Today was Thanksgiving leftovers for dinner. My dinner consisted of a protein shake, corn casserole, cheesy potatoes, stuffing, and to finish it off, strong with pumpkin pie!
My Mom looked at me and said that I don’t look like I am feeling well. I looked at her kind of exasperated and I said, “Of course! We left the house and I’m still trying to get okay from that and I just ate a bunch of carbs and sugar and NEITHER one of those are my friend!!! But, I ate them anyway!!! They were so good!!!
it was well worth how I am feeling right now! I won’t eat like this again until Christmas.
Today is the day after Thanksgiving, which means it’s ‘changing of the guard’ for my chapstick. To my dismay, Burt’s Bees has discontinued the flavor, Ginger Spice.
That’s my, “Abuela Chapstick”?!!!! So I thought this would be the last season I will use it so I will just finish it. I was supposed to start something new on December 1, but I won’t this time.
I wanted to see how much Chapstick I had left so I pushed it all out and thought to push it back in, but it won’t go back in so I have a “Bag-o-Chapstick”
That’s all that’s left of my Chapstick that reminds me of my Abuela. I can still see and smell her house! I can hear her chanclas shuffling across the kitchen floor.
I think that house has been gone since I was in middle school. When I put my Chapstick on this morning, I smiled to myself and told my Mom, “My lips taste good” I thought of her and Montgomery Wards and the show Alf with fondness…
My Mom, wanted to hear a song today. She said, “What is that song, Five hundred twenty…?”
I interrupted her and knew that it was ‘525,600 minutes.’ She was surprised that I knew it and I told her that me and my cousinT Shannon sang that ALL THE TIME!!! Her and her husband took me to see it at the Fox Theatre while I was still in high school. We listened to this one a few times:
I got lost in thinking about us singing in her car. I told my Mom that I NEED to post this song because she loves it and I love Wham! and she does NOT but we listen to each other’s favorite songs when we hear them. Well here it is, this is her fave, NOT mine:
Yesterday, as we were getting ready for bed (which was really today, early this morning), I said to my Mom, “In 26 days, I will have had that MS for 25 years.”
I gasped immediately when I heard myself say that! Has it really been a quarter of a century?! A single tear rolled down my right cheek. On the 28th of this month, it will be a quarter of a century since I was told, “Look, you have MS, you’re going to go blind, and then you are going to die.”
I still have to write about what’s going on with my eyes, but I’m not blind yet… #ItSucksToSuck #MSsucks!!! 😒😒😒…
OK, I was going to write a blog post about what’s going on with my eyes, but I’m too tired. Maybe tomorrow. It has taken a week to recover this time around. That concerns me!
I just post Jon because I love this song and this performance!!!
I have been thinking about this for a pretty long time. I guess it was always going to be this way, and staring at 25 years of having MS. Okay, it’s starting to happen now.
We watched The Emporer’s Groove not too long ago, and there was a specific reason I wanted to watch it! Aside from being hilarious, this was what I wanted to see:
I remember them doing this when they went to their Secret Lair. I wear goggles like that every night when I sleep now. I started wearing them the night before Thanksgiving. I woke up on Thanksgiving with my eyes NOT dry and uncontrollably itching.
I read an article that talked about ‘leaning in the gray area of MS’ and the woman who wrote the article talked about her eye mask and she said, just like this, “(I kind of love it!)”.
Reading that reminded me of 2003? After I saw an episode of ER at my Parents’ house because that’s where I was living at the time.
There was a young doctor and he had a sister and the sister hooked up with an older doctor. His sister had MS and she had Canadian crutches. That’s what gave me the idea to get mine! I clicked on the hot link in the article and they had it available onAmazon for $80. Wait. What?!
I also remember the wheelchair tech who worked on my chair because I needed something and he told my Mom to get it on Amazon and to not order it from the company! He told her that ordering from the company is too expensive!
I got my goggles on Amazon and they cost me $12.99. (normally $14.99 but as a Prime member, I got two dollars off) They arrived on November 23. it took me a moment. I knew that this was a big deal! I put them on on Wednesday night so I could wake up on Thursday feeling better!
My eyes did not itch or hurt as much! It took a week for it to mold to my face. And once I put it on now, it is completely black. Now it’s comfortable!
My Mom helps me because she keeps it on my nightstand so when I’m in bed, she can give it to me while I am already at zero gravity with my pillow under my head.
I think it took about five days for me to sleep through the night with it on. It does feel a little foreign.
With the change of my contact lenses, Dr. Harris said that I would not need to use re-wetting drops. I STILL use them because my eyes are sick so I NEED them!
I am rolling with all these changes and I don’t like them and it does not feel good at all! I’m scared! Next week we are going to see about my shoes. That’s different now too… #ItSucksToSuck!!! #MSsucks!!! 😒😒😒…
This picture is from October 18, 2019 at 2:13 p.m.
