Month: February 2023

The MOST Startling Statement

Today, I made the most startling statement. I called this morning to reschedule my doctor appointment with my PCP. I have been calling to reschedule this appointment for a while now! I have spoken to three different representatives!

Here’s the thing, I need to schedule my doctor appointments one a month. I started doing that last year and it worked out and I have the beginnings of this year scheduled.

The most startling statement came out of my mouth today I needed to reschedule an April appointment I had scheduled and I told the representative that I need a date for September. She was puzzled by that because I was rescheduling an appointment I had in April but I wasn’t going to schedule it until September?

Then I said it. It’s startled me! I told her that I am homebound and a power chair user and I need to schedule doctor appointment one at a time. She was able to schedule my appointment. I then called Creative Mobility which is my van rental place.

Just after I did that, my mom walked over to me and I told her what I said to the representative. Her eyes softened Jiang to me and I started to cry.

I was able to secure the dates for September and I also had to take care August 1 because we are getting our teeth cleaned. I used to love making my class schedule in college and I guess my life has reverted back to that. I’m not sure how I feel about that…

Stunned Silence.

I will have had my blog for 10 years in November. I originally started my blog to tell Parker how I was doing at Barwis Methods. After my injury, I still wanted to chronicle my recovery. Physical therapy and all of that. Now that I am no longer working, I use it more for my sanity.

I share what’s going on with me after having had the MS for 22 years. I really feel that 22 years is a turning point! I have never had MS for 22 years so all of this is new to me but I will tell you that I do not like it at all! It is all very startling!!!

I remember overhearing two foreign men yelling at each other when I was about eight years old. They had just gotten in a car accident and they both were hanging out of their driver side window calling each other, “Mother b*tch!” My Mom doesn’t like me calling it that but that is what it is!!!

I had, “A first” after 22 years of having this disease. I have been writing about this new occurrence for a couple of months now I think. But then, I had an experience. I didn’t really like it. It made me uncomfortable!

Last Wednesday, my brother stopped in as my Mom was making my gruel. I first told my brother about the trifecta I am dealing with right now. I am dealing with issues with my chewing, seeing, and speaking.

I have been addressing all of these things since they started. I just met with my Speech Pathologist and I will meet with my nutritionist on March 8. I bought more contacts because I still am wearing the daily contacts. I will meet with Dr. Harris, hopefully in June, but I don’t think my prescription will change even though my vision is.

He listened intently and my Mom walked over to show him what I eat. He was silent. It was a sort of stunned silence. I have joked with my Mom that I only eat ‘hard tack and gruel’ because I really do.

I called my friend because she dropped Girl Scout cookies off that I ordered from her daughter the day before. We worked together and we partied together and I told her what I eat and I heard the stunned silence again. That does not sit well with me at all! I have written about it and personally I’m trying to work through it as well.

I don’t think I will say the words to people anymore because that was painful to see their reaction but I’m sure I will write about it because I need to work through all of these changes and they are coming at me fast and so hard!!!

Cathartic.

Today is the first Friday of Lent. I did my duty and in lieu of going to stations of the cross, I watched Jesus Christ Superstar. I cried at all the same spots.

I find that movie very cathartic! And I still think Caiaphas’ hat would have been so cool to have when I was younger! But not now because I’m about to be 41!:

A Completely Different House

My son texted me this earlier this evening:

I love this text for a few reasons: 1. Of course I remember that song! 2. The subsequent text correction with an * because that’s what I do all of the time! He knows language is very important to me and realizes the trouble I am having communicating now.

So, once I received this text, the first thing I had to do was listen to the song!!!:

I called him once I was done listening to the song. I told him, of course I remember that song! I told him that it is from the second apartment during spring or summer the year that Chase and Zoey kissed on Zoey 101!

