Author: Jen Rios

Late last night, my feet felt like they were on fire! I have had that tingling and numbness, static feeling since just before I was diagnosed. That was 17 years ago. There has only been a of couple times in my memory when parts of my body feel like I am on fire though!

Once, during undergrad, before I really knew what was going on after diagnosis, during class, my feet were burning! I went outside in a T-shirt in the middle of the winter to try to make myself feel better. Also, when I got fired, my entire body was enolfed in flames! It was kind of like Gwenyth Paltrow in Iron Man three. Then, it felt as if lava was surging through my veins.

Last night, the fire and extreme burning feeling was limited to my feet and bottom part of my shins  and calves. It was not comfortable at all! It was torturous!  Once I got in bed, my Mom began rubbing my feet. I still had my compression socks on but the rubbing made my feet feel better! However, my right knee hurt as my Mom rubbed my right foot. It felt like the bones were wobbly, rubbing, and bumping into each other as she rubbed. I told her that it hurt and she should stop.

She suggested that I put ice packs on my feet. Years ago, When I used to see Dr. Clark, (my NRT and chiropractor), his staff would give me a mini massage before I got adjusted. They would put a heating pad on my back to loosen me up before the doctor came in. I was able to purchase those heating pads. I have two of them. One is a square and the other one is for my neck so it’s a thin band.  They are similar to the gel packs they have at ATI to ice my knee. After my surgery, I put those ice packs in the freezer.

I put them both in so I could rotate them while I iced my knee.    My Mom went to grab them from the freezer and I was nervous that I wouldn’t be able to feel the cold. I can no longer feel my bathroom floor being cool  because I am not working out at Barwis. I don’t really have blood flow in my legs.

She brought them over and wrapped each pad around my foot. I could feel the cold! She wrapped her hands around the pad and squeezed. This really did help to put out some of the fire! She had them on my feet until my feet were just a little bit uncomfortably cold. Because I wasn’t in so much pain, I could  fall asleep. I haven’t had that fiery feeling in my feet for a long time! It kind of scares me until it goes away! Not that my feet feel normal by any means but at least they aren’t on fire right now.

Reminds me of my Dad:

I can mindlessly play this in the middle of the night when I can’t sleep. I downloaded this app on my phone once Word Connect got more difficult.

There are 2500 levels to the game and I will BEAT the game! Eventually. It takes my brain a while sometimes to figure out the words so it’s those, “sometimes” when I need a break and I play solitaire.    Brain games are good when you have  MS.  The only thing with Solitaire on my phone is that yiu  can’t cheat!

Sean saw me playing it a while back  and he asked me why I was playing it. I told him that it reminds me of my Dad.   My answer made sense to him and he told me that he doesn’t know how to play. That’s insane!

Last week, I woke up and checked alerts on my phone.   I get alerts from the Late, Late Show because it so funny! I saw this one and laughed out loud because, like Debra Messing, I too was dumb like this!

My situation was a little bit different and I have to clear it up. I was a signer on my Dad’s card when I was a Senior in high school. It was not $600, but I think $250 from a kid who has no means of paying it back is kindof a big deal! My Dad kind of thought so too!   Actually, it was my Mom who was making me pay my Dad back! My Dad did not cut up the card but he took it away and he did present me with the bill and a highlighter. He told me to highlight all of my charges so I could see the money I spent.

Once I saw this clip of Debra Messing on the Late, Late Show, I thought of that conversation and my Dad presenting me with the bill and a highlighter and my Mom kind of freaking out! I was sitting at the  dining room table in my brother Jimmy’s seat and my Dad was sitting in his seat. He was at the head of the table and I was to his right. His good friend, Mr. Kramer, was over and he sat at the table with us in my seat (which is to my dad’s left).

As he and my Dad were talking, I was looking at the bill  sweet as you please and highlighting all of my charges.   I might have been about halfway done reviewing the bill when Mr. Kramer  stopped talking to my Dad and looked at me and told me that, “It  might be easier if you highlight the charges that are NOT yours!” and then he laughed!

I worked two part-time jobs the summer before my freshman year at Western and I paid back all of the money that I charged. It was like $236 or something. I  told my Mom about the video clip and laughed about being so dumb!

I have not put Sean in a position to be that dumb, however. I Will not ever make him a signer on my credit card because I don’t have that kind of money! The kind of money that my Dad had, or so I thought  when I was a kid!

It’s August now and I miss my Dad so much! Coming up on 12 years  and I never thought that 12 years later that in a heartbeat it could seem like it was yesterday!   I tell my Mom that I cannot believe that I was that dumb to think I could get over it!

I  have been feeling pretty nostalgic these days! I remain in my home trying to get used to my new chair, (my knee STILL hurts by the way!)

But, I have a memory that for  probably the past12 or 13 years has completely warmed my heart!  My Mom will constantly remind me of it and make me laugh now that she knows the story.  My heart is warmed every time I think about it and I am very grateful to have had the experience!

It was just months after my diagnosis and I was at Farmer Jack’s for some reason. I don’t even remember why I was there! So here I am, walking around the grocery store, newly diagnosed with MS, and pregnant. Not even all of my family knew that I was pregnant yet! I don’t remember which aisle I was in but l I ran into my oldest brother. He knew I was pregnant. We stood in the aisle and talked because as a 19-year-old, unwed, college student, this news was pretty shocking!

As we were talking, pretty solemnly, because my life was REALLY about to change; his friend, Rich, walked up to us. I had known Rich for probably the last five years and he and my brother were pretty good friends.  He walked up to us and as he was almost to us,  when he smiled broadly at me and told me that he heard I was pregnant. When I nodded, he threw his hands into the air and with full, “Jazz hands” shook them and said loudly, “Congratulations!”

He was the ONLY person to say that to me! He is STILL the ONLY person to have said that to me when I was pregnant.   Now, 16 years later, I am very grateful to have had this experience. I looked at him when he did this and told him that he was the ONLY person to say that to me.  My brother and I just kind of chuckled with  the silent rise of your chest and shrug of your shoulders when you hear something like that.

I hold the memory  of this day dearly and very clearly in my heart and mind! I am so grateful that he told me this!

How life works out, Sean is the only child I have had and after a premature birth (8 weeks early) and a 31 day stay in NICU after he was born, I am grateful that SOMEONE was happy that I was pregnant!  I often think about the fact that I don’t know pure joy when finding out that I was pregnant.  There have proved to be many obstacles but Sean and I are alright, I think.

Thanks for letting me have that memory of pure joy with my pregnancy, Rich!  I LOVE that so much!

I’ve read about and discussed, “MS Hugs”  in various MS literature and in my support groups. To say it is a, “Hug”  somewhat of a misnomer because it does not feel like a, Hug” at all!  At least not anymore.

In the beginning years of having MS, I would feel this, “Hug.”  A slight tightening in my rib cage. It wouldn’t last very long but as the years went by and my disease progressed, this tightening would take my breath away! The spasm would get so large that it usually is accompanied by an involuntary groan.   The groan is how you react when someone squeezes you way too hard! Well that’s how it feels.

It is not a, “Hug” now,  rather it is a squeeze that affects my rib cage and spine where I lose my breath and it lasts just a little too long to be comfortable at all! It happens without warning and often. Sometimes, my legs join the party as well.

My legs will spasm straight outward.  I remember about four years ago at Barwis that Adam experienced this. He was standing close to me and I was seated on the table. My leg spasmed straight outward.

I have no control over this and they are not forgiving at all! Kind of how I am understanding my new wheelchair to be but that’s another story.   He yelled out, “You got my leg!”  And I put my hands up and shrugged because I had no control over it.

I get these hugs often in a day (mostly whenever I change positions) and I can see the effect it has on my Mom.  She tells me to be quiet when I groan quite loudly but there is no controlling it! I’ve read that these, “Hugs” are the result of a miscommunication of impulses within my body. It’s really not fun and it really hurts!

So, my Mom doesn’t like, “Lauryn” as my new chair’s name. She told me that, “We have to think of a new name for OUR chair.  I told her that it was MY chair’s name.  She wants to name the chair, “Thor” which I am NOT all about!

Sean chimed and said that we could name it, “Zion.” because the control pad is on the left side because I am left-handed. Deciding if a car is a girl or a boy depends on this side the gas tank is on. All of my cars have been girls.   I told him that I was thinking it may be a boy because the control pad is on the left similar to a gas tank of a car Being on the left; therefore it’s a boy.  He said that we could call it, “Z” for short.

My Mom was still insistent that I name it, “Thor.”  I told her that she can call it whatever she wants. It’s a slow learning curve getting used to this chair.  I don’t know how many times today I put my hands on either side of the chair as if I was going to spin the wheels.   That’s not how it works! The new chair is comfortable to sit in but it doesn’t quite feel like home yet for me.

I woke up this morning to my Mom  coming over and she asked me what the name of my chair was.  I told her that I was not all about naming it. I’m still trying to get used to it. I don’t particularly like it but I know it is good for my knee and for me.

It’s a learning curve trying to get used to it and trying to navigate around my house. It’s a lot! Sean helped me get into bed last night  because my Mom and I couldn’t figure out how to do it. My new chair it’s a lot higher than my previous chairs. I’m sure that I am taller than 4’6 sitting down but I’m not quite 5 feet tall.   this chair is pretty big!

It has settings that can lean me back to take pressure off of my butt which is good for me because I sit all day long. On Thursday at RIM, as Dave was telling me how to use the controls for the chair, he had me lean back in the chair till I got comfortable. I found a comfortable spot and I asked him how I looked. He looked me right in the eye and told me,  “It  doesn’t matter. Whatever is comfortable for you.”

Well, I’m still trying to get comfortable with having this chair.  I can’t quite process  all of these feelings yet.  Just before dinner, Sean asked me what the name of my chair was. I told him that I wasn’t going to name it and I’m not really all about naming it anyway.   He didn’t like that. He told me that I name everything, because I do! I have named all of my cars and I even have a named his car even though he says that is not it’s name.   It is! At least that’s what I call it!

I told him the process for giving a car a name a long time ago. The first song I hear on the radio when I start the car for the first time, either the first or last name of the artist, is the name.  I listened to him tell me  the process that I told him so long ago, so matter-of-factly and the fact that he remembered that; I told him that I would name my chair after dinner.

I opened Apple Music on my phone, pressed shuffle and turned it on. My chair’s name is Lauryn.   This was the song that came on when I hit shuffle:

Seemed fitting as Sean sat across from me.   Lauryn is a big ‘un!   I wonder how long it will take for me to get used her.