Author: Jen Rios

I’ve been watching a lot of free on-demand movies. When Xfinity changed over the boxes  awhile ago, I see pictures of the movie Options. It works out for me when my eyes are tired and I can’t See well enough to read the titles.The movies change all the time and I end up scrolling Pretty far down  to discover some old school gems.

I recently discovered this old school gem a couple of days ago and I immediately stopped scrolling down to look for movie options and started the movie! I’ve already watched it three times! I still know all the words!   Because Sean is in school now, I can sing at the top of my lungs during the day!

Perhaps I need to add a little bit of a backstory. I was 13 when this movie came out. I was at home sick with chickenpox (200  on my face! I counted.) the same time my Dad was recovering from a recent hospital stay. My days consisted of waking up to watch game shows and then watching Pocahontas. We had an automatic rewinder so the movie would rewind and the VCR would spit it out. I was cross stitching then to keep my mind off of the edge and when the movie would come out, I would push it back in. I would watch the movie three times a day.  It drove my Dad nuts!  I no longer have to wait for the movie to be on Disney Jr.,  instead  I can watch it anytime!  Score!!!

Having had MS for  almost 18 years, There are MANY things that I miss!   I don’t want to talk about the obvious things like walking and driving but rather, focus on things that people don’t realize I can no longer do.

I miss writing.

Sean started school yesterday and I had to sign the syllabi from each teacher for his classes.   My signature does NOT look like it used to!

I am saved by ‘dictation to text’ capabilities in my phone so I can still “write” blog posts.   But, it’s the physical act of writing that I can no longer do. I cannot hold a pen.

My Mother or my son will sign for me when I use my credit or debit card in public.   They write the checks out for me and I just sign my name by repeating my name  to myself a number of times before I begin writing it.

I didn’t have a problem taking notes in college or even writing when I taught. I think it’s sad that if I hadn’t injured my knee, I would still be writing more easily than I did last night to sign my name seven times. It didn’t look very good at all but anyone can tell my signature by the unique way I write my, “J’s”

I used to love my writing! In high school, I started writing, “Obscenely large” (that’s how I explained it people).  Retrospectively, it’s probably because I was losing control of my fine motor skills  even back then. I wrote even bigger when I graded papers!

My Mom will forget that I can’t control my hands well by telling me to write myself notes. Yeah, not so much! She tells me that my hands look functional but alas, I have learned that looks can be deceiving when your body has MS and nobody can tell!

My knee popped out last night as I was getting ready for bed.   It was a stunning realization to recognize that the pain of my injury still lingers, very close to two years later!  It was a huge bummer for me because it came just after a bunch of my friends and former colleagues came over to see me and to hang out. I had such a great night to end with my Mon (who came by just after they left and  to help me get into bed) having to manipulate my ankle until my knee popped back into place. It hurts so badly!

Once I was in bed, I laid on my back as my left knee throbbed . I wondered how I was going to get to sleep. I rolled over to my left so that I was on my stomach as my knee still throbbed.   As much as  I miss Barwis so much that it hurts and I feel that many of my  physical gains that I got there are leaving me, as I laid there on my stomach, I realized that I still had  this thing! Michael used to challenge me to lay on my stomach for 10 minutes before I fell asleep.

I used to be a stomach sleeper before I got pregnant. Being pregnant, you can’t sleep on your stomach so I became a back sleeper. As Sean got older, I still slept on my back because I was losing control over the muscles in my body so I laid flat on my back and would not move throughout the night, if my arms were crossed over my chest, I would have been a vampire!

With all the stretching that Jesse, Adam, Nick,  Mike, and Michael did, my muscles were loosening up and all the strengthening they helped me with, I was able to control my muscles a little bit more.   Because I sit in a chair all day, Michael would tell me to stretch out my adductors (or was it aBductors?)  Adam used to tell me the difference all the time but I can’t quite remember it now.

But being seated in wheelchair these muscles are constricted because I’m sitting so laying on my stomach would stretch them out. It was really painful  at first and took a lot of time to build up to me being comfortable laying on my stomach again. Well, I still am in a chair all day but I can lay on my stomach throughout the night.  In fact, now, I sleep on my stomach for most,  if not all, of the night.

As I was trying to drift off to sleep with my eyes closed and my knee still throbbing, I thought about all my trainers at Barwis and Michael challenging me to lay on my stomach and how long it took for me to get comfortable  to sleep on my stomach for the whole night again.   I was a bit sad knowing that a lot of it is lost but not all of it. I really can’t wait to get back to Barwis but I also can’t imagine my knee NOT hurting; so until then, I will have the fondest memories of working with all of my trainers at Barwis!

I’m slowly figuring out which position is most comfortable for me In my new chair. What works out for me is that my feet are like this, my knee hurts a little less.

From the second I wake up and get into my chair, I  adjust my feet to look like this.

The above pictures I took in the morning when I got into my chair. Over time, because I have NOT been to Barwis and have not had Adam, Nick, or Michael stretch my ankles, my feet end up looking like this:

My feet to get inverted and I have a supinated foot over time.

I am 100% certain that this is happening because I have NOT been to Barwis Methods in just about two years. I never understood why Nick or Michael did this but now I do! It was to  combat my feet doing this.

It makes me sad that both my feet do this, my right or “poop foot” does it just a bit more!

I never thought I would be grateful to have a motorized chair but I am! I can adjust the height of my feet to accommodate my leg spasms and knee pain. I still experience knee pain by the way! I don’t sleep for the night in my chair so when I am in my bed, my knee hurts, it popped out a few nights ago and hurt extraordinarily the next day!

It frustrates me so much that my feet are doing this and I am saddened by all the strength I have lost not being at Barwis.   Alas, my knee still hurts so I can’t imagine anyone manipulating  my right leg to help with my strength,

I was an easy laugh even before PBA set in and made me laugh and cry without very much input from me.  My Mom however, does NOT laugh easily!   She is a hard laugh!  I constantly send her Memes and videos attempting to make her laugh. She just kind of smiles a little bit.

However, today she refused assistance to me for my personal care needs until I  doubled her salary!   She waited until I was in a compromising position to tell me this.  I laughed uncontrollably at this request which really wasn’t a request but rather a demand. As I was uncontrollably laughing, she laughed too!  Well, I obviously needed her assistance  at that point so I doubled her salary! After I did that, she decided to help me.

I just want it known that I pay my mother.$0  for assisting me.. So double that is $0!   I really like laughing WITH my Mom!!!

I’ve had a thing for Bradley Cooper since Silver Linings Playbook.  I loved him in, Burnt (which I have seen 30 times)!  I cried my eyes out in, American Sniper!  I saw Aloha in a movie theater by myself and even tolerated his crazy hair in, American Hustle. It trips me out that he is the  voice of the raccoon in Guardians of the Galaxy!

I just saw the trailer for, A Star is Born:

At about 1:14 into it, I screamed! I really have a thing for Bradley Cooper!  Those eyes kill me!  I showed my Mom the trailer and she kind of laughed when I screamed. I showed Sean and he said that it looks, “ kind of like an OK movie.”   I told him that he could take  me to see it when it comes out! He kind of laughed.

My Mom asked me how old he was and I asked google and he is 43. I got excited because it’s completely acceptable for me to be with him because he’s 43 and I’m 36. My Mom asked me if he had any kids and I told her that I didn’t know. She also googled that and showed me a picture  and article that stated that he was practically married to his baby mama; and my heart broke! She laughed at my face!

Well, apparently I cannot compete with a Russian model and I have not experienced heartbreak for a long time. But seriously, my heart broke! She asked me why and I told her that it’s obvious now that he’s not waiting for me!

I STILL want to see that movie though! His eyes are killing me! I’m going to watch, Burnt again today I think!  It doesn’t really matter though, Bono is 58 and I still love him! Matthew Stafford is only 30 and married with twin girls and I still scream that I love him at the TV  every weekend during football season! I’m so excited for football season to start again!   Bradley Cooper is my most realistic crush though. He’s more in my age range. His eyes really do kill me!

 

So, I had to vote today.   It’s rare for me to get out of the house in this heat especially because I have to transfer to my manual chair to do so. Absentee ballots are not as fun and I would not get a sticker once I voted so I made my way to my local elementary school to cast my vote.

My Mom took me this time and I had a couple of the same woman checking me in from the last time. My precinct does not have a disabled voting booth so my Mom had to help me cast my vote.

As my Mom drove me back to my house, I had to celebrate with an iced chai tea latte and a green goddess salad  from Panera! Sean was cutting the grass so my Mom got out of the car to  give him some instructions and supervise.  I turned the radio on. I remember years ago that a former colleague told me that you know you’re old when you don’t to listen to new music. I settled on the 90s on nine station in the car.

This song was playing:

I don’t think that is what makes you old, I think it’s the fact that I no longer have the pipes to belt that song out with my, “chest voice,” and only can use my. “head voice.”  My cousinT, Shannon, explained the difference to me years ago when I was in high school and I had no problem belting things out then. I didn’t know that would change.

Since I was in the car by myself, I could belt this one out when it came on!:

I think Natalie‘s voice is more in my range then Mya’s.   I was younger when the 10,000 Maniacs song came out but listening to the radio before my Mom came back to get my wheelchair and me out made me realize that I’m pretty old!