Tired of my daily updates yet? I am, a little, but I’m going to keep it up for awhile. Today was mostly uneventful, but we had some wins. I slept late, until 10:30, because I’m still recovering from three consecutive days of full activity. I was feeling really sore, and my legs were hurting a little from the cold weather outside, but I took a shower and that warmed me up a bit, so it relieved the pain. Nerve pain is no fun, but I’m glad that heat and movement are two things that help.
After my shower I went downstairs to make my coffee and loaded the dishwasher. If you see me going to bed with a stack of dirty dishes left in the sink, that’s a clear signal that I’m dealing with fatigue. I am really bothered by dirty dishes and will usually take care of them as soon as I can, so when I don’t there’s usually something wrong. But, I tend to have a bit more energy in the mornings, so this morning I just took care of them while my coffee brewed.
And then! Then, I started a movie on my laptop and started wrapping Christmas presents. This is not a fun project, ever, but it is one that feels great to have done. I finished after four hours, right as my daughter was coming home from school. Also this evening we finally decorated the tree that’s been sitting bare in our living room for the last 6 days. I guess this means I’m ready for Christmas. Next week I’ll wrap the last of the presents, make batches of puppy chow and roasted pecans.
With me being so busy and it being so cold outside, I haven’t done any running in a bit, but it’s not for lack of thinking about it. I’m sure once it slows down a bit I’ll get back out there. Cold weather runs are really difficult to get yourself out for, but they are always exhilarating and rewarding. Hopefully next week.
Oh boy, you guys. My brain, my legs, my arms. They are all so tired today. I moved around and did things, but most of the work I did was sitting here at the desk. I tidied up my space a bit, because when I am surrounded by clutter I just can’t think straight. Too much nagging from the objects needing my attention.
I had planned to work on wrapping Christmas gifts today, but the kids had a snow day. That meant my early morning meeting with the school was postponed as well. Again. They had a snow day last week on the same day as my scheduled meeting. Anyway, so no wrapping got done. However! I did organize the gifts, assessed what we have, updated my spreadsheet (of course I have a spreadsheet) and even placed a couple last minute orders. One of them won’t get here in time for Christmas, but it will be close. So I’m ready to devote tomorrow to boxing and wrapping the gifts and I do hope I have the house to myself so I can accomplish that in peace.
On the subject of Christmas, you may remember last Saturday I posted about us going to get our Christmas tree? Yep, and it’s still sitting in our living room, without decoration. The dogs don’t seem to mind, but I talked to the kids and we’ve decided tomorrow will be the day to decorate, so I think I’ll make some peanut butter popcorn tomorrow so we have something yummy to snack on while we decorate. It always feels to me like a daunting task, decorating the tree, but the kids are almost fully grown adults and are super helpful, so it’s really never as bad as I expect. We will have a good time.
And that is all for today. I’m sure there was more I wanted to talk about but I am beat. I did not exactly rest the way my body needed, so I’ll be putting myself to bed once I hit post. Good night, y’all.
It’s bedtime, folks, and I almost forgot to post! My head is all squirrely today. Trying to set up new phone and learn necessary features is such fun. I mean, not really. It’s exhausting, but I’m getting there. I had some trouble last night getting it properly connected to my cochlear implants via Bluetooth, but I handed it over to my daughter and she was able to get it working. Teenagers, you gotta love ’em!
Today was a fun day filled with great conversation with beautiful people. First, at BSF (Bible Study Fellowship) and then later with two of my besties. Three days in a row spending time with awesome women. I am feeling super blessed this week.
Tomorrow and Friday the plan is to wind down and regroup. I have an early morning online meeting with someone from the kids’ school – nothing major, just some routine business to take care of. Hopefully it will be quick and painless lol I had thought about going to the gym afterwards but I decided to postpone that for Friday or Saturday because not being home much for three days in a row leaves me wondering what is needing my attention. The kitchen, fridge, our personal finances. All of it needs some TLC so that’s what I’m looking at. I’m sure you’ll enjoy reading all about that after the fact, right?
I’m enjoying these quick daily updates. One thing I should mention before I go – just to keep it M.S. related for all those who may be curious – setting up this new phone, finding all the features, reading the screen, etc. is utterly exhausting on my eyes. It’s legit work, for real. I find I need to take super frequent breaks to rest my eyes. When they start acting all stabby and bouncing around, I know I’ve overdone it. It’s slow work, and I’m really trying hard to stay thankful that I still have some vision and it’s remained stable all these years.
