The Only Hope

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!!!

Off-putting

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:

The Worst So Far

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.”:

The Incredibles

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!!!

Promising

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…

Too Hot for Too Long!!!

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) 😒😒😒…

It Sucks to Suck!!!

This evening, it took me a SUPER LONG time to eat my dinner!!! I eat overnight oats infused with protein, saltine crackers (because those melt in my mouth), and chicken Stovetop stuffing.

in this heat, I drink both my breakfast and lunch. I drink my breakfast all year round though. I have found that I at least need to eat one meal a day. I just can’t believe it took so long because it’s 80° this late!!!

I posted this article on Facebook and I sent it to Sean and my Mom.

https://www.mymsteam.com/resources/ms-and-heat-what-you-need-to-know

I’ve been getting these emails for the past 24 years and now, I have the time to read them. I probably should have read them 20 years ago!

This is my brutal season! The most brutal so far!! I have been telling my Mom about it, but I can’t believe that it’s STILL lasting!!!

I’m leanin’ in! There is nothing else to do. I have never liked this statement.‘ ’It is what it is’ but, it is what it is and it sucks to suck!!! In this heat, it sucks even more!!!

I have Barely Spoken

It’s miserable today! I have barely spoken and my Mom went to pick up the van for my appointment tomorrow.

I can say Dr. K’s name when I am looking at it to check in for my appointment, but when I see her and she says her name, I can’t get it so I just called her Dr. K.

I spoke to Sean a little bit and I told him about why I am nervous. Dr. K is going to explain to me my prognosis for dealing with my future, calculi. Because they will happen again! But, it took 24 years for this one to get the size it was so maybe I can wait another 24 years? I don’t know.

I will have the cystoscopy when it is needed, but it kind of hurts and takes a while to heal. That’s why I’m nervous! We’ll just see what she says tomorrow.

As my Mom left to pick up the van, I thought of this song because I’ve barely spoken:

I thought of this song because of this line:

Screenshot

That song does not fit with anything at all, but I just wanted to hear her voice I guess.

My Bladder

I had my appointment with Dr. K today. It was for 2:30 in the afternoon. As a homebound person, that was extremely difficult.!!! I woke up at 6:30 and got out of bed at 7 o’clock. I wanted to get into the bathroom to get ready to go at 10 o’clock but my Mom wanted to sleep so we started at 10:30.

We worked quickly and were able to make it to my appointment on time. (actually, in that 15 minute grace period, we had five minutes left) We got to the appointment at 2:40 but she did not come to see me until 3:08.

That completely reminded me of the time that I was in the urology clinic years ago. Probably 20. That doctor, (I don’t even remember his name) was almost 2 hours late and I was pissed but when he came in, he did not sit in the doctors chair, but right next to me in the patient’s chairs and he said the best thing that I have ever heard in my life of having this disease for 24 years! He had a football players build, maybe wrestlers because his ears were a little cauliflowered. He looked at me and said with a straight face, “MS sucks!” I was so surprised at that statement, but even then, I knew it was sucky, but I did NOT think it would be THIS sucky!!! I agreed with him then, but I had no idea it would be like how it is now!!!

My Mom took Michigan Avenue the whole way and it was freshly paved so it was wonderful!

Gettting through the hospital and into the elevator was a breeze and my Mom talked to the young man who had a broken leg and his dad was pushing him in a wheelchair.

We were in a hurry and I thought my appointment was on the ninth floor. My Mom did not ask at the front desk. She walks ahead of me and I learned that with her red shirt, it was easy for me to see her. She also had a white zippy that I used to wear, and the contrast made it easier for me to see.

She called back to me and asked what clinic we are going to. I told her Urology, but she didn’t understand that. But then I said with a U and then she got it. There was someone standing on the side of the hallway, who interjected that the urology clinic is on the ninth floor. We thanked her and kept hustling!

I have to think about things like that now. With these appointments in the middle of the day, it is so busy that it’s difficult for me to focus on her. Today, getting into the elevator from the parking structure was extremely scary and I will think about that and probably write about it tomorrow.

So, Dr. K comes in and asks me if I am having any problems and I told her that I have not and I told her that recovery took eight days. She apologized for that and then she told me that in six months, I need to see you again for an, “in clinic peek into my bladder.”

So that’s a thing now. My bladder. 24 years in, this is a lot to process. I have more things to write about my time there, but I am about to crash. I was so nervous about this appointment and I’m so glad that it’s over.

So Much MORE Miserable!!!

I told my Mom a couple of weeks ago that it has been too hot for too long and I’m not doing well. I read this article yesterday and I KNEW that there was ‘method to my madness’!!! This is absolutely miserable!!!

https://apple.news/As_YCNxc8R8y2Aj5EFJRM5Q

I told my Mom that I am so happy that my central air is fixed because I don’t think I could handle it if it wasn’t! We continued talking and I told her that I haven’t had air for the last nine years, but this is so much more miserable!!!

I guess that I have always had a flair for the dramatics because yesterday, I exclaimed through tears, “This is the worst I’ve felt in my entire life!!!” Because it was. I was just trying to recover from my doctor appointment which now is going to be an every six months thing. I’m just glad with all these doctors that I am collecting, it fits in with my schedule. I have already penciled in the first four months of next year. #MSsucks… 😒😒😒…