Author: Jen Rios

I saw this commercial and started to laugh!!! I used to write this on my Secret Santa list all of the time at CCA! My kids thought that was a dumb gift and I would ask, “Is it really? I’m going to use it, now I don’t have to pay for it!” I actually used write the Target brand toilet paper but being in a wheelchair for as long as I have been, I needed better quality toilet paper.

Each year I got a pack at work, I would sing its praises to my colleagues! Sean has told me that I have ruined him because he got spoiled from this quality toilet paper.

I think this happened last Wednesday; just after that woman from the state came to my house. It’s taking me this long to really begin to digest it.

This was only the second time that I cried like this since I was diagnosed on December 28, 2000. But thinking about it, they were two completely separate reasons why I was crying.

I remember that I cried when my Mom was driving me to work in October 2016. It ended up being the final day that I went to work because I needed surgery. Again. On the SAME knee!!!

I cried then, because I was in so much pain because of my knee. But last Wednesday, I was sitting in my bed and the tears came over me so quickly because I finally realized that now, I’m scared. Pain has been a thing for me these past 23 years and I just deal with it but; this time, I don’t know what to expect.

I said that to my Mom as I was sitting up in bed. She hugged me and kissed the side of my forehead told me, “I’m here with you.”

That definitely brought me comfort because that’s what God said to Job. We are just people but I’m glad that my Mom is with me because I’m so scared.

Last Wednesday, the woman from the state watched me struggle to sign two forms. My Mom apologized for how terrible it looked but the woman just said, “It’s okay, I’m a witness.”

I thought about that today and as I was eating my lunch, today way Day 299 in the Bible in a year, it’s my third time through the Bible and there is SO MUCH PEACE THERE!!! Fr. Mike talked about being a witness and that made me think of that woman from the state.

Wednesday, a woman from the State of Michigan came to my house to discuss adult caregiving. It’s like that now! We received a letter in the mail, stating that she would be here on Wednesday. It would be between 10 a.m. and 2 p.m.

Right off, that time doesn’t work for me at all! But I made it happen! It was difficult for sure! She did not arrive to my house until about 1 o’clock? She stayed here for about a half hour and she asked me about five pages of questions.

Here’s the thing, I have been going to my neurologist for the past 24 years, every year. I was told to come every six months but as a single mother, who was a teacher, I could only afford the $25 that it cost me to see the specialist once a year. But now, I am so far gone that I completely know how to handle it. Not that it’s easy at all but I’m handling it.

I answered, “Yes” to every single one of her questions she asked me about my weight and she, too, said that I have a good weight. That’s the only second time I’ve heard that in my life! She asked me a lot of questions about my skin and I told her about my pressure sores from April to November 2022. I thought it was odd that she asked me about brushing my teeth. I told her that I have an electric toothbrush.

She asked all kinds of questions about how much medication I take daily and my Mom and I answered them without a problem!

I think it was in 2014 when I got fitted for a custom manual chair. I was still working then and I remember the litany of questions I got being so uncomfortable for me! Thinking about it, a decade later, it’s not a problem anymore.

Toward the end of her visit, she told me that there is a, “code” on my account that is preventing her from paying my Mother for the care she is giving me. She then told us that she is going to open a new inquiry or something about this and she told me that it could probably be February before it gets resolved.

Red Tape!!!

I don’t understand how this happened because I was a teacher when I was working, so I was not rich at all. This woman looks like a very seasoned person who has been doing this job for a while, so I hope she can figure it out.

When she left, my Mom closed the door, and I looked at her and told her, “I said ‘yes’ to every question she asked me!” I let that statement sink in for just a moment before I looked at my Mom and said, “This is sad.” My Mom hugged me as I started to cry.

I told my Mom this afternoon that it kind of feels like I’ve been punched in the face. She agreed. I never thought my life would be like this, but of course it would!

I am foregoing my haircut in November to take my chair to get its new actuator and pelvis stabilizer. It’s in the hydraulics at the base of the chair and a seatbelt. So, I have a lot of time to think and I have a lot on my mind right now! I’m not even sure how to navigate through it right now but it’s happening… it was a rough day today…

I remember back when I was in middle school or even high school, my Dad would take 22 pills a day. I remember that because he used to line them all up on his lower lip. Once they were all lined up, he would take one swig of water to wash them down.

I’ve been thinking about that for a while. I take more than 22 pills a day. But unlike my dad, I am NOT on a liquid intake restrictive diet and I am not on dialysis either. I realized this probably last week, mid week.

I take a lot more vitamins now. And actually they are called supplements. For dinner, I think I take seven a day. So midweek last week, I just thought I could pop the pills into my mouth with just a little bit of water. While I was watching a Hallmark movie. That did not work out well at all!!!

