Author: Jen Rios

Garret’s mom helped me out of my car on Wednesday; she is REALLY good at transferring people!  I felt a bit tight and my legs were kind of stiff but it was a little bit easier when Phil stretched me at the plyo boxes.  I was talking with Jerome and  the new intern the whole time so I didn’t really notice.  I’ve figured out that I tend to ramble when I am uncomfortable.  Being stretched went along with being uncomfortable.  It hurts!  I realized that I do this at my Dad’s viewing before his funeral.  I saw his friend Peter and he  smiled at me and we sat on one of the couches at the side of the room.  Later, I saw him talking with my Mom in the lobby and she called me over and asked if I had seen Mr. Kramer.  I looked at him apologetically and said, “Yeah.  I already talked his ear off!”  He gave me a small understanding smile.  I was a bit uncomfortable just after my Dad’s death too.

My legs were really beginning to loosen up and I asked Phil what we would do next because they felt good.  It would feel REALLY good to do something a little active!  He kind of shrugged his shoulders and stood up and pointed to the stander.  He pushed me over and I reminded it to do its worst!  Phil and the intern strapped me in and Phil began to crank the stander up.  My body (my legs) resisted minimally and I kept telling Phil that, “It feels REALLY good!  He would tell me, “Good!  Keep standing!”  He would remind me to put my shoulders back and adjusted my feet a bit.  It REALLY felt good!  It was the first time I felt REAL weight on my feet and that felt good!  I had no idea how long I was standing until Phil told me that my time was up and began uncranking me.  I’m just standing once?  I told him to take a picture of us when I was is the stander but Phil was bumming me out (as usual) and said, “No.”

He told me that I stood for 20 minutes!  What?!  Really?!  YAY!

Total time in stander: 96 minutes

Phil put me in my car with ANOTHER different variant of his “bends” after I tried on my own a few times to no avail.  My lower back was KILLING me!!!  I drove home feeling tired but accomplished and that feels REALLY good!!!

 

I had a REALLY BAD case of the “Mondays” this past Monday!  I drove to Barwis with the radio on but not really listening.  I pull in to Barwis parking lot and am bracing myself and trying to force myself NOT to be a “Debbie Downer” for Phil.  As I turn in to just in front of the roll-down door, Dan comes running out with his hands up.   I stopped and rolled my window down to see what was going on.  He looked like it was something urgent.  He looks at me and flipped my side view mirror in and beeped my horn repeatedly and yelled, “Quit beeping your horn, Rios!”  As he did this Deeds peeked his head out of the door to see what was going on.  Dan messed with my windshield wipers and the radio controls on my steering wheel.  The whole time he was doing this, all I could do was laugh.  Phil comes over as well now too.  If I could take a picture from what I see in my mind I would because just then, I saw Dan, Deeds, and Phil smiling and kind of laughing.  My boys.  I needed that.

Once I get inside, Phil told me to go to the white table and that he will be right back.  I wiped turf pellets off the table (I HATE that!) and Dan was working close to me as I was doing it. I looked at him and smiled and told him that I REALLY needed that today and was glad he did that to me.  He smiled and asked why.  I told him that I was having a poop day and he asked why.  I shook my head and smiled and told him that if I talk about it, I will cry.  He told me not to do that, let it go, and smiled at me.

Phil comes over and was about to put me on the table when Eric walks over.  He didn’t stay for very long and then walked away and began laughing.  I LOVE Eric’s laugh!  Just then Phil and I realized why Eric came over and why he was laughing.  We left that area with our shirts over our noses.  GROSS!!!  Phil put me on the table and stretched me while I sat with my legs dangling over the side and I did some leg curls.  Eric came back over and did it again!  With my shirt over my nose, I told Phil that I didn’t think this was good for my health.  You know, being exposed to toxic fumes!  Eric is one of “my boys” too!  As the smell dissipated, Phil helped me to lay on my back.He stretched me and I yelped and laughed continuously.  I yelped because it hurt and I laughed because it was unbelievable how much it hurt.  I asked Phil if my legs felt any better and at first he said no but after a while, he said a little bit.

