetooth connection to my cochlear implants. It’s a good thing because reconnecting involves taking off my hat in order to remove my left cochlear implant, remove the battery, replace the battery to make it “discoverable”, put it back on my ear, put the hat back on, etc. So I’m glad I had that time to make sure I was connected. I rely on my music playlist to keep me going throughout these long runs.
Once I was situated and connected I got back to bouncing around to keep my legs warm and as I’m bouncing I realize there’s a strange stillness all around me. It occurs to me that everyone is looking in the same direction, some with hands on their hearts. Ah! It must be the National Anthem playing. I hope I didn’t do anything disruptive or disrespectful. It wouldn’t be the first time. No worries, carry on Mel.
I wish I could remember more of the details of this race, but I’ll share with you what I do remember. Coming up the first hill, I marveled at the vineyards stretched out on each side of me, and the East Grand Traverse Bay glistening in the morning sun ahead. The road leading me forward, filled with runners. I don’t want to forget that moment. Or later, coming around a curve to an open expanse, my view filled with brilliant blue water on my left and lush green evergreens on my right. I thought about taking a picture there because it was so freaking gorgeous but it wouldn’t have done it any justice, and it would have taken away from my enjoyment of it. I would have wasted the moment fiddling with my phone, most likely unsuccessful anyway.
I continued running, soaking in the atmosphere and the majestic scenery. All the anxiety had disappeared. I was thanking God for this experience. It was incredible. I felt strong. I was at peace. It wasn’t until I was about 6 miles into the race, that I started to really feel the burn and the soreness of my legs. I still felt strong, and my legs were moving well. That’s also about the time I started to see more and more spectators. Kids giving high fives, dogs wondering why all these people are running in the street. Posters lovingly prepared: DIG DEEP – a POWER button – WORST PARADE EVER. I love these races. You think making a poster and standing at the side of the road isn’t a big deal, but it IS. Without the spectators, it’s just a grueling training run. We NEED these people.
Around the 8th mile I was starting to really struggle because the weather had warmed up quite a bit. I decided to take my shirt off during my next walk break but with the deaf/blind vest and the sweat sticking to my shirt, it took longer than I anticipated. So by the time I got reset I was running through an aid station with a gang of onlookers to my comically awkward process. It didn’t matter. There’s no shame among runners, and these people understand and have likely seen it all. In fact, later in the race I was passed by a woman carrying her shoes, running in her socks to the next aid station. You do what you have to do. So it was a bit of a chore to get that shirt off but it was so worth it to lower my temperature a few degrees. It gave me the rejuvenation I needed to keep going.
The last few miles of the race honestly felt like drudgery and I just wanted to be done but those spectators kept me going! The runners were still moving ahead of me and I just kept reminding myself what I came for, and that was to complete this race. And I did! I finished! I set a new personal record for myself, and I did not fall. Though after the finish I was struggling to walk. My left foot knew we had crossed the finish line and just refused to lift, so I hobbled along the fence line until I saw my husband and kids walking up, all smiles. They escorted me to the recovery area and found me a chair and some ice cream. It was an incredible moment, getting to share this accomplishment with my three favorite people in the world. I tear up just reliving it.
This was such a great race. It was so difficult, but I have to accept that reality because I’m signed up to run my 2nd full marathon in October. Yes, yes I did. I swore I wouldn’t run another one but it turns out I lied. I’m glad I already committed to the marathon, because I think I would have chickened out after this race. It was a sobering reminder of how difficult and painful it is to run a lot of miles, but it was also a good reminder of the immense joy I still find in running.
It’s serendipitous that my devotional this morning actually talked about how we can have joy and pain coinciding. We can feel both simultaneously, and that’s an incredibly mysterious fact of life. There will be pain. Expect it. But also we have in us what it takes to keep moving forward and find joy in the midst of it. I am so grateful that God has sustained me as I continue to run. That He has given me the inner strength to keep challenging myself and doing these ridiculous races that both terrify and thrill me.
Isaiah 40:29-31 ESV “He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.”
