Author: Jen Rios

So, get this: my Power chair does not recline again. I am grateful that it still moves forward and backward. I am seated in my chair with my back as straight as an arrow, which does not feel very good!!!

But, it’s the holiday weekend and parts wouldn’t come for weeks anyway?! I keep telling my Mom that all of this is, “a test.” I have to pass it. I just have to endure. At least it’s still moves?! I have a doctor appointment next week. It’s with my neural ophthalmologist so, it is pretty important especially given the state of my eyes right now.

Late night pillaging again. I just finished. ‘Splain ya tomorrow.

I went to my ultrasound today. It was a strange nostalgic trip. I’ve spent my entire childhood there going to the doctor or my brothers were going to the doctor and I went with them.

It’s the same, but it’s different. We went to our appointment and I was able to stay in my chair while she did the ultrasound. I already have results but I don’t know how to read them. I think that I will stop trying until June 26. That’s when I talk to the doctor. I go back to Fairlane so I’m comfortable with that.

We left through the back door and I saw the dialysis center and I cried a little bit. We passed the school of education and UM and I remember that too.

We had to check in at the front lobby. That’s a first! The young guy who checked us in about five minutes before my appointment told us that we were lucky because the elevator is working now. It was not working for months?!

I had a flashback from a couple years ago maybe like three when my Mom and I went for an MRI on my knee? It was in the basement and the elevator was broken then. I had paid for a van rental but I think we did something else so it wasn’t wasted. I rescheduled the appointment.

I can’t read the results right now, but I think I have to go every year now. That stinks! Rema was my tech and she recommended watching One Tree Hill. I remember that I watched for a while when Sean was in high school. I watched four episodes today. Hopefully, I will see her when I go in June to talk to the doctor and I’ll tell her how far I have gotten.

Maybe I will be lucky and will finish The whole show! I’m really bad at that but hopefully; this will be different. And that MRI that I was supposed to get, that was probably eight years ago. That’s crazy that my knee has THIS been hurt that long!

My alarms are set for tomorrow and I’m a little bit nervous because I just found out that my ultrasound is going to be an hour long?!

I called them on Wednesday when my Mom was taking my chair in and I am not supposed to wear my compression socks but I asked if I can wear regular socks because my feet won’t be cold otherwise.

Caitlin looked at the orders for my ultrasound, and she said to bring them just in case.

I just stayed in my power chair for x-rays on my knee. I’m wondering what’s going to happen here because my chair is a lot more comfortable than an exam table!

Comfort is my top priority now. 25 years in, it’s rough and it hurts!

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.