Author: Jen Rios

I texted Phil when I got to Barwis and then proceeded to get out of my car.  As I was in the process of getting out, Deeds opens the door, looks at me, gives me a funny look and then closes the door.  I laughed at this but at least they knew I was here so I wasn’t going to freeze to death outside.  I transferred to my chair and made my way around the car to the door.  I heard Deeds calling out commands to the high school group just on the other side of the door so I knew that all I had to do was to open the door.  I did and Deeds pushed me inside – to the middle of the turf facing one direction as he calls out another command to the high school group in the other direction.  I turn myself around to see five high school kids walking toward me doing leg raises.  I was COMPLETELY in their way!!!  This got a HUGE laugh from Deeds as well as from Phil from the other side of the gym.  I hurriedly pushed myself back to the door I had just come in to get out of their way.

I made my way over to the chairs when it was safe and waited for Phil.  He pushed me over to the plyo boxes and I thought my legs felt pretty loose until he grabbed my left calf then ankle.  He stretched me and I told him that I should stand today.  He told me NOT to tell him how to do his job.  But after a little while longer, he had me push my chair back and he stood up. He pushed me over to the stander.  (I KNEW it!).

Phil got me all strapped in and cranked it up.  I concentrated on keeping my shoulders back and putting weight on my feet.  It felt good!  My knees were resisting minimally so that felt even better.  Phil uncranked me and said we will  stand one more time.  The second time he cranked me up felt EVEN BETTER!!!  Once I was standing up fully, I told Phil, “This feels good!”  He responded that I look good and he pointed out how straight I was standing.  Yeah.  That felt so good that I said it again!  “This feels good!” Because it TOTALLY did!!!  I stood for a total of 15 minutes.

TOTAL TIME IN STANDER = 126 minutes

i got in my car ALMOST by myself.  Even though I didn’t like Phil’s variation of his “bends,” it still made me laugh.  After my chair was stowed, he wished me a good weekend (I wasn’t coming on Friday), and stuck his fist out.  We haven’t fist bumped for real in a VERY LONG time so I put my fist out and he “Joystick”ed me and closed the door.  It was little progress this time but “Little by little, a little becomes a lot.”  I drove home thinking about that and that feels good.

I felt pretty tight at work and I texted Phil when I arrived at Barwis.  I was in the process of getting out of the car when Phil comes around the front of the car and scared the bejeebus out of me.  My mojo was completely off then so he helped me out and pushed me to by the chairs to wait for him.

He came and got me and pushed me to the plyo boxes.  I was tight which seems to be the norm these days but my legs began to loosen a little.  Then he told me to go over to the white table.  That table has recently lowered and I told Phil that I didn’t like it.  He pushed me there regardless and told me that me feet wouldn’t touch the floor so it didn’t matter.  He put me on the table after I was unable to do any moving after I stood.  My feet dangled over the side without touching the floor like he said.  He sat in my wheelchair and kicked my feet three times and they remained relaxed.  On the fourth kick my legs tightened up and he looked at me and smiled and told me to relax.  I really tried and then he  kicked my feet some more.  This time it was MY turn to smile at HIM!  My feet remained loose.  Then they tightened up again and HIS smile returned.

My legs began tightening up more and more as I was on the table.  Phil kept telling me, “Namaste.”  I thought his choice of words kind of funny.  Not too long ago, I was just asking a colleague about the direct translation of that word and how it is used.  She’s really into yoga so she told me all about it.  Now I knew Phil wasn’t telling me that he respects the light in me and bows to me by saying this but I understood that he wanted me to relax.  I did.  A little.

He took me out to my car and again, I didn’t like this variant of his “bends.” I think he did it on purpose.  It wasn’t until I was almost asleep that my legs TRULY did relax.  I chanted, “Namaste” over and over to myself as I drifted off to sleep.  Now I know this was a VERY loose/incorrect use of this word but it reminded me of Barwis and Phil so I slept EXTREMELY WELL until I was awakened a little before my alarm in pain.  Well, it DID rain today!  I’ve learned to appreciate Barwis for the good convo I have with my boys, the great stretch, and the laughs until I am more actively productive.  Until then, Namaste.

I got out of my car by myself  when I got to Barwis.  The door was open and I could hear Phil barking out commands to the high school group.  It was cold so I had my head down as I pushed myself up the ramp.  The ramp proved to be a little bit too steep for me to get through the door by myself.  I gave it the college try but to no avail.  I hear Phil’s voice coming closer so I look up as he grabs the front sides of my wheelchair to pull me through the door.  I look at him and smile.  WE WERE MATCHERS!!!  I happily exclaimed this fact to Phil to which he told me that he was going to take his sweatshirt off.  We were both wearing a royal blue sweatshirt with black sweatpants.  This fact makes us matchers!!!

Phil called me over to the plyo boxes when it was my time.  I was feeling better and hoped that it would be more than just a stretching day.  But then Phil grabbed my left ankle.  My leg felt A LOT tighter than I thought it was.  I was disappointed.  I have wanted to do so much more than just being stretched (not to say that being stretched eventually will feel GREAT but it kind of hurts during the initial stretch) for so long.  I had just recently talked with my cousin Kimmy about persevering even when nothing seemingly is coming of it.  We also talked about the nonlinear nature of my journey.  Both having MS, we know what it’s like to have setbacks, “off” days, and frustration with not being able to control your body.  Looks like I’m just going to get stretched.  So be it.

My legs started to loosen up and it seemed promising.  After a little more stretching, Phil told me to head over to the stander.  YES!  Phil strapped me in and I was SUPER excited!  My feet were completely flat and I thought that that would translate to good things as the stander was cranked up.  I was correct!  My feet were flat with weight fully on them and it felt REALLY good!  I stood 2 times for a total of 15 minutes.

TOTAL TIME IN STANDER = 111 MINUTES

So, I spent the ENTIRE time at Barwis convincing Phil how cool it was that we were MATCHERS.  I told him that we should take a picture but he wasn’t having it.  Every time he put his hood on, I put my hood on too and laughed

I threw all my big time weapons at him like “I can’t even walk!  A picture would make me happy!  You will deny me that happiness?!” and “It has been SO LONG since our last selfie!” and “I’m getting a milestone today, 100+ minutes in the stander!” He remained silent this whole time.  Then he pulled his phone out and took this:

#DaisyandPhil #3

Phil pushed me out to my car.  I tried, but he had to help me get in.  I didn’t LOVE his “bends” this time but he took the picture and sent it to me so…

I’ve tweeted this pic like 20 times so far.

I felt a little bit better as I drove to Barwis.  I didn’t feel as tight as I was feeling the previous week.  I texted Phil and he opened the door for me.  An intern came to help me a bit and she pushed me into the building to by the chairs to wait for Phil.  When he was done and it was my time, he pushed me to the plyo boxes.  Just a stretch.  I knew it.  That fact wasn’t so surprising to me.

Phil began with my left leg.  It wasn’t as tight as last week but it still was pretty tight.  My right leg was a little bit looser but not much.  After some time, Phil told me to bring my left knee to my chest.  It has been easier in the past but it was kind of smooth.  I exclaimed, “ALMOST like butta!” My right leg was the same.  It wasn’t SUPER difficult but it wasn’t as smooth as it HAS been in the past.  “ALMOST like butta!”  Phil mimicked me each time I said it but my legs DID begin to loosen up.

When my time was over, Phil pushed me outside.  I was able to stand but not able to move into my car.  After 3 tries, Phil put me in my car.  The “bends” were a harmony this time.  I started with my favorite variations of Phil’s “bends” as Phil was giving a new variant of them.  The fact that we BOTH were saying it, made me laugh harder!  My legs felt better than when I got to Barwis but they still kind of hurt as the cold sets in further.  I slept most of the night but not all of it last night.  I really have been thinking about how difficult things are now…but it has to get worse before it gets better… Right?

I got to Barwis a half-hour late!  I had just got excited because I-96 was opened so getting to Barwis was A LOT faster and the freeway looked REALLY good! Except when you are on it at a standstill.  That was me yesterday.  As time was going by, I couldn’t believe that I wasn’t there yet.  I texted Phil, “I’m coming!” to which he responded to text him when I get there.

I finally arrived and Phil comes out to meet me wearing his AWESOME Elf costume!  I laughed and asked why he was dressed like that.  He told me that it was Halloween and asked if I could get out by myself because he was going to change.  I’ll say that it would have been cool to get stretched by Elf but I understood him wanting to change.

Once Phil returned, he stretched my legs out and told me that I only have a half hour left.  It didn’t matter to me though.  It had rained ALL DAY and my legs were killing me.  Holy Cats!  Phil has been saying that ALL WEEK!  I told him that I don’t know that I LOVE that phrase but he continues to say it.  I think he told me that one of his roommates said it and he liked it.  I am allergic to cats so I don’t know that I WILL love it.  My legs felt a little better so I slept most of the night.  I don’t appreciate the slump I find myself in now but I know that this too, will pass and have to wait in out but… Holy Cats!  I would LOVE to walk soon.

I was able to get out of my car by myself but the roll down doors were closed when I pulled up to my spot.  Before I got out of the car, I texted Phil and asked him what I am supposed to do.  He opened the door next to the roll-down door just after I closed my eyes to rest a little bit.  This week has been EXTREMELY difficult at work and I STILL am exhausted!Phil came out of the door just as I got in my chair and he pushed me inside after he made fun of my hat.  It was REALLY cold yesterday so I didn’t even care!  He was working with someone so he pushed me to the chairs to wait.

Phil called me over and I told him to come get me because my wheels were still cold and I had already taken my gloves off.  He pushed me to the plyo boxes.  He let me go a little way from the corner box and he went to his office.  I didn’t want to touch my rims because they were REALLY cold still so I let myself hit the corner of the box.  My foot hit and I called to Phil’s back that he,  “Almost snapped my ankle off” with a laugh.  I talked about the weather with his previous client until Phil came back.