Then my time was up.  I got in my car 70% by myself.  Phil helped me the rest of the way in and stowed my chair first giving a new variation of his “bends” which made me laugh.  We said goodbye and he curled my hand into a fist and shook it yelling, “Joystick!”  As I drove home, my legs relaxed and felt good.  Monday night, I slept soundly.  I really dug seeing all my boys at Barwis!  It made my Monday not SO bad.

I was a bit preoccupied Friday at Barwis.  Phil came out to get me out of my car.  I have been frustrated with my productivity or lack thereof at Barwis as of late.  Phil pushed me to the plyo boxes for a stretch which unfortunately was not surprising to me.

My left leg was EXTREMELY tight and I knew that would be problematic for me.  It was.  I sat in my chair as Phil stretched me and I watched Garret work.  He has made TREMENDOUS strides since he has started coming to Barwis.  I asked Phil when he started coming.   I thought it was last winter but Phil told mr that he has been coming for less time than that.  I watched him completing squats while working with Megan.  He was recently paralyzed and I have watched him make continuous, linear strides.  These kinds if strides have NOT been the case for me.  Having had MS for almost 14 years, I know that this will NOT be the case for me.  I was saddened by this realization and looked at Garret working and said kind of absent-mindedly to myself more so than to Phil (even though he heard and answered me), “I wish I didn’t have MS.”

I was told a long time ago that the unfortunate part of my MS diagnosis was that I would have to LIVE with this disease.  As time goes on, I realize how difficult this disease really is to have to live with.  Even Mike told me that I will ALWAYS have MS but the goal for me coming to Barwis is for me to become more ambulatory.  For me to walk.

Phil has been working with me for over a year to reach this goal.  It bothers me that outside forces play such a BIG role in me walking.  Lately, the weather has played a HUGE role.  I KNOW that I have the desire to walk.  I have the  “fire in my soul” and the “beast in my belly.”  As my The Script song suggests.  But I need that spark to really explode.  I heard Gavin DeGraw’s new song on the radio on the way to drive my son to his football game yesterday (they won) and said that this song would be a GREAT NFL Network highlights reel song.  I heard it this morning (either on NFL Network or Fox Sports pre- game show). I TOTALLY called it!  I thought about how much I REALLY like that song and I have decided that I WILL BE on fire.  Eventually. For now, I’m just a smolder.  I’ll wait for it though.  It will be worth it.

I remember my third year teaching.  I taught 7th grade English back then.  I remember it because it was the first year that I felt old.  It has always been something I do when I would need to get students’ attention while they were doing group work.  I would call out, “Stop!” Once I had their attention, I would add, “Collaborate and listen.”  Also, when I would need to call the office or do something on the computer or set up the DVD player, I would put my hand out palm side down and would tell them to, “Just chill.” And then I would add, “’til the next episode.”  I don’t remember what I needed to do but I told them to, “Just chill” and added, “’til the next episode.”  I looked at my aide and said, “These kids don’t even know.”

A student who was seated at the front table told me, “I do!”  I looked at him inquisitively and asked, “Who?”  He looked back and smiled.  His name was Ritchie and he had a GREAT smile!  The smile usually came after he did something mischievous or not all that “good.”  (Hence the seat at the front table).  “It’s Snoop Dogg, Miss.”  I was shocked but pleased that he knew but before I proceeded he added, “I know all the old school Snoop.”  I stopped and repeated what he said a bit aghast.  “Old School Snoop!  I was in high school when that came out!  Ritchie, you’re getting an ‘F.’ ”

I was extremely tight as Phil stretched me at the plyo boxes.  My left leg kept “boing”ing up and he kept telling me to, “Just chill.”  I didn’t share my memory of Ritchie with Phil because the stretch was hurting SO BADLY!  I asked what we were going to do.  He told me, “Stretch.  Unless this relaxes.” Pointing to my left leg.

Well, it DIDN’T relax no matter how much I willed it to.  My time ended and Phil pushed me out to my car.  He lifted me to my feet and I helped as he sat me on the driver’s seat.  He stowed my chair and we did the weird hand grabby thing for a long time.  I was able to grab his hand, shake it, and yell, “Joystick.”  He said it didn’t count, shut my door, and walked away.  As I drove home, my legs finally began to “Just chill… ‘Til the next episode.”

