Month: March 2026

Surprised!

So get this. My wheelchair is losing power and all I am doing is sitting in my house in my living room. My Mom called Ray at NSM yesterday to talk getting it fixed. He needed a work order signed by my PCP to get things started.

In talking with Ray, he told my Mom it would take about a month to get started. That doesn’t work for me because I’m getting my haircut on April 15th and my teeth cleaned on April 16th.

I messaged my PCP about it last night. I got a response when I woke up. My Mom started talking with Ray at the same time. He told my mom that he is just waiting on Billing to write up the order. She asked if there’s anything that we need to do and he told her that we didn’t.

I will message her tonight and let her know that he is going to fax her the work order and she just needs to sign it.

I’m a bit surprised about this whole thing! I can’t believe how it’s all working out! When Ray gets the signature, and then the supplies (which come from California) then, my Mom will take my power chair back to him to get serviced.

I had to sit in my custom manual chair for that and when I had to sit in it for six days at the beginning of the month, I realized that my custom manual chair DOES NOT work for me anymore. I can’t get out of my head how much I zipped around CCA in it constantly! I had the hardest time just sitting in the chair from March 11 to the 17th.

At least this time, it will only be for one day. I really can’t believe that my entire life is really MS?!!!! But it is.

CRAZY THINGS!!!

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!!!

I’m Sorry Sam Jackson

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:

Concerning

At my appointment on Tuesday, Dr. Chamas gave me a referral to have an ultrasound on my limbs before I go to the vascular surgeon in June.

I thought about that today and I forgot about it until 4:18 so I called Henry Ford and made an appointment for my ultrasound on May 22. That is before my appointment with the vascular surgeon.

My hands and feet seem to be getting cold at night and it’s a little concerning. Actually, A LOT concerning!!!


Mouthguard

I saw this on March 2 but I did not read the article. I wanted to save it because I sleep on my back in my Tempur-pedic bed and do not move anymore. My Mom does lots of preparation to assure that my feet are not on the bed.

I had to add another step in the morning probably about six months ago. After I washed my hands, I use a washcloth to wipe my mouth. I had no idea why I was doing this, but when I saw this, I guess I should have read the article. I am drooling in my sleep and I don’t even understand how because I don’t move from laying on my back.

I couldn’t crop the picture so that was just my screenshot from March 2. I am so grateful that I found that picture though because this because I have been thinking about it recently.

But late this morning, when I awakened and sat up in my bed, it felt like I was punched in my face, the left side of my jaw. I sat there, and I just screamed. It sounded like a crazy moan or something, but I did it like three or four times.

My Mom was on the phone with the medical supplies company for my tens unit and I just waited.

I must’ve been clenching my teeth something fierce last night because my jaw was killing me!!!

When I told my Mom about it this morning, she told me I should talk to Dr. Fox. I told her that he’s retired and I just have to deal with it. Because that’s what I have to do. I’m so grateful for my mouthguard! I have been wearing it since 2011.

Wait. What?!!!!

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.