I was absentmindedly scrolling through my phone and I see this video, and I click on it!:
I can definitely get into a Whitney Houston cover! But a Whitney cover by a man?! I kind of like this, and it made me think of another man covering a Whitney song so I have to put it here too:
I am reminded of singing these Whitney Houston songs in the bus going to basketball game in grade school! That was pretty cool to see Whitney covers by men!!!
So, I had my appointment about the mole on my ankle, and it is totally fine. But there are some other things that are NOT TOTALLY fine! I was reminded of one time when I was invited to see a Tigers game. They were really good seats along the third place line with the possibility of catching fly balls seats! Comerica Park had just been built so it was probably 2004?
I am not a huge baseball fan, but I was excited to experience the ambience of it all! That is, until we got there!!! I wasn’t even in a wheelchair back then. I was on Canadian crutches. There was no way for me to get to our seats?! In a brand new stadium?! Needless to say, I was upset, and we sat behind home plate. We didn’t even stay for the whole game. It was a terrible experience.!!!
I was reminded of that when the doors had an automatic opener so I could go through them, but it was a standard door?! As a power chair user, it’s a little bit easier because I don’t have my hands on my wheels at my sides but here’s the thing, my vision and depth perception are not what they used to be!!!
There was an extremely long and narrow hallway that I needed to go down in order to get to the extremely small exam room. It wasn’t until after we were seated in the van on our way home that I told my Mom that it was completely terrifying to make my way down the hall and go through the door.
She told me that she wouldn’t know by looking at me because I looked completely composed but I told her in my head, I was freaking out! I never like feeling like an oversight! I felt like an oversight and Comerica Park that one time, and I felt like an oversight again at my dermatology appointment.
But as a disabled person, I must tell you that after having MS 23 years and being a manual wheelchair user for 12 years and then a power chair user for 6 more years and counting. I am COMPLETELY an oversight!!!
So today was technically a, “Recovery Day,” I had to put my contacts in today because I needed to Pillage!:
This picture will ALWAYS remind me of putting the newspapers in the recycle bin after I read the comics so I may as well put it here!
My Dad always read the paper and he told us kids to do the same. I’m thinking about him a lot lately… I am still trying to digest my appointment yesterday. It went well, but I think I need to remind people that. #DPM2!!! The hallways and doors were TOO narrow and it was so difficult for me. My Mom told me that no one would think that by looking at me, but I was COMPLETELY on edge the entire time! I’m too tired to write about it now, but I will think about it more and write about it tomorrow.
My Mom picked up the van today because we have an early dermatology appointment tomorrow. As she went to pick the van up, I watched Legends of the Fall:
I haven’t seen this movie in a long while but I know that the last time I saw it was here in this house but that could’ve been seven or eight years ago. I put the movie on when my Mom left to get the van because she didn’t want to watch it. She says it’s too difficult of a watch!
I think that I cried a little bit more today during all of the sad parts because I understood it a little bit more. Tristan was nuts! I still loved Anthony Hopkins’ line in the beginning about failing at raising his boys and the fact that he was trained to lead men, so what did he know of raising boys?!
That is such an epic line and one that resonated with me, since I saw it for the first time! I like that I watched it and tomorrow I am leaving the house and it stinks that the weather stinks!!!
At 10:06 at night on April 24, how is it 39° outside right now?! Absolutely not cool!!! I am still wearing a winter hat in my living room! It probably doesn’t help that I need new windows and the fact that my internal temperature gauge is broken. That’s how I explain it to my Mom at least. But this is absolutely NOT COOL!!!
I saw this meme today, and I stared at it silently for a while:
I showed this to my Mom a little while after I posted it on Facebook. She read it and told me that she wants me to do things like that, and I interrupted her by saying, “That’s not a thing anymore.”
