Author: Jen Rios

Fat Lotta Good

When I woke up this morning, my Mom told me that I had curly hair and she snapped a picture:

I have wanted curly hair for my entire life! I have it now at 42, fat lotta good that does me! The woman who cuts my hair asked me last March I think who I got the curly hair from. My hair started to curl then. My Dad had curly hair and my oldest brother and my youngest brother. My second oldest brother has wavy hair, but my brother Jimmy and me just had straight hair.

I looked at my hair and I thought of “Lambert the sheepish Lion” It was a short that we used to watch on the Disney Channel when we were kids. I think I may have to look at Disney+ to see if it’s there.

Aafter I got into my living room, I pulled the comb through my hair and made my hair a puffball just in time to put my hat on. I’m totally not used to having curly hair!

Almost a Pound

Today is Saturday so I pillaged:

My Mom put Leia to bed and then she was folding clothes in my room. It takes me a long time to fill my pillbox now. I take a lot of supplements! I asked my Mom to weigh my pillbox with my kitchen scale after it was full.

It turns out that I take almost a pound of supplements each week! My full pillbox weighs, 14.74 ounces. That’s a lot! That’s totally inconsequential information, but I was just wondering, because I am taking more and more supplements because my body needs more after 24 years.

I was going to see my naturopath on the 21st of January but that was a polar vortex day so I did not leave the house! I will call Dr. Clark’s office sometime in May because I don’t have a June appointment yet. If I have to fill that slot with a different doctor, I have August available as well because I see my neurologist virtually, so I don’t have to rent a van.

‘Leveling Up’

Right now, my head is spinning and I can’t believe how much I am reeling at how unable I am now!!! It looks like 24 years of having MS is even MORE of a motherb*tch then I thought!!!

I told my Mom that I am totally okay with how much she needs to nap because I am asking her to do a lot now! I told her that I’m ‘leveling up!’ With this ‘leveling up,’ she has to do a whole lot more!

I really don’t know what I was thinking! I saw myself throwing my wheelchair into the trunk of my car at work when I was 65. I think it’s crazy how none of that happened and I am so in-firmed now. I think I was 34 when I had to surrender my license and in December 2023, I learned that I am technically homebound. Because I really am! I try explaining that to my Mom but she doesn’t quite get it.

For example, in January I had an ultrasound which I can’t ask my doctor about yet because she’s out of the office. February I have my first. ‘third teeth cleaning’ at my dentist. My hygienist told me that she knows that I am doing my best, but she suggested that I moved to a schedule for a cleaning every four months.

I knew my Mom had made the appointment for six months with her hygienist for both of us already so I said that I would just keep the sixth month appointment that my Mom made.

Getting into the van, I told my Mom what Kristin said, and she told me that my Dad went every four months. I didn’t know that! I talked to Sean right after I got home and he let me know that health can go really bad(ly) really fast in your mouth! I made the appointment the next day. But it’s for February 25 so it’s five months since my Last cleaning.

in March, not only am I going to see my internist to get weighed, I also have to see a specialist because people with MS have problems with this specific issue. I’m a little nervous about that one… I really am ‘leveling up’ and I can’t believe I didn’t see this coming because I really didn’t!!!

Apothecary

Today, after I was out of bed, and my Mom gave me the detox I take each morning for my urinary tract health. I listen to a 20 minute rosary and then she gives me my Ceylon cinnamon also for my urinary tract health.

Having my detox first thing in the morning is a little bit much. It tastes like Albuterol. I have to take it with hot water. But the Ceylon cinnamon it was a little bit MORE than a little bit much.

Thinking about it, my Mom is my apothecary. She mixes all of my naturopathic/preventative things that it seems I will take for the rest of my life!

This morning, she hands me my one cup measuring cup that has the cinnamon and just a little bit of water with it. I have to stare at it for a moment because I’m still trying to wake up.

It takes me a moment to brace myself for this disgusting ‘mouthful of dirt’ that I’m going to have to swallow. It’s no longer really hot like it was when I first tasted it but I have been having this ‘mouthful of dirt’ for so long now. And for the rest of my life it seems.

Today, she looked at me and watched me brace myself before I took the shot of cinnamon water. As I drank it all down, she told me that I was hard-core! She puts a little bit of water in the measuring cup after I drink it, so as to get the residual cinnamon in the cup. Once I drank that down, I looked at her and said, “Of course I am! Look who my Parents are!”

She just kind of smiled in agreement as I started saying my next rosary to wait to drink my nutrition shake.

This Are Hard!!!

When my Mom came into my room this morning, she turned the light on, and I said, “This are hard.” This statement comes from a book that we had in our house when I was a child:

I’m not even sure who’s book it was. My Mom agreed immediately, and said, “Every day!” That’s what we say because it is really hard every day now! I seriously cannot wrap my head around the fact that it is so hard now! I actually was able to make my visual field test appointment today for May though. My life it SO SMALL now!!!

It was not easy to wake up today. But it was easier. When my Mom got to my room, Leia followed her. I heard her feet just after my Mom turned the light on. I said, in a monotone voice, “It’s my turn girl, go away.”

My Mom said something about me being mean but I reminded her that this is the MOST traumatic event of my day, getting out of bed, and that I most likely will cry every single day!

I didn’t cry today, but I was on the verge. Most days tears just leak out of my eyes, almost involuntarily I think because I wake up so groggy! I tell my Mom that it’s only going to get worse from here on out. Because it will. That stinks! #MSsucks!!! 😒😒😒…