Month: August 2024

A Switch-A-Roo

Tomorrow is supposed to be “Go Time,” but I have made the executive to do a switch-a-too instead and this is what I mean:

I have already written about Saturday night smelling hydraulic fluid when I was transferring back into my chair. I had my Mom call NSM on Monday and she was able to get an appointment for Wednesday. Wednesday, I had rented a van to get my haircut, but I’m just going to let my hair grow (the curls will come out now) and my Mom will drive just my chair to get serviced. I will be in my manual chair in the meantime.

I tore my meniscus eight years ago, so I don’t think it’s going to hurt that badly as I am waiting to get back into my power chair. After my Mom comes back here to switch me back to my power chair, she wi then go to Zerbo’s before she takes the van back.

Tonight, I was telling Sean about it and I told him that I will be the guy on Kim Possible! We started to laugh, and I had to look it up, because neither one of us could remember his name. He was like six at the time. I looked it up and his name is Wade:

I laughed when I found out his name! But my Mom sent me pictures that she took last night of the hydraulic fluid leaking. I will enclose two pictures here. I hope it gets fixed!!!:

I am reclined in the chair in this picture, and my Mom crawled beneath my chair and could see the leak. And then she took better picture:

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“Let the Curls Come Out”

OK, here’s the deal. “Go time” is supposed to be on Wednesday. But here’s what happened…:

I think I noticed this in the beginning of blast week, when I was reclining back in my chair to slide back so I am seated in my chair properly. It was creaking a whole lot! I told my mom that it sounds like the tin man. I got this chair in December and my previous chair NEVER creaked like it was creaking this past week. But on Saturday night, I was adjusting my chair a little bit and I smelled something, “Chemically.”

I texted my Mom last night to tell her to to call Ray or Sarah at NSM (National Seating and Mobility) and tell them that I am smelling hydraulic fluid. I then told her that I will forgo my haircut on Wednesday to get my chair looked at. I spent the morning devising the plan as I was praying.

I remember probably in February or March when my hairdresser noticed that I am getting curly hair. She asked me who has the curls and I told her that my Dad did. She also has curly hair and she looked at me and asked if my Mom would blow dry it. I told her that she wouldn’t and then she suggested product. I shook my head at that too. I think it was April when she cut my hair the length that is now. I get my curls cut off every single month. But now I think I’m going to have to just ‘let the curls come out’ and this song is in my head as I say that;

I think I might post a ‘grow out’ picture because usually just before I get my haircut, like now, I feel curls roll up on my head in the morning when I comb my hair. I want to know what it will look like a month overgrown?

-7.5

Today was the first day that I used my -7.5 contacts. I had been in -7 for the past three years. At my last appointment, I couldn’t see ANYTHING so he raised my prescription. I used up my -7.0 contacts and today I git my -7.5.

I could definitely see a lot clearer as soon as I put them in! However, watching mass today was a little bit tricky. Oh yeah, I do that now because I’m homebound. But I couldn’t see mass as clearly but I think because it was raining on and off today. This weather is terrible! Still!!!

I still hear that doctor all the time telling me that I will go blind before I die but to go up a half step every few years It’s OK by me I guess. My Mom says that she knows of people who have -10 contacts. I got a little ways to go I guess…

“You Have Hands Like Daddy Too!!!”

It’s August. August has been a hard month for me since 2006! But, this heat this summer is making it so much worse!!! I feel the tears so close to the surface because I am so uncomfortable and I have been for a prolonged portion of time. I thought I was noticing age spots on my hands so I sent pictures to my brothers to ask if they think that what it was and my brother Steve sent me this:

Seeing his hand completely startled me! So I texted him this:

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My text to him said, “You have hands like Daddy too! And once I finished sending both texts, the tears just flowed freely! But he does have hands like my Daddy! ALL of my brothers do!

Back to School

I think that Sean was in fifth or sixth grade when we were ‘back to school’ shopping and I looked at him and told him that back to school is my favorite time of year, and it will be for the rest of my life!!!

I also remember that year that I had him bring his school list and I had a yellow highlighter to highlight everything we got. I remember a man looked at me and said that that was a really good idea! I told that I was a teacher. I also told him that I usually get two of everything because in January, he’s going to need new supplies!

