Author: Jen Rios

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 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!!!

Last night, just before my Mom was going to get me into my bed, I continued giving her facts about my time in the neurology clinic at Henry Ford. I have spent the weekend piecing together the past 22 years that I’ve had with the Neurology clinic. She was walking into my room and she told me, “You’re really unsettled about this!”

As she walked toward the living room, where I was sitting, I could feel tears stinging my eyes, and I looked at her incredulously! With my eyes bugged out, I said, “Something that is supposed to be seamless and look at this?!”

Today, when my Mom got me up, she told me that Dr. Cerghet’s nurse is named Sarah. I had talked to a woman named Karen a couple years ago. Suzanne was Dr. Elias’s nurse for 16 years so she knew what was going on with me!

I had reviewed with my Mom all of the pertinent information which my Mom pretty much knows! My Mom was able to make it so the virtual appointment I have in August still stands and she will tell Dr. Cerghet what she needs to sign. (the prescription for my new power chair)

When my Mom told me that, I wiped my left hand across my forehead, and said, “Phew!” my Mom looked at me and asked, “Really?! That’s all you have to say?”

I thanked her for handling my business and I told her that I don’t want to be haughty?! And then we both laughed. I am so grateful that everything is working out because I am making sure that it does!!!

Last night, as my Mom was helping me into bed, she let me know that I am very high maintenance! I started laughing and corrected her, “I am high standards!”

My Mom has to do A LOT to get me situated into bed and I completely understand that at this point, I am DEFINITELY high maintenance because she has to elevate my feet because of my pressure sores that will never go away, I mean that the skin will always be compromised for the rest of my life, I but I used to tell people in my youth that I was, “high standards”

As she was leaving my room after she massaged my feet with the massage gun that my brother got me because I don’t sleep with my compression socks on, I called out to her, “AND I am only getting MORE sensitive!!!

Because I am! This weather is completely killing me!!!