All posts by Still Mindy

Forty-something, married with two kids and a dog. Living every day to the fullest with multiple sclerosis, impaired vision, and deafness. Couldn't make it without my Savior, Jesus Christ!

Two Things

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 am now the mother of a teenager

Yesterday was my son’s thirteenth birthday. He is now officially a teenager. How quickly time seems to pass, until you are put in pandemic lockdown and time seemingly stands still, of course.

Normally, we would have thrown a party for this guy. Pizza, ice cream, video games, and a house full of rambunctious, stinky boys. I was a little heartbroken that we couldn’t do that but Luke took it really well. Besides wanting spending money so he could purchase the exact graphics card he’s been wanting for awhile (he’s a bit of a computer geek) he requested Taco Bell for dinner and my homemade cheesecake for dessert. (*Just want to toot my own horn here, but Mom’s cheesecake ranks #1 on his favorite foods list!)

Grandma drove an hour and a half each way to bring Luke a box of donuts for breakfast and visit with us in person. It was raining, so we all huddled in the garage and talked with Grandma from a safe distance away. While it sucked to have to visit that way, it was really nice to see her and I’m so glad she made the trek.

Overall, it was a pretty chill day. As you can see from the photos above, the cheesecake turned out beautifully and was a big hit. Between all the donuts, the tacos, and the cheesecake, Luke was pretty full. That second photo is good evidence that he was in a food-induced coma by the end of the day.

Now I’ll leave you with this, a lame haiku for my son:

Happy birthday Luke
Now a teen in quarantine
He loves his cheesecake

Crochet and Books

I hopped on today and saw that I hadn’t posted in nearly a month. Which is crazy, because it’s not like I’ve been on vacation or anything. Cuz, you know, the coronavirus and all. I live in Michigan, and if you’ve heard, we are under an executive order from our Governor to stay at home. I’m not going to go into all that because I’m so tired of all the political talk and the pandemic news and it’s all very emotionally exhausting. Which I suppose is why I haven’t been posting.

That is not to say I haven’t been up to anything. I completed an afghan for a nephew and started another one for a niece. I have 14 nieces and nephews and I’ve completed 6 blankets, so I’m almost halfway done! It’s a great way to pass the time. The pattern I use is very repetitive so I don’t even have to think about it much. I will usually crochet while listening to an audiobook or a podcast or watching tv.

I also have acquired a couple new gadgets. Mom toys, if you will. I bought myself a Ninja Foodi pressure cooker/air fryer thingamajig to celebrate my 21st wedding anniversary last month. I figured it was like a gift for both of us, because I have fun using it, and my husband gets to enjoy the food I make in it. Then for Mother’s Day my husband bought me (us) a robot vacuum. Like a Roomba but an off-brand. I didn’t think I would love it, and it’s such a cliché thing to buy for the mother of your children, but I am having fun with it. There is an APP you can use to operate it, and I’m a big fan of apps, so that kind of sold me on the whole idea. That and I believe our house is starting to smell a little less like dog and bacon grease.

I’ve been reading a lot of books lately. I recently finished Where the Crawdads Sing and I absolutely loved the entire story. It ended in a way that I did not expect, and it was beautiful. I’m not one to re-read books, but that’s one I think I could read over and over and not get tired of.

I also finished the audiobook, On Writing: A Memoir of the Craft, as read by it’s author, Stephen King. I haven’t read many of King’s books but what I have read I’ve enjoyed, and I love the movies that have been made based on his stories (Stand By Me, The Green Mile, Shawshank Redemption). I’m not generally into sci-fi or paranormal and I definitely don’t enjoy downright scary stuff, but those were all stories I enjoyed. And for all the crazy stuff he writes, Stephen KIng is a surprisingly normal guy. In this book he gave a lot of great advice for aspiring writers, so if that’s you, I highly recommend reading it.

Last night I stayed up super late reading The Giver of Stars by Jojo Moyes. I had to stay up late in order to finish it before the library loan ended, but also I just had to know how it ended! This was a great book based on a true story and was extremely thought provoking. Worth a read, for sure.

I think that’s all for now, folks. The month of May is crawling along while I hide away in my little turtle shell. Until I poke my head out again, I wish you all well!

Seeing the whole picture

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.

School is back in session

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.

Infusion day

I’ve been a little nervous about this upcoming infusion, as so much has changed from 4 weeks ago. We are now under a shelter in place order to stop the spread of the coronavirus. Essential workers and activities are still allowed, but people everywhere are taking all the advised precautions. I’m wearing a hand-sewn paisley face mask a dear friend dropped off for me last week, as well as a pair of latex gloves.

My pretty paisley mask

My husband dropped me off, and we tossed virtual kisses at each other as I got out of the truck. I walked into the cancer center, where my infusion center is held on the 2nd floor. In the entrance area, between two sets of automatic double doors, a man is sitting on a bench, wearing a face mask. I walk through the interior double doors and I’m summoned to a Purell stand and asked to sanitize the latex gloves I’m wearing. The woman at the station then asks where I’m headed. When I tell her the infusion center, she informs me that they have their own procedures and will ask me the necessary questions and check my temperature. I’m wondering if she can read my timid hesitation and confusion through my half-covered face.

