Category: Uncategorized

I just finished watching the Buccaneers playing the Rams. I have no words. I need to ponder this for a while! Can I just say that I knew that my man had it in him!!! I’ve always known that! Since 2009!!! 💯😍💯

Today, I tried my fourth fall flavor of Chapstick. I have to say, I am NOT a fan!:

I am still going to use it but it reminds me of a nasty Girl Scout cookie that came out when I was probably in fifth grade.

I remember this for a couple of reasons. My Girl Scout troop, (Troop 2348) had a cookie booth at our local grocery store. I’m pretty sure it was at Boji’s (which is no longer a store and I’m sure only people who lived in Dearborn 20 years ago remember it). I’m thinking it was the day Mr. Rubino (the math teacher at my school) came to the store. He bought a box of Girl Scout cookies from us!

But that year, a new cookie came out. It was gross! (didn’t my hold a candle to my thin mints!) I remember that it was time to close the booth down toward the evening and a man came up to the booth as we were closing and asked if we had a box of Samoas. We did not but, Mrs. Maher (my troop leader) had bought a box and was going to take it home. So when that man wanted a box that she was planning on taking home, she gave him the box and took the gross cookies home.

Each time I reapply this Chapstick, I think of that time of being a kid and seeing our teacher outside of school! I wish I could remember what cookie that was but it had bits of pecans in it and it was dipped in maple? But, I bought this flavor with Vanilla Maple so maybe I will just have to muddle through it because I like the taste of Vanilla Maple! Ah, The important questions that I seem to ponder these days as my face and hand are still numb?!

So, I re-posted this memory from four years ago on Facebook today when I woke up. It’s kind of crazy how now, it’s like I am a teenager who sleeps in all day. But sleep is hard to come by now and I have already tried to, “Schedule my MS“ to no avail so I just have to accept that after 20 years of having MS, I have to sleep the morning away. Don’t even get me started about GMFB! So, I reposted this:

I left it in the fact that Ms. Graybill liked my post. As my high school English teacher, she only knew me as, “Jenny.” I bring this up because I tried a new fall flavor of Chapstick today.

I chose:

As soon as I peeled off the seal, and popped the top open, I immediately smelt a smell from my high school days! It was lotion from Bath and Bodyworks, Warm Vanilla Sugar!

Even though the weather has calmed down a little bit, I’m really digging these fall flavors! But most especially, I appreciate you thinking about my high school. You know, back when I was able-bodied!

Lately, I’ve been sleeping a large part of the day away. I told my Mom yesterday, that I wanted to get up at 11:30. 11:30 came and went. She came back at 12 and I told her 12:15. I heard her say from my doorway that it was 12:11. I have responded with a closed eyes, “12:30.” When 12:30 arrived, I waved my Mom off. I ended up getting out of bed at about 1 o’clock. The one thing I DIDN’T want to do!

As I started my morning routine of taking my vitamins, drinking my water and protein shake, and brushing my teeth, my Mom told me that, “You can’t schedule your MS!” I took what she said to heart and realized that I pretty much have been doing that since the get-go!

I was diagnosed during my freshman year of college and I didn’t start teaching until five years after my diagnosis. I pushed myself in college and the entire time I taught. When we moved into our house, in 2009, I began waking up at 4:30 in the morning in order to give myself enough time to get ready for the day and to be at work by 7:15. My colleagues would joke with me because I don’t drink coffee and they couldn’t understand why I was so awake as they drank theirs. I would laugh and tell them that it was noon for me because I had been awake since 4:30 this morning.

As the years went by, I had already established that I needed a first hour prep period. So it got to the point where I needed to be to work by 8 o’clock before second hour started. Eventually, after I was injured, I had to throw in the towel!

I was happy that my Mom told me to NOT put my MS on a schedule because I did not wake up until about 2 o’clock this afternoon. With the coming rain for the next couple days, that makes sense to me. I feel terrible when it rains and it has already started!

So, yesterday was, “Leg Washing Day” for me. My Mom wears latex gloves when she changes my socks so she does not snag them because they are pretty expensive! She always starts with my left leg because that is my non-injured leg. When she pulled the sack off, she noticed a split between my big toe and my second toe. She looked at it, took a picture of it to show me up close, and said, “That looks like it hurts!” I looked at my foot and then I looked at the picture and then looked back at my foot and said to her, “It probably does!“

With my neuropathy, I do not feel anything but it looks like when Natalie Portman was Cutting her toenail in her dream in Black Swan and it pulled the skin. It was gross and I’m not going to show you the picture because it is gross too! It may very well hurt but I can’t feel it. Once that leg was washed and my sock was put back on, Then came my right leg’s turn.

