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.
Last night, as I was sitting in my bed before my Mom took my chair to be plugged in, my cheeks felt crazy!!! That was a feeling that I had never experienced before, and it scared me.
When my Mom got to my room from plugging my chair in, I told her about it and she put the cream on my face as if I was wearing Calvin Johnson eye black:
I knew that my Mom would not get that reference so I didn’t even say it and I’ll wait until I speak with Sean because he completely knows that reference!!! We loved watching him every Sunday, and Sean was young enough to watch it WITH me!!!
It really shows my age because I had a hard time finding pictures of him with his eye black on. I remember when that was so new and cutting edge!!! But now he is just a businessman. But that’s how I wore my cream last night because my face felt crazy!
I told my Mom that I may need to change the cream that I am putting on my face because the weather is changing. She told me that Mrs. Hutcherson wears it all year and I told her that my skin is different.
I think that is a statement that my mom really isn’t really prepared to handle just yet. It scares the crap out of me, but it seems to be happening all the time now!!!
This afternoon when she woke me up, she asked me how my face felt. Given the fact that it is daylight savings time, and that makes me feel terrible, I just said, “I’m not okay.” I don’t know if it is just my age or where I’m from but I totally thought of Eminem when I said that and this song:
I reposted yesterday about my doctor telling me that I had a calculus.
That was last year in January. In March, I had urogram (where did she put hot IV fluid in my body to take pictures of my organs) that was insane! After that, it led to me getting a different doctor and I had surgery in August.
Post op told me to make another appointment in six months, hence my February appointment. I have to remember about it because it was so strange and the very first time I ever had an appointment like this! I was a bit scared!
My Mom stayed with me in the entire time and helped the nurses who were not equipped in dealing with such an infirmed person.
Dr. K wanted to see how my calculus was doing. She had blasted it all last August. But my Mom saw a stone. Dr. K was not concerned by it and she told me to make an appointment for six months (which Jason made for me) and based on that one, maybe I will just have to go annually.
I liked the sound of that! I was thinking about it because I know I had shared this song, but I couldn’t find it. I had shared it before after I found out that I had a calculus. I wanted to hear that song so I watched the video. Man, Chris Cornell looks so rough. And it’s kind of haunting that he has committed suicide since this video. Here it is:
Sean told me a while back that he saw a video on TikTok and it had a song playing in the background. He couldn’t understand why that was making. His heart feel funny until he realized that he remembered that song from From sitting in the backseat of my Malibu.
I listened to the Audioslave CD for one summer. Sean was either five or six. I listened to that CD on loop for that entire summer Like a Stone was my favorite song.
Makes me think of that Diet Coke commercial but I don’t drink Diet Coke and I no longer drink pop at all. But I guess its kind of true:
The following blog post is my Case in Point regarding my life:
Tuesday night, I messaged my doctor a few things before my appointment at the end of the month. On Wednesday, I called in my supplements for the month and I made an appointment for June to see a vascular surgeon to talk about my neuropathy and why my feet are so cold.
Thursday, I needed to update my payment plan for the hospital. And today, on Friday, I readied my pill bottles to pillage tomorrow:
Seeing those bottles, completely makes sense for me and it will take me a little over an hour to distribute them into my pillbox. All of these examples prove that my ENTIRE life is MS. I’m STILL currently trying to get used to it in real time.
At least I know what to expect in this regard. I used to tell Sean, “Hashtag HMS.” I was such a potty mouth?! I am working on that! But I guess this is what I do now…
I just realized that my birthday is on Thursday. That’s my favorite day of the week! But, as my birthday falls most of the time, during Lent. I ordered Easter candy that I will have for myself after Easter. That’s when I will celebrate my birthday as well.
