Month: September 2014

I got to Barwis early and Phil’s 5:00 appointment wasn’t there yet so he started stretching me until his 5:00 got there.  My appointment wasn’t until 6:00.  We split up my time.  He stretched me for 20 minutes and then his 5:00 was there so I sat at the plyo boxes and rested my eyes until I would have the rest of my time.  A woman came over and talked to me.  She has been working out there for a while.  I see her progress but I can’t see my own.  We talked about it being a LONG process and how we both get asked, “You’re STILL going there?!”  We laughed because we both hear it.  She told me that it takes persistence.

The other day, I read the following tweet on Twitter.  I favorited and retweeted it:

@kiddemigod: Water cuts through rock not because of its power, but it’s persistence

So I guess I’m the water and walking is the rock.  I’m okay with that though.  Phil came back and I opted to remain at the boxes.  I did some manual leg curls and then my time was up.  Phil put me in my car and my legs were kind of bent to get them into my car sort of easily.  Phil didn’t have to say his “bends.”  He stowed my chair and gave me a good fist bump.  I grabbed his fist but couldn’t hold on as I began to shake it.  I only got, “Joy-” out before he pulled his fist away.

My legs felt relaxed as I drove away.  The road to walking IS long.  REALLY long.  A LOT longer then I anticipated.  I’ve heard that anything worth having takes a long time to get and for me, walking is worth having.  I just have to persist until I get it.  But, “Little by little…”

I arrived on time to Barwis yesterday and Lisa and Phil helped me get out of my car.  Once in Barwis, I had “technical difficulties” so my time was cut extremely short.  To like 15 minutes.  Phil stretched me out at the plyo box and could tell that I was upset so he kept “Woosah”ing me.  I tried to relax and I my legs kinda started to at the end.

My time was up so Phil took me out to my car.  He told me to get into my car by myself and my Mom has always said that anger is a motivator for me and I was angry so I was able to stand by myself and turn and sit with only a small tap on my hip from Phil.  Once I was seated on the driver’s seat, my legs were bent.  I motioned for Phil to put them in my car quickly.  He did and as he did this, he asked, “Who are you?”  I know that this has NEVER happened before but I went with it.  Phil “joystick”ed me and when I gave him the look like, “Really?!  Today?!”  He put his fist out and bumped me good.

My legs relaxed a little on my way home but truly didn’t fully relax until I talked to my cousin Kimmy on the phone.  I recounted the entire fiasco to her and she laughed as well as telling me some good things.  I’ve said before that I am proud to a fault and she helped me more clearly define where I stop and where the effects of MS begin.  It is SO difficult to separate those things because it all is happening to me.  We talked about dealing with the loss of control over things that I once used to be able to do.  She acknowledged that it stunk but gave me hopeful insight.

I told old her that I was glad I was at Barwis for all of it because it feels like my second home there.  Mike was right about it being a “family” there.  It is a place where I am comfortable to scream my love for Matty (and Phil too) and a place where I know that if it comes down to it, Phil will pick me up and he does.

On Monday, I decided that Phil’s “Bend”s are like he is trying to convince a baby to do something.  After he put me in my car, he was bending my legs to get them in and he said a variation of his bend-bend-bend-bend-bend -bend-bend and ended with 2 “Bend It”s.  Makes me laugh!!!

My legs felt REALLY tight ALL day at work and I was awakened the previous night because my legs hurt so badly.  I spent my time at Barwis being stretched with Phil sitting on the white table and me in my chair.  It was uncomfortable for me so I asked Phil why we weren’t at the low plyo box as I looked over to them.  He told me that there was no low plyo box so I told him to break down the bigger ones.  He objected to it so I stayed in my chair.  I little while later, Phil let go of my legs, pushed them down,  and exclaimed, “Alright, Princess!  Go over to the boxes!”  I laughed and wheeled over to the boxes as Phil broke down the end box to make it lower.  I continued laughing and then let him know that, “I am NOT a Princess” he interrupted me to tell me that I WAS but I clarified by ending with, “I am a QUEEN!”  It was his turn to laugh but I think we were laughing for different reasons.

We stayed at the boxes for the rest of my time and my legs relaxed just a bit before Phil put me in my car.  I put my fist out to fist bump him and he grabbed it and shook it and said the customary, “Joystick!”  I tried grabbing his fist but his hands are SO big compared to mine that he just shook my hand off and said, “I win!” as he shut my door.  I drove home with my legs feeling a little bit better.

