Category: Uncategorized

Upon waking this morning, my hands were NOT numb. I was relieved to see that, and I began stretching my arms outward. In doing so, my fingers, my pinkies on both of my hands, began to feel numb. Kind of like it used to be when I was in college when I put my chin to my chest. It’s all changing!!!

Once I was seated in my chair, after I stretched my hands and my arms, I began hugging myself just like Diane has me do at RIM when I am getting my chair updated.

I really do not like how not good this is getting for me. But I’m on it. I have a vascular surgery ultrasound for my lower limbs on May 22. I see the vascular surgeon on June 26.

All of this is never ending and stuff just keeps coming! This is A LOT!!!

Today, when I got a piece of gum for the first time, it tasted like winter fresh. Like high school! I think I’m so nostalgic about Mr. Flint watching my feet. That’s where I’m at right now.

it tasted good so I went with that. I have been showing the blue five gum since 2014?! It was at Barwis. Adam gave me a piece because I had a bad taste in my mouth.

I’m locked in for Easter and I have not reneged on all the things I’m doing and that feels really good! Maybe it’s the fifth time through the Bible? I’m reading the catechism as well.

Well, today, I did what I said I was going to do. But, this morning my Mom came to my room and told me that she spoke with Ray at NSM. She was telling me something about work orders and the battery and I told her that I’ll talk to her after I drink my shake.

So, we talked about the message that I was going to send to Dr. Chamas. I thought about that today as I prayed, and my Mom went grocery shopping.

I thought that I would just call vascular surgery tomorrow because I was thinking about what I was going to say to my doctor about my wheelchair. I finished my prayers and I was able to call vascular surgery at about 4:15.

I am not supposed to wear my compression for my ultrasound. I didn’t think I was, but it is good to be sure. I just messaged Dr. Chamas on MyChart. She is. really good at answering me right away.

I’m happy that I did what I said I was going to do today because the rest of it was the same. I do the same thing every day. I just exist.

I asked my Mom to turn off the heat because it was a little bit warm this evening. Maybe tomorrow will be an AC day? But I’m not sure because there were also be 4° weather coming up as well. This is doing CRAZY THINGS to my body!!!

Yesterday morning, my jaw only hurt about a five out of 10. The day before, it was a 10 out of 10. Maybe a 12 out of 10.

But last night, as I was trying to fall to sleep, my feet were killing me!!! Sleep escaped me for a long while but eventually, I was able to fall to sleep.

I will call the vascular surgery clinic tomorrow to ask the preparation for my ultrasound. Apparently it’s only for my legs.

I watched both of the Elite Eight games with Sean today. I’m happy that Michigan is still in it. I saw that Capital one Jennifer Garner, same all Jackson, and Charles Barkley March Madness commercial three times today.

I still dig it:

i’m totally cool with being old:

So, I had my appointment yesterday with my internist. I was the last person to get to the lab and they locked the gate before my blood was drawn. The nurse showed us to the side door to leave because the gate was locked.

We went upstairs to the suite that is my doctor’s and we waited. As we started talking, I asked her about a shingles shot and she told me that I have to be 50 years old. She said, “Unless you are immunocompromised.”

Wait. What?!!!!

She said that since I’m not on medication that blocks my immune system. I don’t need it.

Wait. What?!!!!

I was diagnosed 25 years ago with Multiple Sclerosis and with that diagnosis, I wish that I understood that my body was not normal then. But man, does my body feel NOT normal now?!

Regardless of my choice of medical treatment my immune system is attacking my nervous system so of course I am immunocompromised!!!

After hearing that, I knew that I was just going to go to Meijer because I had called earlier and they said that I am eligible but I should call my insurance to make sure they will pay for it. My Mom did it and they do. We went to the pharmacy and my Mom started filling out the paperwork for me to get the shot.

She was reading the form out loud as she did it, she said, “You are 43 years old” I interjected and told her that I was 44. She gave me a funny look and asked me if I had a birthday? I told her, “Yes. 12 days ago.” We laughed just as the pharmacist came out and told us to stop filling the paperwork out because the insurance was not going to cover it

Wait. What?!!!!

He handed some paperwork to my Mom and phone numbers for her to call to discuss this.

At my appointment, Dr. Chamas gave me a referral to get some test done to test my blood flow in my limbs before my appointment vascular surgeon.

Looks like I will have to make another appointment. Either in April or May because the vascular surgeon is in June.

I have a doctor’s appointment tomorrow so it’s the eve of ‘go time’ and I am waking up early. It’s a physical for me. I get one every six months.That’s it for the month of March.

The night before last was the first time I slept in since the 11th because my chair was broken. I spent yesterday not feeling well and I don’t feel so much better today but last night, my Mom put my socks on inside out as I was going to sleep.

I told her to do that because it was kind of hurting putting them on my feet but I need to wear thicker socks when I go to sleep; it calms my nerves.

As my Mom was turning them inside out, she said, “Finding Forrester.” I kind of smerked and thought of a specific scene. I should rewatch that movie soon. Here is the clip:

So this has been going on for two days now and this was my feet this afternoon before I put on my compression socks:

It’s a little rough getting up so early in the morning but my Mom called me at 11:17 a.m. She told me, “You’re back in business! Your wheelchair is working!”

I exclaimed, “Thank God! Praise the Lord!” I was just thinking, I think it was the hydraulics on my chair, but that happened on March 11. I have been in my manual chair since then.

I am grateful that I still have a manual chair! I got it when I was still working so my insurance paid for it. I keep thinking I have been in my my power chair for eight years but now it is nine because it’s 2026.

I want to tell you that it has been so difficult to be sitting in it right now!!! I have had both of my legs extended for the most part since 2018. Definitely since April 2022. That’s when my pressure sores started! Sitting in this manual chair that does not allow my legs to extend has been so trying! I am praying so much, but I can’t help but think this was a great way to start off my 44th year?!

I absolutely know that you cannot plan for problems with your wheelchair! I’ve known that in varying degrees for the past 25 years!!! I must tell you that it kind of hurts that all of this happened at my birthday!

I had an inkling this year. That ‘birthday month’ wasn’t going to be a thing anymore and I definitely don’t want think about that now because this was an terrible birthday, but I can’t wait for my Mom to get back so I can get back into my power chair! That’s a GREAT birthday present!!!

So, I thought that I could ‘do anything for five days.’ Apparently NOT!!!

Today is day six and my chair is not getting fixed until tomorrow. Hopefully it will get fixed so I can have my appointments. I thought that I could handle it but today I feel it in my face and my knees are screaming and my lower back really hurts!!!

I have to get up really early tomorrow because my Mom should be out in Troy for a 9 o’clock appointment. She has already told me that she will call me before she leaves to let me know if my chair is fixed or not. If it’s not, I will cancel my appointment for my haircut on the 18th. I HAVE TO GO to my physical so we’ll just see about that!!!

I am going to sleep hopefully tonight! I’m hopeful that my chair will be okay and I can start using it again because this is very strange because it is showing me how far my disease has progressed since 2018?! 😒😒😒…

So, when I woke up to my alarm today (because I have to wake up to alarms now because I need help and Sean works) I tried to sit up in bed as I normally do when my bed is getting out of zero gravity. Well, that tweak went from a tweak to excruciating pain, and I stopped trying to push myself up in my bed.

That’s what I get though, it’s been eight years since I pushed myself in a wheelchair! I can’t do that anymore!!! My Mom told me if that if I work at it, maybe it’ll come back but then I said, “No. It’s gone.” She agreed. That stinks!