I took the elevator this time, to get to the second floor. I usually take the stairs, but I still have poor balance and wanted to avoid needing to touch the handrail, even though I was wearing gloves.

On the second floor there are two women blocking the check in area. They are standing at makeshift stations, tall, round tables holding boxes of face masks. Each table is proceeded by a line of red tape on the carpet several feet away. This is where I’m asked politely to stand. Everyone is wearing a white face mask. I wait patiently for my turn.

When it’s my turn I’m instructed to remove the mask I’m wearing and put on the mask they have provided. They said I could wear my mask over the white mask if I wanted, but I declined and put it in my purse. I’ll save it for another day. I’m asked a series of questions and my temperature is taken, and the woman signs the form for me. So I don’t have to touch anything.

Once I’m cleared they tell me to stand at a red paper square on the floor, several feet ahead. I walk over and wait to be called but it’s tricky because the masks muffle all the sound and I can’t read lips that are covered, obviously. I forget how much lipreading plays a part in my speech comprehension.

A woman far ahead looks in my direction and points at me, because it seemed clear to her I wasn’t getting the message to come over to her desk. She checks me in, quickly, puts an ID bracelet on my wrist, and then I’m sent over to the waiting area. I find a seat away from other patients, breathe deeply, and wait.

When my intake nurse comes through the doors ahead, she sees me immediately and I can tell from her eyes that she’s smiling. As we walk back to my corner station, she mentions that it’s probably hard for me with all these masks on. She remembers me well; I’m a regular at this place. I say yes, that I forget how much I use lipreading until it’s not available anymore. It’s not impossible to understand, just a little more challenging than normal. Nothing I can’t deal with.

To be perfectly honest, the rest of the infusion went just as usual. It was a bit strange to see everyone walking around with face masks on, but I didn’t feel a heightened sense of dread or anything. It felt like business as usual for everyone. For all the nurses and staff, this has become their new normal (for now, at least) and they are well adjusted to it. Once I was sitting in my infusion chair, I felt completely at ease and had no reason to be fearful. And once I had my mask on properly, it was actually quite comfortable to wear. To quote the Dread Pirate Roberts, “I think everyone will be wearing them in the future.”

Dinnertime

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.

Runs with Birds

Laundry Always Waits

I ran today. I hadn’t run in over a week, and I would say 90% of that was because I was feeling emotionally drained. And I won’t lie, I’m still feeling somewhat emotionally exhausted, but I knew I needed to get some sunshine and fresh air. My soul needs it. So I jogged, I walked, I waved at strangers, and I listened to the birds sing.

I came back to the house and all the world’s problems are still here, but they don’t seem to be weighing me down as much. For now. Until they get too heavy again and then I will go out again and offer my cares up to the Lord and let the birdsongs fill the empty space in my heart.

I pray you are all doing well and staying healthy. May God sustain you and meet you wherever you are.

Getting Groceries these days

Ordering groceries these days is really…. weird. First off, the stores have been running out of a lot of things: toilet paper, flour, all the frozen things. Some of the shortages are due to people just panicking and losing their dang minds – like the toilet paper shortage which I’m sure everyone in this country is aware of. But flour and frozen foods, I think those things are flying off shelves because a lot of people are doing what we are doing, stocking up to minimize their trips to the store. So when I placed the order I warned my husband that we might not get everything that we wanted, but we agreed that “we’ll get what we get and we won’t throw a fit.” Of course, I said I might throw a little bit of a fit, but I would do my best to keep it contained.

I

So the weird part though, is that the shoppers are dropping the groceries off on people’s porches or in their garages. And then they leave. It’s the safest thing we can do right now to minimize exposure, but it’s strange, not to have the normal face to face interaction. Especially when they know that you are right inside the house, watching them unload the groceries. The Aldi shopper apologized to me that my groceries might smell like disinfectant because she uses a lot of it. I told her she was our people, and thanked her profusely. Then she sent the above picture to let me know everything had been unloaded and it was safe to come outside and get our stuff.

As you can see from the photo, we also had a Meijer order delivered shortly before. We had to order from two different stores in order to get all the things we needed. My husband, standing there at the back of the truck, wiped every item down with a disinfecting wipe and I brought them in once they were clean. It was a super fun process I do not look forward to repeating in two weeks when we’ve run out of food and supplies again.

Y’all, in a normal, coronavirus-free world, grocery shopping is one of my least favorite things to do. So I am super grateful for all the shoppers working their a$$es off to make sure the rest of us are well fed and safe at the same time. We are in strange times these days. Be patient, be kind. We won’t be here forever.

Skating with Piper

It’s been rather rainy the last couple of days but last week my son and I got out for a couple walks with the dog. My son is very active and full of energy, and he’s been doing surprisingly well during this period of quarantine. In the past he’s been pretty busy with sports so I don’t always get a lot of one-on-one time with him. Now that he’s in isolation, he’s been coming around and chatting with me about whatever is on his mind at the time. Folks, I am loving it. And the fact that he loves getting outside to walk the dog is pretty awesome too. Our last trip out before the rain came was with Piper on a skateboard, pulling Luke. She was a little confused about how it was supposed to work, but towards the end she almost had the hang of it. Almost. And you can tell by the smile on her face below that she was absolutely loving the attention.