It was a rough one for sure too I have a three for and then Christmas Eve and Christmas day was just one day in between. I am exhausted!!! But it’s the kind of exhausted that you just can’t shake.
I have had this exhausted feeling I would say for the past six years and it’s making me not remember not being so exhausted! But, I am gearing up for a milestone now.
On Wednesday, I will have had MS for 22 years. I don’t know how to feel about that. All I know is that year 21 wasn’t messing around ! I’m a little concerned about what year 22 will be but I have a couple of days to think about it…
I am smack in the middle of my December ‘Go-time’ and my teeth are clean, my hair is cut, and my eyebrows are waxed. I just have one more appointment tomorrow and then I will crash! I just wanted to write a line to let you all know that in one week from today, I will have had been diagnosed with MS for 22 years!!! I honestly do not know how I feel about this…
This month, I have to leave my house three times. A three-fer. Ineed to get my teeth cleaned, my haircut, and a repeat scan. My Mom does not realize how nerve-racking this is because society is NOT handicapped accessible! I am just left to deal with that! Not looking forward to it!
When I awoke today, which was I think about 1:30 in the afternoon, my Mom had placed the ladder in the way for me to get into my normal spot so I waited by the bathroom and she moved the ladder and then she hit the light switch and my tree lit up!!!
I gasped even though I did not have my contacts in! I could see the lights and it made me excited! I tried to get a good picture today of the lights but I have already taken my contacts out tonight and I’m really not feeling it right now but I snap this one for you all. Phase 2 is now completed!:
The lights are up but I fear that it’s a bad MS-y day… again…
I think I need to tell you a little bit of a backstory before I tell you what happened last night. My house was built in 1951. In 1951, disabled people didn’t own houses, especially disabled people using a Power chair! As the homeowner of this house that was built in 1951, it poses a bit of a problem seeing that as the homeowner, I am disabled and I use a power chair!
Basically everything now has a process. The process that we utilize is to make a non-handicapped accessible area, accessible to me.
So, long story short, my power chair is just outside the bathroom as I am inside using the bathroom. Last night, Leia got out of her bed and walked over to the bathroom and just yakked on the floor and turned around.
I thanked her and told her that I appreciated that she did that on the tile but then I had to call my mom to clean it up because having had MS for 21+ years, my sense of smell is so acute!!!
It’s December 1 so I have a Christmas movie to watch now…
I pretty much start my blog posts out by saying that I did not sleep well because sleep is difficult for me but it eventually happens.
Well, last night was no exception! I peruse my phone to distract myself and possibly get tired for a while and then I put on an audio rosary when I think I am close to falling asleep. That’s what I did last night (or this morning), and just as I was almost asleep I had a memory of probably when Sean was 14 and instead of falling asleep, I kept laughing!!
I think it is such a random memory but I remember that it made me laugh, Sean laugh, and the spectators in their car laugh as well! When Sean was 14, I was still driving and he was not driving yet so we went to eat at Famous Hamburger on Michigan Avenue.
So, this is a seven year old memory but I could not forget laughing! It was 3 o’clock in the morning and I had to text Sean because I could not stop laughing! And I actually got a response:
I had texted him Adam Sandler‘s acceptance speech at the Gotham awards so that is what he was talking about and I loved that he actually remembered it!
I was still driving and still in a manual chair back then. We had just left the restaurant and he was pushing me to the car. We got stopped by a crosswalk and then it started to rain just a little bit. Once the crosswalk changed to walk it was only like that for a moment before the blinking ‘don’t walk’ started. I told Sean to, “Run!” And I started pumping my arms in my chair. I started to laugh and I heard Sean laugh as I turned my head and saw the couple in the car right at the stoplight laughing too!
I have no idea what made me think about that memory from so many years ago but I can still clearly see those people laughing as it started to rain. I used to do silly stuff like that! But now, I think my disease is getting a little too advanced for my enjoyment. At least my complete enjoyment! I don’t mind living in my memories though especially ones that make me laugh so hard!!!
I just read an article that said that Irene Cara died! That kind of shocked me! This song was my jam and I school! I watched the video again just now and I cried and I wish I could still sing it!!!
I think I figured out a workaround at about 3 o’clock this morning. This workaround makes me nervous so I guess I found a nervous workaround this morning! Here is the deal:
I have that good smelling fellow who was working with Dr. skarf to think for this because he looked in my file and enumerated all of my current doctors. I have seen many specialists for specific reasons but they are not my doctor all the time.
He went through my chart to gather that information. I have been seeing them lately. That’s when the workaround came about!
I was completely caught off guard because the message I received from my neurologist nurse suggested that I see a doctor whom I have seen before and I know what they are going to do and I’m not going through that again! I know what all of that is about and no thank you!
What I am going to do, is make two phone calls on Monday. The first phone call is to my medical supplier and I will tell them of my new doctor to approve my supplies. Then, I will message my PCPs office to tell her about it. I have already seen her twice and each of those times, my mom has been with me and she marvels at how much of a handle we have on my disease.
Upon waking up today, I received a message from my neurologist’s nurse. I thought about it and before I even got out of bed, I watched this video three times:
I told my Mom once that I must have seen at least 30 different doctors in the 21+ years that I have had MS. I have learned a thing or two in the past 21+ years. I have spent that entire time in the same hospital system and I KNOW that they have my records!
My Mom was the one who actually calmed me down. This is all a misunderstanding! I now know which doctor I need to speak to you to get them to approve my medical supplies that I have been using for 21 years. Both of my neurologist and his nurse have since retired but they were the ones who handled everything before.
Things are different now and I will have to let them know that I am an MS O.G. (original gangster).
I just put my Vanilla Maple Chapstick on for the last time this year. It is officially the day after Thanksgiving so my fall flavors are done with and now it is officially the changing of the guard because I’m moving into winter. There completely is method to my madness!!!: 😂😂😂
FALL:
Vanilla Maple is the one in the center.
WINTER:
I am excited to wear my Ginger Spice chapstick when I wake up. That coupled with Christmas music is just excellent!