I remember feeling so helpful back then in this instance. Let’s fast forward to now where I am homebound and stopped working eight years ago. When I woke today, I was cleaning out my emails and I saw a back-to-school Target email. I have seen Kohl’s back to school and a bunch of others. I just delete them. That part is sad but teaching is not part of my life anymore. My certificate expired a few years back anyway.

So, this afternoon, when I was deleting my emails, Back to School shopping was just a passing thought. I remembered that used to love it but the things are different now! I seriously used to think about throwing my manual wheelchair in the trunk of my car before getting into the disabled parking spot at my work when I was 65! It’s crazy that I had to stop at 35 because #MSsucks!!! 😒😒😒 Things are so different for me now…

This is MORE Difficult Now.

I got this meme from a fellow MS warrior four years ago. For me, it’s NOT antisocial it’s infirmed.

My life pretty much stayed the same. Well, I guess that’s when it changed. It started in 2021 but we did not read it until January 2023. In January 2023. because I have been disabled for so long, my insurance changed to HAP senior plus.

The last time we went to get our teeth cleaned last February, because my Mom goes with me now instead of Sean, there was no charge for cleanings and x-rays. That is the extent of my dental care! I do have a cap on the left side of my mouth because in high school, I opened a water bottle with my teeth but that is the only thing going on with my mouth.

I really can’t believe my life is like this now, but it is. I just go to the doctor, get my teeth cleaned, and get haircuts. At least I know what is expected of me 23 years into this horrible disease… this is more difficult now!!! #MSsucks… 😒😒😒…

Oh, I’m BEYOND Ready!!!

I received this email today:

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I so much appreciated getting this email because this heat is killing me! It has been killing me since the very beginning of June! I’m really not sure how much longer I can handle this.

I still have what I think is two more days in my ‘bag-o-chapstick’ of my cucumber mint before I will have gone through all four tubes of my spring/summer flavors!

A few days ago, I got a boost, where I just felt great where I almost wanted to look at my Mom and say let’s watch a movie, but then I went back to the mode I am in. This consistent 80° is killing me. I did not know that it would kill me to the extent that it is! But this is terrible!!! So, of course, oh, I am BEYOND ready for some fall flavors of chapstick! My box is all set as soon as I finish my Cucumber Mint!!!

Maybe pictures will follow when the weather gets better…?

Rando Tune #52

i’m really digging videos of 80s songs that show up in YouTube randomly! I had completely forgotten about this song and then when I heard the beginning bars, it is summertime in the living room of my Parents’ house, and yes, we still had the green carpet in the living room!!!:

Rando Tune #51

I often will watch videos on YouTube about songs. I watched the Miss Mojo video on covers that ended up being more popular than the original! Of course, Hurt was on there and I’ve talked about that tons but I saw this one. And man…

I had to put this one on here! This was my jam! This is singing at the top of my lungs in the back of the bus and Washington DC in eighth grade! I remember that Ms. Duffin and Mr. Rashid were NOT happy about it because it was late so I had to stop. I listened to the entire song, and I no longer can sing along with it, but I loved it!!!

Are You Depressed?

I forced myself to eat lunch today as well as yesterday because I am running low on nutrition shakes, and a new box just arrived today. I had to wake up early because I had a virtual neurology appointment today.

My appointment lasted about a half hour, and my Mom held my phone so I could show my Neurologist my arm movement and she wanted to look at my eyes as I looked sideways and up and down. She asked my Mom about my transfers, if they are any different than they were last year and my Mom said they are not.

After I showed her my eyes, she had me hug myself and waive my hands over my head. My Mom told me that I did all of the movements before she asked me and I told her that I have been doing these movements for 23 years!

Toward the end of my appointment, she asked me a question. It was the first time she had asked me it in 23 years. She asked me if I was depressed. I thought for a moment and looked at her, and sort of smiled weakly and told her, “No.”

After I had ended the phone call for my appointment, I looked at my Mom and told her that Dr. Cerghet has NEVER asked me that and I’m a little bit startled. I told her that, this IS depressing! 100%!!! But I am SO grateful that I am NOT depressed, I do get down a little bit, but my Mom told me that it doesn’t last that long. It’s nothing concerning.