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…
A fascinating part of this story of my plunge into disability is that for almost a full two months I was sleeping close to twenty hours a day. That seems to fascinate the people who hear about it after the fact. For the friends and family who lived it, it was terrifying. And for me, well, I don’t remember much so you could say it was sort of a blur.
I’m told a lot of things happened. There were times I was sleeping in bed or on the couch. Other times I was falling asleep at the dinner table. One time I was actually falling asleep while walking through Office Max with a friend. At least, that’s what I was told. I sort of wish I had that on video.
I know I spent a lot of time in the hospital for monitoring and testing. I remember getting a spinal tap, a CAT scan, and numerous middle of the night blood draws. There was one particular night I woke up to half of my extended family sitting around the room with me. My aunt and uncle from Georgia, my cousin from Grand Haven, and perhaps my grandma and grandpa as well. These were all people who were following the progress updates being posted on Facebook and who sacrificed to be with me, to make sure I knew they were all in my corner. I’m really grateful I was awake enough to remember their visit.
I had to take a visual field test at the neuro-ophthalmologist’s office to gauge what I could actually see. This is a pretty standard test where you sit with one eye covered and stare into a machine. You stare at the light in the center of the screen and click a button whenever you see a blinking light in your periphery. I’ve taken this test numerous times since, but this first time was the worst. If it was a pass or fail test, you could say I failed. I could not stay awake. It didn’t help that the room had to be dark for the duration of the test. It’s maybe a five or ten minute test and they kept having to stop the test to wake me up again. Over and over and over. It’s comical now, but it was pretty scary then. I vaguely remember this first test but I had no idea I had been falling asleep so frequently.
I slept through most of my daughter’s 4th birthday party. I remember bits of pieces of that event but only after I was shown videos and photos showing that I was there. I cried watching the video because I didn’t even feel like I knew who I was looking at. It felt like sort of an out of body experience. It breaks my heart a little to realize how absent I was for so much of my children’s everyday lives during this period. I can never get that back but you better believe I’m doing everything I can now to make up for it. I have asked my daughter over the years if she remembers me before I was deaf and she always says she can’t. She does remember thinking she had caused my hearing loss because she had been making too much noise. She was only four years old. You know?! See, now your heart is breaking too.
I also remember Thanksgiving that year. It was the only year within the past decade I didn’t host. Because of course, I was checked out. This made me sad but I was grateful that my husband’s grandparents were willing to fill in and host at their house. I went with no expectations and I was happy to be with loved ones. But when I sat down at the dinner table, I looked down and could not decipher what was on the plate. See, my visual impairment also includes some atypical color blindness, making it difficult to identify anything with bland, muted, or similar coloring. I looked around the table at all the smiling faces as people chatted in silence over their meals. It was just too much. I was there, but I was still missing it. My favorite holiday. With tears spilling over my face, I ran to the bathroom. I was able to calm myself down but I didn’t want to face the family with this red, splotchy, sad face. I cleaned myself up and returned to the table, apologizing for my abrupt exit. I certainly didn’t want to ruin everyone else’s Thanksgiving. And then my daughter Natalie reached over and hugged me. Because God speaks love and grace through four year olds. Of that I am certain.
So that’s how I spent October and most of November. In a dazed, trance like state. I was never left alone. I had a friend who came and stayed at the house with me every weekday while she home-schooled her children. She made sure I was fed and that I took my medications. She even helped with housework quite a bit and kept me engaged as much as possible. When I was too afraid to do normal things like showering, she never laughed or pitied me. She somehow understood the state of fear I was in and rather than scoff at me, she gently encouraged me to take everything one small step at a time.
When I was too afraid to cut an apple for fear of slicing my hand, she told me she believed I could do it and looked forward to the day I would have the courage to try again. So when that day came, I didn’t tell her what I was doing. I just slowly sliced that apple, artfully laid the slices out on a plate and walked up to the dining room table with a proud smile on my face. She smiled back with tears in her eyes (I imagine) and gave me a big mama hug. Cutting that apple was the first big step for me on the long and arduous path of healing and rehabilitation. I still had a long way to go, but that small but meaningful victory over slicing an apple gave me the courage and confidence to keep going, one tiny step at a time.
