Author: Jen Rios

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.

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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:

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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:

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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!!!

“Naked Water”

This morning, for the first time since probably 2011, I had, “Naked water.” I have been drinking lemon infused water since probably 2011. I remember writing about DoTerra when I first started my blog. That’s the company where I get my OnGuard essential oil toothpaste and lemon essential oil in a little bottle.

We ordered it a couple weeks ago I think when my Mom got paid but it still has not come. It usually takes a week to come. My Mom called this morning and it should be here tomorrow. It is the weirdest thing in the world to drink, “Naked Water!”

My first Yeti has lemon in it as well as silver. My next Yeti is just naked water. I drink roughly 2 30oz Yeti cups of water a day. It was startling to start off with naked water this morning for sure!

The woman said that it’s supposed to come tomorrow. Tomorrow is ‘go time’ so we’ll see. I appreciate having the silver in my water as well because that makes my teeth tingle. I am getting ‘dosed’ for a number of things tomorrow. Three or four things. I wonder when this disease progression will slow down… if it ever will?!

Gearing Up

I have already begun gearing up for this month’s outing. I am getting a much-needed haircut on Wednesday. I am also going to see my naturopath before I get my haircut. He will see my overgrown eyebrows?! I’m a little embarrassed about that but it cannot be helped. I have to get dosed for a couple of my supplements. My needs are changing medically.

We are getting our teeth cleaned the following Tuesday and then I am going to the pain clinic for my knee. This is the first time that I have gone to the pain clinic but I know what I need!

I think it’s a little crazy that right after I go to the pain clinic, I have a visual field test on October 1. I haven’t had a visual field test for a while and I’m nervous for what it will show. I already know that I’m having issues with my eyes but I don’t know what extent. I’m gonna find out on October 1. My appointment is at 3 o’clock. I hope that I’m not too bummed out to watch Hocus Pocus! That IS the first of October…

“Bubbly”

This morning, a random memory popped in my head as I awakened and I teased it out so I could remember it more and I could remember more things about it. It is the sweetest memory!!!

I think that I first have to preface this with a not so sweet memory. But I’ll be quick. I think it must’ve been November 3 when this baby was born. She was Sean’s neighbor in NICU. I got all of his information from nurses talking with each other. A baby was born when Sean was in NICU, and her mother never came to see her. Her grandmother did not even know that her daughter was pregnant and no one came to see her.

We heard that as we were sitting with Sean. I remember crying because I had just had a child and I told Sean’s dad that we had to take her home with us! He just said kind of exasperated, “Jen, we just had one of our own!” I remember nodding but still feeling terrible for that baby. I could see her because she was right next to Sean. She was cute!!! The nurses were on the schedule to take turns to hold her to help with her development.

But now, here comes the fun memory. When Sean left NICU, I had already made appointments for him. He needed to see an ophthalmologist. Being premature, that affects the eyes.

We had an appointment for sometime in February. And I remembered that because at that appointment, Sean was three months old and finally fit into 0 to 3 month clothing!!! But he had a mint one piece long sleeved, onesie/loungewear thing on.

Sean was all bundled up because it was cold and we were waiting for our turn. They were probably about four or five other mothers with car seats for their premature babies as well.

Having a premature baby was pretty stressful! But this day, I remember seeing an absolutely bubbly woman with shorter light hair probably in her mid 30s. She had a long coat on and she put her baby down as she unbuttoned her coat. I was sitting there just waiting, and she looked at me and told me so excitingly that she had just got this baby on Monday!

I smiled at her, and I think I told her ‘congratulations’ She continued telling me that this baby was slightly premature and a bunch of Doctor’s appointments already scheduled before she got her. She said that’s why she was there.

It was nice to see how excited she was and I remember she started unzipping the cover to her baby’s car seat.
I checked on Sean, who I had unbundled, just as I turned my head to the right, she had the cute baby next to Sean in NICU!!!

I have no idea what made me think of this almost 23-year-old memory because Sean will be 23 in November, but it was a sweet memory to wake up to! That woman was so happy! But thinking of how bubbly she was, makes me think of this song as well. We was living in our second apartment when I told Sean that this is what “Good Kids moms’’” want for Christmas. He asked me that when he was five or six. I cut myself the CD and put it in my stocking:

I did not tell that woman that I recognized her baby but then Sean and I were called, I think we just gave each other well wishes as I went back for the appointment.

I think it’s crazy how random memories popped into my head but I enjoy thinking about them because I was more ‘able’ then.

“Just Take the Candy!”

I used to go with Sean and my Mom to take Sean trick-or-treating when he was young and I was more able-bodied. I saw this meme yesterday and I started to laugh and I will tell you why:

It was 2005 and I think Sean was a werewolf? Trick-or-trusting when he was young was pretty organized. I’m OCD.

Sean ALWAYS wanted to choose his candy bucket and he didn’t like the idea of pillow cases until he was older. I remember that it was my first year teaching and we were allowed to wear understated costumes while we taught. I borrowed my cousinT, Shannon’s fairy wings and I covered my face with glitter.

I had taught that day and I was tired and still had my glitter on. Retrospectively, I should have forced myself to walk with my crutches!!! But, I didn’t and my Mom pushed me on the sidewalk while Sean went to each house with my Mom. I stayed on the sidewalk and I had a pillowcase with Sean’s overflow candy so his bucket wasn’t too heavy.

As Sean and my Mom came back to the sidewalk, she had a strange and somewhat amused look on her face and said as she grabbed my handles. She whispered urgently, kind of under her breath, “Just take the candy!”

I didn’t know what she meant until the homeowner who just gave Sean candy walked directly over to me with her bowl of candy. I immediately knew what my Mom meant and I smiled and held up the pillowcase that had a little bit of candy it.

As she came close, I said, “Trick-or-treat” and thanked her as we went to the next house. My Mom told me that she noticed, “The girl in the wheelchair!” That’s why she came to me. I told my Mom that I cannot believe that I just trick-or-treated and I was a professional and 23!!! My Mom just shrugged and told me that it was for Sean. Well, it was!!!