Month: February 2014

I woke up yesterday morning to my legs being really tight and hurting. It was the first day of my winter break and Sean still had to go to school so my Mom came to pick him up (she works right by his school).   She came into my bedroom and I told her that I needed some help getting out of bed. She pulled my covers back and was expecting me to do something. But I couldn’t. My legs would not move no matter how much I willed them to. Man, that really stinks!

My time at Barwis was what I expected it to be. I was a really tight and it was the first time that it kind of hurt when Adam was stretching me.  I told him that I know I have a MS (that’s the response he and Jesse usually give me when I ask why my legs are so tight as if that is the first time I have heard that news) but I asked why now?  Adam said “it is freezing and it’s supposed to snow tonight.”  That made sense. I asked about Amanda and he said she was tight as well. This REALLY stinks!

I ended up standing for a little bit 5 times. It was on my second stand that I told Adam I could stand for days. But my feet were set a little too far under the bar so it got difficult. As my legs started shaking, Adam said, “it hasn’t been days.” Funny!  I stood for only a little while longer and then I had to sit.  Adam put me into my car.  All this cold weather and snow is REALLY stinky!

I didn’t know how tight my legs were until I got to Barwis and Phil started to stretch me.  He stretched me for a long while and then told me to head over to the table. I asked if we were NOT standing and he told me that he was going to stretch me a little bit more. Maybe we would get some stands in today. So we head over to the table and Phil pulled it away from the wall so he could get on both sides of the table. He started stretching my legs out. They were really tight! He talked with Eric as he was doing this and Eric came over and grabbed my right leg to see how tight it was. He asked me what I was doing and I shrugged and put my hands up. I had no control of my legs resisting and curling up, “boing”ing almost.  Phil stretched me for a long time. For like 45 minutes.

Phil told me to head back over to the Keiser machine and he stretched me a little bit more.  He had a mark on his hand and I asked what it was. He told me that it was the remnants of a Tinkerbell tattoo that a 7-year-old client gave him. He wore it for her. That’s super cute! She is physically disabled as well.  I asked him what it was like to have so many disabled clients who he works with. He said it “was hard… but rewarding.” I really liked that answer.   Then he had me stand. It was very difficult. I told him it feels like I’m Calobos from Clash of the Titans. The 1981 version.  I asked him if he had ever seen the movie and he shrugged. I explained Calobos’s transformation to him and told him that is what I feel like when I am trying to stand.  At least today.  Most days.  He looked at me and kind of smiled and said, “I’ll research it.” because he had no idea what I was talking about.

Here is Calobos’s transformation.  I feel like this when I try to stand up straight.

     Click picture to view.

II stood a few more times and even *BINK*ed for a second. But it was very difficult. Phil looked at me as I was sitting in my chair resting and he said,  “Well, at least you’re looser.”

I WAS looser.  I felt it in my legs on my way home. Even going to sleep last night, my legs did not “boing” up.  But then I woke up this morning. It’s really frustrating that every day is another accident as Jesse told me so long ago. Because I felt super tight this morning. As I got out of bed and was getting things ready for my shower this morning, I noticed that even though my legs feel super tight, my knees were not touching and my feet we’re straight forward and not a curving inward.  These little things are things that I have been working on at Barwis to regain my leg strength. So there is progress. I want a lot more progress but I guess it’s coming.  Too bad I stink at this patience thing!

I went to Barwis not knowing what to expect.  This bitter cold STILL continues and it is KILLING me!  I’ve had A LOT of “Walking Wednesdays” and I STILL am not walking all of the time.  Yesterday at training, the left side of my chair broke as well (the right broke awhile ago).  I’m totally bummed!  So Phil starts stretching me at the Keiser machine.  The stretch felt SO good!!!  Phil said that it was impressive how good of a stretch I got.  I stood a little and that felt good.  I even did two squats before I got set to walk so that was promising (so I thought)  – or ATTEMPT to walk; I should say.  Lindsay and Phil get me standing and… nothing.  Phil stretches me a little more.  Let’s try this again… nothing – AGAIN.  I sit and Phil stretches me yet again.  My third down I am able to get 2 yards.  That’s it.  Just 2 yards.  Those few steps I took to get those 2 yards felt really good though.  I told Phil and he told me that they looked good.  4th down.  My last attempt.  And i got just 1 more yard.  Really?!  Phil said that we were done and he worked my ankles some.  He holds my foot and tells me to turn my ankle out and he helps me continue to rotation out to get the full range of motion when he does this.  We started with my left ankle.  Turning my ankles outward is probably the hardest thing to do aside from walking.  I close my eyes when I do this because it takes SO much concentration.  My right ankle is even harder!  I ask Phil if he can feel any movement when he tells me to turn my ankle out.  He mods and tells me “a little bit.”  How disappointing!

Phil took me out to my car and at least I was able to get in by myself – well almost by myself.  Phil had to help a little because I undershot sitting in my seat.  He also helped me get my legs in.  I needed to bend my knees to get them into my car because both of my legs stiffened so they were straight out.  So Phil was talking me through this by saying “yep, yep, yep” repeatedly as I was willing my legs to bend.  That made me laugh a little despite my disappointment with my showing at “Walking Wednesday.”  He puts his fist out and tells me, “good job.”  I reply, “it WASN’T a good job!”  He pointed out the good stretch I was able to get and then pulled his fist away before I could grab it.

It was a TERRIBLE radio day in the car on my way home and I wasn’t in the mood to listen to Gavin.  I was bummed!  I WAS conscious of blood flowing through both of my legs though.  I didn’t even text my friends about the results of “Walking Wednesday.”  I did text Jesse and Mike though.  I texted:

Walking Wednesday =  3 yards. How anticlimactic. Disappointing. They were good steps though…

To which Mike responded :always a positive!!”.And Jesse texted that, “good steps I guess are better than no steps. I responded to him, “Frustrating.  I got that second down from last week but that was it. Grrr!” Then I texted that I don’t know that the camo is working for me (I still rock the socks and Duck Dynasty shirt every Wednesday). Jesse said that I need new camo then but I’m not trying to have a camo collection though. But maybe, if that’ll get me walking… Besides, “its only stupid if it doesn’t work.” Right?!

TOTAL YARDAGE = 176 AND 2 STEPS.

Phil texted me yesterday and asked if I could come in at 7 instead of 5.  That wasn’t a problem for me so it was cool to change the time.  I get in to Barwis and one of the camera crew is in the lobby and he greets me and asks if it is cold enough out there for me.  I tell him with a groan that I am going to kill that groundhog.  I have to sign a waiver before I start working because they are filming at Barwis.  I sign the paper with that same camera crew guy.  I apologized for having to move his hand over because I am left-handed.  He told me that he was left-handed as well.  Yay!  I don’t know a lot of left-handers.  No one in my immediate family (my parents and brothers) are.  My niece and nephew are and my son is not.  We exchanged facts about left-handed people in the US; it was fun.

I get into the training area and it seems like a different place.  I am used to coming in to train with a bunch of high school athletes and kids.  There were a lot fewer people there because it was so late compared to when I am used to coming in at 5.  Larry was putting weights away and wiping things down.  I told Phil that it was kind of weird to be there with a bunch of adults.  I am used to being the “old chick in the chair” which what I think these high school kids would perceive me as.  The music was even different from it is when I am with the younger kids.  ( And I’m old enough to call them “kids”).

Phil begins stretching me out and I ask how I feel.  He says “tight” and I tell him about Friday night going to bed and how my legs “boing”ed.  I told him that I was visualizing him telling me to relax.  He does that ALL THE TIME.  He tells me to “just relax” like it is easy for me oe something.  He told me last night that it is a mindset.  I know he is right but I don’t know that my mind is set for that.  He tells me to stand and I do.  It was difficult and I had to fight to remain standing.  I stood for a while and then he had me sit and he stretched me some more.  I stood again and it felt better.  I told him that I could stand for days.  I found that spot where both of my feet were flat on the ground and I found the balance.  It feels nice to get that feeling.  I think that is what able-bodied people feel.  I don’t remember.  I didn’t “stand for days” but I stood an even longer while.  Then I sat and got stretched.  It’s amazing how necessary that is for me to get this done  just to stand.  It’s kind of sad.  I’m glad I am able to get it done.  It was now time to do squats.  The squats have morphed into a quick succession of reps where I count them out (saying *BINK* before each number of course!).  I did 5 1/8 the first set and 7 3/8 the second set.  I told Phil that was a total of 12 1/2.  That was exciting!  My last set was 11 7/8.  So I did a total of 24 3/8 squats? (remember – I teach reading and used to teach English).

Then we went over to the table to do leg extensions and curls.  I di well at those and was offering substantial resistance in my opinion.  Phil ended by working my ankles and having me turn them out.  That STILL is difficult!  As I was getting my stuff together to leave, a song comes on and I smiled really big because it is a song Sean turns up and dances to EVERY TIME he hears it in the car and encourages me to dance with him.  When Phil took me out to my car he told me that I did a good job and put his fist out to fist bump me.  I felt pretty good about my performance as well.  It wasn’t stellar but I think I felt SO good because my legs got stretched.  So I grabbed his fist and shook it around and yelled, “joystick!” (Which is something he taught me).

Dusty told me on Monday that he needed to cancel me on Friday. Dusty handles all of the scheduling so I didn’t question why he had to do that I just said “okay.” So when I get into the training center,  I tell Phil that he is a “date breaker.” I told him that Jesse was a “stander upper” and he is a “date breaker.” He told me that they will be short-staffed on Friday (he still was coming in) so they had to make some changes. I come back with, “Oh, so I’m expendable?!” He gave me a crooked smile and said, “NO!  Shut up!” and grabbed my leg to begin stretching me.

I totally get it. I was just kidding with him like I did with Jesse for standing me up. It was the second day I was at Barwis and the first day I would be working with Jesse; I was scheduled at 9 a.m. But Jesse wasn’t there so I worked with Jon. Jesse shows up about 9:45 and came to talk to me and asked me how I was doing. I told him that he stood me up. He said he didn’t know that I was coming in.  He thought he had to be to work at 10. I messed with Jesse about this the entire time he worked with me.  I probably will mess with Phil for that long too!

So I didn’t go to Barwis yesterday. Phil told me on Wednesday as he was working with me, “you’ll miss me.” I came back right away with “not as much as you’ll miss me!” I sent Phil a text yesterday morning comparing me not being at Barwis to a night without stars, coffee without cream, pancakes without syrup, and the Philadelphia Eagles without Chip Kelly (he digs the Eagles and Chip Kelly).  I said it would feel like he was wandering aimlessly through a sunless world and to take heart because I would be back on Monday and all would be right in the world again.  Ha!  That text was funny to me because it was silly.  Honestly, I think I missed Phil MORE though.  My body hurts quite badly.  Last night when I got into bed, I laid down on my back and I both of my legs “boing”ed up. They haven’t done that in SO long! But I did not get stretched out yesterday at all so I was feeling it today like I was last night.  So really, I will look forward to Monday MORE when “all will be right in the world again” because I am going to go to Barwis.

The snow was CRAZY yesterday!!!  I was late to work and when I finally get there; I wasn’t sure what I was going to do because there was SO MUCH SNOW!  I called the school and told them that I needed help.  Ms. Donna came out and got my bags and the leg rests to my chair.  Mr Cooper and Mr. Schwartz came out to assist me in getting out of the car.  I opened my door and exclaimed, “I didn’t know we were in a snow globe!”  They laughed.  Coop pushed me into the school.  By the time we were in the building, I was covered and my wheels were caked with snow!  The main office is just off the door and Coop announces that, “the snowman is here!”  We laughed but it WAS a BIG mess!  The custodian shoveled around my car and helped me get into my car sat the end of the day.

I pull into the parking lot at Barwis into my normal spot and my car kind of gets stuck.  It sunk in all of the snow.  I opened my door and saw all of the snow and knew there was NO way for me to get out.  I pulled out and decided to check out the disabled parking on the other side of the door to Barwis.  It was even worse on this side!  So I go back to my normal spot.  I texted Phil and told him that, “I have no idea what I am supposed to do!!!”  Just as I sent this text, I see Connor running out to my car with a shovel.  My savior!!! (not in a blasphemous way) because he was coming to save me from ” danger, harm, or failure” as Merrian-Webster online says.  He came to my car and started shoveling.  I asked him where his coat was (he was only wearing a hoodie) and he kind of scoffed and said he DIDN’T need a coat.  Must be a guy thing because Phil NEVER wears a coat when he takes me out to my car.  I asked Connor if it was in his job description to shovel.  He kind of laughed and told me, “to take care of client’s well-being… Yeah, I guess it is.”  I was able to get out of the car and Connor got the leg rests to my wheelchair out of the trunk.  He handed me the shovel and told me that he would push me.  I told him that I’ll be Pocahontas and sang “just around the river bend” and started moving the shovel like it was an oar.

Connor pushed me all the way in and I started the ritual of wiping my wheels off.  Phil begins stretching me at the Keiser machine.  When he was stretching me, I asked him if he will see it as a tribute to him when I am walking.  He looks at me and furrows his brows and asks why it would be a tribute to him.  I tell him, “because you’re doing this” and point to him stretching my left leg.  I told him that he was teaching me how to walk again.  He kind of shrugged.  I told him that I used to have this same conversation with Jesse.  He asked when Jesse said and I told him that Jesse told me that he already sees it.  Phil agreed with that statement and told me that he sees it too.

Then it was time to do this thing!  Lindsay was helping.  I got 7 yards and then 4 and then 6.  It was 4th and 3 and I had already got 17 yards.  I was going for it!  I told Phil that I could see the red line.  Phil told me it was actually yellow.  I told him, “Not for 4th down!”  Oh, I know MY football!  Larry helped me and Phil this time.  Nothing.  I couldn’t get my feet to move.  I punted instead.  At least Phil and Jesse can see me walking.  I’m having difficulty seeing that right now.  Must be the cold.  I think I’m hibernating or something.  At least I can still get yards off.

TOTAL YARDAGE = 173 and 2 steps