I’m not feeling well right now and I was thinking of a movie to watch. That’s what I do. I rewatch movies all the time! I’m not really sure why I do that, Sean tells me that it is a sign of trauma when you rewatch movies. I told him, what do I have to be traumatized by?! Being diagnosed with a chronic and progressively debilitating disease is when you’re 18 it’s NOT traumatic at all?!
My Mom decided to lay down and I turned the TV on and still couldn’t decide on a movie but then this was on the hallmark channel:
Love, Romance, and chocolate. I’ve seen this one many times And even though it’s a bit premature for Valentine’s Day, but it’s an oldie but goodie.
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).
