Month: November 2023

I was deleting pictures in my phone and I saw a screenshot I took when I woke up. But I have to explain that there is a method to my madness! So, yesterday I cried at that short about Travis Kelce’s reaction to Taylor Swift, changing the lyrics to her song. First of all, I don’t even know that song, I’ve never heard it other than that short I watched, but I posted that because I saw this quote on the Skimm this morning:

So, I had to explain myself because I’m really not a Swiftie… I don’t think…

I am completely intrigued by the Taylor Swift/Travis Kelce romance thing! I have never been a Swiftie per se, but I enjoy her music on the radio. My feed has been flooded with information about her so I am randomly watching things that I never would have thought that I would so I would know a lot of trivia about her. I didn’t know that she is 5’11 and Travis Kelce is 6’5.

I saw this photo not too long ago, and I could NEVER be a Swiftie just because that is way too many albums and I can’t even use mugs to drink out of anymore!

Sadly, I cannot be a football fan that I have been previously but hearing Travis Kelce talk about Taylor Swift at the news conference kind of didn’t sit well with me because that’s NOT the place to talk about that. That’s the place to talk about football!

So now, with all of that being said, I saw a short of her, changing the lyrics to her “Karma” song, and I saw his reaction and I’m NOT embarrassed AT ALL to say that I cried but I cried everything now so…

I can’t help but to think about a 23 year old memory, at least it will be 23 years old next month. I was admitted to the hospital and I was just about to be diagnosed. The doctor came for her evening round before my Mom got to the hospital. I was just laying in the hospital bed talking to my boyfriend who was visiting me. She came in in a tizzy!

I can still clearly remember her coming in and being so upset because, “ I wasn’t even here! Did you ask [this], [this], and [this]?” I remember that I just looked at her and said, “Yes. AND I asked [this], [this] and [that].” My answer seemed to appease her, and she just said, “Oh.”

I have credited my ability to handle my business in speaking with doctors from way back to me being a Girl Scout! I had to call all of my Mom’s friends to get cookies sold! She just recently told me that she had called him all before I called them. Thanks Judy King! You were my very first sale!

I am thinking about that now because after almost 23 years of handling my business while having MS, I am starting to slow down. Wednesday starts ‘go time’ this month and I will text my Mom pertinent information on Tuesday night.

I can’t think of a better person to hand over my reins to. I just never thought that it would get this bad! For example, this morning, when I sat up in bed, I could not even speak my text to my Mom because the muscles in my mouth did not work at all. Instead, I texted her, “Just sat up.” and it took me a long time to get those words typed!

I can’t believe that I will pillage tomorrow! The days are all running together, and this is startling me a little bit I awoke to left hip pain. My best friend texted me this:

Ami and I worked together at dfcu financial credit union in 2001, just after I had Sean. I met her at the copier, she introduced herself, and I was not very cordial. I was irritated about what I cannot remember now. She made Sean’s first three Halloween costumes!

MS is REALLY getting real for me now…

My Mom and I are STILL dealing with this tremendous red tape, but I overheard her the other day talking on the phone to my wheelchair company, and the man told her I said I could pick up my chair as soon as the Monday after Thanksgiving. My ears perked up at that! I should have gotten my new wheelchair in July, but this will make the BEST present ever!!!

I woke up to this:

I put my hands on my eyes and began to cry a little bit as my Mom came into my room. That’s the only time that my eyes leaked and I was able to get out of bed without crying.

It was kind of difficult to get me into my chair, and my Mom got me seated and then turned toward my bed, and said, “That was very difficult—“. I stopped her when she said that with my eyes closed and I put my right hand up to stop her from talking, and used my left hand to recline my chair in the seated position.

Once I was fastened in, I told her that, “It’s still going” as I leaned forward and allowed my sweatshirt to fall down my back.

I’m really not digging how difficult it is to get out of bed! It’s only getting worse, but I did NOT cry today… even in the rain so that is a plus?

This morning, when my Mom got me out of bed, my eyes did not tear and I don’t think that that I granted as much as I did yesterday. I was able to sit up on my own by engaging my core. I hear a mix of all four of my previous Barwis trainers. Today, I thought mostly of Nick, my last trainer.

As I sat up, similar to yesterday, and I didn’t even know how loudly I said it but I said, once I was seated upright, “Kinda traumatic.” I didn’t look at my Mom and I don’t think I was saying it to her, but mostly to myself.

I am starting to get completely startled at how difficult it is to wake up and move around to get into my chair. When I was putting my contacts in today, I asked my Mom if she heard what I said this morning, and she kind of acknowledged that I said something and asked me what I said.

I looked at her and said, “Kinda traumatic.” She nodded and told me that she heard that and then asked, “What am I supposed to stay?! I did not even look at her as I put my contact into my left eye and I just sad, “Nothing.”

There is absolutely nothing to say, but I’ve told my Mom so many times, I never thought that it would get this bad, because I really didn’t!

This morning, as my Mom was getting me out of bed, as soon as I used the remote to make my bed completely flat, my body started jerking and I started to grunt because it hurt so much so that my eyes began to tear.

Waking up and getting out of bed is becoming definitely more difficult! It seems as if I am tearing up almost on a daily basis. My Mom gets me into my chair, I push the joystick all way back while it is stillin the seated position so that I can get back into my chair to be properly sitting in it.

Once I get all the way back into my chair, I move it downward a little bit and fasten my pelvis stabilizer. Once I do that, I put my chair even further forward so that I am leaning forward so my sweatshirt will fall down my back.

This morning, as I was sitting up in my chair after getting my sweatshirt down my back it takes a minute for me to engage my core to sit up and I can’t do it all the time but I did today. Just as I sat up in my chair with my sweatshirt on, and my pelvis stabilizer fastened, I looked at my Mom, wide eyed and exclaimed, “That was INTENSE!!! Because it really was… This is getting concerning… #MSsucks!!!