Month: April 2014

I ended up arriving early to Barwis because I didn’t have work yesterday.  I met Amanda (the young woman who also has MS).  I told her that I have heard so much about her and she told me likewise.  I asked her how it was going and she kind of nodded and I knew exactly what she meant.  I just responded that, “it’s a SLOW process.”  To which she also nodded.

My legs didn’t start feeling tight until Phil started stretching me.  He stretched me a little more when we got to the Keiser machine and he told me to stand.  I tried but it was apparent that that wasn’t happening.  I sat all the way back in my chair and shook my head, it was okay, “First is the worst, first is the worst.”  I think it’s amazing that it is 3 months later and that STILL rings true.  I took a deep breath and tried again.  STILL a no go.  Phil said as I sat down again, “2nd is STILL kinda sh**ty.”  When I fully sat down, I said, “But 3’s a charm!”  Well, this time 3 wasn’t a charm and Phil asked me if I wanted to get “harnessed.”

What a question!!!  OF COURSE I don’t want to get harnessed!!!  I glared and him and stood up fully to a *BINK.* I looked down at Phil and yelled, “Yeah! Yeah!”  He told me to keep standing.  My Mom always tells me that anger is a great motivator for me.  I guess she is right. Or maybe in this instance, fear was the motivator.  I REALLY don’t want to get re-harnessed AGAIN!!!  I stood until my legs shook about 6 times.  Phil asked me if my butt still hurt.  “Of course!!!  Ever since last week.”  He just kind of nodded and told me to do one more  and then we’d be done.

I tried but he ended up putting me into my car.  He refused to fist bump me and told me that  I did a “good job.”  I didn’t do a million squats that I could brag about on Twitter but I did get some stands in.  I went “to fatigue,” until my legs shook just about every time.  I was tired so I knew I worked hard.  I told Amanda that it was “a SLOW process” and so it is. “Little by little…”

Yesterday, Phil took me over to a red mat and had me lay down on it. I kept asking why we were over there, I had never been there before, and he kept saying, “Don’t worry about it.” So I laid down and it was soon obvious what I was doing there. He started stretching my legs out like a pretzel! It hurt SO badly! I kept yelling and he kept shushing me.

After this really hard stretch that seemed to last forever, he brought a plyo box over to the mat.  The goal was for me to kneel in front of the plyo box and hold it for 20 seconds. Apparently, it would work my core muscles. They pretty much have been non-existent for a way super long time.  It took a few times to completely work out the logistics of how we were going to accomplish this goal. I ended up kneeling for the 20 seconds twice. But, Phil was counting way SUPER slowly!

I asked Phil how I was going to get up now that I’m on the mat and he asked me how I get up from the turf and back in my chair. I said, “You pick me up and put me there.” And he kind of nodded.  So that is what he did.  He ended up putting me into my car because my legs were SO fatigued they were shaking.  He grabbed my hand and refused to fist bump me.  I sat in my car for a while because I was SO tired.   I drove home tired, sore, and in pain but my strength is coming back “little by little…” and that makes me happy.

My legs didn’t start feeling tight until I pull up to Barwis yesterday.  Phil told me to relax when he was stretching me out.  When he told me to go to the turf, I didn’t even put my hands up and “weee!” when I went down the ramp so I had to back up for a redo.  Phil told me that he is going to laugh at me that one time when my foot gets stuck and I fall on my face.  I told him unfazed  that,  “then he will have to pick me up.”