Then we started talking about Zoey 101 and Sean told me that the first three seasons are on Netflix and that he thought they were adults when he was a kid but they are children. We laughed and he said that they are going ahead with a Zoey 101 reunion episode of sorts as they are older now and he said that they stopped works on a Ned’s Declassified.

I am completely a ‘boy mom’ and Ned’s Declassified was also a good show that we used to watch when he was young. I appreciate that he understands that I live in my memories now and we can share them together.

But then he told me that his memory of this song is from the computer room at my current house. He told me that it was back before the renovations. He told me that it was a completely different house! I remember that too!

Bean Soup

I had a memory of me and my Dad today. I am not even sure when it started or even when we did this but I know we did this multiple times when I was young! we used to sit at our dining room table and sort pinto beans. Dry pinto beans.

My Dad would lay out bunch of a dry beans in front of me and he used to place a bunch in front of him and we sat there and sorted. We would sort out the shriveled beans as well as rocks. He told me that we did not want to eat those!

Once they were all sorted, he would put them in a pot and put water in it. He placed it on low heat and put spices and a couple slabs of raw bacon in it as well.

Those beans would cook on the stove for hours and they smelled delicious! I Think that my mom would mash them for Mexican meal and I was remembering today that after the beans had cooked for more than a few hours my Dad would ladle out some for me and himself.

Then we would sit at the dining room table and eat our bean soup. Not really talking all the while. My Dad was comfortable in silence with me and I was equally as comfortable. I am sitting in silence as I write this and somehow this silence is a little bit different. I miss the silence of eating bean soup with my Dad.

The Speech Teacher

My friend and former colleague came over yesterday to drop off Girl Scout cookies to me because her daughter is a Girl Scout now and of course I had to support her!!!

It has been a long time since I have eaten Thin Mints but I spoke with my Speech Pathologist today and she told me that I should make it easier to chew and swallow by cutting or grinding it up into small pieces and putting it into yogurt or ice cream.

I really liked that idea! I told her that it is Lent now so I will not eat them until April at least. So, hopefully there will be warmer weather.

I was telling my Mom that I was remembering when I was in grade school. I remember that a few students used to leave during class 10 see the speech teacher and I was jealous that looked like fun! She used to give them taffy pieces!

But now things have turned full circle for me now. I will see her again next month and I meet with my nutritionist in March as well. I think that my weight has stabilized and I’m relieved for that. It’s just strange that I’m really not chubby anymore?! There are so many changes and it seems to be call me needing right now!!! 😒😒😒…

Bow Out

A friend of mine sent this article to me and she added to the article that we have discussed this because we have!:

https://www.curbedp.com/2023/01/david-gissen-on-designing-cities-for-disability.hymn’s

I think that this is part of the reason why I am homebound now. The world at large it’s NOT handicapped accessible at all! I told her that when I leave my house (that’s strictly for a hair cut/eyebrow wax or for doctors appointments now) it feels as if I am balancing on a tight rope probably at least 20 feet off the ground!

Having had MS for 22 years now, I am dealing with so much loss and so much disease progression that I have just chosen to “Bow Out” for the most part and that’s a little bit startling and sad…

“I Don’t Eat or Brush my Teeth”

I told my Mom back in the summer when she was putting a load of laundry on in my bedroom. That was when I started drinking two protein shakes instead of eating food for breakfast and lunch. I just told her matter-of-factly that I don’t eat or brush my teeth! We both started to laugh because I had just started using an electric toothbrush and instead of eating solid food, I substituted shakes for breakfast and lunch.

But now I REALLY DON’T eat or brush my teeth! I started using an electric toothbrush in November of 2021 because I had lost ability in my hands to hold my toothbrush and not make myself spit out blood.

Just last month, I changed over to nutrition shakes instead of protein shakes to allow myself to have more energy and for lunch and for dinner, my meal consists of overnight oats, stove top stuffing, and saltine crackers. I talk with my nutritionist again in March.

It seems that all of this loss of ability is starting to mound up and that shocks, startles, and depresses me!!!