When she pulled that sock off, we discovered that there was a bruise and a scrape probably about 6 inches long on the top of my foot. That occurred when my foot got caught up in the pedals when I transferred. But the more concerning discovery was that my pinky toe was bloody and raw. You see, I have written before about my feet tending to pronate nnow:

Because I sit in my wheelchair all day and have my legs outstretched because of my knee, it only seems the case that my pinky toe on my right foot is raw. I searched online for a picture and saw that I may have to get Orthopedic shoes now. I have written before that I have probably seen 20 different kinds of doctors so far in having my MS diagnosis. And it looks like doctor #21 is very close on the horizon now! My Mom tended to my scrapes and sores and even though I know that both of my feet must be in pain, it kind of stinks that I can’t feel a thing and at the same time, that’s a good thing?!

Recently, I’ve been reposting on both Facebook and Twitter blog posts from years ago. I started my blog in November 2013 I think and randomly I’ll scroll through and see the long list of archived blog post and I will just re-post them. It’s cool to see how consistent I am and how things have stayed the same because my whole blog is my thoughts. I like seeing the consistency for one thing that saddens me is how much my disease has progressed. I am so grateful to have written down so much of my Barwis training. I was so hopeful back then!

Lat night, or rather, early this morning before I finally fell asleep m, I posted a blog post from 2017. It was Sean‘s first homecoming at DC. It was and extremely warm day and I was not able to be outside as the kids were getting situated for pictures but my Mom did that for me, (for all of the parents)

The other moms texted me the pictures the next day and I was able to get a picture of my, “2 Sacreds”:

I fell asleep remembering that day and then, this morning, I asked my Mom to send me a picture she took with my son at my nephews graduation party a couple months ago. For me, this particular picture embodies how much my Mom cares for me! Everyone at the party was vaccinated but younger kids ended up coming who were not old enough to be vaccinated so my Mom did what she had to do to protect me and Sean is wearing a Matthew Stafford jersey that I got him because even though Matthew Stafford is no longer a Lion, I Love him too!:

Last football season, I did not watch the regular season and barely watched the playoffs. I did, however, watch the Super Bowl. My Mom is NOT a fan AT ALL so I just checked the scores on my phone.

This year, however, I had seen a commercial that the Rams were playing the Bears for SNF and I knew that I HAD to watch with Matthew Stafford being traded to the Rams and all. I knew that I wanted to watch him play but I am from Michigan so I can’t be a Rams fan.

I received a Twitter alert yesterday while the Lions were playing. I clicked on it and the moment I saw their Honolulu blue uniforms, I felt a sharp pain in my chest! It hurt because I knew that Matthew Stafford was not under center and so many of my guys are gone now! Golden Tate (who I used to tell that I had a crush on during the game), Darius slay is gone and it hurt too because I don’t really recognize the team!

In addition, I am not a fan of Campbell as the head coach. Schwartz was the coach when I started watching the Lions and I was all about him and I was even behind Caldwell. I was hopeful for Patricia but being the third coach since 2009, I was a little concerned. And then the trade happened!

I started watching professional football when Sean started playing peewee football. It was just by chance that I fell in love with Matthew Stafford but I did! When I saw the final score for the Lions game, I texted my son and told him that I didn’t watch and I don’t think I can handle losing anymore.

But then, SNF started. Stafford came on the screen and involuntarily I just yelled out, “I love you, Matty!” I texted with my friend during and after the game:

but then I saw the 67 yard touchdown pass on their second possession I went nuts! He actually shed some light on a few things for me when the game was over:

I have been a hard-corne Lions fan since 2009 and this feels so strange to me! I don’t even live in LA!:

I absolutely enjoyed watching the Rams game last night, or, should I say Matthew Stafford playing. I am really not sold on being a Rams fan…yet. Like half of my Twitter followers are the Lions fans and I love that camaraderie but I miss seeing this too:

I am excited to see this but know that I am just an outsider:

I have been impressed by Sean McVay since he got into the league! To see these two together is a little overwhelming! I guess I will catch football when I can but I’ve already told my Mom that I will be watching playoff football as well as the Super Bowl!

