5.11.15 #MiracleMonday

I have since put the notification on my phone to be alerted when @BarwisMethods tweets something.  I watched this video in Mike’s tweet about #MiracleMonday once the notification came through.  I watched it a number of times and was quiet.  I was and am EXTREMELY happy for everyone on that video and KNOW how hard it is but I selfishly thought. “Where is MY #MiracleMonday?!”  I thought about that for the rest of my time at work and I thought about it on my way to Barwis.

I drank my IGNITE (which is DELICIOUS!) and hoped for the best.  It was Monday and I wanted my body to obey me.  Mike pushed me to the blue table which was positioned where the white table usually is.  This time, I was able to stand and Mike grabbed my sides and guided me to sit on the table.  He kneaded and knuckled me and it kind of hurt.  He told me to lay back but I told him that I didn’t like laying with my arms on the big side of the table so I told him to grab my feet and move me facing the other way.  He told me that if I wanted to change directions, I’d have to do it myself.  Okay.  Challenge accepted.  I did and Mike was impressed.  He stretched me out and had me lay on my stomach to stretch  me out some more.  There was a mirror on the wall beside where the blue table was and I got to see how far of a stretch it was to bend my feet back.  It’s PRETTY far!!!

Mike told me we were going to stand and asked where I wanted to; I shrugged given that my attempts to stand at the Keiser machine were pitiful and let him chose.  He told me that we would stand right there.  He called over two interns (I didn’t find out their names).  He told a girl (with nice tennis shoes) to hold my feet and had the other intern (a big burly guy) stand at my right side.  He grabbed my arm and demonstrated what the guy was supposed to do.  Mike put his am under mine and grabbed my hand and interlaced his fingers.  The intern did the same.  On 3 they lifted me up.  I tried to get my feet flat on the floor but my heels would not cooperate!  I got some pushes up to straighten out my knees which the intern encouraged which made me feel good.  We tried until my time was up.  No dice.

Mike put me in the car easily (I guess he’s good in the rain) and as I turned out of Barwis, Bastille came on the radio.  I remember talking about this song before in a post referencing when he asks, “How am I going to be an optimist about this?”  Well, that is what I am choosing to ask myself now.  I didn’t fully stand but there WAS progress.  I felt it.  I feel it.  It’s coming.  I washed my “Standing Shirt” to wear on Wednesday and we will see.  I slept horribly last night – that was the first time in a long time but it was rainy and I had A LOT on my mind.

NOT COOL Stuff #12

Public restrooms are ALWAYS a tricky situation for me and here is evidence as to why.  I KNOW I am NOT the MOST disabled person but builders/contractors/whomever is responsible for building them need to consider disabled people MORE!  It is NOT that we are MORE important, it’s just that proper consideration needs to be taken for a person who does not have full control of their body and needs to use a public restroom.  I saw these few things at a public restroom I needed to use and I just HAD to take these pictures.

Just a few questions that need to be asked and/or considerations made because Disabled People Matter Too!!! (#DPM2):

12 Oaks 1

The first thing I noticed about this restroom is the placement of the toilet paper dispenser.  In order to actually get some toilet paper, I need to bend pretty far down.  I used to have really long hair and bending over, my hair used to brush the floor… of a public restroom!  GROSS!!!

12 Oaks 2

The next thing  I noticed was the placement of the emergency button.  If I’m on the floor because I have fallen, how am I going to reach that?!

12 Oaks 3

One thing I DID appreciate was the vertical transfer bar.  Many public restrooms do NOT have one of these but these bars offer SO MUCH needed assistance.  The problem here is that it is too far away from the toilet.  I am only 5’0 and have the arms of a person who is 5’0 tall.  The vertical transfer bar was too far away for me to reach.  Perhaps there should be 2 bars right next to each other?  1 for tall people and 1 for short people.

12 Oaks 4

Lastly, the paper towel dispenser was too high.  It was higher than my head as I am sitting.  To raise my arms up with wet hands allows for water to run down my arms to my armpits.  MOST uncomfortable!  #DPM2!!!

5.8.15 My Standing Shirt

I called Barwis when I pulled up after talking to my Mother to request a “spotter” because it was  a very warm day  and my Mom put a hex on me so I needed to have someone there because disaster was imminent if I transferred on my own.  If you know my mother, she has a hex power.  My brothers know it, my Dad knew it, and I know it.  If she says something is going to happen, it WILL happen.  If we don’t listen to her, it is disastrous on our part.

Connor came out to get me and was just “there” when I transferred just in case.  It was warm but Mike told me on Wednesday that we would be standing today.  I wore my “standing shirt” just to be ready.  My “standing shirt” is a shirt I got from the RA on my floor in Harvey Hall in Valley II at WMU the end of  my freshman year.  That shirt is 15 years old!!!  I came with pictures of me at Barwis standing at the Keiser machine with Jesse my first summer at Barwis.

As I came in, I saw Mike Barwis and I told him that I had to hug him.  After we hugged, I told him that it has been hard as of late and I can’t believe it’s been almost 22 months.  He asked me if I was stronger than before I started coming and when I said yes, he assured me that I’ll get it.  I sat by  the chairs for my time and I showed Mike these pictures that I texted myself from my blog’s archives when it was my time, I told Mike to take notice of my shirt and then showed him the pictures:

Barwis 14

Barwis 13

Barwis 12

Barwis 10

Barwis 15

Barwis 9

After the pictures of me standing with Jesse, there were these pictures of Phil just because these are my faves (these and all the selfies I made him take with me):

Barwis 21

Barwis 34

Lastly, I had this picture that was a screen shot from the  American Muscle trailer.  It was of me in the background crying as I watched Katie walk:

Barwis trailer pic 1

I showed Mike these pictures to prove to him that I could do it; I could stand.  He looked at them and exclaimed, “Rios!”  I told him that I knew and he pushed me to the blue table to loosen me up.  As he kneaded and knuckled me and stretched my legs out, they began to feel like Jell-O because of the heat.  I got nervous if not scared.  I began to glisten.

Mike looked around and told me that we weren’t going to the Keiser machine because there was no one there to assist.  He told me that he was going to put me in the stander instead.  He pointed to the Easy Stand Evolv with the glider option and I told him, “No!” and pointed to the other stander and told him that I liked that one better.  Mike took some time trying to figure out how to use it as I periodically announced that I was glistening.  It ended up being a no-go but I didn’t mind because I was glistening A LOT (almost “sweating”) and had begun to melt.  Mike continued to stretch me out and I kept saying that I was glistening and I was scared because I didn’t feel well.  The heat was getting to me.

I didn’t like that last week, I was wearing my gloves to work because it was 40 degrees and today it was 87 and I was melting!  FRUSTRATING!!!  Mike put me in the car and before he started working on putting my legs in, I started the car and blasted the air conditioning.  He told me that we were going to get in the stander first thing on Monday (so I knew to wear my “standing shirt” again).  When he closed the door, I passed out in my car for like 20 or 25 minutes.  When I opened my eyes, I saw Deeds peering out of the door at me like a concerned older brother.  I know that look because I have older brothers and it was the same look even though Deeds is younger than me.  It made me feel that everybody at Barwis cares about me and that felt good.

5.6.15 “Wacky Sock Wednesday” #15 OR IGNITE

I had talked to a number of people of my inability to stand on Monday and how much that shook me up and broke my heart.  Even though they all just told me to shake it off and keep working, I was taking it pretty hard.  I wanted to show Mike what I could do and it ended up being nothing.  It has almost been 22 months and I felt like I had nothing to show for it.  Now, I KNOW that isn’t true but it just hurt so badly.  I wondered what this day would be like at Barwis.

I pulled up and the doors were open so you could  see in.  I sat there for a little bit and was talking on the phone.  Mike was training someone and they were walking to a machine by door.  We looked at each other and he started waving frantically like a little kid and didn’t stop until I waved back.  So, I smiled, laughed, and waved back.  He did it again when they were walking away from the machine.  Then Dan comes over to the driver’s side of my car and grabs the window pane and begins rocking the car.  I laughed again and Mike comes over to join him.  The other Mike came too and Dan looked at them and said that they could flip my car.  I looked at him and Mike and told him to let me put my seatbelt back on first and Mike kind of laughed a little.  Then all 3 of them began rocking my car A LOT!!!  It wasn’t until they REALLY got the car going that I laid on the horn.  They stopped and began laughing just as Deeds came out to see what was going on.  I smiled and was happy that I was here.  Madison came out to push me inside as I transferred and she took me to the chairs.