Because it really isn’t. I have a head filled with memories, and that seems to be working. It is a sad realization, but that’s how it is now. I never thought my life would be like this, but this is how it is… #MSsucks!!! 😒😒😒…
I am aware of the background music every time I get my haircut and conversations take me away from it sometimes but I still hear the music. On Wednesday, my hair was cut and my eyebrows waxed. My Mom’s was getting cut by her hairdresser so I sat in the waiting area and I heard two songs from my youth! I am in high school and just graduated! I heard the songs and I smiled:
I sat there and thought about my more able-bodied days, and I smiled. I never thought that would be something in my past, but I’m so grateful that I experienced it!
I am most grateful that my hips knew how to behave yesterday during ‘go time.’ I sat up straight in my wheelchair and got my haircut and eyebrows waxed, and my hips did NOT hurt. That was even in the rain! I think I attribute that to having the same hairdresser for the last 21 years. I am so comfortable with her! But I am focused each time I leave my house because I am so uncomfortable and in that focusing, my hips didn’t hurt.
We heard rain on my roof so we hurried up and I got out of my house and into the van. My Mom already had the van ramp out. It was not a back loader, but rather it has an undercarriage ramp that comes out on the right side of the car. I just got a little bit wet!:
The first day I got my first power chair (I’m on my second one now), Diane explained to us that we needed to use a grocery or Ziploc bag over my joystick when it rains because there is a lot of computers stuff in the joystick. My Mom reminded me of that yesterday.
But, I guess that I am not a very good photo journalist, because I should have taken a picture of the downpour that I could see on the windshield! As soon as I got into the car, my Mom pressed the button for the ramp to go back under the van and she went inside to get her umbrella.
She was going to take Leia out before we left, but my Mom put her raincoat on her but she said that when Leia saw the rain outside she backed up.
This morning, just after I sat up in bed, I was going to have my Mom turn the light on. And just after she switched the light on, I told her that my hips are not behaving anymore. She just said “Good!” I had to speak a little louder and tell her they are NOT behaving, so I am going back to reclining.
Lately, I am so EXTREMELY happy that my chair accommodates the pain in my hips!!!
it’s Recovery Day #1 today. It’s a contactless day for me today. I am listening to Laws of Attraction right now. I was so exhausted yesterday but I don’t have to leave the house again until next Friday.
I was talking to my Mom today about my disease progression. This is the first time that I had to give a urine sample. I will give them every three months at the same time, giving full blood panels every six months! Dr. Chamas told me to see her in three months when we saw her in March. I don’t think I’m really prepared for this but it’s happening!
I never imagined that my life would be like this, but it is. I can do it though! It all makes sense to me. I’m not afraid of going to the doctor just like I haven’t been afraid for going to the dentist for my entire life. Now I just need to go a lot more often!
Tonight is ‘go time’ eve. I’m getting my haircut tomorrow and I need to drop off a sample to the doctor as well. My MS is definitely progressing and it’s a little bit concerning! I’ve spent today gradually sitting more upright because I have to get my haircut tomorrow.
It’s kind of crazy that I’ve been thinking about when this started with my hips feeling how they feel. I was ripped out of my sleep on October 28, 2023 with both of my hips burning excruciatingly! It was in December when I started thinking about the possibility of me having Osteoporosis. I got my bone density scan on February 2, 2024. I will go for my repeat bone density scan in two years.
My Mom read the report to me in the car that said I had it.
I will not meet my endocrinologist until May 16. I think it’s a really good thing that I met with my naturopath on February 21. I have been taking a supplement since then actually four wafers a day since then. I originally thought these wafers tasted like saw dusty bottle caps. (that candy from the 80s) but now I have decided that they taste like the teething biscuits my nephew had when I was 13.
I chew two wafers for lunch and two wafers for dinner before I take my vitamins. It’s pretty gross in my teeth! Maybe it is a little bit like sawdust still…
Tonight I will just ‘twilight sleep,’ so then I will be able to place my supply orders For the month. My year is completely planned out in terms of doctors. Actually, I still have to make my virtual neurology appointment. But that won’t be until August and I will not leave my house for that.