Author: Jen Rios

Chanklas

I had a memory last night, and as my Mom was getting me into bed and putting my feet up, I told her about it. I asked the question, “Do you remember when I was like 10 and I was at Kroger with you and Jimmy and we heard that ‘Jennifer’ song that Abuela used to sing to me?!”

I remember walking down an aisle toward the milk or the meat or something in the back of the store, and we heard the song that my Abuela used to me ALL OF THE TIME!!!

My brother, Jimmy and I were singing it, and I was so shocked! At that point, my Abuela had been dead for a couple years, and I looked at my Mom, and I said, “I thought Abuela made that up!”

She would sing my name, and then just, ‘la la la la la la la la.’ This song came out in 1968 so of course I would NOT know it!

So, I asked my Mom that not thinking that she would search for the song on her phone. She remembers my Abuela that song to me too! But then she started playing the song. I was totally shocked at how quickly I began crying!!!

I could hear my Abuela singing that to me, smelled burning tortillas in her kitchen, and hear her Chanclas on the floor, and she shuffled around in the kitchen. She had really bad Bunions so her chanklas were just on half of her foot, and her heels hung out the back. I cried last night thinking about it!

I thought about that again this morning as we were getting ready for our ‘go time,’ and I started crying again! As I am writing this, I’m still hearing my Abuela and I’m thinking about the stale cookies in her cookie jar that we all would eat when she offered them, the Christmas candy from the Goodfellows, the fact that she liked the show ‘Alf’ and she would say to us all, “You old fart!”

I am going to start my Ginger Spice chapstick right after Thanksgiving, and that completely reminds me of her!!! I can clearly hear the shuffle of her Chanclas!!!

Cheat Code

At a ‘moment of clarity m’ today, probably realized this last night, I canceled my October 1 appointment. I was reviewing my MyChart for my upcoming appointment. And I saw that it is in Troy. Wait. What?!

I thought about this, and I would NEVER have made an appointment in Troy! Not at this point in my disease! But as I was thinking about it after I took my detox, and was praying before I took my Cinnamon this morning, Dr. Bansal had to changed it herself!!!

As I was listening to my first rosary and drinking my nutrition shake, I thought about the fact that I first wanted to have a Visual Field Test on July 3. But she rescheduled it for sometime in August and that didn’t work for so I rescheduled it again. But then here was the ‘moment of clarity,’ I am the one in charge of my own schedule, and they just accommodate me. I was stressed out for this October 1 appointment because it was early in the day but I no longer can have early appointments! I realized that I was not the one to make the appointment! I knew that I made an appointment for Detroit!

I called Dr. Bansal’s nurse today. Well, I called ophthalmology and wanted to reschedule my appointment with her and then I was transferred to her nurse. I laid it out to this woman, I can’t even remember her name, I told her that I live in Dearborn and I am homebound now. There is no way that I can go to Troy at 2:30!

She completely understood and I told her that I would have to reschedule for sometime in May because I already have appointments for January, February, March, I’m waiting on April for my dermatologist, so my eyes will have to be in May.

She told me that Dr. Bansal‘s schedule was not open for May yet and that is when I realized the cheat code! I need to call Dr. Rumbatla’s Office on October 1 to make my appointment for sometime in April. So of course Dr. Bansal’s may schedule is not open yet. I will have to call her on November 1!

The cheat code was realized once I finally accepted that I am that I am this infirmed now! It startles me that is not even October yet and I already have the first quarter of 2025 scheduled! But just liked scheduling classes in college, it makes sense to me and I can see it clearly. I just never thought my life would be like this!!!

Overwhelmed

I think that I am a little bit overwhelmed. I feel accomplished though, but this was difficult! I told myself that I needed to make three appointments for next year. I called yesterday and made my Internist appointment. And then today I made two specialist appointments. One for a procedure and the other one for a consult. My procedure is in January and my consult is in March. I am getting my teeth cleaned in February. That is one month too early. Actually two months.

