I got my haircut and my eyebrows waxed today. I was sluggish today. Christina asked how I was and I told her that it has been cold for too long! I thought it was going to be spring but now it’s back to being cold and that hurts.
She told me to hold on and that soon it will be spring but then I reminded her that I get super warm and that’s not good either! I really am a reptile! We heard this song and my mom said, “My favorite!”:
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.
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?! 😒😒😒…
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…
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!
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:
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 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.
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.