Category: A Bit Of Randomness

I have been experiencing a change in some symptoms that I have been dealing with since pretty much the beginning of having MS. My Mom and I have been speaking about it for probably close to a month. Monday night, I decided to message my PCP on My Chart about it.

Upon waking on Tuesday, I received a message from her nurse. I asked between two specialties and which doctor I would need to see. The nurse gave me the number to the specialty I needed to make an appointment with.

I called Henry Ford to make an appointment, I already had a PCP referral, so setting up an appointment was going to be easy. I spoke with Kiara and I told her that I needed to see someone. She asked me which clinic I needed to go to, and I asked her for my options.

She listed all the cities and I told her I wanted to see if someone in Dearborn because that’s where I live. Just after I said that to her, an appointment became available at the Detroit clinic at the main hospital.

The date that became available because someone canceled their appointment was for August 18 at 2:30 p.m. that really works out for me because I am renting a van on August 16 to get my haircut. I said, “I’ll take it!”

This specialty would have taken months to get into to see a doctor and I’m so beyond lucky that one became available for me to address the problems I have been experiencing!

I called immediately after I spoke to Kiara to secure the van for August 18. Margaret was not available so I left a message and told her to call my Mom back.

That’s how it works now. Because my sleep schedule is so messed up now, I have left my Mom’s phone number as my contact number to discuss any medical issues that I have.

I schedule all of my appointments months in advance, so any problems that come up, my Mom handles that on the phone because I am usually sleeping during business hours.

I have been renting vans before Creative was Creative. The last company was Advantage. I started renting vans in 2018 when I was fitted for my power chair. The van is rented for the 18th now!

I like how everything worked out and worked together to get me an appointment to get my issues addressed in a timely manner!!!

I will never in my life forget the Summer of 2023. This was me in high school:

My hair was longer when I was younger, but maybe that’s just because I was shorter. I cut my hair my senior year and then let it grow out to my shoulders until my 26th birthday. I got a reverse Bob and I kept that haircut for 15 years, four months, and seven days:

That’s one of my favorite pictures of me and Sean and that’s my hair. But, 22 years into this horrible disease, my hair has changed. I told the woman who cuts my hair two months ago that my hair is straw so she shortened it two months ago and last month.

It was not feeling comfortable when I slept because I sleep on my back now. On the 19th, this happened:

I was nervous to get short hair! I had never had it before, and I couldn’t see myself going shorter than a reverse bob, but I like this. I texted my brothers right when I got home:

Because both of them said that, I decided to message my aunt:

And she responded:

And then, after we had that conversation, this picture showed up in my phone, because Big Brother seems to be working overtime!:

I messaged this to my aunt:

I was really dreading getting a shorter haircut. But I knew that I needed to do something because my hair did not feel good at all! The woman who has been cutting my hair for 20 years was hesitant to cut it, but she did. I texted her this Thursday:

So, I’m never going to forget this summer of 2023, but it’s NOT scary at all (just regarding my hair because everything else is awful!) It looks like I will be rocking this haircut for the next 15 years, four months, and seven days at least.

I saw my optometrist today. My eyes were a little bit better in terms of my vision. My right one I was 20/70 which last year was 20/80. Dr. Harris took his time with us because my Mom comes with me to all of my doctors appointments now. Dr. Harris said that my vision will fluctuate but he’s going to keep me in a negative 7 contact.

I have contacts for a couple months still. But I had to make another appointment! The reason I had to was because my eyes were already dilated before he came to see me. He asked me how old I was and then I told him that I am 41, he said that I am just a little bit younger than him and I am going to go back in August to be fitted for readers?!

I have to go to the eye doctor for that because I need a prism in my right eye in addition to readers. Let’s just see how much all of this will cost?! We made the appointment with Sydney, his assistant, just after my appointment.

Next month, instead of the two-fer, I am going to have a triple play. That makes me a little bit nervous, but I can do it… I think!

I found out at my optometrist appointment that my neural ophthalmologist is retiring. I first started seeing him 21 years ago when I was pregnant and that was when my right eye was diagnosed with optic neuritis. I saw him again almost a decade later, because my left eye joined the optic neuritis party!

I will say that I am at a little bit of a loss here! First, my neurologist retired, and now my neural ophthalmologist is retiring. I am going to a specialist on August 18 and I was looking at the appointment in MyChart. I am labeled as a ‘new patient’?!

Unfortunately, NO part of MS at this point constitutes me being a ‘new patient’ because I have been dealing with it for way too long and it’s starting to get serious! I bet this new doctor is young and I will have to school him about MY MS!!!

I have been thinking about this since Monday. I think it’s a vindicating to hear hear that a reference I made off of the cuff kind of resonates! And resonates with people who know what they’re talking about! Let me ‘splain ya:

Once Dr. Harris came into the room, he asked how my vision is going, and I told him that I no longer see an HD and just SD.

He completely understands that because he is an optometrist, and he explained that reference to my Mom. He also told us that he only pays for the SD Netflix subscription. His kids don’t like it, but he says that’s what he likes!

My ‘bad eye’ this time around was 20/70. He said that my vision will fluctuate, but that is very respectable! I liked hearing that, but my vision is bad and it’s not going to get better. I’m just slowing down the process. With my right eye, I just see the big E but I have three letters to look at with my left eye and I cannot see them clearly all of the time!

My prescription stayed the same for a second year, even though I know I am not seeing as clearly as I used to!!! it’s even blurrier than this without my contacts on:

So, yesterday I wrote a blog post, titled, vindicated. And once I titled that blog post that, do you know what song I was in my head! I just now searched for it, and I must say at 41, it hits differently from the 2004 Jen.

So, I am kind of tripping out about my childhood heroes dying now! For me, Sinead O’Connor was personal, because I fell asleep, listening to her music oh many times because my brother who slept in the room below mine listen to the album.

I saw Kyle Brent see this on GMFB even though I don’t watch that anymore:

Pee Wee Herman, the 80s, and football. pic.twitter.com/ncU5gYqER6

— Good Morning Football (@gmfb) August 1, 2023

I just saw this tribute and it really got me thinking:

I remember, watching PeeWee’s Playhouse with my brothers! I remember watching his movies and it was a couple years ago team song to PeeWee’s playhouse, and I did not know that her name was “Chair-y” NOT “Cherry” like I thought for my entire childhood! That’s crazy!

I’m not sure if I will re-watch his movies again because I am 41 years old and I think that it may be too dumb now but I do remember him and eating egg, salad sandwiches and their picnic, the Alamo does not have a basement.

I will NEVER forget that, “LargeMarge” sent peewee to that biker bar, where he danced to avoid being killed! Actually, there was a big long ‘hang them tattoo him then we kill him’ or something like that. I’m going to have to re-watch this movie!

I had my virtual appointment with my neurologist yesterday. it was quite uneventful, and even mundane because I have been doing these for 22 years!

At this point, I still can do all of the testing with my arms and if I rub my fingers like I’m snapping by my ears, It sounds the same in both ears. We talked about my vision and I told her that Dr. Harris says that my vision in my left eye at 20/70 is respectable.

She reviewed that I no longer want to do MRIs and I agreed with that. I think I am at a ‘good place’ with this disease, but it’s NOT a ‘good place’ at all, but that’s where I am! 22 years in, I am pretty sure that this disease has stone everything said it can at me and I’m still here tolerable I suppose.