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Sean came by this morning just as I was waking up. I heard my mom moving around the house and I called out to her that I was awake. My head was not facing the doorway and then I heard a man’s voice! It totally freaked me out and I whipped my head around and saw that it was my son, Sean! I didn’t recognize his voice because I was just waking up and it did not register.

It was so nice to see him and easier for my Mom and for me because he just picked me up out of my bed and placed me in my wheelchair. My mom went outside to re-plant her mosquito plants and I started talking with Sean. I asked him if he remembered the math packets he used to do in elementary school.. I think he was in third grade when one of the options was to play a game of Monopoly with family members.

He started to laugh and told me that he remembered. I reminded him that I couldn’t figure out why I was so stressed out playing a boardgame with my 8-year-old son! I was recently thinking about a video that I saw on Facebook years ago when I first joined.

I think it was the first video I shared on Facebook and I added a comment to the post. I tagged my brother and Sean and stated that neither of them are invited or welcome to join!

My brother, Ray, is brutal in playing Monopoly! He taught Sean to play the exact same way! That’s why I was stressed out playing with him when he was eight years old! Hey

I think our Monopoly game is somewhere in the basement. I told him that I will have to get a new game when he has kids. He told me that he could teach them how to play! I checked him on that and told him I didn’t want MY grandchildren playing like that!

Early this morning, I swear that I heard Leia’s tail thumping on the wall or the front door. I was so out of it that I just turned over and went back to sleep but when’s my Mom came home. She ate breakfast before she got me out of bed and told me that Leia was it going crazy when Sean came to pick her up this morning! So I did hear her tail something on something!

My Mom went with Sean to drop her off at the vet. Today begins “Phase 1” of her heartworm treatment. She is going to be given a sedative and then an injection to begin to kill the heart worms. She is staying at the vet till about 5 o’clock today so they can observe her.

My Mom took this picture of Leahia as they were getting ready to leave:

It shocked me how grown-up she looks! I updated her profile picture when I ordered food from Chewy today. So now, my Mom left to pick her up but before she does that, she needs to go to the post office to mail a package for me because it almost is my best friend’s birthday!

It was super weird all day to NOT have Leia here and I can’t help but think of this movie as my Mom is going to pick her up. I would watch this movie but it’s more of a fall or winter movie for me to watch. I always thought Renee Zelleweger singing it was funny! I’m not drunk but I am by myself. It feels weird!!!!

If you have known me, you know that I am terrified of cicadas! This terror comes from my brothers throwing their empty shells on my head every single summer when I was growing up! I heard on the news that there was an increased number of them this year and I was grateful that I have not heard them does far!

well, the person who holds the #ChatMSs posted this a while back:

I responded with this GIF: it was

And then he tweeted a video of them shedding their skin;

And the conversation continued with more tweets about them where I responded with this:

I was talking to my Mom about my fear of cicadas because I was terrorized with them every summer when I was growing up! She couldn’t believe what I was saying! She FaceTimed my brother Dave a while later and she asked him about dumping hundreds of them on my head and he just started to laugh and said, ”Yeah we did!” My Mom shook her head and couldn’t believe that I didn’t tell on them. I’m not stupid! I wasn’t going to do that!

Sleep hasn’t come easy for me for years and I am not a morning person so it only makes sense that I am a night owl. I’m lucky that my best friend is also in a night owl as well and we text often during the night. She and I have had similar schedules for a really long time!

For me, at this point, it seems that having MS for over 20 years now, it’s taking it’s toll on me. It’s difficult to get ahead of the pain now! I was texting with another friend last night and he sent me this:

I responded with:

I fell asleep after texting this but I woke up this morning thinking about it. In essence, I AM falling apart and that scares me. As scared as I am of admitting that I am falling apart, I can’t get this song out of my head! Maroon 5 songs were in my June faves this month in my, “Tunes” tab:

I like this song and remember them performing in when I saw them in concert at DTE energy music theater. This song is not about at at all but I can make it so because these lyrics stick out to me:

As the pain worsens and I can’t get ahead of it.