I awoke at 1:57 to excruciating pain AGAIN this morning!  My legs were  SO badly!  It hurt when I bent them and equally as much as I straightened them out.  As I tried to find a comfortable position, I thought about the last time I was awakened with this much pain.  Looks like the winter is starting to set in at night.  THAT STINKS!  I knew it was going to come and that isn’t anything new.  I can’t say that I’m surprised.  My legs have relaxed a little but I am EXHAUSTED!!!  Looks like walking has hit the pause button AGAIN and I am gearing up to wait it out.  I will still work my HARDEST while I wait but princesses really don’t like to wait… Maybe I really AM one…

 

I was late to Barwis yesterday.  Like almost 20 minutes.  Phil met me by the roll down door  in front of my parking space. Yeah.  I have one of those even though Jerome tries to cramp my style sometimes and doesn’t leave me a lot of room!  But seriously, I DON’T have one of those but I park there almost every time I come to Barwis so that has been a lot since I’ve started parking in the back.  I was having difficulty getting out of my car so Phil got my chair down and pulled me out of my car.

He started stretching me at the plyo boxes.  He sat on the low box and I remained in my chair. My legs were EXTREMELY tight and the stretch was difficult!  My mojo was all off because I was running so late so I asked Phil if he had a piece of gum because I didn’t change pieces when I got there as I always do.  I am a chain gum-chewer.  I chew the blue 5 gum.  I chew it because Phil chews it and gave me a piece a while back and I REALLY dug the taste!!!  I constantly chew gum because the vitamins that I take daily leave a bad taste in my mouth.

Phil left to get me a piece of gum from his office and shortly after, we went over to the white table. I sat on the table with my legs dangling over the side and Phil sat in my chair.  He told me to relax my legs and kicked my feet a bit.  We did some manual leg curls and then my time was up.

Phil pushed me out to my car and told me to get into my car by myself.  He tells me that EVERY day!  I was tired but decided that I was going to show him.  I got up to my feet using the driver’s side door to brace myself. But, that was it.  Phil pushed my hip so I was able to turn and sit almost in the driver’s seat.  I looked at him triumphantly with a smile and he responded straight-faced, “Good that I gave you a f***ing shove.”  I busted out laughing and he laughed too.  I told him that I was going to name my blog post “F***ing Shove.”  He stowed my chair  and my legs had stiffened and I needed help getting them into the car.  He leaned over and grabbed my right leg and said, “Bend-bend-bend-bend-bend-bend-bend.”  I haven’t figured if it’s like he is calling a pig or encouraging a baby to do something.  Either way, it makes me laugh!  He repeated himself a few times for each leg until they obeyed.  He gave me a good fist bump when I put my fist out and shut my door.  I drove home tired and thought about they day when I walk again.  It WILL happen but waiting is DIFFICULT!

I was tired again when I got to Barwis.  Half the staff at my work has called in sick this week.  I just felt sleepy and a little sneezy but I hoped that would be the extent of my illness for now.  Phil stretched me at the Keiser machine.  My legs were tight but not as tight as they were on Monday.  I attempted to stand.  6 times.  “Attempted” is the key word here because I was unable to stand up fully.  On my 4th or 5th time, I asked Phil how it felt.  He looked at me and said, “Like you are trying to stand but don’t.  How does it feel for you?!” jokingly with a smile.  Touche.  I looked at him and said, “Like I’m trying to stand but don’t.”  He told me to go over to the boxes.

Well, boxes were better than the table!  There was a boy at one of the tables.  His name was Garrett (I think).  I asked.  He currently was in a wheelchair.  Phil put me on the end box and I wondered what we were going to do.  My legs refused to relax and were sticking straight out.  Phil told me to relax them and I tried but as they weren’t relaxing very readily, while I waited, I watched Garrett.  He was working with Megan and she had him crawling.  He crawled 10 or 15 yards.  My legs still weren’t relaxed.  Then Megan had him stand with Megan on one side and his mom on the other.  He was head and shoulders taller than both of them.  I kept watching him as my legs relaxed and Phil had me do some leg extensions.  I asked longingly when I would walk again while still watching Garrett and Phil replied, “I’m not a fortune-teller.”  Then he pulled my shoulders down until I was bent over.  He instructed me to sit up and it was EXTREMELY difficult.  I was able to get into first position for ballet before I extended my arms the second time Phil pulled my shoulders down and Phil rolled his eyes AGAIN!  On my 5th attempt to sit up, Phil had to push on my clavicle so I could get all the way up.  I was able to get up 7 times and was disappointed that I didn’t do 10.  Phil put me in my chair and reminded me that I did a lot of leg extensions.

He pushed me out to my car and I was too tired to attempt to get in by myself.  I raised my arms for Phil to pick me up.  He begrudgingly obliged and grabbed my fist and shook it when I extended it out to him.  He didn’t yell joystick but instead just said it.  I was persistent and tried again when he let it go.  This time he fist bumped me – a good one and closed my door.  I was SO tired but eventually…  Right?

Yesterday, I was able to transfer from my car to my chair by myself.  I was tired.  I moved my time from 5 to 7 on Mondays because I have my “Move It Monday workouts” for staff and students at my school because I am a “Move It Monday” Ambassador.  My legs felt REALLY tight as Phil stretched me at the Keiser machine.  He told me to go over to the table.