And that is all, I’ll let you go now. Sleep well, my friends!
As expected, I am ending the day exhausted from a productive and fun day of shopping with my sister! It started out with a quick trip to the dermatologist to follow up on my rosacea. The treatment is working well, daily ivermection applications and antibiotic treatments as needed when my skin flares up. It flared up after Thanksgiving and I’m almost positive excess sugar was the culprit, so I’ll be sure to avoid that in the future. Okay, that’s a lie, I like sugar. I’ll probably just try to keep it in moderation. It’s impossible to say no to pumpkin pie.
My sister picked me up from the dermatologist so we could get a rapid start. We started out at Five Below where I found a case and charging adaptor for my new phone, as well as some fun gifts for the kids. Then we traveled over to Costco, Target, Marshall’s, and Bath & Body Works. There was a stop in the middle for an appetizer and drinks, just to rejuvenate us for the rest of the shopping. We were holding up quite well, but our brains were needing the break. I arrived home with bags and bags of goodies for the family and I’m ready to start my Christmas wrapping. It was a great day! We have really enjoyed these times and are happy to continue the tradition each year.
That said, I’m exhausted and I still have another full day ahead so I’m praying I can maintain. This is a lot for me so I expect I’ll be dragging my Thursday and Friday. For sure, I’ll be dragging. I know I’m pushing myself beyond my normal limits and just banking on the ability to rest for a few days after. I’m just grateful to have the opportunity to have memorable moments with friends and family. Wishing you all a great night and I’ll talk to you agin tomorrow, Lord willing. Shalom!!
Another busy day today. I went to church in the morning. That was nice. We had our annual meeting at the start of the service, which just means the board updates the congregation on the state of the church’s finances and other administrative items. Super boring, but crucial because we are a 501(c)3 corporation. And if we were to ask the congregation to come to a meeting, they likely would not show up, so you have to catch them while they are there for the service. A captive audience. Sneaky, I know.
After church the husband and I went back to Verizon to see if we could get the new phones set up. Negative. I had to unfreeze our accounts with the credit bureau (I froze them a couple months back when there was a huge data breach), and they hadn’t updated that information with Verizon yet. It was a weekend, and the guy at Verizon said that was likely the reason. They just need a human to handle it, perhaps? We are hoping that it gets resolved tomorrow because poor daughter is itching to get a working phone back.
The third act of the day was a baby shower. My daughter and I attended, and I’m so glad she went with me because I didn’t know anyone there. Just the mom-to-be and her mother-in-law. It was a solid three hours of estrogen and I was pretty exhausted by the end of it. But, I’m happy for the new parents, and I’m glad we were able to be there.
I finished the day with mundane stuff that needed to be done. Washed dishes, folded laundry, vacuumed, that sort of thing. Took a look at my calendar for the week to make sure I have all my rides scheduled. I still have a blood test I need to get so we’ll see when I can squeeze that in. It’s the test for the JC virus that I’m required to get every six months. My monthly infusions carry a much greater risk of me getting a fatal brain disease, PML, if I test positive for the JC virus, so that’s why we do this. Only I had the test done last month, and they screwed up the order so I need to go back and try again. I’m super grateful I’ve remained JC negative after all these years on the medication (Tysabri) and am praying I continue to stay that way.
In other news, Christmas is coming. Have you heard? My kids have both issued their wish lists (at my urgent insistence) and my sister is taking me shopping this week so hopefully we can find some things on the list. I’ve already been able to do some shopping online but a lot of items are better found in stores, and that’s something I need assistance with. We started this shopping tradition a couple years ago and we had such a great time, we decided to keep doing it each year. It’s a drive for my sister to come up to where I live, but it’s a huge help to me. I’m grateful for her help in finding things and for her patience when I’m not 100% clear on what it is I’m looking for. It will be an exhausting day but productive and memorable, I’m sure.
That about sums up my day. I’m hoping to sleep decently tonight. The last couple nights I’ve been waking up with night sweats, and that’s no fun. Hormones are a hoot.
I decided this morning that I want to do a daily post and see how long I can keep it up. Just a recap, no editing or fussing over wording or details, just stream of consciousness, talk about my day, and call it good.
