Author: Jen Rios

Planned and FINALLY Accepted.

When I woke up this morning, or more like this afternoon, my Mom told me that the woman who fits me from my wheelchair called. She also told me the two available dates possible. I had the choice between June 1 and June 8. I told my Mom June 8 and she said that was good because that was the date she reserved!

I had been emailing with Diane ever since my last ‘go time’ where I received the wheelchair prescription from my doctor. I told my Mom that she would be calling her because my sleep schedule is totally messed up and she is the better person to reach to get an answer from.

Now, my entire year 2023 is planned. I think that this day has been coming since October 2021. In October 2021, I had my swallow test. That began the ball rolling for all of my doctors visits. In April 2022, that’s when I got my pressure sores on my feet. They lasted until November 2022.

I was still seeing doctors and renting vans during the time that I had my pressure sores and when the wound care nurse was coming to my house. I was able to plan my entire 2022 year of seeing doctors pretty early on. Now that it is May 22, I am all set!

I began recognizing that my life is very small probably in March 2023, now that it is May 21, 2023. That I have accepted this as fact. Actually, I think it started in March 2020 that’s when the pandemic hit and I realized that my life did not change all that much.

My life is small, but I’m good at it. I am a scheduler, and I can figure out all of my necessary appointments and can schedule van rentals accordingly. I never thought that my life would be as small as it is, but I can handle this I have finally accepted it.

“Recovery Day”

Today is “Recovery Day” for me. I did not even put my contacts in today. Just as we were about to start our morning routine, my Mom looked at me and said in disbelief, “You look tired!”

I could feel my eyes widen! I just reminded her that I had two really stressful days and I am recovering! We watched A Man Called Otto again today. That’s what we do. Because I did not have my contacts and I finally decided that I really like this song so I should post it to here for your listening enjoyment:

Blood Pressure

May, “Go Time” was hard on me!!! It was hard on my Mom too! She is laying down right now and it took me a long time to wake up today! It was successful though!

I love that I’m going back to see Dr. Clark and he gave me a different supplement to add on Wednesday. I got my hair cut and then I had a doctor appointment on Thursday where I was able to get my weight and my blood work done as well as a new prescription for a new power chair. I asked her about my blood because it’s pretty low and I seem to get faint and lose my breath when I set up and I am transferred out of bed.

I asked Dr. Clark about it and he said for me to ask Dr. Chamas about it. He will deal with it after she makes her recommendation. Dr. Chamus was not too concerned because I have had low blood pressure probably for the past 10 years.

My blood pressure is on my mind now, so you know what song is in my head, don’t you?!:

Retro

I thought that I would switch to my spring flavors for my chapstick after yesterday, but I had my heat on last night! The temperatures are NOT springtime temperatures, so I guess I will try again on June 21 because I’m cool with staying with my pomegranate chapstick! It’s quite retro!

It reminds me of going to Barwis in the very beginning but while I was going there, I graduated to açai berry which is no longer available but I have a bag of 10 of them that I ordered from Amazon probably about eight years ago. I wonder where it is? I wonder if it’s still good?!

AND the B-Sides?!

I am tired, but I am not exhausted, but how I feel warrants some u2!!! I’ll put on my u2 playlist specifically just the, “The Best of 1990 to 2000.”What a great album! That reminds me of driving to work at dfcu financial! It’s winter time, and i’m working in the drive-through with Matty and we talked about that song specifically 23 years ago! And yet it is STILL my jam!

There is something about Bono’s voice that speaks to my soul!!! I was trying to decide on a song to post here for your listening enjoyment! I searched a little and I found the complete album AND the B-sides?

NOT as Exhausted!!!

I just finished my May “Go Time.”What I needed to do was to see my naturopath, get my hair cut, and see my internist to write a prescription for a new wheelchair because my my chair will be five years old in July.

She just emailed me and told me that she will call next week to schedule a visit for her to get me sized for a new chair that will be with her and my wheelchair tech, Dave. Dave has come out to my house a couple times in the last time he came by, he had me preview a seat cushion to be put on my new chair because my disease and my sensitivities are progressing.

I will tell you that I never thought that things would progress to where they are now! But, I have to say since going back to see my naturopath, (getting out of the house is EXTREMELY difficult for sure), but I will tell you that I am tired, but I am not as exhausted since I have been on a supplement he prescribed me last month! He also gave me one for this month and I’m kind of excited to try it out! I will “Pillage”on Saturday!