I think that I am a bit overwhelmed because this seems to be getting more and more each year. I am seeing Dr. Clark on the 16th. That’s new as well! In February, he told me my nutrition was good and then things started changing and I am seeing him every month now. My supplements change each month.

I have told my Mom that I have never had MS this long and it’s ALL new to me! So, I spent the past couple days, making appointments and getting my teeth cleaned. Maybe that’s what’s bothering me! I have been getting cleanings every six months from my entire life but now I am sick so I need to go every four months. I never saw this coming to this extent!!!

It’s just overwhelming! But I did see on the Hallmark Channel, a double feature! Two of my favorite movies! I turned it on after I went to church from last Sunday and A Country Wedding was just starting and then it went right into October Kiss. I was hoping for a triple play and I was waiting to see Harvest Moon but that didn’t come on and I stopped watching TV and took my contacts out. Now I am listening to music and trying to decompress.

Every Four Months OR “I’m Sick”

My Mom and I got our teeth cleaned today at the same dentist office I have been going to since I was seven. I also had my braces through this office. They were a orthodontist back then as well! Sean even goes there as well. He was three when he started going there. I remember that I asked Dr. Fox one time when Sean was getting his teeth cleaned if he needed braces and he just said, “Yes.”

Sean was probably six or seven at the time, and I told him, “It looks like I’m going to have to spend as much money as my Dad did!” Because I have known my dentist for so long, said, “Oh, you don’t want to spend that much money!” Three of my older brothers, and I had braces through that office.

I have had my hygienist, Kristin for a number of years. She had worked at Dr. Fox‘s office previously and then came back. I took x-rays today and she told me that my teeth are beautiful. Dr. Kassem said the same thing. Teeth are very important to me, and I liked hearing that!

After my x-rays but before Dr. Kassem came in, Kristen let me know that there was some tartar on the right side of my lower jaw in the back. There is also tartar on the bottom front teeth as well. She asked if I was still using an electric toothbrush, and I said yes. She said. She saidthat she knows that I am trying, but she suggested that I come to the dentist every four months from here on out.

Hearing that startled me beyond anything!!! I told her that it is becoming a little more difficult to floss now. Sarah came in and took my chart to write down our return date for our next cleaning. I talked about the four-month thing with my Mom after I came out of the room with Kristin because my Mom was already finished.

After my Mon got me locked into the van, and we were driving away, she told me that my Dad got cleanings every four months. I was totally shocked, and I told her that I have never known that for my entire life! She told me that she used to take medication before each cleaning, and I told her that I vaguely remembered that, but I did not know that he was going every four months! I guess that just proves that I’m sick now. Like I haven’t been for the past 23 years but that’s kind of hurts a little bit…

As I am sitting in my chair in my house, am thinking about all of this. Kristin told me that my insurance only pays for two cleanings and an x-ray each year. I would need to pay out-of-pocket for my third cleaning. She said that it is not an exam and you don’t need x-rays so it will only be $105 out of pocket.

I talked to Sean tonight about it and he said that I probably should go because having problems with my gums, which Kristin said were a little bit Inflamed is not some thing that I should mess around given my current health situation.

I think I will call and make an appointment for January I guess… I have an appointment with the pain clinic for my knee and after that, I am getting my flu shot in the same building and then that’s it for September! I also have a Visual Field Test on October 1! So much stuff!!! #MSsucks!!! 😒😒😒…

Albuterol

So, I started another preventative measure for my urinary tract health. For 10 days, I took 10 drops in a tablespoon of water four times a day last month. Now I just take 12 drops in the morning when I wake up and 12 more drops at night before I go to sleep. My Mom puts it in a one cup measuring cup that I have. Before I would drink it, I would smell something. Something chemical. Something familiar. I couldn’t put my finger on it! I asked my Mom and she couldn’t identify it either!

