Category: Uncategorized

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.

https://www.gofundme.com/f/help-repair-my-essential-power-chair?attribution_id=sl:8e4a809a-9a57-4ce1-a71a-fc687e35538d&lang=en_US&ts=1780037076&utm_campaign=man_sharesheet_dash&utm_content=amp17_tb-amp20_control&utm_medium=customer&utm_source=copy_link

I couldn’t embed the link so here it is just above:

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!!!

Well, today was day 2 of sitting like an arrow! As straight as an arrow! There was a slight learning curve, and I have to get used to being this disabled!!! I wasn’t this disabled a couple months ago?!

Now, there are two things wrong with my power chair. At least two things. I wonder when the parts will come? This is an In opportune time for me because I have an ophthalmology appointment on Wednesday. My chair can just go forward and backward.

I am still going to go to my appointment because I made that appointment six months ago and my eyes are a thing now. I will see my optometrist in August.

All of this is so much!!! A little bit too much I think but there’s nothing I can do about that…

Late pillaging night. ‘Splain ya later.

Well, Caitlin told my Mom that my socks would be mailed out on Monday. It’s Tuesday and they have not been mailed out. I am two days away from four weeks! My legs are killing me! But, I just can’t understand why I want eight months without wearing my socks in 2022. From April to November. I had pressure sores on both of my heels.

This song popped into my head even with my legs hurting so much! I think of showing this video to my kids (students) right before we started reading The Ousiders. I’m totally thinking of Sharpay!!!:

I guess this is classic disease progression because I can’t even see straight right now! My Mom mentioned today that we should cut one of my pair of socks toes off. I agreed with her and I hope we do that tomorrow!

I saw this email today when I woke up:

I was interested because I have had optic neuritis for the past 25 years. I was six months pregnant when I was first diagnosed. I was remembering that appointment. It was upstairs from my pediatrician. Dr. Skarf diagnosed me with optic neuritis in my right eye. I was totally concerned because there was a little gray area on the outside rim of my right eye. He told me not to be concerned because he has seen patients with black in both eyes! Mine was just a little gray area.

https://www.mymsteam.com/resources/optic-neuritis-how-does-ms-affect-vision

I haven’t even finished reading this article. I have optic neuritis in both eyes now. I just never would have imagined it would be THIS DIFFICULT 25 years ago?!!!!!

Dr. Skarf has since retired and I see my new neural ophthalmologist on May 27. I haven’t seen what my eyes look like now and I had a visual field test last year. I will get another one next year.

Sean is here watching then NBA finals and I took my contacts out because my eyes hurt but I heard this commercial and I had to watch it:

It’s really like that?! It’s only now that Sean will tell me that I would’ve been a ‘bad mom’ if I let him go into preschool by himself. I was NEVER going to let him do that?!

it has been three weeks since I saw Dr. Thibodeau and he told me NOT to wear my compression socks and my legs have been throbbing since!!!

My toe is better and I’m just waiting for the toe-less socks. I haven’t been without my socks since November 2022. That was when I was getting over my pressure sores on my heels.

I had a specific conversation with God for those eight months. Looks like I need another one because these three weeks are a bit rough!!! It is three weeks and counting because they won’t ship them out until Monday – maybe…

So, yesterday when my Mom ordered the socks for me, she was told if she gets a script from my doctor there would be a small discount. The podiatrist prescribed that in January. His office called my Mom today.

The woman she spoke to put the script on MyChart for me so I have a copy as well. So, tomorrow my Mom will call Befitting You to see if they’ve shipped my socks out.

So maybe I’ll have socks by Friday. But it really doesn’t matter because my legs have been throbbing so much! My Mom asked me how long they have been throbbing, and I told her since Dr. Thibodeau told me not to wear them so my toe would heal. So it’s healed, but my legs are throbbing!!!

My brother, Ray, bought me and my Mom Girl Scout cookies when it was cookie time. It was during Lent. I did not eat my cookies. That is until last night.

But my Girl Scout cookie eating is modified now. I remembered that I would buy them from whomever’s daughter was a Girl Scout when I was working and I would get three or four boxes of Thin Mints. I would put them in my freezer. And save them for emergencies.

When I would have a pretty stressful day, I would pull out a box of Girl Scout cookies, and take out one roll of the cookies. I would eat the entire roll in one sitting!

I no longer can eat like that being a power chair user. I don’t move all day so I can’t have that much sugar. But I have decided to just have three cookies a day. I don’t get weighed until September so I think it will be okay.

But, in full disclosure, I had six cookies yesterday.