Category Archives: Driving

Coffee, Daily Snippets, Driving, Exercise, Family, Friends, Holidays, Kids, Piper, Punky

Daily Post #3 – December 7, 2024

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Long and crazy day. The original plan was for the whole family to go pick out and cut down this year’s Christmas tree. And that was going to be it, a nice relaxing day.

We ended up doing a lot more than that. To start off, a friend texted first thing in the morning inviting me to join her at the gym. I said absolutely yes, since I had missed the day before and had been itching to go back. I got reacquainted with the elliptical – I hadn’t used one in over 15 years, when I was pregnant with my daughter – and learned very quickly that the elliptical is an efficient way to work out the upper leg muscles. OOF! I’ll definitely be coming back to those. Then, with jell-o legs we went over to the 30 minute circuit and got full body strength workouts in. I was so exhausted after but it felt really good to be moving my body again. And, it’s a nice change-up from running, which can get dull at times. We finished at the gym with chair massages and then went for coffee to do some real catching up. It was a fine morning.

L to R: Mike, Luke, Natalie (leading our golden retriever, Punky) walking toward the trees to search for the one we’ll take home.

Once home and showered, I went with Mike and the kids – and Punky! – to pick out our Christmas tree. That was a blast, as always. It’s a nice tradition we’ve kept through the years and I will miss it when it’s gone.

Natalie kneeling in the snow with our golden retriever, Punky.

So with the tree procured and placed in the living room, we decided to head back out for a special mission. My daughter’s cell phone was broken and needing replacement. Since we all have had our phones awhile and are outside of the contract, we figured now we be a good time to shop for new cell phones/plans. So we spent the entire afternoon driving to various service centers, price shopping. We finally settled on one, and tried to get it all set up, but ran into a snafu so we’re hoping to get that completed in the next day or so. Oddly enough, none of us got frustrated with each other during this whole ordeal. We actually just enjoyed hanging out together. I was extremely grateful for that. And!! For a good portion of the outing my daughter drove! She just recently got her learner’s permit so she’s learning. She kind of hates it, it really stresses her out, but I think she’s doing a great job and will hate it less as she gets more practice.

All in all, it was a pretty incredible day and I’m so thankful for my friends and family, and thankful to have a warm bed to come home to. I’ll be sleeping well tonight.

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!

Disability, Driving, Family, Low vision, Running, Writing

Focus

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Did I mention I went to see a low vision specialist a couple weeks ago? My neuro-ophthalmologist had recommended it, since my vision has remained stable over the past six years. I’m not sure why he waited so long to suggest it, because I could have used the help a lot sooner, but that doesn’t matter. Better late than never.

So I went to see this low vision specialist, Dr. Putnam, and I learned a lot. I learned that what I’ve been doing up to this point to manage my low vision has been helpful, in that I’ve adapted. However, I also learned that in many areas rather than adapt, I avoid. Take using cash, for example. It takes so long to figure out what denomination a bill is, or what type of coin I’m holding, that I just use my debit card for everything. Or if cash is my only option, I’ll ask one of my children to get the cash for me. Who knows how many other things I’ve come to avoid because they are too difficult?

The biggest thing I’ve avoided is driving. I’ve never actually had a doctor tell me I couldn’t. I just don’t because I assumed I can’t because I have low vision. When it was time to renew my license, rather than taking the required test, I opted for the state identification card instead. When doctors ask me if I drive, I chuckle. Because to me it seems so obvious that I CANNOT drive. So when this low vision doctor asked me if I drive, I reacted the same as always. I chuckled and said “No, that would be impossible.” Her response surprised me. Now this doctor has seen my visual field tests. She knows very clearly what I can and cannot see. And yet she said to me, “Don’t say it’s impossible. I don’t want you to get your hopes up too high, but I also don’t want you to count it out. There’s a lot we can do. Even if it’s restricted driving, it may be something that’s an option for you.”

This idea floored me, and I haven’t stopped thinking about it since. I’ve lost about 60% of my field of vision, but the other 40% is clear, as long as I’m wearing my glasses. Is 40% enough to safely drive a car? Dr. Putnam seems to think it could be, or it’s at least enough to warrant exploring the idea.

Speaking of my glasses, a year and a half ago, I bought a new pair with the recommended progressive lenses. The low vision doctor believed that the progressive lenses were not helping me, but were actually hurting me. The way they work, I guess they kind of block out or distort a good portion of that 40% where my eyes can actually see. Which would explain why I had secretly felt extra blind for awhile. I just figured that was the way it was going to be, and I just moved on. But now I have these new lenses, with an updated prescription, and without the progressive lenses. And let me tell you, there is a remarkable difference. It was a little strange the first day wearing them, but now that my brain has adjusted to them I can tell you I see so much better. Not close up of course, but that’s okay because I’m nearsighted. Seeing far away is greatly improved, and that has me thinking again about what Dr. Putnam said to me about driving.