So, day 1 here, December 5, 2024 started off around midnight, 1 am, waking up with a migraine. I took various pain medications throughout the night and eventually it was calmed enough to let me sleep. Hubby putting pressure on my forehead and holding my hand didn’t hurt either. I tend to get very panicky when I get these migraines, so if nothing else his gentle presence kept me from spiraling into a panic attack.
When I woke up in the morning (kids had a snow day so I was able to sleep in a little) I still had the shadow of the migraine so I took a 600 mg Motrin so that I could be comfortable for my infusion later in the morning. I had also had night sweats, which I found interesting. I haven’t had a migraine or night sweats in some time so it makes me wonder why they made a reappearance on the same night. Oh well. Onward.
I got my infusion and had zero issues with the IV – yay! – so that was a relief. I had some issues with my pickup ride running late due to the roads, but the ride home went fine and I survived it all. I’ve been having frustrations with Spec-tran because they are short on drivers and the people scheduling their routes clearly don’t know how to read a map, so getting anywhere on time can be a gamble. I’m still so thankful for that service, but I also still really miss being able to drive myself places.
This next update is long, so settle in: About a month or so ago I met with a woman from Michigan’s Bureau of Services for Blind People (BSBP) to talk about training for using a white cane, and various other O&M (orientation and mobility) training. This is new information, y’all. I’ve considered using a white cane, off and on, for as long as I’ve had low vision, and I just decided it was finally time. The majority of the time I’m out and about I do fine, but there are the handful of times where I’m out in public, in unfamiliar places, and I feel completely unsafe. Super anxious. And when I realized how much anxiety I was feeling so often, I determined that maybe I could do something about it. I’ll be honest, I was absolutely conflicted about the idea of using a cane, because it can draw a certain attention to myself (mainly fawning, which I loathe), but in the end, after much prayer and pondering, I decided to take that step. So I met with a woman from the BSBP and we are working on getting me approved for services. After talking with her for a good length of time, I was so encouraged at all the ways they can help. Ways that I didn’t even realize I could use the help. Ways I’ve adapted over time, muscled my way through, and now I’m just tired. So tired.
I have a white cane that a friend gave me to use several years ago. She is blind herself and this was one she no longer used. We are around the same height so she figured it would suit me well. And it absolutely does, but I still need proper training. I did watch some YouTube videos to learn what I could, and I’m comfortable using it, but I know training is still needed in order to get the most benefit out of it.
You guys, it’s a game changer! I took it with me on a women’s retreat and used it while we were shopping in downtown Saugatuck. Outdoor walking, lots of cracks and bumps on the sidewalk. But with the cane informing me of what was to come, I was able to walk with my head up, not staring down just past my feet. I was even able to engage in conversation with the other women and that was probably my favorite part.
I had to make it fun, so I named the cane. Casey. Casey Cane. And she is now my companion for special outings. I take her to the gym with me and she is very useful for riding the bus. When I’m holding Casey, the bus driver doesn’t rush to leave. They actually wait until I’m seated before they start moving the bus again. It’s wonderful!
Another benefit to having Casey is that when walking in crowded areas, people aren’t expecting me to get out of their way if they are walking towards me. I’ve been in busy areas before where people nearly plowed through me, and it’s quite scary because I really can’t see them coming until they are very close.
The problem with my disability is that I look completely fine to strangers. In society, we have unspoken expectations on others. So it helps that they can see Casey and know that it means I can’t see well and likely need more space and time. I have said before it would be so much easier if I just had a sign on my shirt that says, “Deaf/Blind” much like the running vest I wear. So rather than wear a bright orange Deaf/Blind vest on outings, I’m going with something a little less obnoxious, a white cane.
Oh, and the best part? ZERO people have made a fuss over it. No fawning, whatsoever. They just carry on like it’s been there all along. I absolutely love it.
