Well, I woke up this morning, and I feel different. I feel differently than I did in the beginning of June all the way through August! This was horrible! I’m not even sure if it’s over ‘for real, for real’ but today I feel different. I can breathe a little easier.
Yesterday, my Mom told me that I was frowning when I woke up. She thought it was not a restful sleep. And I told her it IS NOT a restful wake up! I don’t even remember what waking up feeling rested feels like anymore!
I’ve seen so many memes on Facebook about the ‘Ber months being the best and now I totally agree!!!
I have always loved back to school but now that I no longer teach, I am loving Halloween more because Sean’s birthday is so close to it and I have time to watch Hocus Pocus now! At least I get a little reprieve from the horrible feeling in the heat But, the cold weather is coming probably faster than I want it but I am thinking out the fact that I am different from last winter. This disease progression is killer!!!
My next haircut appointment is for September 18 and I have also made an appointment with my naturopath that day. So, I have NOT left my house since July, but I really want to finish this Spring/Chapstick! I’m staring at my Fall chapstick box in my remote control box and I can’t wait! Maybe Friday?
I had already posted this one because Fall was my favorite season even before I was diagnosed with MS!!!
I made the executive decision today, actually yesterday, to stop using my cucumber mint chapstick, because there was just a little bit left and it was kind of hurting my lips so I threw it out and this morning I started pomegranate.
So, it is officially Fall for me now! I’m sure it will get to be winter way too fast because I currently am wearing socks instead of my bare feet. My Mom broke her pinky, the base of it, so I’m not wearing my compression socks right now.
But today, I had a change of plan. Last week, as I was distributing pills into my pillbox, my hands felt very uneasy and I couldn’t control my fingers. I thought it was because I was drinking a shake instead of eating dinner. I ate dinner tonight before I pillaged and my hands still got shaky as I was counting out the pill that I take 70 of a week.
Right now, as I am sitting here, thinking about how difficult it was for me to pillage even AFTER I ate dinner, it just points to disease progression. That’s what it is! But now, I am counting out 35 pills a day. I am going back to my naturopath on the 18th. I’m going to have him dose me for some of my supplements. I feel that my needs are changing and it’s a little bit scary!!!
Such an icon! I forwarded that first text to Sean, but he was already asleep so I unsent it because this is terrible news and I’ll talk to him tomorrow. But I saw this on Twitter and I cried!!! I can’t even watch football anymore at this point, but hearing him talk about U of M made me cry!!!
So, I have written before about the fact that my hair is curly now that I’m in my 40s and my Dad was the one in my family who had curly hair. A couple of my brothers have curls and one has waves. I had straight hair. When I was a kid, what I wouldn’t give for curly hair!!!
My Dad did not have very much hair on his the top of head but my Mom disagrees. He had a really big forehead. He didn’t have hair on the top of his head but he grew a ponytail. My Mom did not like it but he did it anyway!
I have crystal clear memories of my Dad getting ready to go somewhere and he would comb his hair before he put it in a ponytail holder. As his ponytail got a little bit longer, the curls would knot up, and I would watch him yank the comb through his hair. I always thought that it looked painful! I remember that it sounded painful!
I am not sure how long after my Dad died, but my Mom brought me the comb that he used to use. I had already cut my hair so I could use combs instead of brushes. She actually brought two combs to my second apartment. I remember that I cried when she brought them to me and I have been using them ever since!
I missed my haircut last month because my power chair needed to be serviced and it’s currently at phase 3 of 6 in the process of when I can take it in to actually get fixed. I am going to have a two month growth before I get my haircut next week. My hairstylist cut my hair short so as it would not curl. She asked if my Mo would blow dry it or if I would have product in my hair and told her that I wouldn’t do that, so she just said that we have to go short, and I agreed.
I remember reading somewhere in a magazine when I was a teenager that hair follicles are different depending on your type of hair. Straight hair follicles are different than curly hair follicles and both of those are different from wavy hair follicles. I’m experiencing a shift in the follicles I think because it feels weird!
So, let’s go to this morning when I was combing my hair with my Dad‘s comb. My hair is getting longer, and it is starting to curl. I do not move when I sleep, so I stay on my back all night and my Tempur-pedic bed. Sometimes, the back of my hair gets knotty now.
This morning, because it is longer and a bit curly, I was running the comb through my hair and it knotted in the back. I stopped pulling the comb through my hair and thought for a moment about my Dad just yanking it through the knots. I paused and gritted my teeth, and just yanked it through my hair! Yes, it hurt A LOT just like I suspected when I was a kid! But I can’t help think are using the same damn comb! This is what it looks like, it was issued by the hospital many years ago and my Dad didn’t want to have to pay for a comb so he didn’t and I guess now I don’t either:
it did bring pause to me to think that we are using the same d*mn comb!
I used to go with Sean and my Mom to take Sean trick-or-treating when he was young and I was more able-bodied. I saw this meme yesterday and I started to laugh and I will tell you why:
It was 2005 and I think Sean was a werewolf? Trick-or-trusting when he was young was pretty organized. I’m OCD.
Sean ALWAYS wanted to choose his candy bucket and he didn’t like the idea of pillow cases until he was older. I remember that it was my first year teaching and we were allowed to wear understated costumes while we taught. I borrowed my cousinT, Shannon’s fairy wings and I covered my face with glitter.
I had taught that day and I was tired and still had my glitter on. Retrospectively, I should have forced myself to walk with my crutches!!! But, I didn’t and my Mom pushed me on the sidewalk while Sean went to each house with my Mom. I stayed on the sidewalk and I had a pillowcase with Sean’s overflow candy so his bucket wasn’t too heavy.
As Sean and my Mom came back to the sidewalk, she had a strange and somewhat amused look on her face and said as she grabbed my handles. She whispered urgently, kind of under her breath, “Just take the candy!”
I didn’t know what she meant until the homeowner who just gave Sean candy walked directly over to me with her bowl of candy. I immediately knew what my Mom meant and I smiled and held up the pillowcase that had a little bit of candy it.
As she came close, I said, “Trick-or-treat” and thanked her as we went to the next house. My Mom told me that she noticed, “The girl in the wheelchair!” That’s why she came to me. I told my Mom that I cannot believe that I just trick-or-treated and I was a professional and 23!!! My Mom just shrugged and told me that it was for Sean. Well, it was!!!
This morning, a random memory popped in my head as I awakened and I teased it out so I could remember it more and I could remember more things about it. It is the sweetest memory!!!
I think that I first have to preface this with a not so sweet memory. But I’ll be quick. I think it must’ve been November 3 when this baby was born. She was Sean’s neighbor in NICU. I got all of his information from nurses talking with each other. A baby was born when Sean was in NICU, and her mother never came to see her. Her grandmother did not even know that her daughter was pregnant and no one came to see her.
We heard that as we were sitting with Sean. I remember crying because I had just had a child and I told Sean’s dad that we had to take her home with us! He just said kind of exasperated, “Jen, we just had one of our own!” I remember nodding but still feeling terrible for that baby. I could see her because she was right next to Sean. She was cute!!! The nurses were on the schedule to take turns to hold her to help with her development.
But now, here comes the fun memory. When Sean left NICU, I had already made appointments for him. He needed to see an ophthalmologist. Being premature, that affects the eyes.
We had an appointment for sometime in February. And I remembered that because at that appointment, Sean was three months old and finally fit into 0 to 3 month clothing!!! But he had a mint one piece long sleeved, onesie/loungewear thing on.
Sean was all bundled up because it was cold and we were waiting for our turn. They were probably about four or five other mothers with car seats for their premature babies as well.
Having a premature baby was pretty stressful! But this day, I remember seeing an absolutely bubbly woman with shorter light hair probably in her mid 30s. She had a long coat on and she put her baby down as she unbuttoned her coat. I was sitting there just waiting, and she looked at me and told me so excitingly that she had just got this baby on Monday!
I smiled at her, and I think I told her ‘congratulations’ She continued telling me that this baby was slightly premature and a bunch of Doctor’s appointments already scheduled before she got her. She said that’s why she was there.
It was nice to see how excited she was and I remember she started unzipping the cover to her baby’s car seat. I checked on Sean, who I had unbundled, just as I turned my head to the right, she had the cute baby next to Sean in NICU!!!
I have no idea what made me think of this almost 23-year-old memory because Sean will be 23 in November, but it was a sweet memory to wake up to! That woman was so happy! But thinking of how bubbly she was, makes me think of this song as well. We was living in our second apartment when I told Sean that this is what “Good Kids moms’’” want for Christmas. He asked me that when he was five or six. I cut myself the CD and put it in my stocking:
I did not tell that woman that I recognized her baby but then Sean and I were called, I think we just gave each other well wishes as I went back for the appointment.
I think it’s crazy how random memories popped into my head but I enjoy thinking about them because I was more ‘able’ then.
I have already begun gearing up for this month’s outing. I am getting a much-needed haircut on Wednesday. I am also going to see my naturopath before I get my haircut. He will see my overgrown eyebrows?! I’m a little embarrassed about that but it cannot be helped. I have to get dosed for a couple of my supplements. My needs are changing medically.
We are getting our teeth cleaned the following Tuesday and then I am going to the pain clinic for my knee. This is the first time that I have gone to the pain clinic but I know what I need!
I think it’s a little crazy that right after I go to the pain clinic, I have a visual field test on October 1. I haven’t had a visual field test for a while and I’m nervous for what it will show. I already know that I’m having issues with my eyes but I don’t know what extent. I’m gonna find out on October 1. My appointment is at 3 o’clock. I hope that I’m not too bummed out to watch Hocus Pocus! That IS the first of October…
Today was the first leg of ‘go time.’ I have two appointments next week because we are getting our teeth cleaned on Tuesday and then I am going to the pain clinic for the first time at Henry Ford on Friday!
Then, the following Tuesday, I am going to get a Visual Field T est done add Henry Ford in Troy. And lastly, on October 17 after our haircut on the 16th, we are going to the Cidermill!!!!
This is a whole lot of stuff for the next three weeks! I just wish that I wasn’t so nervous because I am so spent today! I work out, I do have faith in that. I just can’t believe how tired I am! All I did today was go to my naturopathic and get a haircut.
it was 81° when I was out and about so that made it difficult as well! I definitely didn’t feel the fall breeze today but maybe I can feel it on Tuesday or Friday coming up. Either way October 1 is coming! But man, I am SPENT!!!