 

I felt tight all day at work.  I was awakened yesterday morning about midnight in excruciating pain and to the sound of heavy rain.   I had to get out of bed and sit in my wheelchair.  My legs felt better sitting so I slept the rest of the night (all 4 1/2 hours of it) in my chair.  When I got to Barwis i was determined to have a good showing but just as I turned my car off, my left shoe slipped off as I was moving the driver’s seat back.  In this case, it is IMPOSSIBLE for me to get my shoe back on by myself so I texted Phil to come help.  Jerome was getting something out of his truck so I asked him for help also.  He came over and was helping when Phil walks out of the roll down door.  I wasn’t sure if he was able to come out and help so that was why I asked Jerome to help.  I smiled and was happy to see that Phil came out to help me.  Jerome finished and Phil came around my car door and looked to see if I was okay.  I was.  Then he looked at me and said, “Get out by yourself.” and turned and walked back inside.

I was determined to get out by myself and I did.  I think I may have been a little slow because Phil comes back out just in time to see me about to wheel in.  He stopped and said, “I’m proud of you.  Good job.”  and continued working with who he was working with.  I was a bit early so I sat by the Keiser machine and waited.  I watched the young athletes running with longing.  When it was my time, Phil came over and told me to unlock my chair and pushed me over to the plyo boxes.  He sat on the short box and began stretching me out.  I asked him how I felt and he replied, “Tight.”  Yeah.  I thought so too.  Bummer!  He told me to go over to the white table.

I looked at the table and wasn’t feeling it.  I KNEW it was going to hurt and I didn’t want Phil to hurt me.  He looked at me and asked, “Stander?”  I nodded and that was that.  We went to the stander and I took in my breath.    It hurt and my legs resisted more than last time.  Mostly my quads but I breathed through it as Phil told me to.  I stood three times for a total of 14 minutes.

As I was standing, I asked Phil how he would feel when I’m walking.  He didn’t look at me but asked what I thought and told me to guess.  I told him that I didn’t want to guess rather I wanted to know.  He told me that he would be happy.  He’d be proud.  He’d be ecstatic.  I didn’t know if he was serious or just patronizing me.  I kept asking as he put me in my car.  This time as he put me in, my feet remained on the ground and I think I helped a bit.  Phil said it was easy as he guided me onto the driver’s seat.  Phil’s “bends” returned with a vengeance and I REALLY liked this variation.  They made me laugh.

I drove home wondering if Phil will REALLY be proud of me when I’m walking.  When that day comes (WHENEVER that day comes), I don’t know that it will matter if he is sincere or patronizing because I will be proud of ME enough for the both of us.

Total time in Stander = 86 minutes

I was able to get out of my car by myself yesterday at Barwis.  I was tired and I felt my legs tightening all day so I was not sure what type of day I would have at Barwis.  Phil was a bit of a Grumpy Bear and I called him “Grumpy McGrumpster” as he stretched my legs.  I called him Adam and reminded him that Phil is NEVER grumpy.  They remained REALLY tight and he told me to go to the stander.  I asked which one but then quickly told him that I was going to the OG stander.  I like that one better.  Once we got to the stander, he put me in the stander and began to strap me in.  He began cranking it up.  My legs began resisting the straighter I stood.  I breathed through it and put my shoulders back the best I could as Adam has instructed me to.

I stood for 6 minutes.  It didn’t feel like that long.  Then he cranked it up again.  Another 6 minutes!  Standing is really starting to feel normal.  It feels like my body is remembering what muscles to use.  The third time Adam cranked it up, I told him that I could stand for days on my left leg.  My right leg was having a little more trouble relaxing and was resisting instead.  I stood for 6 more minutes and looked at Adam and exclaimed that I stood for 18 minutes!!!  He was shocked that I did the math so quickly in my head.  I thought back to 3rd grade, Mrs. Crisco’s class.  I remembered the flash card game we used to play at the end of the day.  The student in the first seat closest to the door would stand next to the student’s desk behind them.  She would hold up a flash card with a multiplication problem on it and whoever said the correct answer first would move to the next student’s desk.  If the student who was sitting was first, the standing student would then sit down.  I remember making it all the way around the classroom.  I was good!  What can I say?  It was 3rd grade!  I don’t remember how many times would recite the times tables as a class.  Probably millions!

