Month: August 2021

Realization

I came to a realization had about 3:30 this morning as I was trying to go to sleep. This realization that I came to caused my pillow case to get wet from my tears. I realized that this year, I can no longer have my Super Bowl food. Chewing has become that difficult for me. I can no longer celebrate my favorite holiday! (Super Bowl)

I cried about it a little bit today as well. I think this realization is just the tip of the iceberg of things I need to deal with and I feel that I am heading into a crossroad in the progression of my disease and I don’t know what to do. Last night, (or this morning), I flipped my pillow over and continued to try to get some sleep…

Oh, How Times Have Changed?!

Recently, my Mom and I were talking and she asked me when I started waking up at 4:30 in the morning to get ready for work. I thought about it and I told her that I’m pretty sure I started waking up early in 2009 when I bought my house. She kind of thought for a moment and marveled at the fact that I seriously used to do that every single weekday!

We were quiet for a moment after we both realized that I seriously would wake up at 4:30 in the morning! We were silent just for a minute and then we both started to laugh! I could not ever imagine waking up that early in the morning now! It’s crazy how much times have changed! I never thought it would be this much change but here we are.

My Mom called the office for the speech pathologist today. I gave her my medical record number and she did the talking. The woman does not have availability until October at about noon. My Mom explained how we need appointments later in the day. So my appointment with the speech pathologist is November 9 in order to get a decent time slot.

We will just need to make minor adjustments to our routine. I just well wash my hair the day before my appointment. That’s another thing that has changed! For my entire time working, I wash my hair every single morning. Actually, I will take that back. There was one day when my power was out for a week and me and Sean had to stay in a hotel.

It was before I got my generator and I remember sitting in the teachers lounge at lunch and talking to Mr. Cooper. He asked me how it was going with me not having an power. I looked at him and pointed to my head and told him, “THIS is dirty hair!“ I remember him laughing and telling me that it didn’t look bad. Well, I will go with that and go out in public with my hair not being washed! But I’ve already done that a few times at this point.

It is really CRAZY how timed have changed because I used to wash my hair every day and now I can’t even wash it myself!

Pierogi and Sour Cream?

I’ve really been thinking about this since my swallow test last Thursday. But before I say seriously write about this and all of my concerns regarding my chewing abilities, I first need to write about it using my inappropriate humor before I think you read about it seriously.

i’ve been drinking my breakfast and lunch for a while now but I am extremely concerned about my chewing abilities these days. Sean came over yesterday and brought pierogi from Sabina‘s. When he brought the food in, I explained to him that he should cut the pirogi in half and put that in the largest Pampered Chef bowl and bring me a fork.

He did just that and brought me milk to eat. We sat and ate and it takes me a lot longer to eat now! He brought me a ramekin of sour cream. He ate the food and we talked. I couldn’t believe how long it was taking me to eat potato pirogi! Chewing is seriously an issue for me now!

I asked Sean to bring me more sour cream as I was finished with that and still had pirogi left. He got it and said to me, “I can’t believe you are ruining a good pierogi with sour cream“ I started to laugh and explained to him that I am NOT Polish! It was his turn to laugh and he said yes he put more sour cream in the ramekin, “You Mexicans LOVE your sour cream!”

We both laughed for a while because he is Mexican to! When I was first introduced out to pierogi, It was served with sour cream and I really like it! Seriously though, the speech pathologist told me last Thursday that I should use lots of sauces and gravies when I eat to make what I am eating softer and easier to chew.

I really don’t like thinking about that because there’s so many foods that I no longer can enjoy but I would used to laugh at Sean and me having differences in the evening pierogi because I can eat that! I just think that from now on, my pierogi needs to be cut in fourths so it’s easier for me to chew. But for now, I will just laugh about pierogi and sour cream instead of thinking about my loss of ability to chew.

Another One

I finished this tube last night. I use it for as long as I can but when it’s completely used, I feel in enormous sense of accomplishment! It’s all about the simple pleasures! As per my appointment on Thursday, chewing is an issue more than swallowing. I need to take the victories where I can get them it seems! I like using up all this Chapstick though! There is something so silly about sing in as an accomplishment to use a complete tube but it makes me feel accomplished as well!

I was wondering which Chapstick I would use first and because the weather is so warm out still, I still have some Summer flavors left and I am going to use it until they’re gone, or until my fall and winter flavors come in stock at Target!

I i’m choosing to see this as an accomplishment and I find some satisfaction in that;

The Caveats

So, I had my appointment yesterday with a speech pathologist. I was extremely nervous because in the 20+ years that I have had MS, I have NEVER had an appointment with a speech pathologist. I tallied up the amount of doctors I have seen in my mind once and I think I have seen a total of 20 different doctors.

The nurse who came to get us was very kind and I found out that I am “Birthday twins” with her son who is 20 and the speech pathologist was a kind young woman and she will be the speech pathologist I see from now on in Dearborn. We will call on Monday to set up appointments for me.

She explained to me what the test was going to be like and I maneuvered in my chair to the proper place between the x-ray plates and facing a glass window. A doctor came in and sat at the desk that was on the other side of the window. I had brought my own mugs because holding cups is difficult for me and I did not want to spill things.

She told me that I would be drinking barium and that barium, “Is not the worst thing in the world you will taste but it is not good!” After all the tests we did, I believe her! I was so nervous about the test that as things started, she had me take my mask off and smile. She commented on my nice smile and all I could say was, “Thank you.” I couldn’t even make the standard joke of my Dad paying a lot of money for it!

Before the test started she had me open my mouth, say, “Ah,” stick my tongue out and push my tongue against the inside of my cheek against her finger. She also had me lick my lips in a circle first going one way and then the other way. That was difficult too!

