Month: March 2022

Last Friday, my Mom went to run an errand and Sean was here with me before they drove the van back to the rental place. I had spoken with my Mom earlier that morning about the fact that I needed to buy a new pair of shoes. We were talking and we could not remember when I got them last. It’s not like I am walking on them at all or anything! But my shoes were wearing out so I needed to buy new ones.

But here’s the thing, I have small feet. I have had small feet for my ENTIRE life! So small that one time when Sean and I were living in our second apartment, the tub started to leak so contractors were coming to my apartment to install a bath fitter Tub surround type thing to stop the leak. Sean was not there and how I did it back in our apartments was that I would line up all of my shoes under the desk in the living room. I did that because my rule for teaching was that I would never wear the same chuck’s two days in a row! So, I lined them up there so I could make my decision on which pair to wear after I got dressed out of the bathroom. I had 13 pairs of low top chucks. That’s what I wore to work because it was easier to lift my feet because they were so light. I was still walking on crutches back then. I had so many pairs of chuck’s because I could buy a pair for $20.

So, two contractors come in and one of them says to me, “Oh, you have a lot of kids!” I didn’t understand that question and I told him that I just had one. It wasn’t until they called me into the bathroom to see if I needed the handicapped accessible bar reinstalled in the tub and I walked into the bathroom. I was wearing jeans and my chucks and the man looked at my feet and said, “Oh, those are your shoes!” I laughed when I just realized why he was Commenting that I have a lot of kids. I told them to reinstall the handicapped accessible bar because I am disabled and I use it.

I had to stop wearing chucks when I started working out at Barwis because I was told that those shoes are not supportive of your feet and the work I was doing there was specifically working on my feet! I wore Sheltos in high school so I had some! That was my shoe choice after being told that I can’t wear chucks anymore. Should I stream time is it I donated all of the chucks when I realize that I cannot wear them anymore except for my shiny, purple ones just in case I will be able to wear them in the future!

But, I bought them at Kids footlocker and they were $40. That’s no big deal. When I stopped going to the mall to buy things, I would order them online at Zappos. So, I figured I would order them there. But wait! What?! On Zappos website, I searched shell toes size 4 and they popped up. but, they were not $40! Zappos price was $95 and a double and triple checked that they were size 4!!! that’s insane! So, I searched on the Kids Footlocker website. they were not $95! But only $75! What?! With tax and shipping they were over $80! I told Sean about that and he even said, “Aren’t they supposed to be 40 bucks?! I told him that they used to be! And then my mom came into the house and I told her that my new shoes were $80! And she said as she closed the door, “For those little things?!”

I guess shoe stores are getting wise to the game that 40-year-old women can buy kids tennis shoes!! I guess it was only a matter of time before they started charging adult prices! That stinks!

I remember that one Easter, I bought Sean White shelltoes just like mine and I took a picture of their size difference and it made me laugh! I think I am going to look for that picture!

So, I had some developments last night. I was actually looking for a different blog post that talked about the day I got my chair from RIM and what Dave said to me when he was explaining my chair to me.

Since I didn’t find it to post, I will tell you what he said to me. I got my chair in July 2018 and as we were walking around the exercise area and he was explaining the joystick to me, he told me that these chairs are NOT designed to be slept in. But then he looked at me and said, but people do!” I understood what he was saying to me. But it was only yesterday night when I had to actually do that.

Waking up yesterday morning was difficult and it was the first time in my life that I actually cried in my bed trying to get out of it. Well, I have to be gotten out of it because I can’t control any of my muscles enough to get myself out of bed. I saw this post just after I wheeled into the living room and I still had tears in my eyes:

I told my Mom yesterday morning that I was going to sleep in my chair that night (yesterday). She said, “No!” I just looked at her and told her that it hurts too much! She didn’t like hearing that but I had already made up my mind because it REALLY hurt a lot!!! TOO MUCH at this point!

so, that is what I did last night much to her chagrin but that’s what needed to happen! I will message my neurologist and talk about progression of my disease but this is pretty much how it is now. This morning, my Mom had to run an errand and I was still sleeping and she was going to leave me in my chair . I told her, “Don’t worry so much about ‘supposed to’!”

That is a line from a movie we have seen together 1 million times. It came out when I was 16. Judi Dench is in it and she is the one who says that to her grandson. I know that I am ‘not supposed to’ sleep in a bed at night but I told her to not worry about supposed to because that’s not how it is anymore…. Regretfully.

We got Leia on April 28, 2020. She was six months old but that is just an estimate because the woman we got her from told us that’s where they guess her birthdate was. When we got her, I told Sean that she could be his “Birthday Twin.” He didn’t care but I did! So we have had her for a while, she will be three this October November-ish so maybe I can have ornaments on my tree again. But I’m not going to risk it so I might have to wait another year. So I have slowly adjusted to being a dog owner. I never really wanted to be a dog owner but this is where we are now. We have her.

I would have conversations with my Mom and tell her that I think that Leia doesn’t know where I stand with her because I don’t take her for walks and I can’t get down on her bed and wrestle with her. My Mom told me that she knows that I am important and she loves me! I told my Mom that Leia doesn’t know who buys her food, and her toys, her cute sweaters, and her really cute coat! But my mom reminded me that Leia comes to my rescue every time we struggle upon transfer.

It wasn’t until Sean said something about it that made me think. Sean was at the house when my Mom and I got back from the doctor. I called Sean and told him to put Leia in the cage because we were coming home. My front door has to be wide open for me to enter into my house off of the ramp that’s on my porch. So, we have figured out that if we cage her then she won’t try to get out of the house. so, I entered into the house as Leia was in the cage and I got myself situated in my normal spot just in front of the TV. Once I stopped moving, I told Sean to get Leia out of the cage.

And this is where I realized that Leia really does care about me. Sean opened the cage and she bounded out right to my chair and put her front paws on my armrest with her tail wagging wildly. I automatically did what I always do when she puts her paws on my armrest, I lean to my left side and use my left hand to pat her side while using my right hand to scratch under her chin. Once I finish doing that, she gets down. Sean asked me if she always does that and I kind of shrugged.

I haven’t really left my house all that much since we have gotten her so I guess that I am just always around. But Friday, we went to the doctor so she had time to miss me. Or something like that. But now, I will tell you the story that banded us completely! This happened yesterday. I am trying to look at it positively. So, my Mom gets me out of bed yesterday morning and I will to the living room where I always sit. She got me situated with my vitamins and my protein shake and then went to use the bathroom. Leia comes trotting out of my room and she’s got something in her mouth. I can’t see what’s in her mouth but I used my Mom’s commands and told her to, “Drop it!” Which she did and then I told her to go lay in her bed. But that’s the thing with MS, I don’t remember anything! So, my Mom comes out of the restroom and looks down where I told Leah to drop whatever was in her mouth.

She asked me why my mouthguard is on the floor in the living room?! I kind of gasped and told her, Leia was in my room and came toward the living room with something in her mouth! IN HER MOUTH!!! That’s why I gasped because I know exactly where that tongue has been! I’ve seen it and heard it countless times in the past two years!

GROSS!!!

But, I HAVE TO wear my mouthguard! Sometimes my jaw will hurt when I am gritting my teeth because I am cold in my house. I was fitted for my mouthguard after I went to my MRT therapist, Parker Whitaker, and I told him that I have never gotten punched in the face before but I imagine that’s what it feels like right now! Like I have been punched in the face! But, it was just in Leia’s mouth?!!!!

I think that it is a good thing that my mouthguard soaks throughout the day and my mom will rinse it off and give it to me before bed. So last night, she washed it with alcohol just to make sure and I put it in my mouth and Leia and I are officially bonded. My Mom sent me this picture of Leia, “Sunning” on the porch of the church across the street. She DOES look really pretty in the sun!!!:

On Friday, when we were leaving the doctor’s office and I had just gotten out into the parking lot, I smelled grease from a restaurant. It kind of smelled like fries because it was wafting from Chili’s from across the street. As I was crossing the parking lot, the smell kind of made me sad. It made me sad because I will NEVER eat in a restaurant again! Logistically, it just does not work for me anymore and that saddens me a little bit. The van we rented had a side ramp that was beneath the car. I was hesitant to get into it but it has worked out the most of all the accessible vans that I have been in. It was a quiet ride because the ramp was not jiggling beside me.

We had figured out already that since we had rented a van and I was leaving my house to go to the doctor, we would pick up food to eat. We picked up Sabina‘s because not only do I LOVE pierogi, it also is easy for me to chew. Once my chair was strapped into the van and my Mom got into the driver seat, she told me to call Sean. She told me to tell him our ETA and to find out where he was. I told her that I can tell Sean that I got weighed for the first time in a VERY long time!

So, I called him and we figured out what food we were going to have and my Mom had just pulled out of the spot when I told him that I got weighed today. I have not been weighed in a doctor’s office I since I was 18. I remember that I was in a wheelchair already and I was at the doctor’s and got called back into the exam rooms. It was a male nurse who called me back and he asked me if I could stand up to be weighed. I shook my head and told him, “I can tell you right now that I am 115 pounds. Oh wait, it’s just after Thanksgiving. I am 118 pounds.” We` both laughed and I just didn’t get weighed.

Thinking about that now as I write this, I was weighed four days after I had Sean. I had a neurology appointment and I had already seen Sean that morning, left to go to my appointment, and then I would return to the NICU. I remember the nurse looking at my chart as I stood on the scale and she looked at the scale and back at the chart a couple times and told me that I lost weight. I told her I had just had a baby and she smiled and asked me when. I told her, “Four days ago, he is downstairs in the NICU but I made this appointment six months ago so I had to keep it.” That weight was four days postpartum so it’s not a weight I like to think about very much at all. But then I had to call Sean to tell him how much I weighed now. I told him that I got weighed because the doctor’s office now has a scale that I can ride my chair onto. He asked me how much I weighed and I paused a moment and told him, “Over 500 pounds!” And we both started laughing hysterically!

Yesterday, as I was recovering, I thought about Sean and me laughing when I told him that I was over 500 pounds. The only reason that I am over 500 pounds is because my wheelchair weighs 400! I told him that I can’t even get on my 600 pound life yet! We continued laughing and he told me that, “It’s a lean 500 pounds.” So, as I was getting ready to write this blog post, I thought of a movie I saw a while ago and I saw it with Sean as well. It’s titled, Going in Style, and I was trying to find the video clip that she describes in this interview. I remember thinking of their relationship was so sweet because it reminded me of what Sean‘s relationship with my Dad could have been. I think that that would be a fun relationship to watch because it was tremendously fun for the short time I was able to watch it:

I think I may have to give this movie a rewatch and maybe I can get Sean to watch it again with me. But it was so fun laughing with him when he found out that I’m over 500 pounds! I think it was quite diplomatic of him to qualify the 500 pounds by stating that it was lean’ 500 pounds. Either way, it was funny!!!

Yesterday, I had my doctor’s appointment. We had a rough time getting ready to go but it was a great appointment! So now, I will spend my day recovering from yesterday‘s events. My sister-in-law texted me and her and my brother are going to buy my Mom and me dinner for my birthday! Who says that birthdays don’t last an entire month?!

So, my Mom took this picture of Leiafter their walk:

My Mom told me that the weather was beautiful outside and we laughed at Leia resting because it was so warm. But I told my Mom that I am STILL cold! Tomorrow, I have a doctor’s appointment so I will need to leave my house. If Leia is my barometer, maybe I need to change chapsticks…

So here is the deal, I finished my Vanilla Bean Chapstick The night before my birthday;

I was thinking about switching over to my Pomegranate chapstick because it will be after my birthday and spring is coming. But, the night before my birthday, it was 19°. So, on my birthday, I opened my other Vanilla Bean chapstick.

My Mom told me that today it is 48° outside and 48° is NOT warm for me. Even today, I still am wearing winter hats in my house and my thermostat is set at 73°. I blame that on a couple of things but my disease progression is not helping and the fact that my windows getting older isn’t helping either. I have a doctor’s appointment on March18 so maybe I will smell spring and will change over to pomegranate then but for now, it’s still cold so, Vanilla Bean it is.

I remember my Mom telling me once when I was young that she chose the name Jennifer because it was the most popular name the year I was born and she liked the fact that I could be called Jennifer, Jenny, and Jen.

I have been called all three of those names throughout my life and all very different situations! My family, calls me, ‘Jenny.’ If you knew me in either grade or high school, I was also known as, ‘Jenny.’ It wasn’t until college that I started introducing myself as ‘Jennifer’ because people were not understanding when I introduced myself as, ‘Jenny.’ My cousinT, Shannon, calls me ‘Jennifer.’ I received birthday wishes yesterday using all three of those names! It’s totally comfortable for me because that is how they knew me. I’m mostly, ‘Jen,’ now that I’m 40.

But there is one name, a nickname that I was given by one of my older brothers when I was 13. My brothers have always called me crazy and mean names but I didn’t really think about it when he called me this so I didn’t pay much attention. But, I did not think that this nickname would stick all the way to my 40th birthday celebration! But, it did. I am a 40-year-old woman who has been called this for the past 27 years and I guess I really don’t think anything about it which is kind of nuts!: