Author: Jen Rios

Today was the second day of ‘go time’ for November. Yesterday, I did NOT leave the house, but my Mom took my chair to get serviced. The pelvis stabilizer is working now and so is the actuator. My wheelchair reclines all the way back smoothly without laboring!

Today was a difficult day to say the least!!! Everything got done, and I only have an appointment with my naturopath in December.

I have the first quarter of next year already scheduled and I know how to schedule April and May. I will do that in January and February. I cannot tell you how much I never thought my life would be like this!!! it’s getting harder now!!!

Today, I had my mammogram. Now that is something really necessary and also private but I must say that it is 2024 and I cannot believe they DO NOT have handicap accessible mammogram machines?!!!! That is so difficult!!! I had to learn that the hard way when I was 40.

Note to anyone who will be in a power chair in the future: take a manual chair with you to use while you are using the machine. I could not get a clear reading when I was 40 and my doctor told me that I should have another scan ‘sooner than later.’ So, I had two mammograms when I was 40! I am only 42 and I have just finished my fourth mammogram and I must tell you that I am STILL 4 for 4.

I have cried at all four mammograms!!! Today, I thought I was going to be in the clear because last year I cried a whole lot because it hurt a whole lot. But today, it wasn’t until we were in the waiting room and finished when I started to cry. I had the same tech from last year and it was smoother this time.

I have been thinking about this because I have recently gone through a change. I have been left-handed, my entire life and no one else in my immediate family is left-handed. I have made adjustments in dealing with a right handed world for my entire life!

I was telling my Mom that I can feel my brain changing because I have had MS for going on 24 years in a little over a month. I no longer can make those little adjustments or accommodations. I no longer can reach my left hand across my body to get my toothbrush from my Mom. She has to come around and hand it to me on my left side.

I wonder what else is going to change and how much but I am glad that it’s kind of slowly changing but changing nonetheless.

I just can’t believe that able-bodied people would be that obtuse because there are women power chair users who need mammograms so they need to make them easier to get!!! my Mom talked about someone designing it with an engineering mind and I told her that is NOT me!

Now, I am just going to Dr. Clark’s office and getting a haircut on December 18 and that’s it.

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.

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!!!

I only seem to watch commercials on the Hallmark channel. I’m diggin’ this one and I’m not sure why. I didn’t really like her in Hannah Montana but it reminds me of living in our second apartment:

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?