I randomly saw this in a post I re-posted. I didn’t really pay attention right off. But now, I keep looking at this picture. I get a real-time wince because so many things have changed!!!
I didn’t realize that I have been using my extra firm therapy putty since October 2019. I will replace my current therapy putty ball on December 18. I do that every six months.
I’m lucky that Amazon sells them in a two pack so I don’t need to buy them until next year before June 18.
What I really could NOT get over is the fact that my nails were so long! I remember my nails being that long! I used to love washing my hair in the shower, but I don’t even wash my own hair anymore?!
I remember that Phil used to tell me that I had ‘claw nails’ and I remember once when Sean calmly recollected me taking my contacts out with my nails. I would just pop them out. I remember he said it off the cuff and I remember being able to do it which I no longer can do! I cut my nails to the knobs every two weeks. At least my mom died. I can’t do that for myself anymore either.
The second thing that I could NOT get over after seeing This picture was the fact that I was wearing shell toes. Back when I could easily buy Adidas shall toes in kid sizes. My shoes were like $19.99. I want to say the last time I bought a pair, I think they were almost $40 or something like that.
No, it was my Chucks that were $19.99 but I eventually had to stop wearing those. I stopped wearing shell toes five years ago and I got shoes like my Mom but now, I have to get a different pair of shoes. What is causing me to wince when I see this picture is the fact that I am going to buy special shoes from a specialty shop.
These shoes are not kids shoes or even normal shoes for the regular public. This means that they are more expensive! I’ve already researched them online after I asked my Rolling with MS group about the kind of shoes they wear.
I found a store where these types of shoes are sold and it is at 12 Oaks mall. I used to LOVE going to the mall when I was in high school!!! This is a really big deal because I am homebound so this will be DIFFICULT for me but I only focus on my Mom when we leave the house.
At least I’ll get to see the 12 Oaks Christmas decorations?! I hope I see them, but that’s not really important, going to the store to get fitted as what is the focus of this outing. I’m nervous. #ItSucksToSuck!!! #MSsucks!!! 😒😒😒…
I pillaged today. And now I can go back to using this picture:
My pill box is that big now! I am that sick now… that fact is so BEYOND startling to me!
We had a change of plan last minute! Let me ‘splain ya:
So, I’m homebound now and I do a lot of research on my phone before we go anywhere. The shoe store that I thought carried the shoes I wanted was at 12 Oaks and I was super excited to go there, but, turns out. When my caregiver (my Mom) called there, they didn’t even know about those shoes. Back to the drawing board!!!
There were other specialty stores kind of nearby and kind of not. My Mom called there and this store has the largest selection of SAS shoes in Michigan! So, I think this is where we are going to go.
On the day that I am getting my teeth cleaned, my appointment is at 4 o’clock. From there, we can go the store in Rochester. It might be pushing it a little bit because if there’s snow, that will stink.
My Mom just looked at me and said, “We left for the cider mill at 5 o’clock, (that is also in Rochester) and we made it. We have 100 miles in our van rental so let’s do it!”
I’m game if she is!
it’s a far cry from ordering kids shoes on the Internet for 20 bucks. I’m that sick now… #ItSucksToSuck!!! #MSsucks!!! 😒😒😒…
‘Go Time’ was a success!!! I’m tired but my teeth are clean and I know what shoes I need and why!!!
First of all, I went to my dentist to get a cleaning. I have been going there since I was seven. My son goes there too. They have changed hands and now it’s a corporate dental office. I have spoken to a receptionist named Samantha a number of times for my appointment today.
When my appointment was over Samantha came over to me and she said, “I don’t know if you remember me-“
I recognized her immediately!!! I will see her now three times a year because I need to get my teeth cleaned three times. Twice with the dentist and three times with the hygienist. She has 3 kids now!!!
Sarah finished my cleaning quickly and we were able to get on the road to see about my shoes by 4:30.
We were going from Westland to Rochester Hills. There was snow on the ground, but the roads were clear. Just before we got to the strip mall where the store was located, I told my Mom that, “I love decorated Christmas trees, deciduous decorated trees! Uniformly lit deciduous Christmas trees!
That we turned the corner and then my breath was taken away!
My Mom snapped I few pictures but they do not give the trees justice because they were beautiful and they were so many of them!!! they were all uniformly lit because they were professionally done!:
I snapped these mixtures while I was seated in the van:
Some pictures that my Mom took that do not justice because they were beautiful!!!:
We talked to a man named Steve and he sized to me and explained the kind of shoe I need and why. It was very informative and I liked that! Then he gave me two options they had and I chose one of them.
We stopped and got a pizza because I am so exhausted! I told my brother that we were going to the shoe store and once we cut in the parking lot to get the pizza, He Zelled me money and I will order the shoes tomorrow. They are completely a ‘Sr. Dorothy special.’ She was our principal in grade school. I remember seeing her with these shoes! I know that’s what I NEED a now but it definitely is a hard pill to swallow I will have Nun shoes now?!:
