I’m still sitting in my broken chair and my ankles are still swollen! I don’t think it hurts so much and my heels are stressed for sure! I told my Mom that the skin is not going to break down because I sleep in my bed for 6 or 7 hours with no shoes on. My heels have a little bit of time to heal. I big toes are looking better finally. I go on the 26th to talk to the doctor.
I don’t leave the house until the 17th so currently, I am just existing. I watched two and a half movies today.
I had just finished my tour with my 3-Peat of movies from my childhood: Labyrinth, Seven Brides for Seven Brothers, and Willy Wonka and the Chocolate Factory.
Today I saw a new movie that was recommended to me:
and then Sean came by and we watched Book of Eli. My body hurts and this is uncomfortable.
I think it was Tuesday when I woke up with cankles. It’s the heat. It’s helpful that I have my compression socks on, but they are still fat. They are that way because I cannot extend them. Doesn’t feel great.
Yesterday, I was loving watching Labyrinth and it took my mind off of my aching body and I was taking back to childhood. I wanted to have a continuation of that feeling today so I was going to watch Willy Wonka, and the Chocolate Factory but I do not own it yet. So instead, I watched Seven Brides for Seven Brothers.
It had the same effect! That is another movie that me and my cousinT Shannon watched 1 million times:
We loved singing this song so much! I never got married and she did not get married in June but that’s how life works out sometimes. I think I might watch Willy Wonka tomorrow..
I saw meme a couple days ago. It made me think about this movie so I watched it today. Labyrinth.
Hearing the first notes of the opening song took me back to Asbury Park in Detroit and I am my aunt Linda‘s basement with my cousinT Shannon. I watched this movie with such a nostalgia today and I told my Mom about wanting to be a bride who looked exactly like Sarah at the masquerade ball
Special effects are not that great and the owl in the beginning doesn’t look that cool but I remember it being the best and I thought that with fire monsters who pull off their heads.
I loved every second of this movie and I do not even care about the weird sexual tension between David Bowie and Jennifer Connolly. I thought that David Bowie was so hot! Still do and he’s dead.
My Mom talked to Ray from NSM today, she left a message yesterday. Here is the deal: The order for my two motors has gone out of ‘ordering’ to ‘funding.’ It’s on step three of six. My second order for my joystick, is on step two of six. I have a lot of questions about that one because I don’t know the exact price yet. They concerns me a little bit, but I have a great group behind me!
Last Thursday, I swallowed my pride and put out a GoFundMe account a little bit after midnight. I was just telling my friend that I didn’t even draft it. Me, the writer?! I just told him that it’s too close to me and much too sad for me.
I had AI draft it which is something I’m really against and I feel that it will end up being the death of us.
Well, I changed chapstick to my summer chapstick, even though I have NOT smelled spring in the air. I feel it. Even though I am not leaving the June 17, It didn’t feel right last night. I rectified it and all is well! #SimplePleasures
Last night, my right heel was hurting me a lot!!! That is a little bit scary because I can NEVER R forget my pressure sores from April to November 2022. That was a year that I started reading the Bible.
My Mom still has pictures of them in her phone and every now and then she will show me one and it unnerves me to my core because I will NEVER forget the pain that I felt for so long!
My Mom wants to do something to keep my feet off the pedals, but I keep telling her that that’s not the thing now. I just have to endure! She takes pictures of my heels at night and in the morning.
Here are the pictures she took this morning when my heels did not hurt because I had been barefoot all night. Just with my socks on. I tell her they will be stressed and they hurt, but I don’t think the skin is going to break! I split my time sleepy in my bed and sitting in my chair. That is the extent of my life.
In these pictures, my heels did NOT hurt and right now they feel a little bit stressed:
So, about my ophthalmology appointment. It was the most difficult appointment that I have had in 25 years! The appointment was only for two hours and I’ve had four hour appointments pertaining to my eyes before. This one just was difficult.
I have already written that the nurse who brought us back had bright orange hair. I wanted to call her ‘Tange’ that completely shows my age!!! I didn’t because she probably doesn’t even know who those actors are! I was completely thinking of Kate Winslet and Jim Carrey in Eternal Sunshine.
I think this scene was when he called her ‘Tange?’:
I got called back to a room with a bunch of monitors and that machine where you put your face in it. This woman started with my right eye, which is my ‘poop eye,’ and it was very difficult to see anything! It was a little bit frustrating, and the nurse with the orange hair held my head right up to so then she could take pictures of my eyes.
Then she moved over to my left eye after about 10 minutes maybe? I could see everything clearly, and I announced that this is, “My strong eye!”
We finished and changed waiting rooms. We waited to get seated in the handicapped accessible room because it’s like that for me. Barb was her nurse and she has been a nurse for 37 years. She knew Dr. Skarf. She told us that he trained Dr. Bansal. She tested my eyes a little bit as well. I could see ALL of the finger she was holding up on both sides of her head!
I was tired after this, and I dozed just as Dr.Bansal was coming in. I saw her walking in, and I smiled behind my mask. She shook my hand, and she has a terrible handshake as she turned and greeted my Mom. She did all of the tests and looked at papers. I don’t think that she really worked on the monitors this time. She told me that I can come back in two years. That was great for me to hear! She told me that my eyes were stable and she’ll see me in two years.
When we were finished with our appointment, she looked at my Mom and me and told us that we were refreshing. That was really nice to hear and she said that she sees people here and they’re usually sad or grumpy. She commented on the fact that my Mom and I were smiling and were pleasant with each other. That’s a win for us!!!
I was surprised at how tired I was after this appointment! I don’t really love the disease progression that is going on and it’s scary. I am scared.
I have to write about this memory that I thought of yesterday before I talk about the most dsifficult appointment I have had these last 25 years. It was for my eyes. Every time I have an appointment for my eyes, I think about taking Sean there when he was a little over a month old. He saw a neural ophthalmologist as well. That was because he was premature. I didn’t recognize the office. I think there was carpeting when I took Sean, but there’s no carpeting anymore.
It wasn’t very handicapped accessible office space. I didn’t like that part! We got situated In the waiting room and we’re just waiting to be called. A nurse comes out, I didn’t catch your name, but she had bright orange hair.
Before she came out, I was watching the TV that was pictures of eyeballs on rotation. It was kind of cool. The piped music played as I was watching this optical show. I thought of my Dad because they played this song:
As I listened to it and watched the cool eye stuff I was seeing, I thought of my Dad because when he saw this video, the shirtless guy in the beginning, he would always say, “He reminds me of your brother, Jimmy.” My brother was in high school back then. None of my brothers ever wear shirts!!!
My Mom picked up the van already for tomorrow. I am going to My neural ophthalmologist for my annual checkup for my eyes. I don’t think it’s going to be good news.
My power chair’s hydraulics do not work. It just forward and back. I’m going to my appointment in my power chair, still seated straight as an arrow! She is just going to look at my eyes and know that they are not good.
After that appointment, I will go and get my Covid shot. Then I will be done for the month of May! This is so, so, so much!!!