Since this is just a daily recap, I’ll finish off with the dish I prepared for dinner. Chicken and broccoli alfredo. I used a rotisserie chicken, and it was my first time breaking down a chicken, so I was pretty nervous about that. Since I couldn’t really see what I was doing it was all done by feel. I felt like I did okay, but one of my husband’s first bites was a piece of gristle or bone or something. Ack! That just ruins the whole dish you know? But my portion was tasty, so hopefully that was the only piece I missed. I made the alfredo sauce from scratch because it’s super easy, and storebought alfredo is crap. Overall I thought it was a yummy dish, and my son agreed, so I’ll keep the recipe for a repeat down the road and hopefully I can do better with the chicken next time. I put notes on how it went in my recipe app (Plan to Eat), because I know I’ll forget this information.
And that’s all for my recap. I’m pretty spent from the day and looking forward to tomorrow. I have to get some lab work done because they ordered the wrong test on a crucial item last time. But I’ll leave you there because I can talk about that in tomorrow’s daily update. How about that? Good night, and we’ll talk tomorrow!
Some days we get to feel like we are winning. Not that there’s any type of contest, or reward for this “winning”. I mean the kind of day where you know you’ll be going to bed pleased that you were able to accomplish what you set out to do.
Today sort of feels like that, and I’m rereading that statement above and cringing at how pretentious it sounds. All I’m really trying to say is I’m proud of myself. And I don’t always feel that way, so it feels worth mentioning. Today I went to the gym and tried the 30 minute circuit that I had been wanting to try but had been too self-conscious to do. I was just nervous that i wouldn’t be able to see the numbers or instructions and that people would see me fumbling around or staring so long at the signs and would laugh at me. But I did it anyway! And it seems I started a trend because when I entered the room, I was alone. By the time I finished the circuit, several more people had joined in. When you finally do something that you had been avoiding for so long for fear of being laughed at, it’s a pretty incredible feeling of accomplishment. To be bold and confident when you don’t normally perceive yourself that way? Definitely feels like winning. The feeling is the reward.
Also, and this will hopefully be addressed in a later post, I traveled with my white cane today and I have to make an observation. The city bus drivers are a lot more patient with you when they know you have a disability. I found that when I have the white cane out in sight, they actually wait for me to be seated before they start moving again. I definitely appreciate that. I have so much more to say about this topic but the story is still working itself out, so it will be awhile before I can fully report on it. Stay tuned for that!
Fun fact – I cannot read normal computer screens. I cannot navigate filling out forms on paper without significant difficulty (and inevitably leaving a lot of fields blank). My visual impairment is unique in that a good portion of my visual field is covered in fog. That’s the best way I am able to describe it. When I look at a “normal” screen (i.e. white background) I can’t see most of what is there. This means that a lot of the apps I use on a regular basis are very difficult for me to use. Over the years I’ve learned to be patient and allow myself more time to complete tasks.
But when I open an app and discover they have added the dark mode feature? Oooh boy, I can’t tell you how relieved I feel! I remember the first time this happened was with Facebook, and while I was elated, it didn’t add much value to my life. Cuz you know, it’s Facebook. But then, much later, I opened up my recipe app, which I use a ton for preparing meals and snacks for my family – something I strive to do well at, whether my family really cares or not – and it was in dark mode!! Let me tell you, that made my whole week.
Then awhile back I had another pleasant surprise when I opened the Android app for Goodreads to find my next book to read and it was in dark mode. I could have cried. I am an avid reader and it’s been so frustrating to not be able to really navigate that app for so long.
My third win for dark mode happened when I finally dug around the interwebs and found tape for my label maker in “white on black”. Guys, I’m having so much fun with this! I am a label nerd, for sure, and the first thing I did with my new readable labels is to tag my leftovers. Because once I put the dishes in the fridge, I never really know what’s there. Not without taking each dish out and opening it up, and even then sometimes I can’t tell without actually sniffing or tasting the food inside, and that’s I think mostly due to the atypical colorblindness. So labels have been a game changer. I’m a very happy woman over here.
For the record, these are my favorite apps that I am able to view in dark mode: Plan to Eat (my recipe app!) Goodreads (books!) Facebook (no explanation needed) YNAB (my awesome budgeting app!) VRBO (trip planning) Booking.com (trip planning)
Now it would be great to have my banks get on board. Out of all the banks we bank with, NONE of them have a dark mode option. So I keep doing my banking on the computer, where I have extensions to view those web pages in dark mode. Tell your programmer friends… we want more dark mode!
