Author: Jen Rios

Only 3 More for the Year!!!

Tonight is the eve of ‘go time.’ I’ve already set my alarms and I’ve gone through the orders. I will place tomorrow morning before I get out of bed.

I was telling Sean today that it’s ‘go time’ but I’m not going anywhere. my Mom will pick up the van tomorrow morning and get a lasagna (I can still eat that) and then come back to my house to get the wheelchair.

My Mom is taking my wheelchair to get an actuator replacement, and a pelvis stabilizer, (that means a seatbelt). I was noticing that reclining back in my chair was taking a long time back in October and that’s when my Mom took it in and they saw that I need a new actuator. That’s the motor in the hydraulic or something.

I don’t know what it is but I know it’s going to cost me $129 bucks or something like that. I am just foregoing my haircut and wax for November.

I only have three more ‘go times’ for the year! I don’t have a doctor appointment in December, but I have January through April next year already scheduled and planned. My ENTIRE existence is on a schedule now. I don’t know how I feel about that but I don’t think it really matters because the appointments have to be scheduled.

Aware

When I awakened in the morning, as soon as I opened my eyes, I am very aware of my hips as of late! But when I awaken, I have to sit up in my bed.

That ‘awareness’ becomes pain as soon as I’m starting to sit up in my bed. I moaned and grunted with the best of them this morning as well as I did yesterday morning.

I said the other day that my hips were ‘delicate,’ but I think we’ve gone from ‘delicate’ to ‘fragile!’ I don’t go for another bone density scan until January 2026. But I don’t move at all anymore. I have read so much that bones don’t like NOT moving but that’s what’s happening with me.

Wednesday night, it rained all throughout the night, and the only reason I know that is because I could not sleep at all because my knee was throbbing!!! This was the first time that I experienced pain at this level regarding my knee!!!

I tore my right ACL playing a basketball game my senior year and had surgery in the beginning of January 2000. My meniscus was torn in my right knee on October 21st 2016 at work. I think it was a combination of both those injuries and subsequent surgeries that made it hurt so badly!!!

All I could think of was the drumbeats in Jumanji, but this was just a slow throb! I usually drift off to sleep with the daily Bible reading or a rosary. Wednesday night, I listened to the daily Bible in his entirety. And then I listened to the previous week’s Homily again its entirety. Sleep was not coming at all so I thought to play Rosaries on my phone. I didn’t fall asleep till after I had said five!!!

This is so much now!!!

My Dad’s Eyes

My Mom showed me a picture she got of me, my Mom, and my Dad. She warned me before she showed me. Man, did it get me?!!!

I haven’t seen my Dad’s eyes in SO LONG!!! It’s been 18 long years!!! Now, my eyes are beyond suspect now, but I zoomed in on each one of our faces. I texted Sean the picture.

I zoomed in on my Dad numerous times and then I put my phone down. I picked it up a little bit later. But, man, a saw this and it wrecked me!!!;

I can AcCTUALLY HEAR HIS VOICE just by staring into his eyes!!!

I repeat:

ABSOLUTELY WRECKED!!!

“Delicate”

I awoke this morning and my hips felt a little bit, “delicate.” As I sat up in bed from ‘zero gravity’ because that’s how I sleep; the sounds that I was making were FAR from, ‘delicate.’

I spent the morning kind of reclining in my chair. My Mom seemed more concerned about it than me but I reminded her that I don’t move at all and I have osteoporosis in my right hip. I go for another bone density scan in January of 2026.

I messaged the pain clinic doctor about my x-ray. I had gotten that x-ray when we went to the cider mill. I had forgotten about it and I couldn’t fully understand the findings.

Another doctor confirmed what I thought it said. I have osteoarthritis in my right knee now. Yeah. I just need to sit with that for a little bit…

My Eyes?

I must tell you that having MS for 23 years ain’t no joke!!! Things are really starting to take its toll on me now and I’m not quite sure what to do about it…

I went to my optometrist appointment last July. After three years of seeing Dr. Harris, he increased my script to a -7.5 strength. We talked about the fact that Dr. Skarf has retired and I told him that I had to see Dr. Bansal.