Michael Jackson’s “Beat It” came on the radio and Lindsay was dancing before we started.  My first down, I got no gain on the play.  I stood up and my right foot wasn’t having any part of it so I sat down again.  It’s okay though!  I told myself and said it out loud with a shake of my head “First is the worst.”  My 2nd down, I got 10 yards.  I got that conversion and I was tired so I couldn’t go any further but I remained standing (LARGELY because Phil was holding me up!) but I remained on my feet.  For my 3rd down I was at 9 yards and I told Lindsay and Phil that I was going to get that 1st down – I was pushing to get 10!  I couldn’t.  I tried REALLY hard though.  I remained on my feet and Phil had to hold me up a little bit less.  My 4th down, Eric was behind me and I am MOST proud of this down to date I think.  So I have Phil on my left and Lindsay on my right and Eric is behind me pushing my chair.  All 3 of them were shouting encouragements at me.  I only got 2 yards but that is the HARDEST I have ever fought for yards so I am MOST proud of that drive.  I thought I was going to collapse but I didn’t.  I “grabbed my guts” and got 2 yards off.  Phil REALLY had to hold me up as my chair was brought to me on this one!  I got 21 yards yesterday.  “Little by little…”

It was “Camo Wednesday” and I recently got a different camo shirt while I was at the army surplus store.  I explained to the salesmen about my training at Barwis and “Camo Wednesday” and how I don’t wear camo.  I had to get a new bag (that’s why I was there).  My purse is an ammunition bag.  My Mom HATES it but it’s me and it was easier when my son was young to get him to carry my purse.  I have patches to put on it.  I have sergeant stripes because my Dad was a sergeant and his “4th army” patch.  That was the platoon he was in.  I talked with the salesman about my Dad’s service when I was there.  He showed me the  Tigerstripe camouflage that he said was the type of camouflage they wore in Vietnam.  Naturally, that was the shirt that I ended up getting.  I have to tell Jesse about my new shirt and it’s unveiling at “Walking Wednesday” #24.

Yesterday as I left work to head to Barwis I was stopped behind a truck that was stopped to let a very large group of pedestrians cross the street.  I watched this group of people cross the street.  There were kids so some of them were running.  The sun was shining and it was warm (odd that there is 2 inches of snow on the ground now though!).  This sight made me sad.  All of them were just walking (or running) so effortlessly.  They didn’t have to think about doing it.  I thought about how I CAN’T do that.  I thought about how long it has been that I have been unable to do that and it kind of compounded my sadness.  I used to say that MS stole my 20’s and my ability to walk.  The crowd finally crosses the street and the truck in front of me begins moving and so do I.

I thought about how it had been a very long time since I have looked at people with longing like that as they walk as I just did.  I watch the athletes working out at Barwis not with longing but more with awe at their ability.  It’s not longing at Barwis because I am there working TO walk.  When I am there, I don’t get sad because I am actively doing something to change the fact that MS stole my 20’s and my ability to walk. Working at Barwis helps me both physically and emotionally because I KNOW it will be difficult, it IS difficult but MS may have stolen my 20’s and my ability to walk but I am taking back what MS stole in my 30’s.  As I drive, I hold on to that thought and know that I am SO close to walking again!  I turn on my WALKING song and smile.

I get in to Barwis and my smile continues because Phil was working with that hockey team again so he had his “mean face” on.  When he gets done with them, he comes over to the chairs to stretch me.  In spite of the little bit of rain in the morning, I felt pretty good.  We head over to the Keiser machine and Phil tells me to stand.  My first attempt at standing didn’t go so well but I wasn’t worried because “first is ALWAYS the worst.”  Phil had me stand again and once I was standing, he had me do squats in quick succession.  I got 9 squats in and I sit down and Phil puts his fist out to me.  I grabbed it fully (well, as fully as I can because Phil’s fist is HUMONGOUS compared to my small hand) I gave it a good shake and Phil pulls it away as I am saying, “Joystick!”  He said that it doesn’t count because I didn’t have his fist as I said joystick.  Fine.  I’ll get him again.  For my second set of squats I got 11.  Phil makes fun of me because I count on my fingers when adding numbers.  Hey – I teach reading.  Math is hard.  So I had 20 squats under my belt now.

Phil told me that we were going to do 5 sets and then time was up.  Backey would be taking me out yesterday because Phil had a 7 o’clock appointment.  My next set I got 10.  My 4th set I got 8 and I got 8 for my last set.  So, I did a total of 46 squats yesterday.  I told Phil that that was the most I have done in one day.  He said it wasn’t but it was!  He said, “Good job, Rios!” as I turned to roll down the little ramp at the Keiser machine.  It’s a tiny ramp that now I roll down with my hands in the air accompanied by a little “weee!”

