Month: January 2023

“Do Your Worst!

I was wasting time on Facebook earlier today and I saw this reel and it brought back a flood of memories and I started to laugh! Let me explain:

I think it was 2014 and just before Adam left. Adam was my trainer at Barwis and they procured a, “Stander.” Adam and I worked together to get me to a point where I would be able to stand in it. I think the goal was ten minutes.

Adam would transfer me into the stander and then there was a crank attached to it and each time he cranked it, I would stand up straighter. I think that I had been wheelchair-bound at that point for a decade so cranking it and forcing my body to stand up straighter did not feel very good at all!!!

I was determined and I understood that I needed to breathe through the pain and not resist it. I have always liked the movie TheCount of Monte Cristo and I remember this speech and I would breathe each time he cranked the ‘stander’ I would yell, “Do your worst!” It got progressively harder the closer I got to being fully standing and once he was done cranking it, I would say, “Do your worst… for I will do mine!”

I don’t know if Adam ever saw that movie but thinking about it now, it’s definitely worth a rewatch for me!!!:

A, “One-Off”

Things have been coming fast and hard in terms of my disease progression and my subsequent losses. I have yet to have things slow down but I am definitely praying for it to!!!

Thinking about this afternoon, I definitely hope that this is a one off” for sure! I have been wearing contacts for the past 28 years. Just last night, I reminded my mom about how my son used to notice that I would pop my contacts out of my eyes with my long fingernails.

no, it is necessary for me to keep my finger nails clipped to the knob because I cannot control my fingers enough to have my finger nails touch my eyeball anymore.

So, I put my contacts in and then have to put my glasses on. Sean didn’t understand why I was doing that but I explain to Sean that I have had optic neuritis for 22 years so I have a prism on the lens of my right eye to allow me to see clearly. Without the glasses on, my eyes pull in different directions.

When you do something for 28 years, it’s a lot of muscle memory. But what I am dealing with now is loss of ability. My hand strength has been steadily decreasing even though ice cream is my therapy buddy for 17 minutes a day during a rosary that I pray.

I do my left eye first because I am left-handed. Today, I was having the most difficult time on the ceiling the package with the brand new contact N. I wear daily contacts now because I can’t keep track of them anymore. It’s easiest for me to just throw them out after one use.

I was having the most difficult time peeling away the foil to expose the contact in the Celine solution. I think it was about the fourth time I tried that tears started stinging my eyes and I gave my mom a pitiful look as she asked if she could open it for me. It was then that I started to cry. She just broke the seal and allowed me to open it up and I was able to put my contact in my left eye.

I held my breath as I started to pull The foil back from the plastic container with the contact in it. Thank God that it pulled away from the plastic easily! I lit out the brass that I was holding and I really hope that it is just a ‘one off!’

My Last Hurrah…

I really had a little hard time last night after the AFC championship game was over. That’s when I would have ordered my Super Bowl shirt! That is a tradition that started once we moved into this house. I remember buying Sean a Ravens hat when they won after the game delay. That’s when we started watching sports together. I even let him stay up to watch the end of the game which was super late because of the power issue.

I started watching NFL football in 2009 when Sean started playing for the Dearborn Lions. That’s when I fell in love with Matthew Stafford! So, historically, I have not had a horse in the race as a Lions fan this deep into the post season. But then he was traded.

I was completely at a loss when that happened and Sean told me that I am a traitor because I became a Rams fan. My friend, Bert, told me that I had to stay true to my heart and so I did.

I have not watched any football this year. Only highlights on Twitter. I feel like a horrible fan but I think my health has dictated that I can’t do it anymore. I have been trying to hype myself up by saying that I will watch last year Super Bowl but I don’t think my eyes can’t handle it.

I was discussing this with my friend, Bert, yesterday and he understands where I’m coming from. He made me feel better with the statement of fact:

So, yesterday, I did NOT order a Super Bowl shirt because I am not even watching it but if I did, it would definitely be an Eagles shirt! I wore that shirt after they won the Super Bowl until there were holes in the armpits! I had to throw it away then!

A Punch in the Face!!!

This evening, well, actually this morning, when I was brushing my teeth to get ready for bed, I needed to open a new package of floss picks.

I have been flossing my teeth every morning and night since I turned 30 and my hygienist told me to do so!

I need to set the scene that caused me to get a punch in the face: my hand strength is steadily declining and I have a method to my madness. I buy the Scope Glide floss picks.

