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.”:
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!
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?
After my Neurology appointment today, I thought about my upcoming optometrist appointment on Tuesday and then the following week, I see Dr. K. Then August is rounded off with haircuts.
I looked at my Mom and my eyes were a bit wide and I said, “This is so much!” I couldn’t get that whole sentence out before I began to cry! I cried yesterday and my Mom just gave me a hug and kissed my cheek. Tears seem to be coming that easy these days.
My heart began to race before Dr. Cerghet got on the phone call. She did write a whole lot of things as I told her about all of the appointments have had and my upcoming ones for the rest of the year.
She had my Mom hold my phone like she did last year so she could look at my eyes and my hands and finger dexterity. I told her about my failed colonoscopy, my calculus and cystoscopy, and the fact that I go to the dentist three times a year now.
This is so much and so much MORE because it’s hot! I still have two more appointments this month and then I am getting my windows replaced on the 28th. It’s been a long time coming, there is a sale and I FINALLY have the money to replace them!
I am actually at a loss! My head is spinning! But I seem to just be handling things. For example, I woke up to a pretty big hospital bill! That obviously freaks me out! But I need to wait until after I took my Prilosec, waited 30 minutes, and then drank my nutrition shake (because I have gastritis now).
It’s only after I drink my nutrition shake that I can begin to make sense of the day. I called Henry Ford. I spoke to a woman named Amber. I told her that I had just updated my payment plan with Keith last week so what’s going on?!
Here’s the deal, I had an ultrasound in January. That’s when they found out that I have a calculus in my bladder. Then. In March, I had a urogram and with that charge, I made a payment plan to pay for that which was $200?! Then, I had my procedures in the end of June and that was a whole lot of money so I extended my payment plan with Keith.
Amber explained to me that he updated my payment plan based on my June 25 procedures. And the bill I received today was for my July 15 cystoscopy.
She updated my payment plan one more time. But thinking about it, I have a virtual appointment with my neurologist tomorrow. It’s my annual appointment and I have a whole lot of things to tell her about!!! I’m sure that she will read about all of it before I see her or as I am seeing her.
Then, I have an appointment with my optometrist on the 5th and then I see Dr. K on the 13th to discuss what’s going to happen with my bladder going forward. Amber told me to call when I get another email that tells me about another charge. So I will be getting one soon with both my virtual neurology appointment and my appointment with Dr. K at urology in August.
I just want to let everyone know that I will be paying Henry Ford for the next 14 months! I can’t believe all of this and it’s still hot as hell!!! I can’t wait until the ‘Ber months so then I can really think about this because heat is not helping at all on top of the fact of having MS for 24 years, things are getting serious now! And I think of that just like grandmother Willow talking about Kokoum:
Things are getting so serious now and I don’t know what to do!!! I will see my neurologist tomorrow while I’m seated in my living room.