The speech therapist called me today and left a message for me to call them back. My brother stopped by and hugged me (because we can because we are both vaccinated) and made sure to make fun of my glasses that I seem to be wearing a lot more often now!

This disease progression is scaring me but it’s going to come for me eventually. I also think of this lyric when I think about all of the deterioration of my abilities:

It seems that I have been waiting for 20 years and eventually, I always end up falling. “Falling” in this instance is losing my ability to complete simple tasks.

I knew this picture wasn’t existence and I vaguely remember taking it. You can see my bow biters that I’m pretty sure I rocked at least two years in high school:

And yes, I was in the girls bathroom! Taking pictures?! My students didn’t take pictures but I discouuraged them from hanging out in the bathroom because that is, “Gross!” I used to tell them that they need to stop hanging out in the bathroom because, “People poop in there!” I said that as a teacher who was trying to teach a certain curriculum. I am glad I didn’t know where this picture was when I was teaching, because look at me, doing exactly what they used to do! “Geez Jen, Get to class!”

*But back then, I was, “Jenny.”

I don’t know how many years ago I added my Mom onto my Netflix account but she has access. In the beginning, she was watching random movies where she liked the actor and then she would stop watching it once she didn’t like it anymore. I told her that she can’t choose a movie just because of the actor! I have agreed to watch movies with her and up not being very good! So, now, she runs some reconnaissance for me. She will watch the movie first on her phone and let me know if it’s good or not.

She knows that I can’t control my emotions anymore and I don’t like sad movies. That’s why I watch Hallmark movies all the time! So I think it was a couple of weeks ago when she saw one and she told me that she really liked a movie was new to Netflix and wanted to watch it with me.

I have watched, zBlue Miracle six times now and I am 6 for 6 in terms of crying:

I’m not going to tell you anything about why I cried but it was good tears. Worth the watch! it took me a few times to get over the fact that Dennis Quaid is so old! That and Omar reminds me of my brother, Dave!

She just finished watching a different movie so may have to change the movie I watch this evening.

I’ve been thinking about this a lot lately. I’m reminded of a conversation I recently had with my fully vaccinated son. I don’t remember what we were talking about but he told me that he remembers me loading up my manual wheelchair into the trunk of my car and using the car to steady myself to get to the driver’s seat. I remember doing that as well! He kind of had a look on his face that I understood what it meant. It was a look that remembered abilities I used to have and a look that is somewhat sad because I no longer have them.

I told him that Dr. Elias’s job has got to be depressing! He told me that he doesn’t know that doctor and I said that he probably wouldn’t. Dr. Elias was my neurologist for 15 years. He has since retired and I am going to see my new neurologist who works in the same clinic. He recommended her to me on and I am seeing her this Friday.

I told him that Dr. Elias used to have me walk down the hall and he would watch my gait. He also would have me lay on the exam table and tell me to take my shoes off. He would have me take my left heel and scrape it down my right shin and the same for my right heel. I only remember doing this three or four appointments before he had me stop trying.

He had me stop trying because I was unable to keep my heel on the opposite shin and move it. That was just evidence of my lack of muscle control in my legs. I explained this process to Sean by using my arms as an example. I put them out in front of me and used the heel of one hand to scrape the opposite forearm.

I see that now, as a wheelchair user, I posted a couple pictures on Facebook that were touching for me:

throwing my manual wheelchair in my trunk after shopping was one thing but I will never have muscles like that guy! I do not have that strength at all or even close! I don’t have the possibility of having that kind of strength now either!

MS has ravaged through my body for the past 20 years and it still ravages through my body as I write this post. Even though I cannot partake in the accessibility for a beach, I still want accessibility for wheelchair users who can use it! It’s, just for me, it’s so much more…

I have recently been thinking about a conversation I had with my cousinT, Shannon, and some other people. We were talking about playing instruments and somehow she mentioned that bass players are really cool she kind of pantomimed playing the bass and said that they just are chill and she picked her make-believe bass saying that they are just like, “Bum, Bum, Bum!” I remember that that statement made me laugh but as I watch live U2 music now, that’s totally true! Adam Clayton is the coolest!!! Here are some pictures to prove it:

He is so cool but I can’t forget how much I LOVE BONO!!!:

i’ve got enough love for you too, Adam!!!