I purchase these picks from Target for 5% off but they only come in the 150 pack. That’s too much material for my hands to navigate through so I buy the 75 packages and my Mom just refills them and I change the package when I change the toothbrush head to my electric toothbrush.

And here comes the punch. Right between my eyes!: I folded over the serrated line to pull off the top to open the package of floss picks and I could not. I tried for a long time! I didn’t have enough strength! My Mom walked over with my toothbrush and I looked at her, in what I think it was a pitiful and desperate look but she took the package and pulled the tab off with ease.

And that’s when I began to cry… #MSsucks… 😒😒😒…

“Worse-er”

So, I had a Speech Pathology appointment last Wednesday and we worked on tongue twisters. She gave me homework to find difficult tongue twisters and dictate them in a text to her. I found 13 of them and they were really good! I shared one with her on Wednesday after my appointment.

But then the snow came and my Mom made Leia’s track. I was happy to see how happy that makes my Mom but I told her that all of that precipitation that is outside in the form of snow is also inside my body! And that hurts terribly!!!

So, Thursday was kind of a rough day but I was happy to see my Mom so happy. I thought I would just have to re-calibrate myself for the winter to get used to how my body feels with snow on the ground. I went to sleep on Thursday night with the hope that Friday would be better!

My hopes were dashed the moment I opened my eyes. I thought I was going to re-calibrate and feel better but that was definitely NOT the case! Friday, I spent the day groaning because it hurt so badly!!! I couldn’t believe that I spent the entire day in pain as I was trying to drift off to sleep. I thought, it’s, “Worse-er,” and that thought made me laugh!

You know what I was thinking!!!

I have shared that memory of my first night at WMU so many times on my blog and that’s what I thought of last night as I was beginning to drift off to sleep in the early hours of this morning. I saw myself driving (back when I could still drive) down E. Pond Dr. on my way to Wendy’s to get something to eat (back when I could eat normal food)

I was trying to find a radio station but I did not know them in Kalamazoo so I hit the shuffle button on my radio and started to drive. It was just at the bend of the road with the Inter-mural courts on my right when I heard the opening bars of this song and Axl asking me if I knew where I was?:

I’m Surviving It!… Just Barely

I have been thinking about writing this blog post for a couple of days now. I just spoke with my Speech Pathologist after speaking with my nutritionist two weeks ago.

I will say that year 22 of having MS ain’t no joke!!!

I am completely startled and taken aback at how quickly things are coming at me! It has always been a slow slog of losing abilities but this trifecta that I am experiencing right now (vision, speech, nutrition) is a bit much! But I am surviving it… just barely.

I searched through the archives of my blog and this is the reason that I write this blog! I re-posted posts from two years ago and last year. It was all talking about my lack of hand strength. I have been thinking about this since I told Sean the story about me intertwining three full bottles of beer in my right hand and three chilled bear mugs in my left hand when I was a surfer. He marveled at the fact that I could do it but I told him that I can’t do it anymore!

That conversation had me thinking about my apple tasting lesson when I taught English. I used to bring the apples in, and cut them on my demonstration table at the front of my classroom and I had my team teacher pass around Apple slices for my students to taste and to describe using as many adjectives as they could!

I couldn’t do that now if I tried! I don’t even hold utensils anymore! A spoon and that’s it. But with this loss of hand strength, I squeeze my extra firm therapy putty for an entire rosary every day. 17 minutes:

There are multiple exercises you can do with the putty but I just bought it and so it is quite firm right now so I will have to wait a little while. But since I have two of them, I started this one on January 18 and on June 18, I will start the second putty.

It’s kind of crazy how every single aspect of my life is on a schedule… I think it’s even a bit too much for my scheduling self!

In Preparation

I have not watched football at all! This fact is quite startling for me considering that I was such a HUGE football fan! I would watch hours of pregame every single year and I never had a horse in the race! That is until last year! I have been a diehard Matthew Stafford fan since 2009 when he came to Detroit!

That being said, I’m grateful that he reached the mountaintop last year so I can get away with not being so invested in football this year as my disease is progressing.

Rihanna is doing the halftime show and I watched Tom Holland‘s lip-synch battle in preparation for the show! I think I will re-watch last year‘s Super Bowl (You KNOW that I have that recorded! ) to see if I can handle the fast movement…