He helped me on to the table and I laid on my back.  He stretched my legs and it hurt SO badly!!!  I asked him, “Why?”  He looked at me and asked for clarification.  “Why are you SO tight?”  I nodded and he responded.  “Weather, stress…” and kind of trailed off dismissively.  Then he added, “those things are quite bothersome.”  I laughed because I was reminded of my Dad.  He used to say “lonesome” instead of “alone.”  Phil continued stretching me and it continued to hurt.  VERY SLOWLY my legs started to relax.  He had me sit up with my legs dangling over the side of the table while he stepped away for a minute.  I willed myself to relax my legs and they were dangling when he came back.  He sat in my wheelchair and kicked my feet a bit.  They remained relaxed.  I asked him if my legs were less bothersome and he smiled and nodded a little.  He helped me into my chair and out to my car.

Once outside, I got in BY MYSELF!  Mostly.  Phil got my legs in and stowed my chair.  He put his fist out and when I put my fist out in answer, he just grabbed my fist, shook it, yelled, “Joystick!” and started to shut my door.  Before my door was shut, I yelled, “Oh, Come On!  I just want a fist bump!”  He laughed and shut my door.  I drove home with my legs feeling better than when I came to Barwis and that is STILL progress.  Slower than I would like, but progress just the same.

I pulled up to Barwis and Deeds helped me get in.  The weather had finally broken and it wasn’t so warm but instead was on the verge of being REALLY cold.  For now, it was tolerable sweatshirt weather.  Phil took me a little early because I arrived early (my appointment wasn’t until 6).  My legs were EXTREMELY stiff and Phil stretched me extensively at the chairs.

After awhile, he told me to go over to the boxes.  He changed out the height of the middle one so it was a little bit higher than the seat of my wheelchair.  He helped me to stand and after a moment, he picked me up and put me on the box.  My legs stuck straight out in front of me because my legs were SO tight while I sat on the box.  Phil talked me though to get my legs relaxed.  They FINALLY did.  I had sat on the boxes so many times as of late, I asked, “What are we doing?”

He pushed my shoulders down in response so I was bent over at the waist with my head shoulders hung down a bit.  He held my shoulders down for a little, let go, and told me to sit up.  I was able to almost with ease.  He told me that these were, “low back hypers.”  We were going to do a set of 10.  On the 3rd time, I was FINALLY able to get into first position before extending my arms to the side.  Phil rolled his eyes.  It got a little more difficult at 6 or 7.  I figured out that if I balled my fists up, it was easier to do.  So I did that every time.  I did 4 sets of 10.  My lower back kind of burned but it felt good.

Phil pushed me out to my car and I asked him what he thought of my showing.  He told me that it was good.  REALLY good.  He then added that it was impressive.  SCORE!  It’s about time!  It has been SO long since I have felt proud of my showing and my work at Barwis.  I got into my car mostly by myself.  Phil got my legs in and stowed my chair.  We had our fists out but instead hand-clasped again.  Phil told me to stop trying to hold his hand as he shut the door.

I was again tired as I drove home but it was a really good tired.  My body was relaxed and surged with warmth.  I truly felt that maybe I was on the upswing again now that the heat maybe had subsided a bit before the extreme cold set in.  We’ll see…

Lisa helped me transfer from my car to my chair.  Lisa is another woman who works out at Barwis and she was coming in as I was.  As I roll in, Phil is standing in the middle of the turf working with someone.  He asked me how I was and I look at him and yell, “I love you, Phil!” just like I do for Stafford as I watch Lions games.  He laughed.  I TOLD him that I was going to do it.  I yelled this 9 times periodically throughout my workout.

After he stretched me for a bit in my chair we went over to the Keiser machine.  He stretched me some more and brought over the PURPLE half popcorn ball thing.  I was a bit surprised and excited.  I was standing today!  He set my feet and placed the half popcorn ball thing.   I tried to stand to no avail.  It was okay because first is ALWAYS the worst!  The second wasn’t the best but I thought that 3 HAD to be the charm.  IT WAS!  I stood up tall and held it with Phil encouraging me all the while.  Phil looked pleased.   I tried 5 times but only could get all the way up the 3rd and 5th time.  I wasn’t discouraged.  “Little by little…” After I was tired from the attempts at standing we went over to the table.  Phil had me lay on my back and he stretched me.  It hurt SO badly but it gradually got easier.  During the hurting part, Dan came over and started talking/making fun of me about Stafford.  My reply was the sane that it always is:  “I love him.”  When my time was up, Phil put me back in my chair.

I rolled out to my car too tired to exclaim my love for Phil.  I told him earlier when I hit 9 times of yelling it that I thought that I told him more than I told Stafford on Monday Night Football.  He put me into my car and stowed my chair.  I don’t know that we were going to fit bump but did a weird hand-grasp thing.  Phil said, “That was weird!”  He shut my door and I sat there for a short time.  I was tired and wanted to have a better showing but…  It’s nice that I have so much fun when I am at Barwis and that I am comfortable enough to grunt and groan and proclaim my love for Matthew Stafford… and for Phil too!