I went back to see Dr. Clark last month because I was having a problem. It had been eight years since I last saw him, but I was still on three of the supplements that he prescribed me! I think that helped, he added some thing, and now I feel so much better and I will see him again next month. My June go time is only a one dayer!

I really can’t see the road as I sit in the back of our rented van, but Flat Rock, where we go to see Dr. Clark, is so familiar! He is wonderful!! You all should check him out!:

Porter-Clark Chiropractic Center
(734) 379-9200

The Beginning of the End Before I Even Knew it…

So, I got this email on May 12 and I was shocked when I saw it:

Wait. What?! Back when I was in high school, I tried to bring that word back super hard! It never stuck! I said it all the time till about junior year and then I had to stop because it was not coming back. I saw that email and I was aghast!

I graduated 23 years ago, and we were NOT saying Rad! How I wish I would have been! How I wish everyone would have been! But now?! That’s NOT cool! I guess I was ahead of the curve!

I never had a formal graduation party with my entire family because my Dad had open heart surgery the day after I graduated! He was in the hospital when I graduated with my bachelors degree, he had already died when I got my masters degree.

My Mom asked me probably in about 2010 why I did not give out all of my graduation pictures and she was kind of irritated with me because I was very particular about my pictures! I had two different photo shoots. One indoor and one outdoor. I just matter-of-factly reminded her that my dad had open heart surgery the day after I graduated, and I did not have a party that summer; he was recovering!

I knew that my senior pictures were in my Dad’s armoire or in my Mom’s drawer. My Mom went to her house in March and she brought the little box of my pictures. They have been sitting on my table for about two months, but she took pictures of them so I could see them.

I guess it’s better late than never but these pictures are 23 years old. It was the beginning of the end before I even knew it. I was diagnosed with MS the December after I took these pictures:

Okay, about those eyebrows! That was the style! I was cool! And I have no idea where my class ring is now…

I still own that blanket! It has a hole in it from my wheelchair, but I still have it! I have always LOVED cookie monster!

I remember that American Eagle shirt! I got it because I was a 2000 graduate!!!

Oh, those shoes! Those shoes are a size too big, but the name was in the tongue, and the name of the shoe was, “Jenny.” I HAD TO HAVE those shoes! They were heavy to walk in and those jeans were my favorite pair of jeans!!!

I am pretty sure that the necklace I am wearing. Was my a guardian angel necklace? I got from my brother, Steve, for my Confirmation. He was my sponsor.

This was the final picture. But the whole reason that I shared these pictures is because you can see how long my hair was and I am going tomorrow to get my hair cut even shorter. I was talking to my best friend about it last Friday and this was my consensus to her:


I STILL Learn Something New Every Day!!!

This song was commented on in one of my MS support groups. I belong to 17 of them, and they are most helpful! I really like that one of my groups is adding songs to it. (I belong to a group specifically for music lovers with a mess and this one is separate but I love that it’s happening!!!)

So, maybe about a week ago, someone posted this song, and another person commented on it. She said that this song was written when Rob Thomas’ wife was diagnosed with Lupus. Then she added that it is similar to having MS.

I am well aware of that fact, and I know and am related to people who are dealing with living with Lupus! Lupus has a GREAT color, the color for lupus is purple.

Listening to this song after hearing that takes it to a whole nother level!!!

Scared.

Today, I had the worst choking fit that I have had to date. I was eating my lunch and it came out of nowhere! I had just taken a little bit of a gruel to eat. Really?! It was such a small amount of food!

I am no stranger to choking and I adjust my chair accordingly. At this point, I just calmly adjust the joystick to move the gears of my chair so I can sit up to open my airways to finish choking.

I am having a very hard time with the weather right now! It is doing terrible things to my body with the extremely inconsistent change in temperature! So, I was having a hard time adjusting my chair. I was frantically trying to change the levers to allow me to set up so I could clear my throat.

In that time, I continued choking and pressed the horn on my chair, my Mom came over and I waved my hand and I think was able to choke out,, “Sit up.”

She was able to adjust my chair, so I was able to get air into my lungs. As I continued choking, tears were stinging my eyes and once I was able to stop choking, my Mom took her headphones off because she was on the phone and asked me if I wanted a hug.

For me, there is something about my Mim’s voice! Tears started streaming down my face as I nodded silently. She hugged me and I let the tears flow freely, because this absolutely made me so scared!!!