Author: Jen Rios

“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…

Success!!!

Last night, I was a a little bit concerned about trying to open my pill bottle for my ibuprofen. The pill bottle has a lid that takes both hands to open.

I was more than surprised when I was able to push the tab down with my right thumb to allow me to use my left hand to twist the cap off. I let out an involuntary, “Success!” my Mom wasn’t even in the room!

I took my pill and thought for a moment as I peeled back the foil of my peanut butter cup, so then I could clearly see the sean where I pull it open. I was able to do that as well! That also got a, “Success!”

I do not know if I will be able to do that again tonight but the fact that I did it yesterday made me so happy! It’s serious now for me. It’s a daily basis thing to see whether I can or cannot do something. That is a unnerving to say the least!!! But, I like that I could do it yesterday! We’ll see about today…

Hopefully, a One-Off.

I am seriously hoping that what happened yesterday was a one-off. A couple things happened yesterday where it was obvious to me that I cannot control my hands and any longer.

I have been taking an ibuprofen 800 every night since I had my second knee surgery in 2017. I take it when I am getting ready for bed, and I take an Atkins peanut butter cup with it.

Well, last night, I could not open my pill bottle with my ibuprofen in it. I tried for a little while, I always try for a while. As my Mom was walking out of my room, I just helped the bottle up to her and told her that, “I can’t open this.”

She opened it and gave my pill. I tried opening up the packaging to my peanut butter cup. It takes a little while, but I can open it. That is except for last night. My Mom just cut it open with scissors.

I sat there in my chair, eating my peanut butter cup that takes three bites for me to eat. I was quiet. It really stunk that it could not open them yesterday but I’m hoping that I can today. I was able to put my contacts in the first time today; sometimes that’s difficult as well.

I will get ready for bed in a little bit and hopefully, it was a one off and I can open my things with no problem today. It’s like that now. Most days I can do things but some days I can’t…

“Don’t Call Your Mom.”

I have been thinking about having Sean since Halloween! But one thing I remember, the night nurse on November 1 was Irish. I really liked hearing her talk and my Mom stayed over at the hospital with me that night.

I spent November 1 in and out of coherency and I felt terrible the whole day. My Mom stayed and just told me to scoot over in bed. So I did and me, Sean (who was inside of me), and my Mom were sleeping in hospital bed.

My Mom left while I was sleeping because it was a Friday so she went to work. When I awoke, that nurse with the Irish accent was tending to me again. she told me that the doctors would be around for their rounds at 9:30. I still didn’t feel well!

Two male doctors stood at the doorway, and one of them walked in and asked me how I was. I remember telling him that my back hurt and he pushed on my left side and then my right side and both times hurt!

He pulled the paper that was coming out of the monitor and looked at it and then looked at the doctor in the hallway and told him, “Labor and Delivery. Stat.”

I remember being so surprised because I was not due for another eight weeks and that nurse with the Irish accent told me, “Don’t call your mom.” I remember her saying that to me, but there was no way that I could do that!

Immediately, I became a character in ER and nurses ran in messing with my bed, and one of them started pushing it down the hall with another nurse running ahead of her to push the button to open the door.

I have never really realized how emergent that whole situation was! The nurse told me that they would come around at about 9:30. Sean was born at 9:38 a.m. I didn’t get to meet him till about 6:30 in the evening and that’s when I told him, “Hi, I’m your mom.”: