Category Archives: Low vision

Family, Food, Friends, Low vision, Running

All about the pie

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Last weekend I ran the Pi Day 5k with my sister, her boyfriend, and a friend of mine (who has run this race with me for the past 4 years). None of us were running alongside each other, but you know what I mean. We all ran the same race and got our pie and medal at the end. This race is local, on trails I am familiar with, so I’m always comfortable running it alone.

I had originally signed up for the 10k, when I saw they had added that option. A few weeks prior to the race, it had become apparent to me that a 10k was a bad idea. I hadn’t been running much over the winter, and I also had developed some significant foot pain. I believe it’s plantar fasciitis, but I’m tired of calling it that. It just feels like two weird words paired together and I always feel like such a poser saying it out loud. I don’t want to sound all hoity-toity so let’s just call it foot pain. I can withstand a little foot pain for 3 miles of pounding pavement, but not six. So, I contacted the race director and downgraded to the 5k, and when she responded in the affirmative, almost a literal weight was lifted from my back. Seriously. Instant relief. The race went fantastic and though I had pain, it was minimal and easy enough to ignore for the majority of the race. I only tripped on my foot a few times, but had zero falls. That’s always a win.

As part of our race package, we were given t-shirts with a cute drawing of a slice of pie on the front and it says “Keep your eyes on the pies.” I’m not generally a fan of t-shirts, but this one is super duper soft. So when I put it on yesterday, I really wanted to love it. Great material, a fun pun, what’s not to love? Well, that cute graphic on the front was not properly centered. I took one look in the mirror and cringed. It’s not super obvious, but it’s enough to drive me bonkers if I keep thinking about it. I considered changing my shirt, but I was so excited to wear it to Bible study that morning that I decided to just let it go and move on with my day.

The problem with this though, is that I believe it set the tone for my whole day. In the morning I was making an egg salad sandwich for my husband’s lunch and as I slapped the second piece of bread on top of the salad, I noticed the shape wasn’t lined up with the bottom slice. Like a savage made it. Later that evening, I was preparing some Caesar dressing with “freshly grated parmesan” (a phrase I love to say). I opened up a brand new wedge of cheese, cut off a piece to shred, then set the remaining wedge down with all the other prep tools on my cutting board. When I was done with my preparations, I moved the entire cutting board to the kitchen sink, cheese wedge and all, and left it there, not having seen my mistake. I only became aware of it after dinner, when my husband was rinsing off his salad bowl and he turned to me and asked, “What’s going on here?”. I got up, looked into the sink, and cursed. “Oh, f*&$!” My precious parmesan was ruined.

Stuff like this happens to me a lot due to my low vision. Most days I can laugh about it but there are times when it really angers me. This was one of those times. I had just had enough of it. That whole day felt whackadoodle. Some kind of low-key curse was upon me and I blame that damn shirt. But at least we still had pie.

Friends, Nonsense, Low vision

Not a panic room

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My husband and I experienced our first escape room adventure with a couple friends who have done countless escape rooms. I was really nervous leading up this, not knowing what exactly to expect. I kept accidentally calling it a panic room, which was kind of funny. I knew that I probably wasn’t going to be a lot of help in solving the big puzzle, mystery, whatever you want to call it. It involves a lot of visual clues that I just can’t see. As it turned out, the skills I brought to the table were of jiggling handles, unlocking padlocks, and holding a flashlight. Not much else I could offer, but I had a good time. We did not escape in time, but we were very close! If we only had 5 extra minutes, I think we would have made it. When the attendant came in, she revealed to us the few steps we had left to solve the puzzle, and remarked that this was their hardest game. That made me feel pretty good, because this is definitely something I would consider doing again, if I felt I had a chance at winning once in awhile.

Anxiety, Books, Disability, Health, Low vision, Multiple Sclerosis, Stories

Moving Forward

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It’s day three of this debilitating fatigue, and I’ve been managing okay. I’m doing the bare minimum, the most essential tasks. It is strange timing, because my monthly infusion was last Friday. My energy levels should be going up, not down. There’s a little bit of hope on the horizon however. I talked to my therapist yesterday and I think we uncovered some of the factors that could be contributing to this.

Factor #1: we are having a string of below freezing temperatures here in Michigan. I’m wearing multiple layers in the house just to stay comfortable, but I think it still zaps me of energy.

Factor #2: I’ve not been running or otherwise exercising regularly for awhile. That was intentional, after I declared it hibernation season for myself.

Factor #3: I wasn’t taking my medicine and vitamins over the Christmas break. I had no routine so I had just sort of forgotten about it. None of these meds are super crucial, and I often miss a day here and there with no issue. But a whole two weeks or more? I guess it caught up to me. So I’m back on that wagon as of yesterday, and hopefully my energy comes back to functional levels. One of the prescriptions I take is Vitamin D2, which is super important for us with MS, and especially during these winter months when sunlight is in short supply, So it was a rookie move for me to not be taking that. Slap on the wrist, won’t let it happen again. Moving on!