Adam cranked the stander up one more time for another 6 mintues.  As he uncranked it, I said, “6 times 4 is 24.”  I was so tired and my brain was a bit foggy that I checked using my fingers and Adam asked, “Really?!”  Well, I just wanted to be sure!

Total time in stander = 76 minutes.

I was extremely tired so Adam put me in my car.  Now, I like Phil’s variation of  his “bends” but I decided yesterday that I don’t like Adam’s so much!!!

 

I turned the radio on as I was driving home from Barwis yesterday and The Script song had just began.  Superheroes. This  song has made my blog in my “Tunes” strand and has never been listened to with me NOT crying.  Yesterday was no exception.  As I drove home this song couldn’t be MORE fitting for me.

At the end of the workday for me (the school day for the kids) yesterday I was speaking to a colleague about my work at Barwis.  I told her that working at Barwis for as long as I have I have learned the importance of “going to fatigue” (as Jon told me two summers ago) and how you ALWAYS have more in your tank than you thought you did.  I can push myself that far now.  This fact has been good for me in many ways.  In addition to knowing that I can push myself further than I thought I could go, I also have to persist when I realize that I can push myself no further without reaching my goal.  I have to persist when my legs are shaking and I am unable to stand to a *BINK* at the Keiser machine.  I have to persist even when I can’t get any more steps off.  I have to persist when I need someone to help transfer me from my car to my wheelchair (Matt, a new intern, helped me yesterday).  I have to persist MOST when I can’t do anything more than be still and breathe through it when Phil is stretching me.

I have been working at Barwis for just about 15 months and I am NOT walking consistently – YET.  I haven’t been fighting for  this “all my life” but I AM “struggling to make things right” (with my walking).  It is a VERY long road but I persist.  Yesterday WASN’T a “Walking Wednesday” (I’m having difficulty remembering them with clarity now) but I did 5 sets of 10 low back hypers (when Phil pushes my shoulders down AFTER I get into 1st position in ballet). Phil HATES when I do that but I HAVE to have good form!  I did these 50 hypers in quick succession.  My lower back as well as my belly burned while doing these.  That is my favorite line in that The Script song.  Because I feel that I have a beast in my belly and it IS hard to control.  I’m  not “learning how to fly” but rather how to walk and I will have persistence no matter how long it takes.

Scheduling conflict caused me to cancel Barwis today.

I remembered that on Friday I got another variation of Phil’s “bends.”  I find myself saying it to myself when I get into my car by myself.  It’s nice that I have a few variants to choose from.  They ALL make me smile and laugh.

We’ll see what Wednesday holds…

Phil came out to get me from my car at Barwis on Friday.  Mr. Curl had to come out to get me from my car in the morning  at work and then I was faced with a succession of a series of unfortunate events and then my shoe came untied.  I felt like Tanya Harding after everything went down.  I emailed Phil the link and I remember watching the Olympics when it happened.  I was frustrated and could feel my legs tightening up all day at work.

Phil could feel it in my legs as well when he stretched them out at the Keiser machine.  He started squeezing my calves and told me that he was messaging them to try to loosen them up.  I looked at him and shook my head and said, “Ow!  That hurts!”  He stopped and told me to go to the table.

He put me on the table and I laid on my back.  I kept exclaiming, “Ow!” because it hurt.  To divert my attention from the pain,I told him that Sean’s first word was, “Ow.”  I told him that a lot of people told me that that didn’t count as a word but I disagreed because he knew when to use it and with the proper inflection.  I was still walking back then but I was becoming a bit wobbly.  I bumped into a lot of things and dropped a lot of things on my feet.  I always would say, “Ow!”  So Sean knew to say it when he fell down when he was walking or when he would bump in to things.  So, it counted.

Phil told me to roll over on to my stomach.  Doing this got A LOT of “Ows.” Phil always asks me where it hurts and I can never answer because I am in so much pain.  I think it hurts most in my quads but also in my hips and lower back because my legs are used to being in the sitting position.  Whatever the reason, IT HURTS!!!  Ow!!!

Phil put me back into my chair and after 3 attempts to do it myself, he put me into my car as well.  He, “Joystick”ed me and closed my door.  As I drove home, my legs began to relax but I guess it is better late than never, right?