I got into my car ALL BY MYSELF yesterday.  My butt hurt SO badly and it STILL does this morning as I write this!  But I am looking at all of this pain as prepping me for an AWESOME “Walking Wednesday” #24!  And I KNOW deep in my soul that even if I do NOT have an AWESOME “Walking Wednesday” #24 that I WILL have one…  Eventually.

Yesterday, my training was moved until 7 at Barwis.  I arrived there early because it is really hard to gauge traffic on Plymouth Road now that I-96 is closed. I watched a group of girls train with Phil.  I found out from one of the girls that they are the Northville Rush (soccer).  I thought it was funny to watch Phil interact with all of these little girls. I was reminded of Arnold Schwarzenegger in Kindergarten Cop. I saw Phil training a men’s hockey team once and he was yelling encouragement to a man lifting weights and had this intense face on. I told him when he wa stretching ne out then that I had never seen his “mean face” before. He smiled and said,  “it’s a different kind of the training.” Well, I guess that my training is different from a group of little girls as well. It still was enjoyable to watch; another woman who was training agreed with me.

My legs were REALLY tight yesterday but I was able to stand 4 times before we headed to the table to stretch.  They were sturdy stands.  It is getting easier to stand.  Almost feels normal.  Phil then started stretching me out.  That hurt!  I hope it gets easier soon.  It REALLY stinks not being able to control your body!

Phil took me out and I was able to get into the car ALL BY MYSELF very slowly.  Phil had to help me with my legs.  We did the weird hand-grabby thing before he yelled, “Joystick!” and shut my door.  I keep telling myself that every little bit is progress as I drove home.

I had to get gas before going to work yesterday.  I thought it was going to be a good day because these high school kids held the door for me when I went into the station to pay and the clerk held the door for me on the way out.  As I was pumping my gas, a middle school aged kid who was with his mom offered to help me (I declined) and after I was done and transferred to my car, a guy opened his car door and offered to help me (I declined this offer as well).  It was a nice morning weather wise and I had things under control. Chivalry is NOT dead! I was happy that 4 people helped me or offered to help me.  I tweeted about it.  I thought that it was a good sign given that it was “Walking Wednesday” #23.

I felt pretty good all day.  It wasn’t until I get to Barwis and Brett comes out to help me that both of my legs tightened up, my right leg especially.  That’s not a good sign!  Phil stretched me out and said that I felt tighter.  I stood a couple of times and it was really difficult.  My right leg didn’t want to join the party.  Phil lowered the bar to the height of my crutch handles and it was even harder.  I finally was able to stand but I wasn’t impressed with it.  Then Phil calls Lindsay over and it was time to walk.  Let’s do this thing!

I stood and couldn’t get any steps off so I sat and looked at Phil and shook my head and told him, “First is the worst.” But it was going to be okay.  I stood again and got 7 yards.  For my 2nd down I got like 2 yards and collapsed.  My 3rd down, I got three more.  So I was at 12 yards and one more down to go.  Phil stretched my right leg out really well.  I stood and waited.  I tried to take a step.  I sat instead and sent out the field goal unit.

I wasn’t TOTALLY bummed out about 12 yards; only a little.  But then I thought of that Tanzanian proverb that I constantly retweet.  “Little by little, a little becomes a lot.”  Okay.  I’ll take it.  Then, I could hear this Gavin DeGraw song in my head.  I tried “joystick”ing Phil but he pulled his fist away.  He took me out to my car and I got in ALL BY MYSELF.  He needed to help me with my legs though.  I asked if 12 yards was okay and he said that , “12 was good.”  At least I got 1 conversion.  I put my fist out and he grabbed it and gave it a shake, yelled “joystick” and called me a name in a sing-song Adam Sandler voice. Ah well, he got me; but this is NOT over!