Phil came back, sat on the corner box, and grabbed my left ankle and put it on his right thigh and exclaimed how extremely tight my leg was.  It hurt pretty badly as he raised my leg and I knew it was  going to be ANOTHER day of just stretching.  That’s disappointing but not surprising.  As Phil is stretching me, Meghan Trainor’s song, “All About That Bass” came on and he yelled his approval.  He began mouthing the words and did this little move to “From the bottom to the top” that made me laugh.  My Mom has always told me that I am an easy laugh.  What can I say?  If something is funny, I’m going to laugh!  It’s a fact.  It’s a fact that Sean tries to capitalize on when he is getting in trouble.  I tell him when he does this when I’m laughing that, “I may be laughing but I’m still mad and you’re in trouble” once I am able to gather myself enough to find my voice again.  It has been REALLY nice that “my boys” (Connor and Phil) can easily make me laugh especially this week that has been SO STRESSFUL!!!

My legs began to loosen up slightly as my time was up.  Phil took me out to my car.  He told me to get in my car on my own.  I objected because the arm of my wheelchair is still broken but he didn’t budge and told me that I depend on him too much.  Even with a broken chair, I was able to get 82% into my car on my own, Phil helped the rest of the way.  As he put my feet in, I told him that Mr. Curl is good at getting my legs in and that I told him that I told Mr. Curl that he sings when he does it.  He objected that he does NOT sing and I gave him the example of his “bends” that I told Mr. Curl.  He laughed and stowed my chair.  He told me that I did a good job as I stuck my fist out as he grabbed it, shook it, and yelled, “Joystick!”  I told him that, “I didn’t DO anything!” as he shut my door.  He opened it up and said, You loosened up” and he closed the door again.  Not much… Unfortunately.

I was able to go to Barwis at my normal time because my normal Monday after school “Move It Monday” workout was canceled.  My school has experienced the tragic death of one of our students.  I was a bit early to Barwis and I sat in my chair with my eyes closed.  I was SO exhausted!!!  The staff had a VERY early meeting and it was incredibly difficult for me to keep it together amid all of these middle school students who may be experiencing death for the first time and how they did not know how to handle all the emotions that accompany it.  When it was my time, Phil asked how I was.  I told him that I was exhausted!  He told me that m y legs were really tight (no wonder, right?).  He stretched me at the Keiser machine.  “Staying Alive” came on and Connor busted into the gym struting it exaggeratedly like the BeeGees and singing just like them.  He circled the Keiser machine like 4 or 5 times singing the whole while.  I HAD to laugh!  I was surprised that he knew all the words!  I was grateful for that laugh.

Just after that, Phil had me attempt to stand.  I tried 4 or 5 times and was unable to stand to a *BINK.*  Phil had me go over to the white table.  Jerome sat next to me and talked with Phil as he stretched my legs out.  He stretched me until my time was up.  I lost the screw to the left armrest on my wheelchair over the weekend so the armrest keeps on moving.  Phil took me out to my car and told me to get in.  I told him that, “I don’t want to try.”  He was shocked by my response so I knew I needed an explanation.  “My wheelchair’s broken.”  I said to which he responded , “Oh yeah.”

He put me in the car and gave ANOTHER version of the “bends.”  I don’t know that  I lOVED this version (he was kind of yelling) but it made me laugh regardless.  He grabbed my fist and shook it because I was too tired to pull my hand away.  I drove home feeling even MORE exhausted and not necessarily as loose as I normally do.  Well, no wonder, right?  I went over the events of the day in my head and was saddened for all of my kids.  I tried to relax but could feel my legs starting to tense a bit.  I stopped resisting and began to cry.

My legs were pretty tight on Friday.  Phil came out to help me out of my car.  He started stretching me just inside at the white table.  He told me that we weren’t going to the stander because I was too tight.  It bothered me a bit but I knew that my legs were tight.

As time went by, I could feel my legs loosening up.  Toward the end of my time, Phil was holding my ankles with my legs straight out.  The white table is higher than my wheelchair so my feet were elevated.  Phil told me to bring my left knee to my chest.  I could feel that my leg was relaxed and as I bent my knee with ease and brought it to my chest, I exclaimed, “Just like butta!” and began to laugh.  Phil shook his head and told me to, “Shut-up.”

Each time he told me to bring either my right or left knee to my chest, I responded with, “Just like butta!” or “Butta! or “like butta!” Laughing each time.  Each time I responded with one of these exclamations, Phil told me to, “Shut-up.”

My time was up so Phil pushed me out to my car.  My legs felt loose but TOO loose to stand on my own so Phil helped me up to my feet and into my car.  He gave me another variation of his “bends” and a weird hand grabby “Joystick” on his part that I refuse to count.  Well, it wasn’t a HUGELY productive day on my part but it feels REALLY good that my legs are SO loose… Like butta!