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.
Daily Post #7 – December 11, 2024
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 Post #6 – December 10, 2024
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!!
Daily Post #5 – December 9, 2024
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 Post #4 – December 8, 2024
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.
Daily Post #3 – December 7, 2024
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.
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.
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.
Daily Post #2 – December 6, 2024
Here we are again, folks! Daily recap coming atcha…
This morning I had planned to get dropped off at the lab to get some repeat blood work done (the original test was ordered incorrectly) and then walk over to the gym (they share a parking lot). However, when I woke up with the kids my stomach was not feeling right. As I moved around the kitchen it got increasingly worse, and devolved into sharp, stabbing pains. A pain I know all too well as gas. So I knew I wasn’t going to be able to do much until that got resolved. Skipped the trip and went back to bed. Falling asleep in the fetal position did the trick, and a couple hours later I was good as new.
The middle of the day didn’t consist of much. I ate some yummy leftovers and did some reading. I’m listening to The Case Against Sugar by Gary Taubes and it’s pretty interesting. Since it’s an audiobook I find myself getting distracted pretty frequently, but mostly I’m learning that a lot of what has been researched about the dangerous effects of too much sugar in our diets has been shoved under the rug by corporately funded researchers. All the folks benefiting from the sugar industry have spent a lot of money to keep people from learning that in the large quantities we consume it, sugar is harmful.
The other book I’m reading is The Obesity Code by Dr. Jason Fung. I recently finished his other companion book, The Diabetes Code, and I kind of wish I had read them in order because a lot of what I’m learning in this one would have been useful as I muscled my way through The Diabetes Code. I am downright fascinated by the science in this book. And encouraged, because it’s debunking a lot of the closely held yet erroneous beliefs our society has about weight loss/gain. Weight loss/gain is not an exact science, nor is it a simple math equation. The answer to losing weight is not calories in/calories out. There are so many systems in our bodies that play a part in fat production and processing the calories we put into it. So we need to stop shaming people for their size. Okay? Just stop it. I got in a heated debate a few months back on social media with a guy who was griping about people using the motorized carts at the grocery store, saying they needed to leave those carts for the truly disabled. I pressed him on it, knowing I am one who is truly disabled yet doesn’t look it, and found that he was referring to the heavier people. He said they needed to just walk more. Obviously he’s never struggled with his weight.
We need to be kinder, people. Because we really don’t know what we don’t know. We have been fed lies for decades that in order to achieve or even maintain a certain size, we just need to do A, B, and C. Simple right? Except that it never works. All my friends are entering the land of menopause and haven’t changed a thing, and yet we are getting larger. Is it our fault? Of course not! Hormones, baby. They have everything to do with why our bodies hold onto fat and there is not a whole lot we can do about that. I think we’re getting closer to finding answers, but what do I know? I’m just a retired accountant who likes to read about science.
Whew! Getting off that soapbox now. I finished off my day by attending my son’s wrestling meet. I don’t usually get to go, but my husband had come home early so I was able to ride up with him. We had a great time, Luke wrestled his heart out, and then we came home. Saturday we are hoping to go get a Christmas tree, so I look forward to updating you again tomorrow night!
Daily Post #1
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!
Good Day
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!
Dark Mode
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!
Little M.S. Runner 