I have been listening to this song a lot and my mom does not understand why but I’m feeling kind of melancholic as my disease progresses and the weather gets colder… here are my tunes of choice:
I absolutely love the lyric, “Tug at my seams”:
Melancholy or not it is October 1 and I have a movie to watch!!!:
I pillaged today like I do every Saturday:
It takes me over an hour to pillage each week now. It is tiring. Beyond tiring when yesterday was ‘go time’ which in this case, that’s what happened. but it’s done and I go back to see Dr. Clark on October 16. He probably will change my supplements again!
I’m really NOT digging this disease progression but I saw the pain clinic yesterday and I am getting a new tens unit and that makes me happy! This doctor wants me to get another x-ray because I haven’t had an x-ray since 2019. I will call the lab on Monday and I think that I can go in before we go to the Cidermill on October 17th.
But I remember the last x-ray I got at Henry Ford, it was in the emergency room downtown, and the doctor could not believe that I had a hardware in my knee! I told him that I had ACL reconstruction in 2000 and they are ‘metal buttons.’ It was strange to tell that to a doctor I must tell you!
I think that I am a little bit overwhelmed. I feel accomplished though, but this was difficult! I told myself that I needed to make three appointments for next year. I called yesterday and made my Internist appointment. And then today I made two specialist appointments. One for a procedure and the other one for a consult. My procedure is in January and my consult is in March. I am getting my teeth cleaned in February. That is one month too early. Actually two months.
I think that I am a bit overwhelmed because this seems to be getting more and more each year. I am seeing Dr. Clark on the 16th. That’s new as well! In February, he told me my nutrition was good and then things started changing and I am seeing him every month now. My supplements change each month.
I have told my Mom that I have never had MS this long and it’s ALL new to me! So, I spent the past couple days, making appointments and getting my teeth cleaned. Maybe that’s what’s bothering me! I have been getting cleanings every six months from my entire life but now I am sick so I need to go every four months. I never saw this coming to this extent!!!
It’s just overwhelming! But I did see on the Hallmark Channel, a double feature! Two of my favorite movies! I turned it on after I went to church from last Sunday and A Country Wedding was just starting and then it went right into October Kiss. I was hoping for a triple play and I was waiting to see Harvest Moon but that didn’t come on and I stopped watching TV and took my contacts out. Now I am listening to music and trying to decompress.
My Mom and I got our teeth cleaned today at the same dentist office I have been going to since I was seven. I also had my braces through this office. They were a orthodontist back then as well! Sean even goes there as well. He was three when he started going there. I remember that I asked Dr. Fox one time when Sean was getting his teeth cleaned if he needed braces and he just said, “Yes.”
Sean was probably six or seven at the time, and I told him, “It looks like I’m going to have to spend as much money as my Dad did!” Because I have known my dentist for so long, said, “Oh, you don’t want to spend that much money!” Three of my older brothers, and I had braces through that office.
I have had my hygienist, Kristin for a number of years. She had worked at Dr. Fox‘s office previously and then came back. I took x-rays today and she told me that my teeth are beautiful. Dr. Kassem said the same thing. Teeth are very important to me, and I liked hearing that!
After my x-rays but before Dr. Kassem came in, Kristen let me know that there was some tartar on the right side of my lower jaw in the back. There is also tartar on the bottom front teeth as well. She asked if I was still using an electric toothbrush, and I said yes. She said. She saidthat she knows that I am trying, but she suggested that I come to the dentist every four months from here on out.
Hearing that startled me beyond anything!!! I told her that it is becoming a little more difficult to floss now. Sarah came in and took my chart to write down our return date for our next cleaning. I talked about the four-month thing with my Mom after I came out of the room with Kristin because my Mom was already finished.
After my Mon got me locked into the van, and we were driving away, she told me that my Dad got cleanings every four months. I was totally shocked, and I told her that I have never known that for my entire life! She told me that she used to take medication before each cleaning, and I told her that I vaguely remembered that, but I did not know that he was going every four months! I guess that just proves that I’m sick now. Like I haven’t been for the past 23 years but that’s kind of hurts a little bit…
As I am sitting in my chair in my house, am thinking about all of this. Kristin told me that my insurance only pays for two cleanings and an x-ray each year. I would need to pay out-of-pocket for my third cleaning. She said that it is not an exam and you don’t need x-rays so it will only be $105 out of pocket.
I talked to Sean tonight about it and he said that I probably should go because having problems with my gums, which Kristin said were a little bit Inflamed is not some thing that I should mess around given my current health situation.
I think I will call and make an appointment for January I guess… I have an appointment with the pain clinic for my knee and after that, I am getting my flu shot in the same building and then that’s it for September! I also have a Visual Field Test on October 1! So much stuff!!! #MSsucks!!! 😒😒😒…
So, I started another preventative measure for my urinary tract health. For 10 days, I took 10 drops in a tablespoon of water four times a day last month. Now I just take 12 drops in the morning when I wake up and 12 more drops at night before I go to sleep. My Mom puts it in a one cup measuring cup that I have. Before I would drink it, I would smell something. Something chemical. Something familiar. I couldn’t put my finger on it! I asked my Mom and she couldn’t identify it either!
Sean stopped by a couple weeks ago to get his suit coat and I asked him to smell it because it was familiar but I couldn’t recognize it! He opened the bottle and took one sniff, and he looked at me and said, “The breathing treatment.”
THAT’S IT!!! I knew it was familiar for a reason! Since he has told me that, I’m trying to wreck my brain to remember what I did. I remember that I gave him breathing treatments when he got home from the hospital and I’m not sure how long I did it for.
His lungs were underdeveloped when he was born and the breathing treatment would strengthen his lungs. I want to say that I started doing it every other day or maybe it was every day in the beginning. I’m not even sure how long I did it for. This is a 23-year-old memory. Sean will be 23 in November!
I remember the nurse explaining to me about putting the albuterol into the breathing machine and she also told me to take him into the bathroom with the hot water running full blast. She said when the room got steamy, I should turn the breathing machine on. She warned me that he may not like it. He may cry. But then she said that that’s good for him because the medicine will get deep into his lungs that way.
I had totally forgotten about this until Sean remembered ‘the breathing treatment.’ The nurse told me to just take him in the bathroom in his diaper so his clothes would not get soggy. it took me a moment to remember, but I clearly did when I thought about it. I would sit on the toilet seat with Sean in my lap with the shower on in my Parents’ house.
The breathing treatment machine was only on for minutes before Sean would start to cry every time, and just after he would start, I would, too!!! I’m not sure how long we had to sit there maybe 15 minutes? It was the longest 15 minutes at that point in my life! Just like the 31 days he spent in the NICU with the longest in my life as well!
I really can’t believe that I did all of this when I was so young but I did! That’s blowing my mind! But now, I take that medicine daily for myself because #MSsucks but I knew it smelled familiar, but I could not place it. I really can’t remember that now. But I remember that it was difficult!
I have been using my Fall flavors since September 6. It has been crazy that it has been 80° outside. I am most comfortable using my fall flavored chapsticks:
I thought it was going to feel like Fall sooner than it has been. It has been 80° all week long and I’m rocking my A/C. Today it’s raining and I don’t LOVE that so I looked at what next week forecast will be because I am leaving the house twice:
I’m leaving the house on Tuesday to get our teeth cleaned and then I am leaving again on Friday to go to the pain clinic for the first time at Henry ford health system because I need a new tens unit and then I am going to get my flu shot. I am really hoping that I will feel the Fall breeze either Tuesday or Friday.
But even if I don’t, come October 1st, it’s Pumpkin Spice because I will have a movie to watch after I go to my Visual Field Test appointment (I haven’t had one for a while and I’m a little nervous what it will show).
I woke this afternoon to this email:
I am so groggy in the morning. I thought I could just answer the prompts in my email to appeal my suspension! Yeah, that wasn’t going to happen. I even showed my Mom and thought she could talk me through it. It was not happening!