Two things I’ve been obsessing over this week: 1) I need to get back in the habit of running on a more consistent basis and 2) I want to try to get more writing done with my memoir.
The first one is easy, really. It’s just a matter of reminding myself that if I can just lace up those shoes and get out there, my fatigue will be kept at bay. It’s amazing how effective the regular running is at combating the MS fatigue I normally experience. It’s been the best weapon for fatigue, for sure. I’ve tried lots of things in the past but running has been the best. The tricky thing is, it only works if I actually do it. So my goal this week is to get back to it. I talked to my son about running, because he was saying he wants to start running to train for cross country in the fall (crossing our fingers they still let the kids run, geesh). So we agreed we were both going to go running every afternoon, and once he feels stronger – i.e. recovered from playing video games all day, every day – then he’ll probably go off and run on his own. He’s much faster than I’ll ever be but I’m so glad he slows down to run with me. He’s a lot of fun to run with because he does all the talking while I huff and puff alongside him.
That second thing I’m obsessing about is the memoir. This is much tougher, because I really have no clue what I’m doing writing a book. I am finding that I’m at the point of needing to organize what I’ve written so far, and I’m stuck. I’ve always been one who has to see to understand, so not having the ability to really get a clear visual of the outline of the book has me needing to brainstorm in order to get unstuck. I printed what I have so far, and this coming week I’m hoping to look at it under the crafting light and maybe take notes with a Sharpie, so I can see what I’m writing. I would really love to write this book by hand, but not being able to see what you’re writing poses a special kind of challenge. So. I’m not giving up with this, but I am having to be creative and think outside the box. If any of you are outside-the-box thinkers and have any suggestions for me, I’m all ears!
I had a good weekend. I can’t say it was much different than most other weekends, but after last weekend it was just nice to have some positive moments. Last weekend I was faced with a pretty frustrating situation. I had been informed on Good Friday that my long term disability insurance claim (the one they’ve been paying me on for 6+ years without issue) was being terminated. The letter of explanation detailed my level of activity with running and Bible study and so forth (based largely on what they read here in my blog) and my 20/20 vision that was noted in a recent visit to the low vision specialist.
Now, most people probably assume that 20/20 vision means perfect vision, but that’s not the case. I have a visual field defect, and that means I only see a portion of what others see. Of that portion that I can see, I see clearly, i.e. 20/20. So, to say someone has 20/20 vision does not always mean they are seeing the whole picture. And while I love to think about how this concept can be applied to life in so many abstract ways, my brain isn’t ready to go down that rabbit hole today. So maybe another day. Or maybe not.
All that to say, this letter of determination from the insurance company completely left out the details of my visual field defect. Of course, I’m appealing the decision and I have an attorney working for me to file the appeal. I’m really hoping and praying that God is in my corner on this one and that I’ll be able to restore my long term disability income. But if I’m being honest, I was livid when I initially received the news. Trembling, fuming, crying in the shower livid. However, I’ve had lots of time to pray about this and to hash out all my feelings with a few friends and family members, and I’m doing much better now. I’m still holding onto a little bit of bitterness, but I’m working hard to let that go. Last night I had written an entirely different blog post and I felt God nudging me away from the Publish button and towards reading James chapter 3. I’m so glad I responded to the nudging because James chapter 3 was all about taming the tongue. It was definitely a message meant for me. I love how God speaks to us so clearly, when we take the time to listen.
In other news – I haven’t been running much but I’m trying to get my stamina back up because I need to run a virtual 5k this week. I’ve never done a virtual race before but I signed up for this months ago and this is the week we are “supposed” to be running. I went for an almost 3 mile run yesterday, and only had to walk for a short portion at the end. In the first mile though, I nearly fell. I always wish I had these moments on video, because in my mind they are quite comical. I was running alongside the curb, on the street because there are fewer cracks to avoid, and at a whopping 13 minute mile pace, I ran directly into a fallen tree branch. I whispered profanities as I scrambled not-so-gracefully forward in order to escape the clutches of the evil tree branch. (If I don’t have a video, the least I can do is describe it Dramatically lol) I did not fall, thankfully, but I’m sure the van that was passing as I struggled to free myself got a kick out of the sight. I sustained only one tiny injury, a scrape on my shin, and am ready to get back out again as soon as the temperatures climb back up above 40 degrees.
