I have decided today that it has been too hot for too long, and my body is revolting!!! I feel terrible! Maybe it’s because I’m nervous about my appointment on Wednesday? Because I am.
I saw this post from a Facebook friend and I think this is pretty much what I have done today:
I am so grateful that I was able to get my air conditioning fixed!!! I don’t know what it would be like without it right now! It was 89° for far too long today! #MSsucks!!! (IN THIS HEAT) 😒😒😒…
I pillaged today, but I think I have to retire my picture that reminds me of The Far Side and my Dad reading the Sunday paper. But I’ll put it here anyway one last time for old time’s sake:
I snapped this picture last weekend right before I started pillaging and it looks completely different!:
Now that my pill box is a hexagonal shape and the compartments are shaped funny and not like they are in the picture and two weeks in, I’ve noticed that it is easier to put the pills into the compartment. However, I CANNOT put my Calcifood wafers into that compartment.
So I just took that pill bottle out of the plastic container that I keep all of my pill bottles in and I take that one first thing in the morning by itself and my second one I take just before I am ready to go to bed, by itself.
I listened to to rosaries as I was pillaging and that helps me focus. I had to listen to just over four of them this time. I’m seeing Dr. Clark in September and I’m sure he’s going to add things because I am going to ask him about my vision.
I’ve talked to him about my vision for a while, but now that I have definitive proof that my eyes are stable, (based on Dr. Bansal and Dr. Harris’s findings), he can start working with them. I also have to get something for my stomach lining.
MS is really starting to stink, but at least this new pill box is promising. It doesn’t feel normal YET, but it is promising just the same…
My Mom suggested that we watch The Incredibles today. The first one. I vaguely remembered it, but I remember going to the Incredibles on Ice with Sean and my Mom and I loved the fact that the Dash mask/head) that came with a cotton candy actually fit Sean’s head!
We still will talk about that on occasion. So we put the movie on as my mom went to make me eggs for dinner. I saw this scene and I laughed hysterically because I hadn’t remembered it:
We didn’t even finish watching the movie, but we’ll finish it tomorrow and then we’ll have to watch The Incredibles 2 coming up. I can’t believe that I completely forgot how funny this was/is!!!
I got good news at the doctor on Wednesday. So far, my eyes seem to be hanging on! At least my left one! But recovery is a WHOLE OTHER THING!!!
I keep telling my Mom that I have never had MS this long and it sucks to suck! That’s all I can be said, but this recovery time has been the worst so far and I’m not looking forward to future recovery when I hear bad news at the docto. I think that Wednesday’s appointment is not going to be great. I’m a little nervous about that.
I keep listening to this song because this is ‘not my choice.’ Yesterday, my Mom asked me if I was crying (as I was listening to it) and I just said, “Yes.”:
So, I read this article this morning once I woke up:
https://parade.com/news/korn-gets-disappointing-response-to-lollapalooza-set
I was immediately taken back to a time when I think I may have been 23?
I was driving (back when I still could do that) and this song came on the radio. I remember this song from high school and I loved it! What I did not expect was that my passenger who was a computer engineer when I met him started singing along right after, “Go!” he knew all of the words and that completely floored me! He was a hard-core rocker in high school, maybe goth? with long hair. I don’t know him anymore, but I guess that old habits die hard! I witnessed that! It was kind of crazy or off-putting:
I saw my optometrist today. He looked at Dr. Bansal’s notes and explained that my eyes haven’t changed. My contacts have not changed either. I’m still a -7.5. I’m happy because I have another box of contacts that is a whole 45 days so I don’t have to worry about ordering more contacts right away!
He did NOT dilate my eyes today and he checked the pressure, that was the last thing he did. When he was finished checking the pressure, he let me know that it looks like my left eye is holding on quite well! I smiled and kind of laughed a little bit, and said, “It knows that it’s the only hope!!!”
But know that this was immediately in my head when he said, Left Eye:
I heard, “Scrubs” last month at my haircut.
But this one reminds me of middle school basketball season. I think I’ll share this one:
He asked when I have to see Dr. Bansal again and I told him in one year and he said that I don’t need to see him until next year either!
This weather is still rough for me but I don’t need to leave the house until next Wednesday. That’s for Dr. K. There is already a Care Journey in my MyChart account. This all started in January and it will hopefully get to some resolve when I see her. I’m a little nervous about that one too!!!
I made an executive decision. I am on my last tube of Cucumber Mint chapstick. I had forgotten to use my Dragonfruit Lemon a few Saturdays ago. I was recovering. I haven’t used Dragonfruit Lemon in a while, actually. The Cucumber Mint is softer to put on my lips.
Because I have not used the Dragonfruit Lemon one, I decided to just have a Dragonfruit Lemon weekend so I used it on both Saturday and Sunday because I was not going anywhere. I have about a half of a tube left of that one. I know that I have Açaiberry in my basement, somewhere, and we should get it for next summer I think.
My Mom went to pick up the van because I have an optometrist appointment tomorrow. I really can’t believe that this is my life now! I say that all the time and it’s not like I want you to feel sorry for me, but I just can’t believe that it’s like this now.
I have four appointments in August. The first one was with my neurologist and that one was virtual so I didn’t have to go anywhere. Tomorrow I’m going to the optometrist, and next week, I am going to see my urologist to discuss my surgery. That’s crazy that I had surgery! It did take a while to recover, but I feel better now.
Lastly, we have haircuts on the 20th. Then I am done until September 17. I’m so excited because I felt a tinge of coolness when my Mom was washing my hair today (because I can’t do that anymore by myself… #MSsucks!!! 😒😒😒..) I looked at the forecast and Fall is coming and that excites me because then I will be able to think straight!!! At least, I think that we will be out of 90° weather now!
I used my new pill box today. And I have one thing to say:
I know that I will get used to it, but it feels so weird!!!
I pillaged today:
it took me a while and I told/asked my Mom that I wondered how long the learning curve is?”
I was on Wednesday of my third supplement when I had to stop and put on a rosary because I feared that learning curve is pretty long! I needed to concentrate because it’s difficult placing a hexagonal piece into a slot. That’s what my pill box is now!
Did I mention that it’s difficult to control my hands now? Because it is.I got it done though. I kind of fell into a routine after a while. And I need to think about the order in which I put them into my box. The wafers I was most recently prescribed didn’t fit into the slot so I will just take those by themselves before I take my supplements?
This is my third pill box and everyone knows that three is a charm, but I wonder?