Last night, just before my Mom was going to get me into my bed, I continued giving her facts about my time in the neurology clinic at Henry Ford. I have spent the weekend piecing together the past 22 years that I’ve had with the Neurology clinic. She was walking into my room and she told me, “You’re really unsettled about this!”
As she walked toward the living room, where I was sitting, I could feel tears stinging my eyes, and I looked at her incredulously! With my eyes bugged out, I said, “Something that is supposed to be seamless and look at this?!”
Today, when my Mom got me up, she told me that Dr. Cerghet’s nurse is named Sarah. I had talked to a woman named Karen a couple years ago. Suzanne was Dr. Elias’s nurse for 16 years so she knew what was going on with me!
I had reviewed with my Mom all of the pertinent information which my Mom pretty much knows! My Mom was able to make it so the virtual appointment I have in August still stands and she will tell Dr. Cerghet what she needs to sign. (the prescription for my new power chair)
When my Mom told me that, I wiped my left hand across my forehead, and said, “Phew!” my Mom looked at me and asked, “Really?! That’s all you have to say?”
I thanked her for handling my business and I told her that I don’t want to be haughty?! And then we both laughed. I am so grateful that everything is working out because I am making sure that it does!!!
Every single day, with MS at this point is a completely different experience!
Case in point:
I tried to hold onto the good feeling from yesterday, but today, it’s raining, ALL. DAY. LONG, and my body sure feels it! It’s one of those days where too many tears are leaking out of my eyes as I am silently pillaging. But I know that it is story time, regardless of how I feel so here goes:
I will begin this story with a 23 year old memory of me being admitted to the hospital because I was having neurological problems. The details are hazy, but I remember my Mom coming into my room after the doctors had left from doing the rounds. She walked into my room, and kind of was aghast, “The doctors came, and I wasn’t even here?! Did you ask this, this, and this?”
I just looked back at her calmly, and said, “Yes, and I asked this, this, and that!” When I told my Mom that, she just kind of nodded and said, “Well, okay then.”
That was in December 2000. I have been in the SAME neurology clinic since then! I have stayed with the same neurology clinic the entire 22 years! I have done all of the tests! All of my hospital records are at the same hospital, the one I was born into, and the one I was diagnosed with MS in.
My original neurologist, and his nurse have both retired. Dr. Elias handed me over to Dr. Cerghet which is my current neurologist. I emailed with Suzanne, Dr. Elias’s nurse often! She really had a handle on my case!
Let’s fast forward to today where I have had MS for 22+ years. I have a handle on what I am doing! it is, by far, not easy at all, but I’m hanging in!
I was still teaching when I was fitted for a custom manual wheelchair and the same occupational therapist fit me for my first power chair.
Christie has left so Dave is my new wheelchair tech and he was with Diane to fit me for my new powerChair. I got fitted at RIM (Rehabilitation Institute of Michigan) in Detroit they are affiliated with the DMC.
My sleep schedule is completely messed up now, so I changed over my contact phone number to my MIchart to my Mom’s phone number because I sleep most of the morning!
So, yesterday, my Mom came into my room just when I awakened to tell me about Dr. Cerghet’s nurse called her to tell her that I need to reschedule my Neurology appointment because I need to get fitted for a new wheelchair.
But here’s the thing, I got my powerChair through the DMC because I had my second knee surgery at the DMC because I was working out at Barwis at the time, and Mike Barwis hooked me up! My second surgeon was the Pistons doctor at the time, Dr. Frush.
When I was injured, I called Henry Ford but they were making me wait weeks or something to talk to orthopedics, whereas Mike Barwis had me an appointment within two days. I could have gotten it the next day, but that was at the clinic he worked at far away, but then he was in West Bloomfield the following day.
So, my Mom received a phone call yesterday about me getting fitted for a wheelchair, but I have already done that, I did that back in June. I just need her to sign the prescription!
My August 4 virtual appointment that Dr. Cerghet wants to change is just my annual appointment. I’ve already done everything for my wheelchair! I told my mom to let her know that it took them 2 1/2 hours to fit me for my new chair!
My Mom tried to call Neurology back on Friday, but she was not able to get through so she will call on Monday to set the record straight! I am confident that my Mom will straighten it all out!
The woman said that we were confused, and my Mom responded, “We are NOT confused! She told the woman that I made the appointment back in April and I have already taken care of my wheelchair.
I’m kind of startled that in the past 22+ years, I have not experienced any red tape like I am now!!!
So yesterday when my Mom told me about that phone call, I thought of Beyoncé because this woman doesn’t know about me, but she also doesn’t know about my Mom either and my Mom will handle it!!!
Wow! Recounting all of that stressed me out and with the rain it makes it even worse so I guess I have to be reminded of Beyoncé again right now!!!!:
Last night, as my Mom was helping me into bed, she let me know that I am very high maintenance! I started laughing and corrected her, “I am high standards!”
My Mom has to do A LOT to get me situated into bed and I completely understand that at this point, I am DEFINITELY high maintenance because she has to elevate my feet because of my pressure sores that will never go away, I mean that the skin will always be compromised for the rest of my life, I but I used to tell people in my youth that I was, “high standards”
As she was leaving my room after she massaged my feet with the massage gun that my brother got me because I don’t sleep with my compression socks on, I called out to her, “AND I am only getting MORE sensitive!!!
Because I am! This weather is completely killing me!!!
My Mom had a story for me this morning when I awoke! As she started telling it to me, I instantly thought of this song:
I have never seen this video before and I cannot believe how young Beyoncé is, but all I saw in my head was Mr. Latour coming into my classroom singing it. I can’t remember the funny circumstances or the joke around it but I know that I laughed!
Rather than re-counting the story, my Mom told me this morning, I am just going to live in my memory of Mr., LeTour, singing Beyoncé even though I don’t really remember the exact circumstances, but I know at that time I was teaching English, still walking, and still on crutches? Or I hadn’t been wheelchair-bound that long yet.
I will write the story about what happened today, tomorrow. For today, I am just going to live in my more able-bodied time and make it a good day!
I think that I have finally accepted that I am homebound. My life is 100% routine and it does not vary. So I only leave my house for doctors appointments, haircuts, and the dentist. We are going to the dentist on August 1. Because I do the same thing every day, I have noticed that in my humdrum days, there is a message to my madness.
For example, this is how I spend my attention:
So, this happened yesterday and it got me thinking…:
So, this is my spring flavors of Chapstick. I left the pomegranate on the left because there’s just a little bit left and I wanted to start my cucumber mint chapstick. I will save it for after my PCP doctors appointment that’s at the end of September, so I can be ready to unveil pumpkin spice on October 1 when I watch Hocus Pocus.
I only have one tube of cucumber mint, and I have one tube of strawberry sorbet that I only use on Saturdays because I tried it out last year because I liked the name of the chapstick but it does not taste as good as I thought it would. But I have to use it all up!!!
I have thrown out only three completely unused chapstick tubes since I started keeping it in these gum containers that my brother bought me in 2020 because the chapstick tasted too waxy and the first unused chapstick I threw out tasted a little bit rancid.
It looks like I will need to buy another box of spring flavored chapstick, but I won’t do that until NEXT spring I think.
My Mom left to get her hair done so I am at my house alone. I thought to watch Love and Other Drugs because that’s really not a movie for my Mom but I love it!
Sadly, it is not available on any of my streaming platforms and I don’t own it yet, so then I thought of the next best thing I have been thinking about this recently so I decided to watch it, even though I am 41 years old and by myself. I HAD TO watch Pocahontas!!!
Sean butt dialed me while he was working and I texted him this just the same once the movie was over, and I sang the entire time that I watched the movie!:
I was home alone, so it does not matter how I sounded! I still know all of the words and I have for 28 years now!
It was so familiar to watch, and I found myself sitting in my Parents’ house watching it. It has been a while since I watched it so watching the ending and hearing her sing the line, “Eagle help my feet to fly! Mountain help my heart be great! Spirits of the earth and sky, Please don’t let it be too late!”
I am not even ashamed to say that I cried while singing it because I did! I say those lines anytime I am in a hurry, and I need something to happen quickly!:
When I turned my TV on, it was on the Hallmark channel and I saw the last 20 minutes of the second movie to the Nine Lives of Christmas! I’ve seen that movie so many times, but I had to see the happy ending where they get engaged and adopt the kitten together!
I guess that ‘Christmas in July’ movies is a thing now?!
My Mom told me that we would watch Chicago today but today she decided to change her mind so it is a change of plan.
We watched LastChristmas. I know that it is NOT Christmas time but the whole ‘Christmas in July’ thing and I watched the tail end of Nine Lives of Christmas on the Hallmark channel the other day. Everything’s crazy now, so it doesn’t matter!
Sleeping is an issue these days, so I go down the rabbit hole of scrolling through videos but with the writers strike, it’s getting a little bit more difficult. But I stumbled across this one at about 4 o’clock this morning. I shared it with my Mom and I think we will watch Chicago tomorrow…
My Mom and I watched the first Narnia movie a few days ago. I haven’t seen it in so long that it was like watching a brand new movie. I liked it because I remember watching this with Sean when he was 7 or something?
But at the very end, when Aslan is giving everyone their crowns, he crowns Peter last, and he says that he crowns him, ‘Peter the Magnificent.’ When I heard that you know that I thought of our second apartment and when u2 was on Letterman all week:
But here’s the thing, on Monday of that week, I stayed up to watch letterman, even though it’s past my bedtime because I had to work the next morning but that Monday I realized that at 26, I am too old for their target audience, and I didn’t find it funny at all!
So, I just had to adjust my game plan. I set my alarm for 10 minutes before the show was over so then I could wake up and just watch them perform and then go back to sleep.
