Category: Uncategorized

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.

My Mom’s appointment was at 1 o’clock and she arrived a little bit late. I got back into my power chair at 4:48. Slouching my manual chair helped so my knees didn’t burn, rather, it was a dull ache and I’m glad it has stopped.

My knees feel a lot better right now! It’s really hard for me to accept the fact that my manual here no longer works for me. In fact, it hurts but it is necessary.

I think it will take me a moment to unpack this feeling…

Oh, by the way, since being in my manual chair, I have lost a significant amount of weight. The pelvis stabilizer does not work for me because it is too big. However, because I am in a power chair now. Techswho come into my house are NOT allowed to work on my manual wheelchair. That stinks!

So, here I sit, with a belt that is too big! I’ll be happy when my power chair is fixed…

Insurance only pays for my current wheelchair. It’s not my manual chair anymore.

I dropped my pillbox the other day and the left side part that snaps broke off. That really stinks! I’m going to wait until the right side breaks off and then I’ll get a new one. I thought I took a picture of what it looks like, but I guess I did not:

That’s what it looks like when I pillage. This is my fourth pill box. I take 10 different supplements for a total of 45 pills. I will go in July to get dosed by Dr. Clark.

The latest supplement that I am on, I just called in and Erin gave me a supplement that I can take to help my my vision. The supplement that I stopped taking was not for my eyes, but my vision improved has an off-label benefit.

Well, this is my second full day not wearing compression socks and I must tell you that my right calf is not feeling good at all, which makes me a little nervous.

Today, my mom and I talked about the fact that he wanted me to get open toed shoes. We know the shoe store to get them From and my Mom was looking at them today. I’ve been wearing compression socks for so many years, over a decade. I don’t know how it will feel with my skin exposed, especially when I have to leave the house?!

The podiatrist wrote a prescription for open toed socks when I met him in January and now we are going to look and get it filled. This is so much?! It almost feels too much at this point, but there’s nothing I can do about it.

Day two sans compression socks, it’s okay I think. I think it started to feel a little bit achy…