I thought I could do it after I pillaged as well. Yeah, that’s still not happening! It’s not really a big deal though if I think about it. I have only been on Facebook for seven years I think, and now, the only things I share are my inspirational thought for the day that I get emailed and memes for encouragement to get me through the day! I also wish people Happy Birthday, but Now, I’m not even getting alerts on the day so I am wishing people a happy belated birthday.
But, I share my blog posts on Facebook, and I think my Facebook friends are pretty much the only ones reading them. I guess I will have to fix it, but I don’t think that’s going to happen today! To use one of my oldest brother’s phrases, I DEFINITELY feel attacked!!!
This morning, for the first time since probably 2011, I had, “Naked water.” I have been drinking lemon infused water since probably 2011. I remember writing about DoTerra when I first started my blog. That’s the company where I get my OnGuard essential oil toothpaste and lemon essential oil in a little bottle.
We ordered it a couple weeks ago I think when my Mom got paid but it still has not come. It usually takes a week to come. My Mom called this morning and it should be here tomorrow. It is the weirdest thing in the world to drink, “Naked Water!”
My first Yeti has lemon in it as well as silver. My next Yeti is just naked water. I drink roughly 2 30oz Yeti cups of water a day. It was startling to start off with naked water this morning for sure!
The woman said that it’s supposed to come tomorrow. Tomorrow is ‘go time’ so we’ll see. I appreciate having the silver in my water as well because that makes my teeth tingle. I am getting ‘dosed’ for a number of things tomorrow. Three or four things. I wonder when this disease progression will slow down… if it ever will?!
I saw this and shared it on Facebook and it absolutely made me laugh:
That is exactly how I feel! I cannot wait until October 1. But I have NOT left my house since July 21. I am hoping that when I leave my house on September 18 for my haircut, I will smell Fall!!!:
Sean told me today that he heard that the 2023 summer was the highest on record only to be surpassed by the 2024 summer heat! I told him that it’s definitely a lot more unbearable than last year and last year was a little bit tough.
I have been living in my memories for eight years now. Since I stopped working. My Mom and I didn’t find out that I am”Homebound” until December of 2023. I was going to be accepted into the HAP Senior Plus insurance plan because I have been disabled for so long. I no longer make my own memories and just look back into the catalog of my more able bodied times.
I had a doozy of a memory this morning as I was sitting in my bed waiting for my Mom to transfer me out of it!!! it was complete with a soundtrack!!! I heard the opening bars of this song as I saw in my head this scene:
And this is the song that played in my head as I was sitting in my bed waiting to be transferred:
Well, this song was released in 2015. I was still working in 2015! I was the Reading Specialist already for the school. I was still actively working out at Barwis Methods back then! I saw that scene in my head but my memory of that book is different.
I was teaching in my last classroom at that time, a converted closet off of the cafeteria as the Reading Specialist, I always would let my students catch me reading (something I learned specifically in college). I would read between classes. As students would come in, they would see me reading.
I remember that I specifically bought this book because the movie was coming out and this is the actual version of the book that I have:
I was reading the specific part where they go to the horse races, and he is in his power chair, and I knew it was going to be a disaster! As I was reading the words, my eyes started welling with tears but the bell hadn’t rung yet and I had to finish the paragraph.
The memory I had of this song, and this movie was about the book I read and cried in front of my students! They were so concerned, and they asked, “Miss, are you OK?” I remember wiping my eyes and telling them that, “You know that it’s good writing when it emotes emotion!” I was not embarrassed to cry in front of them at all, but one thing that this movie points out is the fact that disability is for the rich!!! I do not have a stable to convert to an handicapped accessible apartment!
Waking up is very difficult for me now, but I’m so happy that I had such a vivid memory to focus on to help me wake up! I am not sure that I will rewatch that movie for a while because it’s kind of tough as a person in a power chair and I am absolutely NOT rich!!!