Yesterday was my annual appointment with my neurologist. From the second I opened my eyes, I felt tense. My Mom came into my room to help me out of bed and asked what was wrong. I told her that, “I’m nervous!” She asked me as she grabbed my ankles, “What are you nervous about? Are you afraid they are going to tell you that you have MS?!” I had to laugh at that! There was really no reason for me to be be nervous.
My Mom has described my neurologist as, “Kind.” She really is! It’s not that my other two neurologists were not but it’s comforting that she IS. Historically, I have only gone to the neurologist once a year because my insurance counted those visits as specialty visits so they cost more. But now that I don’t work, I am on Medicare and Medicaid because I am disabled. Maybe I can see her more to monitor the progress of my disease.
She filled all of my necessary prescriptions and my prescriptions for durable medical supplies that I need at this point. Overall, it was a really good visit! She asked me if I have any new symptoms and I spoke of my swallowing difficulty and my speech problems at times. She typed a lot of things into her computer and told me that I will receive calls to schedule a, “Swallowing test” and a consultation with a speech therapist. She told me that based on those results, they may suggest diet change and can possibly pay for my protein shakes because that is what I drink for both breakfast and lunch. She also told me that I will receive a call to schedule an MRI. At the end of the appointment, Suzanne came in. She has been my MS nurse for a very long time! She will be retiring next year.
After the appointment, we stopped and got Swarmmas because they are delicious and I got a mini thin mints blizzard because that is also delicious! After that little bit of excitement, I had to get home. This heat is killing me!!! My blood pressure was a little elevated because I normally am a 90/50 but it still was within a normal range. I was the last appointment in the neurology clinic and was the only one there. Because everything is so different with checkpoints and stuff. Maybe that was the cause of the elevation and my blood pressure. But let’s not forget that this heat is KILLING me!!!
I awakened a little bit early this morning and I need to address a couple of things: I saw a post on Facebook that showed the Festival of Redheads that takes place in Ireland!!! I loved it and shared it and commented:
I love seeing that because I have always wanted red hair for my entire life! Check out these pictures!:
The fact that this was in Ireland just made it even better for me! Imagine how that sounds?! All of those Irish accents!!
But then, I was texted that to aunt Uncle which is also something extremely dear to me! And reminded me of why I will NEVER get on a commercial plane again! I started reading this article and began to cry and I continued crying for a while after I finished reading it!:
I couldn’t copy the picture but I heard you all to click on the link and read about the treatment of wheelchair users! I also cried because I will never be able to witness the Festival of Redheads! Anyone with access to a private jet, if I can borrow it to go to Ireland for in the Festival of Redheads (even though I do NOT have red hair) that would be great!
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!”
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 saw this video in my YouTube feed because Big Brother KNEE that my soul soul needed this! I had never seen this version of the video before but I have since been trying three or four times to put the video here on my blog and it’s not allowing me. This is what it says;
So, I put the official music video here see you can hear the song that my soul needed to hear! A song that brings back vivid memories of living in my dorm room on the fifth floor of Harvey Hall and driving my car down E. Pine Dr. to get off campus. This song, for me, chronicles at a time when I was carefree and didn’t know I was taking things for granted. You know, things like walking and driving.
This song takes place long before the Reality and pain would rtt in! I left Western’s campus for the final time a few weeks pregnant and I didn’t even know it yet.
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!!!
U2 – bass player Adam Clayton performing live on the Vertigo Tour at Twickenham Stadium Twickenham UK – 18 Jun 2005 – Photo by: George Chin
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!!!:
He put this picture on his Snapchat story and said, “My Abuela spoils my dog!” But let me just set the record straight and say that it was ME who bought Leia the raincoat! I bought it last year when she first came to us after a Facebook friend and former colleague posted this picture of her Mazzie:
As soon as I saw that picture, I got on Chewy and HAD TO order one for Leia! I don’t have a daughter and I will never be able to buy pink clothes and have them in my house and I hope that grandkids are far off still so as my grand dog, she deserves the best! (and she fills the void). I can buy her pink things!
Leia wasn’t having anything to do with the raincoat last summer and I told Lynn how disappointed I was because she wouldn’t wear it. She told me that it took a while to get Mazzie used to it as well.
So this year, Leia has decided that she dislikes the raincoat LESS then she dislikes the rain! She didn’t go out for walks in the rain last year but now that she’s older, and she will put the raincoat on, and take a walk in the rain. My Mom tells me that she hops over the puddles like a “Little pony.” That is some thing I really would like to see but I can’t believe it because I have seen her hop around the backyard like a pony.
Sean said that it looked like Leia was not having any part of the raincoat! My Mom sent the photo to her sister and my aunt said that we should teach her how to smile. I spent yesterday calling her and saying, “Cheese!,” and smiling. It didn’t work. She didn’t want any part of that either. It’s a work in progress and she’s still young!
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.