As I was sitting there waiting for my turn, Mike came over and asked if I was better today and I kind of shrugged and shook my head.  I told him that I tried to hold it together but Dan saw me cry a little on Monday.  Then an intern came over and I asked him his name.  He told me to guess.  I told him that everyone at Barwis is named Mike so I think it’s Mike.  He smiled and nodded.  We talked about his experience here and what he thinks of it and how long he will be here.  He thought until the end of summer and I told him that I hoped I was walking by then.  Then Mike comes to get me.

He pushed me to the blue table and put me on it.  He kneaded and knuckled me and told me to lay back.  Before I laid back, I asked if he was going to hold my knees again.  He nodded and told me that it was going to get me standing.  Well okay then, I asked him how long he was going to do this and he said until I relax.  Well, how can I relax when it hurts so badly?!  I laid back for what seemed like forever and he had me sit up to rest a little.  He had me lay back again and it was a little bit easier.  I was more relaxed but not totally.  It still hurt.

When he was stretching me like I was sitting like a man, I was able to snap this pic because it WAS “Wacky Sock Wednesday”:

WSW #15

I had pulled up my pant leg earlier to show Megan as she was working with Garret.  Mike stretched me out really well and the stretch was better as I laid on my stomach; I asked Mike and he agreed.  Mike put me semi-easily into my car this time.  Elle had come over while Mike was stretching me and told me that the had a product in that Mike suggests for injury recovery clients.  Well, that’s me too because I am trying to walk.  I forgot to get it before Mike put me in my car so he served as my gopher between me sitting in my car and Elle at the front desk.  When Mike brought the powder – IGNITE out to my car, we talked about how I may be effected because my body reacts crazily sometimes to new things and the benefits of using it before workouts.  I think I will try it out on the weekend and see.  I was tired when I got home and slept well again because of my EXCELLENT stretch and my PM Sleep Recovery!

 

NOT COOL Stuff #11

So, it was early in the morning and the parking lot was nearly empty so finding a parking spot was not a problem.  I was with my son and I get out of the car and turn around to go into this particular place and I am stopped.  Dead.  I see this:

NCS #11

Now, I remember way back from driver’s training that the yellow diagonal lines mean that it is a pedestrian cross walk.  So you are NOT supposed to block it.  Now, it was pretty empty but it cross walk is painted yellow because it signifies a ramp.  Wheelchairs need to use the ramp.  Luckily, my son was with me so he could push me up the curb but even the rounded curbs are difficult to get over if you’re in a manual wheelchair.  I tweeted this picture because #DPM2 (Disabled People Matter Too)!!!

 

CCA-MS Making a CHANGE 2015

This year, I also raised money by collecting change in students ‘e3 classes.  The classes were in competition with each other and the winning class would get a FREE dress-down AND a pizza party.

Here is what we collected:

MS Awareness Week CHANGE jug 2015

It didn’t look like much but it took a LONG time to count:

MS Awareness Week CHANGE 2015

We collected OVER $76 and the winning class got their dress down and pizza party.  They had pizza from Dearborn Italian Bakery, cupcakes from Kroger, orange Tootsie Pops, and orange Faygo.

MSAW 2015 Dress Down Pass

 

 

 

5.4.15 Mad Face

The doors were open at Barwis and when I swung my legs out of my car, they got all tangled in the control wand  for my chair topper.  Luckily, Mike (I don’t know his last name) was by the door and I called to him and he got me untangled.  I told him that I could manage after that – which I did.  It was standing day and Mike Rhoades told me to bring my standing shoes.  I got nervous as I drove there but I practiced all weekend and had brought my standing shoes (I only have 1 pair of shoes).  As I was rolling in to Barwis, a young athlete asked if I needed help and took the resistance band off of her waist to help me.  I shook my head and told her that it was good for the upper body and pushed myself in.  As I got into the gym Megan yells me name and I smile and raise my arms.  I was thinking it was going to be a good day.

As I waited for my time, I closed my eyes.  I have been sleeping better but still feel a bit tired.  Mike called my name and told me to wake up and to make my way to the blue table.  He came over and put me on it and kneaded my calves and knuckled my thighs for a bit.  He put his hands on my knees and told me to lean back.  Asking me to do this was the hardest thing ever because he was holding my legs down.  I inched back in little bits with my eyes closed because it hurt so badly.  It took forever but I did it and asked when he was going to let my knees go because that was the reason it hurt so badly.  He finally let me go and told me to sit up.

He told me that we were going to stand and I looked over to the Keiser machine.  He told me that we were going to stand right there and I shook my head.  He said that I could hold his hands and I told him that I needed something sturdy so he smiled and said I could hold his biceps and we both laughed.  He wheeled me over to the Keiser machine and I told him how I always used to do this with Jesse and Phil.  I visualized myself standing and could hear Phil’s voice telling me, “more push than pull.”  I wanted to show Mike what I could do.  An intern named Ryan helped us as I was going to stand.

I couldn’t do it.

I tried and tried and tried.  Mike even told me that it was okay to pull more than push and that he just wanted me to stand.

Wasn’t happening.

It didn’t happen.

I was heart-broken.  Mike pulled me backwards down the ramp and I didn’t think of putting my hands up and “Woo-Hoo-ing” that Mike knows nothing about.  He pushed me to the blue table to get my sunglasses and phone.  I put my sunglasses on immediately in case my emotions got the better of me.  I said  “I’m mad.  This is my mad face!”  Mike pushed me to my car and smiled and jokingly asked if he was going to see [my] smile to which I retorted a short, “NO!”  He tried to get me to smile as he put me in and I refused and did my best to NOT look at him and stifle the smile that was threatening me in spite of being so heart-broken.  He told me all the things about driving safely which is our ritual now but I refused to smile.

He closed my door and I called my Mom.  I told her about my horrible showing at Barwis and she told me that one of my Dad’s work friends called her.  We (my brothers, Mom, and all of our kids) went out to eat with him shortly after my Dad died.  If anything can get me to cry EVERY TIME, it’s talk of my Dad.  So, in light of my showing at Barwis and talking about my Dad, my emotions got the better of me and I cried.  I sat at Barwis for a long time and Dan came out to my car.  I rolled my window down and told him of my inability to stand.  He told me that there would be good days and bad days. I told him that I couldn’t remember my last good day.  We talked for a while and I appreciated it,  He told me that he doesn’t work much with the neurologic side of things but he said GREAT things to me.  I kept me sunglasses on and spoke very slowly so my voice wouldn’t crack but a few tears escaped my eyes.

I started to drive to pick my son up from track practice.  I turned on my Best of  Gavin DeGraw CD and skipped to my song.  Fire – one of my Barwis songs.  I turned it up until I could feel the bass pumping in my ears and rattling in my chest.  As I got on the freeway the bass was accompanied by silent sobs in my chest and hot tears streaming down my face.  I let them come because I knew I would have to get it together and turn down the music before I got to my son’s school.  I did but I was quiet the rest of the evening.  It was a difficult day.  But, I think I will chaulk it all up tp the fact that I was chapstick-less.  That was the culprit.  I tweeted MS 2, Jen 1 but it would have been okay if I wasn’t trying to get out of my chair and regain the ability to walk; which I am but I guess I STILL just have to wait which is the TOUGHEST thing!  Thank God I slept well.

5.1.15 Even Up the Score

Yesterday, I felt HORRIBLE!!!  I left work early and I told my colleagues that the score was MS 1, Jen 0.  My Mom asked if I was going to go Barwis.  Well, Yeah!  Duh! (My Mom ALWAYS tells me to NOT tell her ‘Duh’) but I don’t think people get how much of a necessity Barwis is to me.   It is BEYOND imperative that I go.  Besides, I HAD to even up the score.

I was a little late getting to Barwis with all the traffic and stuff.  It took me a minute to regroup because I went home first.  Mike came out to get me and he was a bit impressed with my transfer ability and pushed me in.  He put me on the blue table and kneaded my legs kind of hard.  I was sitting on the edge of the table and he had me lift my knees up 6 times each.  I did this with minimal “Barwis Magic” and no “Karate Kid Magic.”  I put my had up and I think you are kind of forced to give someone a high-five when their hand is up and the have a goofy smile on their face.  Well, Mike didn’t leave me hanging.  He had me lay back and stretched my legs.  He kind of did the “Ooh Doggie!” stretch but not as intense.

He had me sit back up and had me lift my knees again.  5 times each this time and I lifted my knees up and outward 3 times each.  Now, this deserved a double high-five and Mike hit my hand a few times.  I felt vindicated.  Score is now MS 1, Jen 1.  Nice!  My showing yesterday was good enough for me and Mike said we are going to stand on Monday.  I’ve gotten false hope before regarding my projected performance at Barwis but I am looking forward to that and I slept SO GOOD last night!