Sean stopped by a couple weeks ago to get his suit coat and I asked him to smell it because it was familiar but I couldn’t recognize it! He opened the bottle and took one sniff, and he looked at me and said, “The breathing treatment.”

THAT’S IT!!! I knew it was familiar for a reason! Since he has told me that, I’m trying to wreck my brain to remember what I did. I remember that I gave him breathing treatments when he got home from the hospital and I’m not sure how long I did it for.

His lungs were underdeveloped when he was born and the breathing treatment would strengthen his lungs. I want to say that I started doing it every other day or maybe it was every day in the beginning. I’m not even sure how long I did it for. This is a 23-year-old memory. Sean will be 23 in November!

I remember the nurse explaining to me about putting the albuterol into the breathing machine and she also told me to take him into the bathroom with the hot water running full blast. She said when the room got steamy, I should turn the breathing machine on. She warned me that he may not like it. He may cry. But then she said that that’s good for him because the medicine will get deep into his lungs that way.

I had totally forgotten about this until Sean remembered ‘the breathing treatment.’ The nurse told me to just take him in the bathroom in his diaper so his clothes would not get soggy. it took me a moment to remember, but I clearly did when I thought about it. I would sit on the toilet seat with Sean in my lap with the shower on in my Parents’ house.

The breathing treatment machine was only on for minutes before Sean would start to cry every time, and just after he would start, I would, too!!! I’m not sure how long we had to sit there maybe 15 minutes? It was the longest 15 minutes at that point in my life! Just like the 31 days he spent in the NICU with the longest in my life as well!

I really can’t believe that I did all of this when I was so young but I did! That’s blowing my mind! But now, I take that medicine daily for myself because #MSsucks but I knew it smelled familiar, but I could not place it. I really can’t remember that now. But I remember that it was difficult!

Comfortable

I have been using my Fall flavors since September 6. It has been crazy that it has been 80° outside. I am most comfortable using my fall flavored chapsticks:

I thought it was going to feel like Fall sooner than it has been. It has been 80° all week long and I’m rocking my A/C. Today it’s raining and I don’t LOVE that so I looked at what next week forecast will be because I am leaving the house twice:

I’m leaving the house on Tuesday to get our teeth cleaned and then I am leaving again on Friday to go to the pain clinic for the first time at Henry ford health system because I need a new tens unit and then I am going to get my flu shot. I am really hoping that I will feel the Fall breeze either Tuesday or Friday.

Screenshot

But even if I don’t, come October 1st, it’s Pumpkin Spice because I will have a movie to watch after I go to my Visual Field Test appointment (I haven’t had one for a while and I’m a little nervous what it will show).

Attacked!!!

I woke this afternoon to this email:

Screenshot

I am so groggy in the morning. I thought I could just answer the prompts in my email to appeal my suspension! Yeah, that wasn’t going to happen. I even showed my Mom and thought she could talk me through it. It was not happening!

I thought I could do it after I pillaged as well. Yeah, that’s still not happening! It’s not really a big deal though if I think about it. I have only been on Facebook for seven years I think, and now, the only things I share are my inspirational thought for the day that I get emailed and memes for encouragement to get me through the day! I also wish people Happy Birthday, but Now, I’m not even getting alerts on the day so I am wishing people a happy belated birthday.

But, I share my blog posts on Facebook, and I think my Facebook friends are pretty much the only ones reading them. I guess I will have to fix it, but I don’t think that’s going to happen today! To use one of my oldest brother’s phrases, I DEFINITELY feel attacked!!!

“It’s So Darn Cute!” OR ‘Masterpiece’

Sean has always had crazy cowlicks and I attributed to his dad because I remember seeing a picture of his dad with a really big cowlick on the right side of his head when he was like 12 years old or something.

We moved out of my Parents’ house when Sean was three years old and my Mom would call me on the weekends to tell me that my Dad had not seen Sean all day and to come over and she will make us dinner. I loved receiving those calls all the time, I would never comb Sean’s hair when he was three years old. My mom would comment on it all the time!

