Category: A Bit Of Randomness

I made my June appointment last week so now I have 15 doctors. I say that I’ve have 15 doctors, but there are just a few I see every year.

I vaguely remember when I used to just go to my neurologist once a year. I chose to go in August because it was before I went back to school. I see see so many more doctors now. I’m really not sure how I feel about that.

Told Sean the other day that my dance card is full. I have no more availability to see doctors. 25 years in, I understand that I can only see one doctor a day. I schedule doctor appointments 3 to 6 months in advance.

I say that I have 15 doctors but I seriously only have 1. I will see him in July. I am talking about my naturopath. I just called his office on Monday. I called because I was experiencing problems with my vision. I had just changed a supplement, rather, I ran out of it, and we are going to discontinue it.

I called Erin yesterday and told her that my vision is being affected and I wasn’t sure what to do. She talks to Dr. Clark and suggested a supplement that I am already on, so then she suggested another one. She is going to put it into my order on the 18th when I pay for it when I get paid.

I will take it as directed and then when I see him, he will dose me properly. I will see my optometrist in August so hopefully it will do something good for my eyes. Last time I saw him was in December. The only available month this year was in July.

I got my first power chair in June 2018? Maybe July? I got my second power chair December 2023. Or 2024? My power chair works great!!! I have gotten used to being in it.

Well, that is until it’s not. I’m having a problem with my wheelchair. The joystick is not working. We discovered that at about 4:32 this afternoon. My Mom called a tech at NSM (national seating and Mobility) and he FaceTimed us. He troubleshot, and I thought that I my chair will be working. It is not.

I cannot give my chair any commands so I am sitting at a 90° angle and I cannot put my legs up or tilt my back backward. She also called Dave at RIM and he was on vacation but he should be in tomorrow. I’m hoping my Mom can get this all figured out before I get up because my body really hurts!

Sean is coming over tonight to help me get ready for and into bed. I hope it all gets figured out tomorrow because that’s my birthday!!! I will be 44.

So, my Mom is the best caregiver in the world. She got on it right away! I woke up to the best birthday present in the world!!!

My Mom called Ray at NSM and told him about my chair. He told her that he had some parts from other chairs in ‘the graveyard,’ but he’s not available until ‘Saint Paddy‘s day.’

My Mom jumped at that option and then he told her it’s at 9 o’clock in the morning and she was okay with that as well! She also called Creative Mobility group and secured a van for that day as well.

We learned last night that I can use my custom manual chair. I told my Mom that option but she was against it until Sean got here and we tried it. I can sit comfortably in that chair because it was made for me!

It looks like I will be rocking my custom manual chair until St. Patrick’s Day. But I must tell you, that option is not without its flaws!!!!!!!!!

For example, my knees (both of them) are screaming as I sit in my manual chair. They’re both bent at a 90° angle where usually I have them out stretched about 98% of the time. This is due to my pressure sores that compromised the skin on both of my heels from April to November of 2022.

To alleviate some of that pain, I place both of the palms of my hands on my wheels and lift up. Doing that, is making my right hand indented and red. My Mom was concerned, but I told her that it wasn’t going to happen forever. Maybe tomorrow I will take a picture of them.

Sean came over again tonight to put me into bed which makes things so much easier for my Mom and me! She asked him if he was going to come over again tonight, “Of course! It’s the Grand Chawhee’s birthday!

I really don’t like that Facebook did not allow me to comment on everyone’s birthday witches! I was able to see a few and thank you all for all of them!!! I will have to write a message on Facebook as well!!!

I don’t love that this is happening, but I am offering my pain up! You know, treasures in heaven all that jazz… but, it will be thus until St. Patrick’s Day!

I did not think this through very well and it’s going to be a long time until St. Patrick’s Day!!!

The second day of sitting with my legs bent at 90° is proving to be horrible! My legs feel like they weigh 500 pounds each! I can’t believe that I did this before 2018!!!

Sean came by and he reminded me of when I was using a manual chair all the time and how my triceps were huge back then! They are NOT now.

I did not think this through until it started to hurt. My right shoulder feels tweaked, and I didn’t understand why at first until I used my hands to lift myself off of my chair. I pressed my right hand more because my knee is killing me after two surgeries!!!

I took a picture of both of my hands, but it’s not a very good one, but you can see the redness on my right hand a bit:

My shoulder is feeling better, so much so that I hosted myself up in bed this morning when I woke up. I am just not allowed to touch the brakes on my wheelchair at all nor wheel myself in the chair! Alright Jen, that’s no longer your role anymore! I’m in-firmed now…

I got my chair back today and it’s working wonderfully. The biggest thing for me right now is that I have never realized how far I have fallen. Meaning, I didn’t realize how unable I am until right now.

I think that I got my custom manual chair in 2015 or 16? I don’t even know, but I was working then but I was not driving. When I got it, it fit me like a glove! I would roll up and down the hallways at my school numerous times a day!

My shoulder got sore wheeling from my living room to my bedroom twice and when I hoisted up on my wheels to try to adjust myself a little better, that hurt my arm even more!

So, it has been a decade since I got my custom manual chair originally but then in 2018, I got a power chair. My body stopped remembering what it felt like sitting in a manual chair even though it was customized to me!

I’ve never really thought about how much worse off my body is now, until now!!! This realization has thrown me for a loop to say the least! But, I’m getting a haircut tomorrow and I’m going to the doctor next week. That will be it for March.

Sean and I watched the Gonzaga game today. I love saying that name since like 2016. I was excited for a good game. I love March Madness but I’m not super invested. I check scores and will occasionally catch a game.

I buy a T-shirt for whomever knocks Michigan State out of the tournament. I know that it’s completely petty and I have a niece and a nephew who graduated from Michigan State and another niece is going currently but I remember my masters degree ceremony. This speaker said that I will bleed blue forever!

A woman opened the door for me when I was at Dr. Clark’s office and she told me that she will open the door even though I’m a tiger. She was referring to my Auburn shirt that I was wearing. I told her that I went to Michigan and the only reason I am wearing the shirt is because they knocked to Michigan State out of the tournament. They also knocked Michigan out, but I think the pettiness is funny.

Well, a curse?! Maybe… I’m thinking about that now. Gonzaga lost so they are out of the tournament so maybe next year I can get the T-shirt from them?

My feet are a thing now. They were becoming a thing for a while, but my six days of sitting in my manual chair was a little rough on them!!! It was like two or three days in when I thought about it because my feet were in my shoes all day long bent at a 90° angle!!!

My Mom was really concerned, but I knew I could make it, but it would be a little rough but here is the aftermath and I will raise my feet up so they aren’t on anything:

This picture is better light but look at my ankles?!!!!:

I am not seeing the vascular surgeon until June. I have a teeth cleaning in April, my neural ophthalmologist in May, and then I will see about my feet. I hope this doctor can offer something to help? Or maybe, #ItJustSucksToSuck!!! and #MSsucksAfterTwentyFiveYears!!! 😒😒😒…