I think it was because I was her hurriedly doing it with not a lot of water but the partially digested pills ended up in the back of my throat and in my nasal cavity.

I think I was coughing for about 10 or 15 minutes and chugging water to get the taste out of my mouth and out of my nose as well. My Mom suggested that I spray my mouth with Thieves Oil that I have but I told her that is too intense and I don’t want to deal with that too!

After this 15 minute choking ordeal, and I will never forget what that tasted like in my mouth and what it felt like in my nose, I have chosen, just to respect the supplement taking! I constantly have to remind myself that I am no longer the same person that I used to be and I no longer possess the same abilities! #MSsucks!!! 😒😒😒…

Okay, this memory is a week old but I have been thinking about it since it happened! I am a little bit befuddled still I think this just signified a change for me.

My Mom and I have fallen into a nice routine in terms of using the van for my doctor appointments now. I am having issues with my vision and whenever I leave the house, when we arrive to the doctors office, I tell my Mom that I will meet her by the elevators, or at the doorway or something.

I really do not do much interacting with people. I do with my doctors and the technicians who take my blood or give me x-rays. the people around me do not usually talk to me. Christina has been cutting my hair and waxing my eyebrows for over 20 years. I am so comfortable with her!

But, let me tell you what happened last Wednesday. I just had gotten out of the car and I told my Mom that I’ll meet her at the doorway to Dr. Clark’s office. my Mom was right behind me. There was an elderly gentleman right in front of me with his wife. He looked directly at me and asked if I wanted him to hold the door for me. I was a bit startled, because people do not usually talk to me told him that my caregiver was right behind me.

it was as if it was on cue because my Mom was right there and she asked the man if he would hold one door while she held the other door for me. He had no problem doing that and his wife followed behind me. I was completely embarrassed!

I think I must’ve said thank you seven or eight times. I felt like that lady who wins second place or something at the last concert before the von Trapp family goes over the mountains and she bows a whole bunch in The Sound of Music.
It was a strange feeling for me. Because I don’t interact with people because me and my Mom are working. I need to be focused and we know what we need to do. it felt strange to see that kindness. It was like I was the queen of Sheba rolling through the doors that were wide open for me.

After my appointment with Dr. Clark, my Mom was paying the bill and asking me for the supplements that I needed and I was just calling out to her what I needed.
it was busy in the waiting room. I was a little bit shocked but then here comes the change.

I think I need a smaller coat. But I use the coat I have been using for years. Because there was so much material, I couldn’t control it with my hands, and my Mom had to put my coat on and zip it up for me. I muttered to her, “Like a child..” She smiled at me warmly like she always does and she said, “No, I am just helping you, because you cannot do it yourself.”

There was a woman by us in her late 20s probably and right after we said that to each other, she jumped up and offered to open the other door. I repeated my embarrassed over-thanking, and I could feel my eyes beginning to well. But then I come outside, and there is a man right next to the van, who just stood by his door and waited for me to get situated.

I have to go the long way, because I am left-handed. He just sat in his car and waited until we closed the van, and drove away before he moved. When I saw that, I just started to cry!

I have NEVER witnessed not one, or two, but three nice things from strangers, and it was a little bit overwhelming!

So, I went to the pain clinic on September 27 and the doctor looked at my knee and pressed it in two spots. Both spots he pressed; hurt! He gave me a new tens unit prescription and asked me to get a new x-ray of my knee because the last one was done in 2019.

I opted to get my x-ray the day we were going to the cider mill to my Mother’s chagrin! But, it all got done! I was for sure stressed before we left for the x-ray but I had a passing thought that maybe I could just have the x-ray while I am sitting in my chair.

We went through the same rig-a-ma-role about the doctor I saw, and the fact that this is a Worker’s Comp. injury. My Mom told them just to put it on my normal insurance and we will let them fight it out in the days and months to come.

I have yet to see if there’s a big dispute about it but the x-ray tech, Amanda, was wonderful! My Mom came with me and we weren’t sure how we were going to get me onto the table. Amanda thought about it for a moment and had me come around to the backside of the table so that I could remain sitting in my chair to get the x-rays of my right knee.

My Mom just held the board between my thighs. Amanda was able to get her first shot and then she asked me if she could put tape on my skin. I don’t have a problem with that so I told her it was no problem. I remember that my Dad had a problem with tape being put on his skin. Amanda taped my knee to the board as my Mom still held the board between my thighs.

She was able to get both x-rays and I’m still waiting for the doctor to review them. I read the results which made no sense to me but it does say that I have osteoarthritis. Well, of course I would have it! The two knee injuries that I have had on this knee, I remember my physical therapist at ATI, Brad, told me that in order for you to tear a ligament, your bones have to hit quite traumatically!

Well, I have done that to my right knee twice! Both times were NOT my fault!!!