Month: May 2026

So, I was drinking my second shake. I called my Mom, but she was talking to Ray so I texted her and then she called me back. It is the motor and the two big wheels on my chair. It will take three weeks for the parts to come in.

He told my Mom that the chair is of shutting down. He said that because my Mom asked. I was afraid of that as well!

As for sitting in my manual chair, it’s a little rough, but I have adapted. I am slouched down on purpose and my right knee is burning. Both of my heels feel like they’re stressed. My Mom really doesn’t like that, but I told her. It’s uncomfortable to sit this long with my shoes on, the skin is stressed, but it’s not broken so it’s OK.

She is headed back to me after she picks up a burger from one of the bars out there. I will get my haircut after all today.

it’s ‘go time’ tomorrow and my alarms are set for pretty early because my Mom is taking my wheelchair in to get looked at because it’s still shaky.

How ‘bout – I did not even think about the fact that I am going to be sitting in my manual chair while she does this.

That kind of hurts and I don’t want to think about the disease progression that goes with it but I’m handling it tomorrow until my shaky chair gets fixed. I hope it’s a quick fix. I told my Mom that I will forgo my haircut if need be to get that done. If she gets back in time, I will still do it but I’m okay if we don’t.

I get a haircut every month so it’s no big deal to let it slide until June. But it’s concerns me that my chair doesn’t feel right. I have been living in it since 2018. It scares me that I have been having problems with it recently.

I called my Speech Pathologist today. Well, I texted her first and she told me to call her secretary so she could access my file. I called her and left a message. I saw Meira in October of 2021.

As it turns out, she works out of West Bloomfield now and not Dearborn. She is pregnant! I was so happy to hear that and she’s due on July 1. She is having a boy baby! I told her that I absolutely love that! After I congratulated her, I said, “Oh, that’s warm!” She agreed.

She told me about having MS and the progression of things and the things that could happen to me. She wants to arrange a virtual swallow test with me. She knows that I’m homebound so it’s easier that she sees the me swallow before I go to see her in West Bloomfield.

So, before we hung up, she told me to message my doctor and request a virtual Pathology swallow test. She told me that I could either message my neurologist or my PCP, whomever will answer more quickly. I messaged Dr. Chamas today. She is hoping to get me in quickly, but if she is already on maternity leave, she will hand me over to one of her colleagues who will keep her abreast of my situation.

I really like that it’s not emergent yet. She told me if I was choking that I should go to the emergency room, but I told her that I’m not there yet. That’s why she wants to do the virtual swallow test. She told me that it just sounds like a ‘hesitation’ at this point. I agreed with her.

This is all something that I never ever anticipated! But things are starting now just as the weather is getting warmer, and that reminds me of how unbearable at all was! I am not looking forward to this at all! Any of it!

But I remember, I think it was in 2021 and I had an appointment with a Dr. T. before I started to see Dr. Chamas. She had a really long foreign lastname. I showed her how I stretch my arms daily and she was surprised! I told her that I know that I will eventually lose this ability. She looked at me and said, “Maybe not!”

But something tells me the progression of my speech is NOT the same as stretching my arms. All of this is too much!!!

Yesterday, it got to 81° and I gasped because it felt different. But then today happened. Sean took my Mom to get her mosquito plants and I just sat in the house kind of numb because I had forgotten this and I’m not looking forward to 90° weather.

But, I’m looking at my weather app and it says that it’s going to be 68° on Wednesday when I leave the house. This will do terrible things to my body! It already is!

I saw my reflection on my phone a couple weeks ago and my face does not look good. I do not look like I’m having a good time. Well, I absolutely am not.

I didn’t even put my contacts in today. I’m listening to the Pistons and it reminds you of Sean being in high school. I wish they were winning right now.

I had trouble swallowing today while I was eating my dinner. It wouldn’t be so concerning if I didn’t have difficulty yesterday swallowing my dinner. Maybe it was my lunch. Either way, that concerns me. I’m concerned.

The summer of 2019 was when I decided that, “Eating is no longer easy or enjoyable.” I think it was October 2023 when I started talking to a nutritionist.

I was losing weight and I couldn’t understand why. Her name was Sarah and we talked about nutrition shakes. I told her that I am, ‘lactose not a good idea’ so she told me about plant based nutrition shakes.

I drink my first meal of the day and have overnight oats infused with protein, saltine crackers (those just melt in my mouth annd then I swallow) and chicken stovetop stuffing. I have turkey stuffing in the fall and winter but it’s chicken now. I have eggs on Tuesday, Thursday, and Saturday. That makes me feel better before I pillage.

I worked with Sarah to figure out what nutrition I needed because I do not leave my chair. She told me then that if I have too much protein, I will just gain weight. It is a complicated dance, but it’s really not because I don’t mind eating what I eat.

I had changed what I ate to make things easier, but the fact that I am having difficulties swallowing, concerns me. I’m concerned. It’s not emergent yet and I have my Yeti right next to me at all times. This just concerns me. It progressive and I’m nervous about that a little bit.

We do go to the Cider Mill once a year so I get cider and donuts, my aunt Lola sends her Christmas cookies for Christmas and my birthday, and my sister-in-law provides us with sides on Thanksgiving and Easter. I do not feel like I am missing out at all.

I never thought that eating what I eat would be difficult at all. This is concerning. I am concerned.

my mom told me about this movie yesterday and today I got an email from Netflix so I watched it. It’s cute!:

At my dentist appointment in April, Sarah, our hygienist decided to take us both at the same time. She did my teeth first in the office that Sean used to get his teeth done and my Mom to the room I usually would go to with Kristen.

I waited while Sarah did my Mom’s teeth and then the dentist was going to come in into both of our rooms.

This is the only dentist office that I have known for my entire life! The chairs are no longer situated how they were in the rooms, but I don’t sit in them anyway. I just get my teeth cleaned in my power chair.

They have weird sounding music now! I think it’s just because I’m old! I don’t even remember the dentist’s name. It’s different now because it’s a corporation. I’m not sure that I will ever see her again. She had on those magnifying glasses so I didn’t even see her really.

It was endearing to me when Dr. Fox did it because I hand known him for my whole life! This just feels impersonal. After listening to music that I did not like, I did hear an Adele song and a Summit Place Kia commercial:

I’ve heard that song for my entire life and it was nice that some things are still the same. When the dentist came in, I asked her which tooth my cap is on. She told me that it was 14 then she said, “Wait” and asked me to open my mouth again and said that it was 14.

I think I was 16 when I cracked my tooth opening a water bottle. When I worked, I would rest my tongue on that cap. It was smooth. I did that when I was grading papers or balancing my checkbook. I had forgotten which tooth it was because I hadn’t rested my tongue on it in a long time so I just wanted to double check.

Something happened this morning and it’s the first time it has happened for 25 years. It happened when I woke up and sat up just before I was going to get out of bed and just before I got ready to complete our routine.

This disease progression has really been smacking me in my face for a while! It’s a lot!

As I was getting ready to get out of bed, I just thought about how difficult it was going to be, and I covered my face with my hands starting to cry a little bit. But then when I had to transfer out of my chair, one more time, I started to cry again but I couldn’t cover my face because my arms were around my Mom. It hurts.

It feels like a lot today. I don’t know what’s going to happen before I transfer again to go to bed. I’ll let you know if I cry or not. This is really strange to feel like a lot. It keeps smacking me in my face!!!