TOTAL YARDAGE = 251 and 2 steps

Driving to Barwis is now an hour-long ordeal because I-96 is closed and it will be for a while.  As I am driving to Barwis it begins to rain.  In spite of the rain, my body feels okay.  I had already made the decision to make the best of things in spite of the weather last week and I also believe it that I felt good in comparison to how I felt the previous weekend.  I had the flu.  Bodyache, headache, sick to my stomach, the whole 9 yards.  I spent Sunday in and out of coherency and I went to work on Monday, yesterday.  I was also going to Barwis.  But I was feeling good so BRING IT!  I get into Barwis and Phil begins stretching me and tells me that I feel pretty good to which I reply, “RAIN-SHMAIN!”

We head over to the Keiser machine and I get set to stand.  I stand and give it my all.  When I finally sit, Phil shows me the timer on his phone which reads 40 seconds and some change and he tells me that it was over a minute because he didn’t start timing it right away.  My second stand was over a minute as well so I am feeling pretty good.  But then comes my third stand in which I feel GREAT!!!  I stood and my legs were beginning to shake and I thought I was going to fall into my chair but then I got my second wind and stood fully upright again!  *BINK* after which I made some kind of excited yelp! I thought I was collapsing again but then I see Backey come in and I got a THIRD wind!  How unheard of!!!  Phil timed me and when I finally sat, he showed me the timer and it was 2:38 and some change!  I was SUPER excited and Phil had his hand palm up on his thigh.  I told him to give me his fist and he just shook his head and smiled.  I told him that he stinks and he said it was because he was ,”smart.”  I stood over a minute two more times and then we were finished.

I felt REALLY good!  After my last stand, Phil put his fist out so OF COURSE I grabbed it and yelled, “Joystick!” As he pulled his fist away he told me to, “Get out of the gym!”  He smiled and Backey congratulated me and told me what a good job I did and Phil agreed and said that he was “proud of me.”  Thanks Phil!!!  I’m proud of me too!!!

Backey took me out to my car which I got in ALL BY MYSELF!!!  EVEN MY LEGS!!!  Backey DID have to help me adjust my feet a little bit because I was tired.  I texted Phil that I got into the car ALL  BY MYSELF!!! RAIN-SHMAIN!!!  Leaving Barwis, I have to turn left instead of right.  Right gets me onto the freeway and left gets me into a subdivision in Plymouth.  I TOTALLY got lost.  It was raining, Onstar had to reroute my car TWICE, and my butt really hurt from standing but I still was smiling!!!  Phil sent me these:

    2nd stand

   3rd stand

  4th stand

  5th stand

That’s A LOT of standing!  No wonder my butt hurt!  It STILL hurts as I write this.  I still am smiling about my stands and am excited for “Walking Wednesday” #23.  I think it really IS starting to happen and that feels REALLY GOOD!!!

I got into Barwis by myself yesterday. I made a conscious decision yesterday as I opened the door to my office as I got to work. This weather stinks! (It was raining at the time). But regardless of this horrible weather, I was going to make the best of it and try to control my body.   I was going to “just” and “relax” as Phil always says.

I asked Phil how my body was feeling as he was stretching my left leg. He nodded and said it felt good. I told him as I snapped my fingers that I just flipped the switch.  He said something like it was about time!  I tried my best to stay relaxed and it’s not as if my body didn’t put up a fight because it did!

After Phil stretched me for a while I attempted some stands. It was a bit of a fight but I did end up standing. I stood for a long time. I sat down and was SUPER excited and looked at Phil and said, ‘I stood for ever!” and he smiled and said “and ever.” I tried a few more times but I was unable to *BINK.*  Then Phil said it was my last attempt to which I was victorious in standing. He put his fist out to which I grabbed it and yelled “joystick!” He said that didn’t count but he’s wrong.He took me out to my car and grabbed my hand and said “joystick” and shut my door. I re open the door and told him that totally didn’t count! He said it did over his shoulder and then opened the door to go back into Barwis.  that Tanzanian proverb kept resounding in my head. I didn’t stand a bunch but I was really working hard and little by little DOES become a lot. It will.  It IS! … and Phil is a sore loser! 😉