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This song popped into my head this morning and I I needed to hear it. My body hurts!!!:

Math is hard. That is a fact that I have always known! However, I feel the need to share an story problem/equation based on the events of last night and this morning. Here it is:

Jennifer has had MS for 22 years. A cold, snowy and thunderous night leads to a mild morning of 42° and sunny. How is Jennifer feeling today?

The answer is HORRIBLE

I was talking to Sean a couple days ago and I told him that I am reminded of the movie, Love and Other Drugs. I know that I’ve written about that movie extensively because I really like it!

I want to watch it again but my Mom is living here with me now and I’m sure she’s not going to enjoy that at all! The reason I was referencing that to Sean is because there is a scene where she needs pain medication and she is trying to open her pill bottle. She is having a very difficult time!!!

I told him that I feel exactly like that every single morning as I am trying to open and close my nutrition shake. It’s about halfway through the shake that my hands become a little more normalized. And then I begin to squeeze my therapy putty.

I didn’t sleep last night and I am trying to find that clip but I can’t. I think this clip is just after the scene that I am talking about and that I was referencing to Sean but this is how it feels. I don’t have Parkinson’s so it’s different but the sentiment is the same 22 years in… This is not the clip and it’s a little crass but:

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!:

My Mom and I re-watched the upside today and we both agree that we really like that movie! Just as they both were paragliding, I was updating my Target list and looked at myMom and said, “ Disability is for the rich!!!

There. I said what I said and I’m just going to leave it like that!

I thought to wait until tomorrow morning to go on to my Vanilla Bean Chapstick but I couldn’t handle the scrape on my lips this evening so I changed it up mid day. I never do that but I was done with the Cocoa Mint and I still needed to wear Chapstick so this is what my winter months Chapstick looks like now:

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!!!:

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 Mom made Leia’s track this morning! I think that in the three years that we have had this track, she is now starting to kind of like the snow. She’s older now! She needs variety so my mom accommodated her:

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!