Man, these “MS-y” days her coming at me much more often! I don’t think I can handle it! But, the fact is, I have to! It’s a good thing that Big Brother it’s still on point! Adam Clayton is so cool!!!:

I think I need to start off this blog post by saying that my internal clock is completely messed up and I don’t get to bed until about three in the morning so I wake up about noon. Upon waking up, it takes some getting used to to be up and in my chair. As I’m trying to get used to that and get used to how much pain I am going to be in, the level of pain changes from day today and pretty much from hour to hour and if I am being honest, it’s from minute to minute. To wrap my head around all of this, I absentmindedly scroll through my phone, usually on Facebook or Twitter. I saw my nephew post this today and it really made me laugh! I probably would have laughed out loud if I had not just awakened! He posted this meme and tagged my brother (his dad), his brother, and my son. My son‘s comment made me laugh even more.

I remember going to the emergency room on Halloween night while I was seven months pregnant. I didn’t feel well and I didn’t understand what was going on. I had a fever and I spent most of the day on November 1 in and out of coherency. At night, they performed another ultrasound and did some more tests on me.

While I was there, they took a second ultrasound and I was happy to get that picture because my previous ultrasound pictures were ruined. The picture, which was just a profile picture of his head is in a book in my house. In other words, I do not know where it is now. But when the doctor gave me the picture, she told me that his head was in the 95th percentile.

That news shocked me because I was the one who is going to have to give birth to him! I was only seven months pregnant and he had two months to just get bigger. I remember that during my pregnancy, I asked his dad how big he was when he was born. I was 6 lbs. 6 oz. He said that he was about 9 pounds. I saw his birth certificate and he was 9 lbs. 15 oz.. That’s almost a 10 pound baby!!!

I ended up having an emergency C-section on November 2, 2001 at 9:38 a.m. he was only 4 lbs. 11 oz.When his dad‘s brother met him in the hospital, he said that his head looked like it was the size of an orange. He was little and stayed in the hospital for 31 days.

As he grew, my brothers would comment and his head. It was getting kind of large. I told them that his head was in the 95th percentile while I was pregnant with him and he needed somewhere to put all the brains that he had! They would constantly quote So I Married an Axe Muderer:

I had begun to notice that I could not put cute little baby hoodies on him. They did not fit over his head. He wore Zippys and stand. Also, when I would buy his winter coat every year from Target, I would have to look through the hats and gloves section and hide behind and display rack and try the hat on myself. If it fit my head, it would fit his!

For his third Halloween when he was just going to be four, he went trick-or-treating as an, “An Army guy.” We went to Harry’s Army Surplus to get him fatigues. I got him pants and a jacket and I asked the salesman where are the hats. He told me where the kids hats were. I told him that I needed an adult hat, size 7. He looked at me kind of funny and went and got a size 7 hat and opened it up and put it on Sean‘s head just to humor me. He was surprised to find that it fit him! I told him that I used to work in an athletic apparel store and I could gauge the size of peoples heads when they asked for hats.

I never thought that Sean‘s head was overly large, he was just my beautiful baby! It wasn’t until he was running around in my parents’ house with my niece and nephew when I realized that it might be a bit big. The kids were running around and ran behind my Dad’s chair between the back of the chair close to the wall and Sean was running and bringing up the rear. I think that all of the other kids knew enough to crouch down do you fit between the largest Space between the chair and the wall. Well, Sean, being the youngest just ran through the space between the wall and my dad‘s chair. His head got stuck and my brothers still have not let me hear the end of that!

His head size gave him an advantage the first year of wrestling. Because he could use that as leverage to overtake other small wrestlers. My brothers do not let me forget the things they would say about Sean when he was small and his head size but I think he has grown into it nicely! It doesn’t look super big anymore! But his comment on my nephews post made me laugh the most, He wrote, “Feels good to be recognized! My babe! He wears a size 7 1/2 for fitted hats and working in retail, I have seen larger heads.