Okay, I think I need to preface this post before I write it that I have had MS for over 20 years. It will be 21 in December. With that being said, for just about all of that time, my body has NOT felt normal! That’s just how it is!

I need to say that because my son stopped by this afternoon and when I told him about what I am going to write about today, he looked extremely concerned! I am not putting a lot of importance on this sensation I am feeling right now and know that it will go away. Sean, however, was very concerned and started asking me questions. Sometimes I forget that he does NOT know me NOT having MS! I got pregnant with him just four months after I was diagnosed!

So, jhere is what I was going to write about. I just want to tell you that I am NOT concerned too much!:

So, yesterday morning I woke up to my left hand being numb and my nose and mouth feeling numb as well. My left hand has felt numb before when I was working and I would have to type with one finger using my right hand to send in my attendance to the office. Back then, it was a little difficult to maneuver my manual wheelchair with a left hand that was completely numb. The sensation eventually would come back. That’s why I’m not concerned about this new sensation!

I told my son this because I wanted him to laugh at what my Mom told me to do. Yesterday morning, I told her that my nose and my mouth, namely my lips, were numb. The space next to my nostrils before my cheekbones and my upper lip was numb. My left hand was also numb. My mom‘s response was priceless! We both laughed!

Her response was simple. She said, “Smack it!” How could I NOT laugh?! We both laughed because we know how absurd that statement was but it was kind of funny! She spent yesterday reminding me of what I needed to do or what she would do! It was variations of, “Do you want me to smack it?“, or, “I will smack it if you want me to!“

But, this has pretty much been the way we have handled my gradual decline over the last 20 years. We laugh! I was concerned at my son‘s reaction and I told him that I thought he would laugh at my Mom offering to smack me! He did say that that was really funny but he was still concerned. As for me and my Mom, we aren’t so much. Over the years, it’s kind of like, “Oh, this is how it is now.” She will walk by me and see me clenching and unclenching my left fist, scrunching my nose, pursing my lips between my teeth or pressing my lips with my fingers and she will offer again to smack me which will make both of us laugh!

I also think that another distraction I use is that this song has been playing in my head since yesterday morning when I awoke with numbness in my face:

Okay, so I already know that this holiday is not technically a REAL holiday! It didn’t become a holiday for me until I after moved into my house. Sean and I went to a Super Bowl party at my brother,Steve’s, house. We missed the beginning of the national anthem but we got to watch the game there. But then, I had to drive home!

We stayed home to watch the Ravens beat the 49ers in 2012. I even got Sean a Ravens that that year. We were just talking about that yesterday and he wonders where that hat is. It has to be in his closet or something! I can completely get into a football game for sure! I think it was a couple years after that when I would order B Dub’s for the game.

Sean is NOT a big, “Bandwagoner” like I am, but he likes B Dub’s and football! I didn’t even mind when he was in high school and he would watch the game with his friends. I would just watch the game by myself and eat my B Dub’s‘s by myself. When he would get home, he knew there would be food in the fridge.

but me talking about this before is me not facing the magnitude of the new development of this disease. I am having difficulty chewing. As per my swallow test, swallowing is NOT the problem but chewing is. I cried when I realized that I no longer could have my “Super Bowl food” but it’s really so much more than that! This is a big deal and one that will take some time to sort out.

As for football, all of last year, I checked the scores on my mobile NFL app. because my Mom does NOT enjoy watching football at all! But, my Mom is still here with me and the next season is starting?!

But here’s the thing, MY man left Detroit:.

It’s going to be a very strange season for me because I have always been a Lions fan but, the new coach’s voice irks me and I was 100% behind Schwartz in Caldwell. I tolerated Patricia, and now the squad is some thing I don’t recognize with everybody leaving. I don’t think I will watch football during the regular season as I want to but I will for sure watch the Super Bowl which I 100% intend for MY man to win! What I eat (or better yet, drink) I guess won’t really matter.

I’m thinking I want to hear u2 this month. Old school u2!!! These songs are from my childhood before I even knew that I would learn to love them! This songs are completely hearing it coming out from my basement as I was cleaning on the weekends or laying on the green carpet and being told to change it to channel, “ One-five.” I’m thinking back to jamming to U2 in my dorm room and my wall made coming over and asking me, “Weren’t we two when this song came out?!” That’s the year they were named, “Band of the Year” by Rolling Stone!: