Category: A Bit Of Randomness

This category is full of randomness that really doesn’t fit nicely into any of the categories having to do with my road to walking.

12 Years

Yesterday, we witnessed a mom caregiver struggle with her son to get into a car. He was in a manual wheelchair. There was another woman who was going into the chiropractor office as well. My Mom got out of the van to investigate and talk to the woman. I just sat in the van and waited.

it wasn’t until this morning when my Mom was getting me out of bed when I kind of looked at her in disbelief and told her that I can’t believe that we did that what that woman did with her son for 12 years!!! My Mom and I are the same height (she’s a little shorter now) and that makes it a little easier, but it was definitely extremely difficult!

I saw this meme on Facebook last night after we got back from our haircut and ‘go time’ was over:

I am in a power chair now at the suggestion of my wheelchair tech at the time, Christie, and we are Facebook friends now.

Seeing that posted on the elevator hurt my soul and I said that on Facebook:

Screenshot

Seeing that last night, brought back all those memories of NOT being able to do things from a manual wheelchair And I thought about that man and his mom. But that used to be me and my Mom!!!

I fought getting a power chair for a long time and it was actually Christie who asked me as she was watching me roll around my house, “Aren’t you tired?!” I hadn’t really thought about it, but the answer was, “Yes. 100%!” I just didn’t want to lose my upper body strength by using a power chair.

Fast forward to 2016 and it’s extremely painful to have your meniscus torn and therefore I had no choice but to get into a power chair. And as for the upper body strength, yeah, it’s all gone now! But things are so much easier in power chair!!!

When my Mom got out the car and talked to that woman, and there was another woman outside as well who was also a caregiver, the woman helping her son thanked my Mom and the other woman and said people just walk by all the time. Oh man, I remember that as well!!!

“It’s So Darn Cute!” OR ‘Masterpiece’

Sean has always had crazy cowlicks and I attributed to his dad because I remember seeing a picture of his dad with a really big cowlick on the right side of his head when he was like 12 years old or something.

We moved out of my Parents’ house when Sean was three years old and my Mom would call me on the weekends to tell me that my Dad had not seen Sean all day and to come over and she will make us dinner. I loved receiving those calls all the time, I would never comb Sean’s hair when he was three years old. My mom would comment on it all the time!

She would ask me if I combed this child’s hair today?! I would just smile and shake my head and tell her that, “It’s so darn cute!” as she would comb his hair.

Now, let’s fast forward to me having a mass for 23 years. I can no longer have my hair be as long as it was for my whole life! I don’t even have the strength to wash my hair myself anymore. My Mom washes my hair and I put it up in a towel as I always have but when I am going to dry my hair, I dry it like a man because it is so short. I never thought I would say that in 1 million years!

I’m still getting used to having my hair so short especially because it curls now. I didn’t get my haircut in August because I got my wheelchair assessed. It needs a new actuator. Whatever that is?! My hair had two months of growth before I got it cut. It felt very strange growing in and I asked my Mom to take pictures of my hair before I get it cut. She took a few pictures:


My Mom snapped these pictures just before we got our haircut and as soon as I rolled into the spot to get my haircut, I looked at Christina and told her that, “I NEVER realized what a masterpiece she has done with my hair!” She kind of shook her head dismissively and told me that she has been cutting my hair for over 20 years. I told her that I never realized that I had so many cowlicks and she cuts it so my hair fall so nicely, even when it gets overgrown, like it did last month!!!

You KNOW that this song was playing in my head as I was telling her that my hair was a ‘masterpiece.’ This song definitely dates me, but it was back when I was still teaching and still part of the world. And by the way, Sean gets those cowlicks from me. And I get them from my Dad.

Cheat Code

At a ‘moment of clarity m’ today, probably realized this last night, I canceled my October 1 appointment. I was reviewing my MyChart for my upcoming appointment. And I saw that it is in Troy. Wait. What?!

I thought about this, and I would NEVER have made an appointment in Troy! Not at this point in my disease! But as I was thinking about it after I took my detox, and was praying before I took my Cinnamon this morning, Dr. Bansal had to changed it herself!!!

As I was listening to my first rosary and drinking my nutrition shake, I thought about the fact that I first wanted to have a Visual Field Test on July 3. But she rescheduled it for sometime in August and that didn’t work for so I rescheduled it again. But then here was the ‘moment of clarity,’ I am the one in charge of my own schedule, and they just accommodate me. I was stressed out for this October 1 appointment because it was early in the day but I no longer can have early appointments! I realized that I was not the one to make the appointment! I knew that I made an appointment for Detroit!

I called Dr. Bansal’s nurse today. Well, I called ophthalmology and wanted to reschedule my appointment with her and then I was transferred to her nurse. I laid it out to this woman, I can’t even remember her name, I told her that I live in Dearborn and I am homebound now. There is no way that I can go to Troy at 2:30!

She completely understood and I told her that I would have to reschedule for sometime in May because I already have appointments for January, February, March, I’m waiting on April for my dermatologist, so my eyes will have to be in May.

She told me that Dr. Bansal‘s schedule was not open for May yet and that is when I realized the cheat code! I need to call Dr. Rumbatla’s Office on October 1 to make my appointment for sometime in April. So of course Dr. Bansal’s may schedule is not open yet. I will have to call her on November 1!

The cheat code was realized once I finally accepted that I am that I am this infirmed now! It startles me that is not even October yet and I already have the first quarter of 2025 scheduled! But just liked scheduling classes in college, it makes sense to me and I can see it clearly. I just never thought my life would be like this!!!

Chanklas

I had a memory last night, and as my Mom was getting me into bed and putting my feet up, I told her about it. I asked the question, “Do you remember when I was like 10 and I was at Kroger with you and Jimmy and we heard that ‘Jennifer’ song that Abuela used to sing to me?!”

I remember walking down an aisle toward the milk or the meat or something in the back of the store, and we heard the song that my Abuela used to me ALL OF THE TIME!!!

My brother, Jimmy and I were singing it, and I was so shocked! At that point, my Abuela had been dead for a couple years, and I looked at my Mom, and I said, “I thought Abuela made that up!”

She would sing my name, and then just, ‘la la la la la la la la.’ This song came out in 1968 so of course I would NOT know it!

So, I asked my Mom that not thinking that she would search for the song on her phone. She remembers my Abuela that song to me too! But then she started playing the song. I was totally shocked at how quickly I began crying!!!

I could hear my Abuela singing that to me, smelled burning tortillas in her kitchen, and hear her Chanclas on the floor, and she shuffled around in the kitchen. She had really bad Bunions so her chanklas were just on half of her foot, and her heels hung out the back. I cried last night thinking about it!

I thought about that again this morning as we were getting ready for our ‘go time,’ and I started crying again! As I am writing this, I’m still hearing my Abuela and I’m thinking about the stale cookies in her cookie jar that we all would eat when she offered them, the Christmas candy from the Goodfellows, the fact that she liked the show ‘Alf’ and she would say to us all, “You old fart!”

I am going to start my Ginger Spice chapstick right after Thanksgiving, and that completely reminds me of her!!! I can clearly hear the shuffle of her Chanclas!!!

‘Enough Meat’

I remember reading somewhere when I was probably in fourth or fifth grade. I think it was a boys adventure story or something like that. That’s something I wouldn’t want to read; but for school, of course, I would read it! I think it was the same story where he bit his lip until he ‘tasted rust.’ I love that description for blood!

I liked this other description as well but I can’t remember what he was describing but it said something about there was ‘enough meat’ there and I don’t know what they were talking about but I’m borrowing that phrase for my blog post.

I have made the executive decision to just store the rest of my pomegranate chapstick until January. I originally was going to check it when there was more chapstick there, but I think I can use it to its fullest so I will just seal this bag and put it under my remote controls in the box on the table that sits by my chair:


There is more than one day here and on October 1, I have to change over to my Pumpkin Spice xchapstick. I’m liberal in applying my chapstick, but not THAT liberal!

Mouth Sores OR Stress

I have never had MS for this long, but I think I am coming to understand something now because I have a canker sore again!

I thought about it today because it hurts but this is just after I had two people with their hands in my mouth last week. But I think it’s a stress thing. That’s how my body is reacting to stress. This totally stinks because it hurts and I use the naturopathic remedy of thieves oil, and man, that’s intense!!! But, I think it’s numbing my mouth! So then it doesn’t hurt. My Mom is calling Yanna tomorrow to get the directions on what we should do. She was the one who suggested it the last time I had a canker sore.

My Mom says that I keep my mouth clean and she doesn’t understand what’s going on and I just told her that it is stress. That totally stinks, but that’s what it is!

“Nothing is the Same.”

A few nights ago, my Mom and I were talking about music and she couldn’t understand why I listen to sad music all the time. She told me that she likes, “Upbeat music.” I just looked at her and I said with the straight face, “I can’t handle that anymore.”

She looked at me when I said that, and she just kind of understood I thought. I think of music in the past tense now. I have a soundtrack of my life and what I was doing when the songs came out. But now I just live in my memories. I told my mom a few days ago as well, “Nothing is the same.”

Because REALLY nothing is the same anymore and I don’t think that I really was expecting this. This is an upbeat song that I did not hear until my 20s that I post on my blog every October but now that I am in my 40s and my disease has progressed this much, sadly, I don’t think I can handle it anymore…:

I didn’t watch Hocus Pocus today. I think I’ll watch it during the weekend…

Vanilla Maple

Today, I used my Vanilla Maple chapstick for the first time in a long time! I forgot how much I really liked this flavor! I saw once on Amazon that they had a four pack like they have for my Cucumber Mint. But I have more Fall chapstick tubes to go through until I think about going completely Vanilla Maple. Maybe next year or the year after I think…

“My Least Favorite”

I called Sean today on his way home from work. I asked him how his workday was and he asked me how things were where I’m at. I told him that I am using my Salted Caramel chapstick today. Then I promptly told him that it is my least favorite. He laughed at that and said that I am just forcing myself to suffer through this fall chapstick. Then I started to laugh, but I told him that this is the first time this Fall that I’ve used it and somehow it is a little bit ‘sweeter’ so you know what song popped into my head right then?!:

Size 7

I was recalling Sean’s Halloween costume when he was an “Army guy.” I think he was 4 and that was the first Halloween without my Dad.

I remembered this specifically because we went to Harry’s Army surplus to buy actual fatigues for him. We went in and I asked the man at the counter, (really, it was a boy) and he showed me where the kids fatigues were. I picked out Sean size and then I asked him about hats.

He pointed me to the kids hats, and I shook my head and told him that I needed the adult hats. He looked at me kind of funny and told me where they were and we walked over there and I asked him for a size 7.

We had stopped walking, and he was looking through the hats he had in his hand for a size 7. He pulled one that was a size 7 out of the number of hats he had in his hand. He’s jokingly bloused it out and put it on Sean‘s head.

I still remember the surprise on that kid’s face when he saw that it fit Sean perfectly. I told him that I used to work at a hat store and I figured that was his size. I was recalling that story to my Mom the other day.