I made that appointment I think six months before I was going to see her and I made it for downtown Detroit but she changed the location at the last minute so I canceled the appointment.

I am going to look to make that appointment for May 2025. God knows what my eyes will be like then?!!!! MS is different at this point. I’m not sure what to do.

I have a prism in my right eye. Dr. Skarf fit me for the prism by just having me bring in a pair of glasses with no prescription in it. I got it online for $9.99. I have since run over my glasses with my power chair and my Mom was able to peel the prism off of my broken $9.99 glasses to put them on the new pair!

At my appointment in July, Dr. Harris made up a script for glasses for me. Given my disease progression and how it is affecting my eyes, we talked about bifocals.

He brought a pair of lenses that had a 1.5 magnification? Or something like that. He had me look at my phone and then he put those two lenses in front of my phone well I had my contacts in and my glasses with the prison on them on.

The magnification greatly reduced the stress on my eyes, and I could feel it! I have been thinking about that because it is getting increasingly more difficult to put my contacts in my eyes. I can’t control my hands.

It helps that I have been putting them in my eyes for 30 years so it’s a lot of muscle memory but I am losing control of my hands at the same time. Sometimes I drop a contact and my Mom tries to find it.

I didn’t get glasses at my appointment with Dr. Harris last July, I just got more contacts. But he made them up for me and I do think about that. But here’s the thing:

Dr. Harris wants me to get bifocals to reduce the stress on my eyes but I told my Mom when we were driving away from Dr. Harris’s office. She said that she doesn’t need lines for her bifocals?!

I just calmly said to her, “You don’t have optic neuritis in both of your eyes.” She just looked ahead and agreed.

Putting my contacts in, has been difficult as of late and I do wonder about getting bifocals. Maybe then people would know that I am infirmed?! I cannot stop hearing that damn doctor telling me bout me going blind before I die when I was first diagnosed with MS… i’m just not sure what to do with my eyes?

’Tis the Season to be Irish

Today was my third Irish themed Hallmark movie and I got to see this one right at the premier!!! This one was called ‘Tis the Season to be Irish I think that it is my second favorite Irish movie that I have seen. The first one I saw years ago was the best one. The second one. was not so great but I like this one because the house they had in question reminded me of, A Quiet Man cottage!:

I told my Mom today that I have been watching Hallmark movies for 15 years. Since I moved into my house in July 2009, I saw A Country Wedding
and immediately fell in love!!! I think I have seen that movie about 20 times by now, and I just have to watch it when it’s on!!!

My Eyes

My eyes have been an issue for me since I was pregnant with Sean! I clearly remember Dr. Skarf telling me that I had optic neuritis in my right eye, but he can’t do anything for me because I am, “super pregnant.”

I must say that I only saw Dr. Skarf three times since I was pregnant. He has since retired. He retired in December 2023. He was my neural ophthalmologist.

I started seeing my optometrist in 2021 as well, I think. He is a very thorough doctor and he works with Dr. Bansal. That is Dr. Skarf’s replacement. I was supposed to see her last April or something but she changed the appointment. to the Troy office and not the downtown Detroit office. As a homebound person who needs to rent vehicles to go to my doctor Appointment, that will not work for me!!!

I had read an article saying that younger doctors want a good ‘work-life balance,’ and older doctors tell them that that’s NOT the job. But I guess that is how it goes now. My new neural ophthalmologist is in clinic downtown once a week. She is only there until 2:30 pm.

I thought about this and I started freaking out that I hadn’t gone to the doctor when I should have. I have never had MS for this long, but I will tell you, they are not going to cure me ever and I will just go see the neural ophthalmologist when I can. that means, on February 1, I am going to have my Mom call Dr. Bansal’s office to secure a 2:30 appointment for me on May 28.

She also has to call on January 2 in the morning for a dermatology appointment sometime after April 20. I have been renting vans consistently since 2021, they are our peeps! we’ll just have to arrange a nighttime pick up or something…

Disease progression with my eyes: I am not sure how to convey properly to my Mom that when she stands behind me on my right, I can no longer see anything! that’s a bit startling for me…