After I drank the NOT good tasting barium, she spread it in pudding form on a graham cracker and had me chew that. When the testing was finished, she had my Mom come back into the room and she showed me the video of me swallowing. My Mom was extremely fascinated because it was kind of cool! Too bad that barium tasted gross!

So, in sum, we talked about getting a prescription for protein shakes because they are so expensive but she’s not the one to prescribe it but she agreed. She told me to stick with the soft foods that I have been eating because as I said before, proteins shakes for breakfast and for lunch, “And a sensible dinner.” (Slim fast commercial from the 80s). I got the test results back today on my chart and the test results are: “Normal.”

But, let me tell you that there is NOTHING that feels normal about me chewing food and swallowing these days. We will see how my appointments for the speech pathologist will work. The test also said that I have an, “Oral delay” but as she described to my Mom and me as we watched the x-ray video that she could tell it was, “Effortful.” I had never heard that one before but it’s kind of like the first time I heard the priest say, “Worthily” that I never thought was a word until I heard a different priest also saying that word!

Looks like EVEN more appointments are in my future!

Passing Me By…

I’m not sure if it’s the rain or me recovering from my day out of the house yesterday but I realized as I listened to music and scrolled through Twitter that so much of my life is passing me by…

I saw the Tweet which made me so sad!

Did I really miss Nate‘s sendoff?! The show that I IMMEDIATELY came to LOVE and it got me through time off work because of my knee injury and subsequent recovery from surgery.

But I think the REAL downside of being diagnosed so young (I was 18 and 7 months after my high school graduation and not even complete with my first semester of college) is that 20+ years in, it hurts so much and SO MUCH of my life has passed me by!

I had a conversation with someone once about the need to have, “A person” (Grey’s Anatomy reference) and the fact that I don’t want to involve anyone or expose them to my misery and hardships.

And I’ve really been hearing this song often during my Sara Bareilles immersion:

There is NO, “You” because MS has made sure of it and that’s a very sad realization end it emotes tears on my part!

Special

Today is an extremely difficult day! I have been in excruciating pain from the second I woke up. It felt like my body was just a bag full of liquid and bones. I prayed and pled with my God that the pain would go away! I constantly changed the position of my wheelchair trying to find a comfortable spot. My hip bones were killing me.

It took hours for me to feel well enough to finally have my Mom wash my hair at about 630 this evening because I have my swallow test tomorrow in the afternoon.

I constantly heard this song in my head and remembered a classmate making me a mixed tape of his favorite songs off of Janet Jackson’s “The Velvet Rope” album. He was a big fan of Janet Jackson!:

I would really like to feel “real special” instead of how I feel right now.

“Movie Marathon”

I shared this post on Facebook yesterday:

I added my own comment though:

A friend of mine once explained to me that his dad used to take him opening weekend to see a movie after his parents’ divorce. I thought that was an excellent idea to make good memories with Sean as my physical abilities were diminishing.

Sean and I would seeA LOT of movies and its opening weekend! We would see previews for upcoming movies and instead of having him choose between two, we would have a, “Movie Marathon.”

A, “Movie Marathon” is when we would see two movies at the theater in one day. We would see the first movie earlier in the day at about 9 o’clock a.m.when tickets were discounted! We then would eat movie theater food, refill our popcorn, and then watch a second movie. I would buy the tickets to both movies in the morning when we got there so we could just eat our lunch and go to our second movie. We would get to the movie theater when the sun was just rising and the sun was setting when we left.

I think we may have only had three or four marathons before my abilities diminished too much for me to drive and to go see movies.

We still talk about it today! I have told Sean that it was fun growing up with him! Just today, we were talking on the phone and he mentioned some kid show he used to watch that WE would watch together. He was five and we just got into our second apartment when I could afford to get cable TV. He wanted to watch Nickelodeon and Teen Nick but he was still just six years old so I decided that I would watch the shows with him to just kind of make sure it was okay content for him to watch. We would watch TV together at night.

I became completely involved with all of the shows we were watching and like I was a child. We were just laughing about one of the TV shows today because I remembered the episode he was talking about!

I definitely have TONS of memories with Sean because I have never had a lot of money as a teacher and single mom but we made it work. I will say though, there was one Christmas that was a really cool! I got Sean the Tri Bot!!! That was pretty cool to have that memory on top of all of our other memories!

This is my favorite picture of me and Sean because I can’t find a picture of Tri Bot right now but I updated my post and I have since found it but I still love this picture of us, my Mom took it and we were at Barwis! 💜

67%

I recently read an article about Montel Williams. I don’t even remember why I started reading it because I don’t like reading information about MS on the Internet Because it is so depressing!

It was a short article and the one thing I remember reading is that Montel Williams drinks 90% of his food. It talked about protein shakes, vitamins and supplements. The article actually made me feel a little bit better. You see, I drink 67% of my food. I have a protein shake for breakfast and 14 shake for lunch. Dinner has begun to get a little more tricky. I’m having difficulty chewing and swallowing food.

I have a swallow study appointment with the speech pathologist. I don’t know what this test really entails but I’ve asked my MS groups and it’s Swallowing things with different Consistencies and I understand that there is barium in whatever I am swallowing. Barium is visible and an x-ray.

This test is taking place on Thursday which I think is going to be a good thing because Thursday is my FAVORITE day of the week! I don’t know if that will have any bearing but I do know that chewing and swallowing has become quite difficult for me now. So, I’m nervous. But, Montel was diagnosed just before me and he is at 90%. I still have some ways to go but this is looking like this will be the the place I am headed.