This past week I’ve had a lot of great interactions with family members I don’t talk to nearly often enough, and that has been refreshing. Phone calls to and from my big brother and my oldest younger sister. A refreshing Zoom call with my cousins here in Michigan and down in Georgia. And grilling out with my husband and kids. All in all it was a great week. This coming week is when the online learning officially starts for the kids, so we’ll see how that goes. I’m winding down with BSF and FPU so those will be out of the way very soon. I’m looking forward to warmer days and praying that God would heal this world quickly, and sustain us in the meantime. Be well, my friends, be well.
This past week has been a challenging week. I was hit with some pretty crummy news on Friday, but I’m dealing with the situation and am trusting God at every step along the way. Pray for me, if you would.
We recently informed the kids they could no longer play video games all day long. From the hours of 10 am to 3 pm on weekdays, they are not allowed to be playing video games. Instead, they need to be cleaning their rooms, completing their regular weekly chores, and doing schoolwork. If all those things are done and they are feeling bored, they are welcome to do extra chores, take the dog for a walk, read a book, etc. Now if they have everything done and they’ve not given us any attitude, we are willing to negotiate extra video game time. Because we’re not monsters, usually.
We’ve known that the teachers at our kids’ schools have been working feverishly to establish online learning programs for the kids, so we’ve been warning them that the corona-vacation is ending any day now. Well, that day has come. We received instructions from all the teachers this week, and tomorrow morning we’ll have our first round of online meetings with teachers. I’m excited that the kids will have something to be working on that’s more engaging then say, Minecraft and Roblox, but I’m so nervous about how this new format is going to work. This is new for everyone so I’m hopeful that we can all be patient and gracious with each other. Again, pray for me.
I don’t know if I had mentioned, but we are still meeting for Bible Study Fellowship, only we meet on Zoom in order to comply with the social distancing. It’s worked out rather well, but I do miss seeing my ladies in person. We only have one week left as a group, and that makes me kind of sad, but relieved at the same time. Especially with this online learning for the kids ramping up. I had decided back around the Christmas break that I wouldn’t be returning next year to be a group leader, but I haven’t told my group yet. I don’t think they’ll care much. People hardly ever get assigned to the same discussion leader. And Lord willing, they’ll still see me around at regular Wednesday classes.
Oh my gosh, y’all. It snowed yesterday. Seriously. I woke up to see the ground covered in white stuff. It was a crazy day. And then here in Michigan we had a bunch of people protesting at the Capitol, which is all political nonsense that I try very hard not to get mixed up in. I absolutely despise politics and I know that probably makes me less of a grown-up, but I don’t care. I just want to stick my fingers in my ears (or just take off my cochlear implants, HA!) and pretend for awhile that it’s not as screwed up as it is. Don’t ask me how I went from snow in April to politics. All of it’s bizarre, and beyond comprehension. Moving on.
I have done almost no writing throughout this quarantine business because, well, it’s hard to write when your mind is distracted by a global pandemic. So I hear. What I’ve been doing instead is reading books and listening to podcasts. I’m actually finishing books I had started but was unable to finish in time. I recently finished The Boys in the Boat, The Greatest Generation, My Grandmother Asked Me to Tell You She’s Sorry, The Glass Castle, and Know My Name. Many of the books have been audio versions, which I find refreshing because they give my eyes a rest, and I can crochet while I’m “reading”. True multi-tasking!
The other hobby I have, at night when I’m too tired to do much of anything, is watching tv on my laptop (the smaller screen helps so I can see most of what’s going on while I read the captions). I have discovered an absolute gem for mental health and getting to sleep at night – Golden Girls reruns on Hulu. Check it out, and let me know if it doesn’t make you smile.
I’m hoping to get out this weekend and run a Bob Ross themed virtual 5k. We shall see. I haven’t run that far in awhile so it might end up to be a lot of walking. The original plan was to run this with friends, but now that we have shelter in place orders, that’s no longer an option. So I’m just going to run three laps around my neighborhood, and call that a race. I may even wear the bib!