She would ask me if I combed this child’s hair today?! I would just smile and shake my head and tell her that, “It’s so darn cute!” as she would comb his hair.

Now, let’s fast forward to me having a mass for 23 years. I can no longer have my hair be as long as it was for my whole life! I don’t even have the strength to wash my hair myself anymore. My Mom washes my hair and I put it up in a towel as I always have but when I am going to dry my hair, I dry it like a man because it is so short. I never thought I would say that in 1 million years!

I’m still getting used to having my hair so short especially because it curls now. I didn’t get my haircut in August because I got my wheelchair assessed. It needs a new actuator. Whatever that is?! My hair had two months of growth before I got it cut. It felt very strange growing in and I asked my Mom to take pictures of my hair before I get it cut. She took a few pictures:


My Mom snapped these pictures just before we got our haircut and as soon as I rolled into the spot to get my haircut, I looked at Christina and told her that, “I NEVER realized what a masterpiece she has done with my hair!” She kind of shook her head dismissively and told me that she has been cutting my hair for over 20 years. I told her that I never realized that I had so many cowlicks and she cuts it so my hair fall so nicely, even when it gets overgrown, like it did last month!!!

You KNOW that this song was playing in my head as I was telling her that my hair was a ‘masterpiece.’ This song definitely dates me, but it was back when I was still teaching and still part of the world. And by the way, Sean gets those cowlicks from me. And I get them from my Dad.

12 Years

Yesterday, we witnessed a mom caregiver struggle with her son to get into a car. He was in a manual wheelchair. There was another woman who was going into the chiropractor office as well. My Mom got out of the van to investigate and talk to the woman. I just sat in the van and waited.

it wasn’t until this morning when my Mom was getting me out of bed when I kind of looked at her in disbelief and told her that I can’t believe that we did that what that woman did with her son for 12 years!!! My Mom and I are the same height (she’s a little shorter now) and that makes it a little easier, but it was definitely extremely difficult!

I saw this meme on Facebook last night after we got back from our haircut and ‘go time’ was over:

I am in a power chair now at the suggestion of my wheelchair tech at the time, Christie, and we are Facebook friends now.

Seeing that posted on the elevator hurt my soul and I said that on Facebook:

Screenshot

Seeing that last night, brought back all those memories of NOT being able to do things from a manual wheelchair And I thought about that man and his mom. But that used to be me and my Mom!!!

I fought getting a power chair for a long time and it was actually Christie who asked me as she was watching me roll around my house, “Aren’t you tired?!” I hadn’t really thought about it, but the answer was, “Yes. 100%!” I just didn’t want to lose my upper body strength by using a power chair.

Fast forward to 2016 and it’s extremely painful to have your meniscus torn and therefore I had no choice but to get into a power chair. And as for the upper body strength, yeah, it’s all gone now! But things are so much easier in power chair!!!

When my Mom got out the car and talked to that woman, and there was another woman outside as well who was also a caregiver, the woman helping her son thanked my Mom and the other woman and said people just walk by all the time. Oh man, I remember that as well!!!

Spent.

Today was the first leg of ‘go time.’ I have two appointments next week because we are getting our teeth cleaned on Tuesday and then I am going to the pain clinic for the first time at Henry Ford on Friday!

Then, the following Tuesday, I am going to get a Visual Field T est done add Henry Ford in Troy. And lastly, on October 17 after our haircut on the 16th, we are going to the Cidermill!!!!

This is a whole lot of stuff for the next three weeks! I just wish that I wasn’t so nervous because I am so spent today! I work out, I do have faith in that. I just can’t believe how tired I am! All I did today was go to my naturopathic and get a haircut.

it was 81° when I was out and about so that made it difficult as well! I definitely didn’t feel the fall breeze today but maybe I can feel it on Tuesday or Friday coming up. Either way October 1 is coming! But man, I am SPENT!!!