Month: November 2014

I pulled up to Barwis a little bit early.  It was Phil’s last day.  I don’t dig change.  I pulled up to my spot and began to cry.  Sam Smith didn’t mind.  Once I composed myself, I texted Phil and told him that I was there.  I began to get my legs out of the car and to lower my chair from the chair topper.  I saw Phil come out out of the corner of my eye and I had to draw in my breath and almost bite my lip so I wouldn’t cry.  I had him help me get out of my car because my body felt foreign to me and this was the last time that he would do this.  He wheeled me in to by the chairs and I waited.  I was early.  I talked to Dan and asked him about what I would do on Monday and about who my new trainer would be.  This all makes me nervous.

Phil came over and pushed me to the plyo boxes.  Phil grabbed my left leg and began stretching me out.  I could see the clock from where I sat.  5:17.  I asked Phil if he thought I was progressing.  He nodded and told me that I was stronger.  Then he added that I just need to put everything together then he looked at me and finished by saying, “to stand the f*** up.”  I began to laugh at this statement.  Oh Phil!  I looked at the clock again.  5:26.  I told Phil the story that my Mom has told me many times before about the day that my Dad had to report for deployment to Vietnam.  She told me that they drove EXTREMELY slow, the snow crunched under the tires.  She told me that her and my Dad’s song was playing on the radio.  This was the first time that I understood what she felt like.  I was pleased that time was going by so slowly but as Phil left gor a moment, Megan let me know that it was Eric’s last day too.  What?!  Eric came and sat next to Phil on the plyo boxes and we talked until my time was up.

Phil took me outside and I got into my car by myself.  As I sat in my car, Phil gave me a hug and I squeezed him in return and told him that I wasn’t done hugging him [back] like three times.  We talked a little and ended my time with Phil with him, “Joystick”ing me.  I drove out a Barwis’ parking lot to the light on Plymouth Oaks and Sheldon and turned the radio on.  Meghan Trainor came on and I thought of Phil’s little dance move and began to cry again.  I’m not that strong to NOT cry.

Sophie helped me into Barwis yesterday.  My legs were a bit tight so she pulled them out of my car for me.  She also pushed me up the small ramp to the inside.  I waited by the chairs until Phil came to get me.  He got the plyo box situated and grabbed my left ankle to pull my leg up to his lap.  He looked at me as he did this  and exclaimed, “Are you sh*ttin’ me?!”  I laughed.  I didn’t think it was a real question, just an exclamation of how tight my legs were.  What can I say?!  I’m a little stressed out.  Wednesday will be the last time I see Phil.  I’m a bit bummed.  I was bummed when Jesse left and I have known Phil for 5X as long! He stretched me at the boxes for a while longer and then told me to go to the blue table.

I noticed the new blue table a few times ago but had never been on it.  It’s lower to the ground and is wider than both the black and white tables.  It would look like we were going to sit around it and have an Asian tea ceremony except for its royal blue pad on top.   Phil told me to get on it and waited while I adjusted my chair a few times and then put one of the armrests up and tried to shimmy on to the table.  It wasn’t working out so well so Phil got frustrated and just picked me up and placed me on the table.  I didn’t like this table.  Phil stretched me while I laid on my back and then told me to lay on my stomach.

Before I had Sean, I used to sleep on my stomach but I stopped that when I was pregnant (OBVIOUSLY!). I remained a back sleeper until a few months after I started coming to Barwis.  As I gained more control of my body, I morphed from the “fetus” to the “yearner” and then graduated to the coveted (for me), “free fall”er.  I posted all this information in the “A Bit Of Randomness” strand on my blog.  “The Daily Positive: What does your sleeping position say about your personality?”  I write this because I am a “free fall”er so laying on my stomach should be no problem… Or WAS a “free fall”er.  I went back to being a “fetus” – Gee!  What on earth do I have to be worried about?!  I WONDER?!  Anyway, I write this because as I got on to my stomach, it was my turn to ask, “Are you sh*ttin’ me?! Because this hurt crazy badly!  (I didn’t say that because I’m not a potty mouth like Phil) but I thought it for sure!!!  Phil cracked my back and then put me back in my chair.  He hurried and just put me in the car because it was FREEZING!!!

As he stowed my chair, he likened him leaving to Michael Jordan retiring.  I didn’t let him give me the explanation and told him that if he talks about it I will cry.  Instead, he, “Joystick”ed me and went inside.  I thought about the fact that the next time I see Phil at Barwis will be the last time as I drove home.  I didn’t cry but my chest hurt… A LOT.

I brought Sean with me to Barwis on Friday.  He got me into the building and we waited by the chairs.  Phil walked through the glass door that separates the front with the gym and he started play pounding on Sean similarly to how my brothers greet Sean.  Sean has come with me to Barwis a number of times and he and Phil seem to get along well.  Phil stretched me at the opposite end of the plyo boxes as Sean sat on the higher boxes.  The stretch is painful but I know it is much-needed.  As I was being stretched, I looked at Sean sadly  and said that this what Barwis is reduced to now.  Just stretching.  Sean has witnessed me working extremely hard and being more productive previously at Barwis.  Saying this to him was difficult for me.

After the stretch, I headed to the stander.  Sean had never seen me in the stander and watched as Phil got me in and strapped.  He watched as Phil cranked it up.  Once I was in and standing, they started messing around.  I had to say (at least twice) as I pounded my hands on the stander’s tray, “Now, Boys!”  I think I was more worried about what Sean and Phil were doing rather than any pain I was feeling.  Boys will be boys I suppose.  I stood in the stander twice for 15 minutes.

TOTAL TIME IN STANDER = 141 MINUTES.

Phil took me out to my car and helped me to get in.  His variation of the “bends” this time was, “Bend your damn legs!”  Hmmm…  He said that right in front of Sean!  He wished us a good weekend, shut the door, and went back inside.

Matt, an intern, helped  me out of my car because it snowed.  It snowed!!!  I didn’t know what to do.  I know that snow under my feet is REALLY BAD for transferring purposes so Matt helped me out of the car and pushed me into Barwis as well so I wouldn’t get my sleeves all snow-covered.  Once inside, I began wiping my wheels off.  I had forgotten what a LONG process doing this was but I very methodically did what I had to do.  I was cursing the snow in my head because snow before Thanksgiving is unacceptable.  I have felt for a long time (even before I was in a wheelchair) that snow after Christmas was unnecessary but BEFORE Thanksgiving is COMPLETELY UNACCEPTABLE!!!

Phil stretched me out as he usually did at the plyo boxes.  I said something about him NOT stretching me so much that I can’t move the next day, to wait until Friday to do that.  His eyes lit up and he told me to go over to the table.  I groaned because I KNEW that it was going to hurt.  He thanked me for the idea and pushed me to the table.  I was correct.  It hurt.  While we were over there, Megan, Eric, and Deeds made their way over at some point.  They mulled around and I talked with all of them in some sort of conversation.  I am still not sure who will take over for Phil when he leaves but I could dig any one of them.

My time was up and Phil got me back into my chair.  He pushed me over to the door and then told me that Matt was going to take me out to my car.  He put his fist out on the turf and when I extended mine, he “Joystick”ed me.  Figures.  Matt took me outside and it was snowing.  Matt’s internship will be over in January so he will be there for a while.  I explained to him when he was getting me out of my car how Adam does it (I made sure to call him Adam – I am trying to phase “Phil” out because that is a Barwis thing).  I told him about my favorite variation of Phil’s “bends” (the “Bend It, Bend It, Bend it).  It was a bit slick with the snow coming down so Matt got me into the car and my legs stiffened up.  We BOTH chanted Phil’s “Bend it”s and my legs bent.  Maybe Phil, I mean Adam, was on to something.

Continue reading 11.17.14 Tears

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?