I hope you are all doing well, and are safe and healthy. If you’re feeling a little lonely and blue, watch some Golden Girls. They’ll never let you down.
I’ve always been a planner, and for the last several years I have established a routine of planning our meals on a weekly basis. I know meal planning is not for everyone, but it just makes things easier and way less stressful for me. With that last grocery trip, we are set for at least two weeks of meals. And since all the events have been cancelled, I now have something to fill out my fridge calendar:
But that’s not all the fun I’ve been having! Thursday I had a video visit with my new cochlear surgeon. We needed to meet so they could “establish care” which I guess just makes things easier when working with the manufacturer of my implants, especially when it’s time to upgrade to the newer model.
This coming week I have my regular Tysabri infusion. For the first time in years, I’m nervous about going to this. My last infusion was just days before everything shut down, but now we are in full blown shelter in place status and I am worried that I might pick up the virus and bring it home to my family. But my husband and I both agree (as does my neurologist) that the risk of another MS relapse is a far greater risk, and so I must get this infusion. The last time I missed a dose, I lost 60% of my vision, permanently. So I’m going, but I am going to be as safe as possible. Rather than riding the Spec-tran, I’ll be dropped off by my husband. I’ll be wearing an N95 mask (he had a few in the garage that his dad reminded him he’d given him awhile ago) and rubber gloves. I told hubby I thought I would look like some kind of freak walking into the infusion center and he said probably not, because everyone else there will be dressed the same. I don’t think the nurses are going to give me any grief over being too careful. So I’m sure it will be fine, but if you wanna mark your calendars to pray for me Wednesday, I’m sure it wouldn’t hurt.
I’ve really been enjoying our family dinners lately. We’ve always eaten together as a family, nearly every night, but family dinnertime feels different now. Our schedules are clear, so we are far less rushed. Nobody has anywhere they need to be. A couple nights ago we were all sitting around the table and legitimately enjoying each other’s company. We were talking about what we planned to do, where we planned to go after all this is over. My daughter brought up some great memories of a trip I took her and her brother on, to visit downtown Lansing. Together, we reminisced about all the places we visited that day and what fun we had. Then she said we should go again. Sigh. I love that girl. She’s a city girl, just like her momma.
I worry sometimes about my daughter because she’s extremely introverted, and she’s spent almost every waking hour of this quarantine holed up in her room, playing Roblox. But then she comes out and chats up a storm, telling me all about the fun she’s having. The other night we watched Dr. Strange together, at her request, and after the movie was over we discussed our favorite parts of the movie.
So, I feel like I’m bonding with each of my kids, in entirely different ways. It’s been really nice. This quarantine stuff certainly stinks, and it sure wasn’t what any of us would have planned for our lives, but I’m thanking God for the opportunities it’s giving us. Every storm cloud has a silver lining, and I hope that you are finding your silver lining amidst this storm.
For the past week and a half I’ve been allowing my kids to sleep in and stay up late, playing video games in their rooms all day. However, I’ve been listening to Celebrate Calm parenting podcasts and now I’m feeling motivated to be more intentional and proactive with engaging my kids in healthier daily activities. We will see how I feel about it in the morning, but after talking with the kids this evening, I think they understand that their state of total freedom is ending. They were laughing and joking and even offering up ideas for activities. So tomorrow I’m going to try to stay up when my alarm goes off at 7 am. I’ll have my coffee and devotional time with Jesus, and then I’ll scribble out a daily plan. Hopefully a plan better than the one I proposed this afternoon (pictured below).
I’m going to try to make this a fun, adventurous time. I’ll still want them to incorporate some official schoolwork, using the resources their teachers have been sending us, but I also want to capitalize on this time I’m having with them. This is like bonus time, and I want to take full advantage of this and use it to get to know my kids better. I’m looking forward to this and I’m praying God will bless this time. If all goes well, they will look back on this year with fond memories*.
*I wanted to call this new endeavor “Corona Camp” but my son didn’t think that was a very good idea. Not age appropriate, or something, I guess. I’m open to other suggestions if you’ve got any!
Deaf and half-blind runner with multiple sclerosis
Little M.S. Runner 