My husband asked me about this today, the idea of me driving again, and I had to be honest, it scares the crap out of me. BUT – I’m trying to open my mind up to the possibility, just like Dr. Putnam encouraged me to do. I’m trying to ditch my all-or-nothing thinking here. Digging up the idea of me driving that I had successfully grieved and buried in its grave. It’s a big idea. Scary too. But I changed my mind once about this, I can change it back. It’s just going to take some time. We are deciding to reopen the chapter on this aspect of my disability and give it more thought and prayer.

So that is the exciting news around here. We have lots of other things going on but I won’t bore you today with the details. In addition to family and kid stuff I’m remaining semi-focused on running and writing, but that’s probably another blog post of its own. Stay tuned, I’ll try to be back at least once before Christmas. Happy Wednesday and peace to you, my friends.

Cochlear implant, Deafness, Disability, Driving, Hearing Loss

Memory Fail(s)

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Funny story (to me, anyway): This morning started out just like the previous few; ease out of bed, pack lunches for the kids, wish them well as they leave with Dad to go to zoo camp… Then I watered the flowers, made some coffee, and sat down on the couch to relax and do some reading. Forty-five minutes later I hear a honk, and the dog started barking. Perplexed, I got up to see what was going on. There was a white Spec-Tran van in my driveway. To pick me up. For the hair appointment I made just two days ago.

Oh, I was frantic. They don’t have to honk, and they certainly don’t have to wait for you to get dressed because you completely forgot they were coming. So I opened the front door, waved to let the driver know I was aware and coming, and rushed back to the bedroom to put on a bra (because I was still in my pajamas). The whole time – a matter of seconds that felt like eternity – I was praying the driver would not leave me. I hurried to put Piper in her crate, slipped on some shoes, grabbed my wallet and purse with a last minute check for my keys, and headed out the door. The sense of relief as I rode in that van was extremely gratifying.

Then as we were nearing our destination, the driver asks me if the address is 4020 (they often do this, which frustrates the crap out of me because they have GPS and I’m deaf, and it’s just hard and usually extremely unnecessary) and I say yes, that I believe it was next to a Quality Dairy, but I wasn’t sure because I’ve only been there once before. But then he pulls in to the salon’s parking lot and it’s there, right where it always has been, and the nearest Quality Dairy is at least 3 blocks away. Another memory fail. But here’s my note to Spec-Tran: don’t take navigation advice from the unlicensed deaf/blind girl. Her memory is like a sieve.

Minor mishaps, really. I was there with plenty of time to spare. I got a real haircut, and afterwards was able to chat with the stylist about cochlear implants. She had seen a video on Facebook showing several people, of all ages, reacting as their implants were activated. She was fascinated by the miracle of it, even though she knows she can’t come close to knowing what it’s like. She showed me the video, smiling the whole time, and her eyes just sparkled as she watched; she seemed to really “get it”. So it was just a good moment, to share in the awe of the CI miracle with a hearing stranger. It really is a miracle.

And then I called Spec-Tran (yes! with my cell phone!) to get picked up (we were done much earlier than I expected). When I got home I changed out of my pajamas (lol), let Piper out of her crate, and poured that cup of coffee that had been waiting for me. It’s good to be alive.

Disability, Driving, Low vision, Multiple Sclerosis, Partial Blindness

A glimpse at regaining independence

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I received approval today to use the paratransit service, and I am beyond excited. The service provides people like myself with rides to pretty much anywhere in the city. All I have to do is schedule the pickup within 24 hours, pay the fare, and off I go! I can apparently schedule online, which I tried already for two of my upcoming appointments, and I’ll probably call tomorrow to confirm that I did it right.

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No more pulling my husband out of work for doctor’s appointments, dragging him and the kids out at dinner time for my support group meetings, and who knows what else? I can go on shopping trips, get groceries on my own (up to 8 plastic bags), even take the kids to the library or the museum on days off! Just dreaming of the possibilities is more excitement than I have had in a long time.

Be thankful for the independence you have, because it can be taken in a heartbeat. My optic nerves were damaged as they are in a matter of weeks. I used to enjoy taking trips, sometimes just driving for the fun of it. The second to last time I remember driving (and enjoying it) was when I went to the abbey for a weekend getaway with my sister in august 2013. Even then I should not have been driving. A week later I drove my kids to their first day of school, with one eye closed to reduce the cloud in my left eye’s  field of vision, scared out of my mind and feeling reckless and over the top stupid for putting my children’s lives at risk. And that was my last time driving.

So there goes my Nascar dream. Is there a competitive arena for bumper?

Okay I got off track, didn’t I? Here’s the lesson: be thankful for your independence, whatever form of it you have. It is a gift.

Disability, Domestic Engineer, Driving, Food, Multiple Sclerosis

Weekly update of sorts

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I am in some super slow recovery type mode, so writing (book, blog, Facebook, journal) is not really happening. And that irritates me, but then I get irritated that I am so irritated. Vicious cycle. So today I am just going to bore you with this…

I had a rough walk to the bus stop this morning. I think the dog has gotten too big for me, and with her energy and drive, I can’t hold her back. She throws me off balance constantly. And with my balance issues, that’s a recipe for disaster. So I think we’re done with that program until she gets a little older and can be trained to behave better while walking. That is a thing with dog training, isn’t it?

So after the rough walk I put the pup back in her crate and went back to bed. The sleep probably helped, but I can’t tell. I’m still struggling with fatigue. However, I have managed to do the dishes and make dinner. Chili in the crockpot, and it smells delicious so far. Ground venison, onion, diced tomatoes, black beans, and chili powder. A simple recipe I don’t remember ever trying before, so I hope it turns out ok. We will have cheddar cheese, sour cream, and Fritos to top it off, so that can help with flavor. I thought about adding the can of spicy chili beans that has been in our cupboard forever, but the kids really don’t like spicy, and neither do I. We’ll see how the chili tastes in a couple hours, and I may still decide to add some.

I mailed an application today for the local public transportation service for disabled people. They drive the van right to your door and take you where you need to go. I’m excited about it. As my husband put it, it will give me a level of freedom back. I wouldn’t need to rely on him to take me grocery shopping, or to my umpteen doctor visits. It’s hard to describe how helpless it makes me feel, not being able to drive. I don’t miss the driving so much as I miss being able to go where I want to go. I am an introvert, so one of my favorite things is to go do things alone. Sit at the coffee shop and read or crochet, walk around a bookstore or mall just to browse the merchandise. But if you always need a driver, someone is always waiting for you, and that’s pressure I don’t handle so well. I HATE feeling rushed.

But this Spec-Tran, you plan each ride one-way, so no one is waiting. You tell them when you need a ride back, and they’ll send another driver. At least that’s my understanding. We’ll see how it actually works, but regardless there is no cause for guilt because this is their job, and they aren’t just doing it out of the kindness of their heart. Why is it that we feel guilt when someone does something for us out of the “kindness of their heart”? I mean, by definition they are doing it because they want to, not because they feel obligated. I know it’s not just me. But that still doesn’t make it rational or right.

Oh well. I declare that today is not a day for solving things. It’s a day for reflecting briefly and moving on! Coffee is waiting!

Driving, Guns & Ammo, Low vision, Marriage

Range Date

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Grandpa agreed to come and watch the kids (and the puppy) after church so Mike and I could go on a date. Where do we go for fun? The shooting range! Mike shoots competitively (and does quite well for someone who doesn’t get a lot of time to practice), so when he gives me a fist bump after I’ve shot a few rounds, I feel pretty proud of myself. See for yourself in the picture below, that hole right in the middle, dead center? That was my first shot. I thought at the time I should have stopped right there, but I’m glad I didn’t.

I was shooting my Sig Sauer P238 (with new paisley decorated grips… I really ought to have a picture), my Glock .380, and Mike’s Glock .45. We had a blast, and it is such a great way for both of us to relieve stress. We were wrapping things up when Mike started chatting with an acquaintance from a couple lanes over. I think Mike must have shared how much I was enjoying shooting the .45 (cuz I was, you know?), so the man offered to let me shoot his gun: a Desert Eagle .44 magnum. This gun was a monster. Not too heavy to hold, but it was almost too big for my finger to reach the trigger. I had a hard time managing the recoil, so I was pretty surprised when I saw I hit the bullseye. I told the guy after I shot three rounds – with his super expensive and impressive gun – that I didn’t do so bad for having low vision! Maybe I should have mentioned that first? Oh well, I shot well and he seemed mostly humored that I was having so much fun with it. (He even accepted my friend request on Facebook!)

We didn’t get a picture of the target I shot with the magnum, but the one below is from the rounds I shot with the Sig P238.  I think. Maybe it was the Glock. Anyway, not too shabby for someone who only gets to the range a handful of times throughout the year. I can’t drive a car, but I can shoot a gun! 🙂

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Driving, Kids, Motherhood, Partial Blindness

Here comes the bus

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I will start off this post by assuring everyone that #1 – my husband found my driver’s license, and it is still valid, so I was within my rights, and #2 – no one was harmed during the events of this story.

So. I walked the kids to the bus stop the last two days, and it has gone very smoothly. I was sharing this fact with my husband and I guess in the matter of sharing, I told him I would like to continue the daily procedure. But my crappy memory told me this morning that he had said, or the kids had said, that he would continue to drive them. So at 7:50 this morning I was freaking (I do that, it’s not pretty) because he was still in the shower and oh my gosh, they need to be at the stop in TWO minutes! No way, no how is he going to be out and dressed in time to drive them, and only Superman could get us there that fast on foot (or cape?).

What was a frantic Momma to do? Thinking fast, I grabbed my coat, keys, and purse, and the kids and I got in the car. And I drove the three blocks to the bus stop. We pulled up just as the bus rounded the corner from the other direction, making it JUST. IN. TIME.

I didn’t run over anyone, I didn’t hit any cars, I didn’t even run into any curbs. No harm, no foul. Daytona is not in my future, but maybe bumper cars??