I got some good news recently, and that’s that I was approved for O&M training through the State of Michigan. Orientation and mobility training is something I didn’t know much about until I started looking more into using a white cane in public and unfamiliar environments. Because as I may have mentioned before, in new spaces I get *super* freaked out not being able to see and recognize what’s around me. I get so fearful it’s like my physical and mental world just shrink so that I’m in this invisible bubble. I walk slowly, staring at the ground, looking up every few steps to study my immediate surroundings. It’s a very lonely feeling. I hide it well, I think, but I got tired of feeling that anxiety. Even worse, I think I avoid going out in the world in order to avoid it, and I’m tired of that too. So after meeting with a coordinator from the State I am really hopeful that this program can help me. I think I’ve become so accustomed to the struggle, and I’m looking forward to learning how I can manage better and feel more confident out in public. Yay for me being my own advocate, right? This was a very difficult decision to make, to be sure.

That is all for now, folks. I do have some book reports rolling around in my head that I hope to get hammered out in the next couple of days (weeks?) but we’ll see. Until then, stay warm my friends.



Bible Study Fellowship, Cochlear implant, Daily Snippets, Disability, Friends, Kids, Low vision, Multiple Sclerosis, Visually Impaired

Daily Post #7 – December 11, 2024

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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!

Daily Snippets, Family, Food, Friends, Low vision

Daily Post #5 – December 9, 2024

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I almost forgot my daily post! So, I’m sitting here at my desk, sans cochlear implants (so in the silence) and with my face 10 inches from the screen because I already took my contacts out. Basically, I’m going to make this quick. Today entailed some prayer in my living room with another mom from our school (we do this every other week but normally there are more than just the two of us), then a wonderful brunch with a friend I hadn’t seen since May. We had so much catching up to do and we’ve already planned the next meetup for next month. Then a quick stop at the lab to get my repeat blood work done. Hopefully they get it right this time. Then a stop at Starbucks for a mocha hazelnut latte – 2 pumps mocha, 4 pumps hazelnut. I took a solid nap, and then woke up to find my husband had successfully procured our new phones and service. We are now 4 for 4 an iPhone family which I am honestly not handling well at the moment. Nothing against iPhone, it’s just something new. And I am having significant trouble finding things on the phone and seeing the screens to log in to my various necessary apps, it’s just an exercise in extreme frustration. Both my kids have helped me with this, but a lot of it I need to just figure out on my own. It’s a very slow and somewhat painful process with low vision. I’m reassured by iPhone users that it will be worth the switch, so we’ll see. I hope it is.

That is all. You get one big run-on paragraph and I’m off to bed. We’ll talk again tomorrow!

Daily Snippets, Family, Holidays, Kids, Low vision, Multiple Sclerosis

Daily Post #4 – December 8, 2024

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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.

Anxiety, Daily Snippets, Disability, Driving, Food, Kids, Low vision, Marriage, Multiple Sclerosis

Daily Post #1

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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!

Anxiety, Disability, Exercise, Low vision, Multiple Sclerosis, Partial Blindness, Visually Impaired

Good Day

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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!

Family, Food, Low vision, Multiple Sclerosis

Dark Mode

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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!

Daily Snippets, Funny story, Low vision, Photos, Running

Where are my glasses?

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The other day I went for a run. Just before I left the house I was looking for my reading glasses in order to choose the music to stream from my phone. When I wear contacts it makes me far-sighted, so reading glasses are a necessity. When I run I often can’t read my Garmin watch well because I don’t have magic telescoping arms. I couldn’t find the glasses but I was able to manage without, so I left the house knowing I would surely find them later. I ran an easy 2.2 miles around the neighborhood. When I came back I grabbed my giant water bottle and went out on the deck with the dogs – our usual post-run routine. When I set my phone and water bottle down on the ledge of the deck I happened to glance down just enough to notice… my glasses were hanging from my collar. They had been there all along! I was surprised they hadn’t fallen off while I ran and chuckled to myself. Then obviously went back inside and snapped this selfie so I could show you how obvious and ridiculous it was that they were hiding in plain sight the whole time.

Running is going well. I’m taking it easy and focusing more on consistency and speed rather than piling on the miles. Only one race officially on the books, and that isn’t until March. It’s a 5k so my aim is to see if I can break my personal record (PR) from the 2019 Turkey Trot. That time was 34:03, which is ridiculous fast for me. I ran the whole thing terrified of tripping or getting knocked over, so I’m sure adrenaline played a huge role in my speed. That was before I had purchased the deaf/blind vest and to be honest, that was probably the reason I got the vest in the first place. I knew I would feel a lot safer with that information displayed for other runners. I’m currently in the process of getting trained to use a white cane for very similar reasons, but that’s a whole other post. I’m sure you’ll hear about that from me later.

I’ve got some other stuff rolling around in my head to write about so until then, shalom y’all…