Runners like to ask each other questions like, “What’s next on your calendar?” or “Do you have a goal in mind?”. The answer to that first question is nothing. I have nothing on my calendar. But to answer the latter, I do have a goal, and that is to focus on running faster 5ks. I told my husband when I came home from Sleeping Bear that I was done with longer races for awhile. 10k would be my max. He didn’t believe me. He says I say that every time. Which is probably true, but whatever. I think this time I’m serious. We have a high school senior now, and our youngest will soon be learning to drive, so I just want to have more time and mental focus available to be there for my kids. Training for half marathons takes up a lot of time and focus. But speedwork for 5ks? I can do that. And it’s a goal that keeps me active, which for my M.S. is a really important thing.
So for the blog going forward I’ll still be talking about running and fitness related stuff, but I’ll likely start throwing in other random crap I’m obsessing about. Because I’m always finding random crap to obsess about. If you had to guess, it’s most likely food related. Probably.
P.S. I’ve really been struggling with my writing lately, and I know that’s really normal so I’m riding it out, but I’ve been thinking about short stories. I have lots of short stories in my head, and I want to work at getting them out on paper to share. And when I say paper, I mean the computer screen obviously. So you might see some of that here too. As always, no promises.
Finally, my post race recap. It gets a little messy in my head, so bear with me (you are welcome for that accidental pun!)…
We call this Flat Mel. It’s a runner tradition to lay out your gear the night before. One last check to be sure you have everything you need!
Allison and Mel, getting some pre-race fuel at Slabtown Burgers in Traverse City.
The Sleeping Bear race was four hours away, so I booked a motel in a nearby town for myself and Allison, my guide runner (all the lodging in the area was filling up fast!). We had to drive to Traverse City (also nearby) to pick up our race packets so while we were there I introduced Allison to one of our favorite T.C. restaurants, Slabtown Burgers. After dinner, we made a valiant effort to find ice cream for dessert, but were unsuccessful. All the ice cream shops were closed for the season!
The sun setting over Lake Michigan at Empire Beach
We drove to the beach where the finish line would be the following morning, and got some pictures of the sun setting over the water. Incredible to see. There was a local retired man with two goldendoodles there watching the sunset, and we chatted with him for a minute. I asked him about the hills on this course, after he told us he rides his bike on the trails all the time. He said there were a couple of decent hills, but assured us they were short (Spoiler alert: he lied.).
The morning of the race was cold. I think maybe around 40 degrees Fahrenheit? A little more than a few degrees above freezing. But the forecast showed it would be warming up to the 60s, so I dressed for that. You warm up quick when you are running, so it’s always wise to dress for the later weather, not the earlier. We parked at the lot near the finish line, and walked over to hop on a charter bus that would take us to the starting line. The charter bus was a welcome reprieve from the cold. Soft cushy seats, heat. I was making a conscious choice to enjoy this ride. I was excited to be surrounded by all the other runners, and excited to finally be running this race I had been training for.
Once we were delivered to our starting location, we got in line for the bathrooms for one last go. I was thankful to have a real bathroom available because I have a semi-logical fear of porta potties. And since we had gotten a pretty early start, the lines weren’t terribly long, and I was also thankful for that.
Runners waiting in line for porta-potties with the sun rising in the distance.
From the bathrooms we walked over to the starting line and waited some more. The sand dunes were to our left, and the starting line to our right. The sun had just started to peak out when we got off the charter bus, so by the time we were waiting at the starting line, it was in full sunrise glory. I got a great shot of the sun rising over the portapotties (the ones we didn’t have to use).
The starting line
While we waited we were able to cheer on the full marathon runners as they made their start, 30 minutes before us. And before long it was our turn. We counted down, and then we were off! The start of most races is always pretty crowded, and this one was no exception. I just tried to stay focused on not going out too fast, and let all the faster runners get around me (let’s be honest, they were all faster runners).
It was in that first quarter mile that I realized my Garmin watch was on my “walk” setting from the day before! So I didn’t have my pace showing in the big bold numbers, and I didn’t have my run/walk interval notifications. No worries, I was feeling pretty strong and told Allison I would just keep running at this pace (whatever that was) and see how it went. Throughout the race she was able to tell me how fast we were going, so that helped a lot. I wasn’t worried about missing walk breaks because I knew there would be hills coming that I would likely need to walk up (and down), so that was a fine compromise for me.
I can’t remember how far in I started feeling gassed, but it was a lot farther in than I had expected. I was feeling great. Super surprised at how well my legs were holding up. However, in the last half of the race there were lots of moments where I was running out of gas and needed the Gatorade that the race organizers provided at the aid stations. I knew that would be provided, so I intentionally did not bring any hydration with me. And as it turns out, that Gatorade saved me. Without those periodic pick-me-ups, I would have been slow walking the last half of the race, for sure. I would walk through the aid station, gulp my Gatorade, and minutes later that second wind would come and I felt like I could run again. It was quite fascinating to me, that such a simple thing could rejuvenate me so quickly and I was able to go from barely able to move my legs, to being able to run again.
I can’t give a play by play, because I don’t remember details of any race that way. I’m sure some people can, but I’m not one of them. I remember snippets. Like the time I tripped on a small crack and went flying forward. Allison thankfully had quick reflexes and caught me before I fell. Falls like that are so scary. They happen so fast yet they seem to happen in slow motion. During this race it happened around the 10 mile mark and I only remember that because that’s when I was starting to feel the major fatigue in my legs. Hence the trip and near-fall.
The last mile was an exercise in insanity. I was trying my best to stay in a running motion, but it was getting so difficult. I did have to walk some to rest my legs because I wanted to finish strong. So during the last mile I told Allison to stay close to me, because falling was definitely a greater possibility. I was starting to get mildly frustrated because there were so many turns in order to get to the finish line. I kept asking her, can you see it? And she never answered in the affirmative but assured me we were getting closer.
Allison and Mel crossing the finish line
The closer you get to the finish, the more spectators you see on the sidelines. At one point, a woman shouted to us, “You’re almost there!”. And I shouted back, “I don’t believe you! She’s (Allison) been telling me the same thing!” But alas, we did finally turn the last corner that revealed the finish. I couldn’t see it as much as I could hear it. The cheers and shouting were endearing. So many people there to support all the runners. And on our right, hordes of faster runners walking back to their cars with their arms full of snacks. That’s when I knew we were close – all the snacks. I forgot all the pain and weakness I was feeling and ran forward. Allison and I both raised our arms in the air and smiled big as we crossed that finish line.
I tried to walk out of the way of the runners coming behind me but my legs wouldn’t withstand walking, so I collapsed onto Allison instead. A photographer rushed over to help walk me over to the fence and someone offered us bottled waters. I kind of hate this drama at the end of longer races, because it really looks worse than it feels, but it’s unavoidable. When I’m pushing my legs that hard, I have to expect they are going to rebel. I think my prayer is always just that they wait until I cross the finish line for that rebellion. One of these days it could result in a DNF (did not finish) and that would be soul crushing.
After my legs resumed normal function (mostly), we sauntered (hobbled) over to the snack area and retrieved our hard-earned spoils. Banana, granola bar, beer, and orange slices!! I remember getting orange slices at one of the aid stations during the Grand Rapids Marathon and how it felt like a gift from heaven, it was so refreshing. On this day? Equally miraculous. The gentleman handed me two and I could have kissed him I was so happy. Orange slices never taste as good as they do after running all those miles.
To end the race experience we walked over to the beach area and took our socks and shoes off. The water was blocked off by a slight stone wall, so we didn’t put our feet in the water, but putting our feet in the sand was cooling enough. It felt amazing to sit and rest there. Allison didn’t know this about me, but I used to have a strong aversion to sand. I couldn’t stand touching it. Up until a trip with my family to the Michigan’s Upper Peninsula in 2020. We walked onto the beach so we could all dip our toes into Lake Superior and I found myself saying, “oh, this feels nice”. Which was such an odd thing for me to say, I surprised myself! Something about that trip I guess flipped a switch and now it doesn’t bother me. Sand, sugar, flour, it’s all okay for me to touch. It doesn’t make me cringe anymore, and I’m loving that change. But I digress…
We sat for awhile and then decided we were hungry, and ready for that post-race meal to replenish all that we had burned off. We had decided ahead of time to get pizza, because it happened to be something we both love. After some quick Google searching, Allison found us a highly rated pizza place, Papano’s, that had a location nearby. They had personal size pizzas, so we each ordered our own and got what we liked. It was a fantastic end to a full and memorable race experience.
Deaf and half-blind runner with multiple sclerosis
Little M.S. Runner 