Author: Jen Rios

Semi-Virtual

I just started thinking last night that I do not have to leave my house until July 19th. But then I remembered that my appointments are semi-virtual. I have an appointment with my Speech Pathologist next Wednesday.

Meira was the one who suggested that I go virtual for all of my appointments. She knows that transportation is an issue for me now. I see my Speech Pathologist virtually, I saw my nutritionist virtually, but then I have other things that I have to go into the clinic for.

I have to go into the clinic to see my optometrist and my neural ophthalmologist. They need to actually see my eyeballs! I did, however, decide to go virtual with my neurologist, because I completely understand that she is NOT going to give me a magic pill to cure me. I have also opted to stop MRIs. I stopped that last year; I didn’t have one.

I also need to see my primary care doctor every six months to get weighed and to get blood drawn. I really can’t believe how small my life is now… that, and I’m getting old! Because I titled this post, semi virtual, you know that I thought of semi charmed, kind of life by Third Eye Blind! That was my jam in high school, but I watched the video today and the lyrics are kind of dirty and I can’t believe 15 year old Jenny was singing this?!!!!:

“If it Ain’t Broke…” OR “Let the Rain Come Down”

I saw Dr. Clark yesterday and he said that my body is tolerating everything well and I can go to an eight week check up this month. I don’t need to go back there until August 16!

My Mom asked if there was anything more I needed and he said kind of nonchalantly, “If it ain’t broke…” that statement made me smile because I heard that same thing two weeks before from Diane regarding my power chair.

I am exhausted today and I did not even put my contacts in today but I got good news yesterday so I’m going to let that carry me through the weekend I think. June was a success. I ordered my new power chair, and I got a great report at Dr. Clark’s!

In my exhaustion today, I am thinking about the fact that I have a pretty good handle on my MS, NOT that it easy at all!!! Far from it!!! But I know what to expect. I just have to deal with it. And that is a tall order! I actually have been thinking about this Sara Bareilles song and this specific lyric:

I just heard this song because she is getting me through my exhaustion. I know what to expect and I can do this. I can make the schedules and rent the vans. But I want everyone to be clear that this was NOT my first choice at all!!!:

Oh, Joni?!

I appreciate random videos in my YouTube feed because the writer’s strike continues. I am in a very strange place of exhaustion but I was able to watch this video. Oh, Joni?! I thought to watch You’ve Got Mail because it’s too early for Love Axtually! But you know I was thinking about Emma Thompson, the whole time:

“Punch it, Margaret!”

Today was June’s ‘go-time’ and it was just one day. I do not have to leave my house again until July 19 for my next haircut. I have a little bit reluctantly, accepted my life as a homebound person but I’m not sure that my Mom has really accepted it and that kind of stinks. Today, as we were leaving the salon from getting our haircuts and my wax.

I was just about ready to ride up the ramp when my Mom said, “Punch it, Margaret!” I immediately started to laugh, got into the car out of the wind and then I had to tell her the significance of that commercial!!!

I have not seen this commercial in more than 30 years! This commercial is me and my aunt Rita! When we would get out of her driveway, she would put the car in to drive and let me hold the gearshift and she would place her hand over mine, and then that was my cue to say,”Punch, it, Margaret!”

I remember at my young age, I thought I was actually doing the driving, and I thought we were driving at the fastest speed in the world! I was in high school and I told someone that I know all of the gears for driving a shift, and I demonstrated them with my left hand. (Remember that I was NOT the one driving! I was just sitting in the passenger seat while my aunt drove). I’m left-handed anyway! I just remember that that guy asked me, kind of incredulously, “You know how to drive a stick?!”

Then I had to tell him ‘no’ ashamedly. But telling him my memory with my aunt Rita made me smile just to like it made me smile today when I told my Mom about it:

The Eve of ‘Go-Time’

My mind is full and I am not sleeping because this right now is the eve of ‘go-time’. This month’s ‘go-time’ just consists of one day. There is a two-fer on that one day though. I see Dr. Clark, my naturopath, at 3 o’clock and then at 5:30. We are getting our haircut (and I am getting my eyebrows waxed) at 5:30.

I have been playing the day’s plans over and over again in my mind so I have everything straight. I think that I have finally figured out the proper way to successfully complete go-time.’

March was exceptionally difficult for me and that was when we got my state ID. I had a really hard time that month! That’s when I decided to re-calibrate how I handle it these days. I had to segment my days. With all of my disease progression in these 22+ years, sadly, my brain does not work as it used to.

I’ve had to space out paying my bills after I receive my disability check and I I plan my appointments months in advance. I had this calendar year scheduled in April.

I am a nerd! I have no problem with that! And because I am not sleeping and I saw this video minutes after I woke up and I was trying to get focused on being awake. This story startled me, and when I showed my Mom, the second she saw sister Wilhelmina, she said, “She’s from the order of the sisters of St. Joseph.”

When she said that, all the stories, my Parents told me about their grade school antics became clearer to me. Both of my Parents went to the same grade school in Detroit. Saint Anne’s and they were completely taught by nuns. This is how they dressed, and the story is speaking to my heart!!!:

Small

My uncle just drove my Mom to pick up the van for tomorrow’s ‘go time.’ It will only be a one day rental this month.

I have been grappling with this fact for a couple months now, but I think that I have finally accepted it.

My life is just small now. 22+ years in, my life is reduced to scheduling my doctors appointments and renting vans. I except that now. At least I am good at it. I can make schedules for everything and I have for this year. I had that completely scheduled back in April.

Last night, I asked my mom in disbelief, “ is this really all my life is made up of now?!” And the answer is just a simple, yes.

A Red Rubber Ball

I am having memories of hearing this song in the backseat of our station wagon! I’m not sure if my cousinT is with me or school friends but I remember hearing this song when my Mom would listen to 104.3.

The reason I thought of this song is because yesterday, I changed out my therapy putty. I first learned about therapy putty from one of my MS groups. I posed the question because I was quite concerned about my progressive hand strength loss..

I got the wonderful suggestion for therapy putty, and I bought some last year:

I quickly figured out that if I squeezed the putty for 17 minutes a day during an audio rosary, my hands feel a little bit better. So I had worked my way all the way up to extra firm. It’s red. But I started to notice that it was getting too soft and I needed new putty. I searched for and was able to get these:


I got this 2 pack in January. It was January 18 when I started using it so I knew I would have to change it out on June 18 which is what I did. This is what my therapy putty looked like after 17 minutes of squeezing it:


I think that it will take a couple months for it to soften with my daily,squeezing it for 17 minutes. To close it, I just smash my palm down on the top so I can close the container. That’s why I thought of that song because it looks like a red rubber ball!