NOT CCOOL Stuff #10

It’s been a while since I have had to post a pic out something NOT COOL but I was met by something NOT COOL when my son and I finished dinner.  Normally, I don’t like to say where I am but the parking situation in this case was a city lot.  I am approaching my car (my son pushes me when it is SO COLD and SNOWY like it still is) and as we get closer, I see this:

.image

Well, there are a few problems with this picture: 1. The other car is parked on the line for my parking space (isn’t that illegal?!) 2. I’ve given my self some space but I couldn’t give my self any more because to the right of my car was the walkway/ramp to get out of the parking lot and go to the various businesses/restaurants so I could not block that.  3. I think this is the main problem.  I see it ALL THE TIME and here is where people need to realize that Disabled People Matter Too (#DPM2 – I already tweeted this pic).  Not all disabled people are the passengers in a vehicle so therefore, diagonal lines need to be placed on either side of a disabled parking space.  I’ve said it before that disabled parking spaces need to be larger for a reason.  I love my 2012 Malibu because the doors open wider than normal.  I need to open the door all of the way to fit my wheelchair next to the driver’s seat door so I can transfer into the driver’s seat.  In this case, I relied heavily on my son to get me into the car because I was not able to open the driver’s side door completely.  It was a good thing that it was Boneless Wing Thursday and my son has to eat too because what would I do if I were alone?!

3.2.15 Ta-Da!

Deeds pulled me in to Barwis again.  He runs the high school group and they are usually doing drills using the 20 yard hash marks or  running their sprints usually so he is by the door.  I guess that is kind of our thing.  He will stop and pull me in and I tell him it gives the kids a rest, a chance to catch their breaths.  Maybe secretly they are thanking me.  So I got in and waited for my time.  Mike pushed me to the chairs and I didn’t wear my hat and gloves because it almost seemed like it was going to get warmer.  It since hasn’t but it can’t be cold FOREVER!).

Mike pushed me over to the table and sat me on it.  Monday was an emotionally draining day for me.  It was the beginning of MS Awareness Week and I am doing some fundraising for the Michigan chapter of the MS Society at my school (CCA-MS) and we had a speaker come in to talk to the kids during their e3 classes and before lunch.  It has taken over 10 years for me to finally talk about MS but I wanted my kids to know about it because I knew nothing about MS before they told me that I had it.  I was tired but looked forward to my stretch.  Mike kneaded my calves and knuckled my thighs because my legs were pretty tight because I was emotionally spent.

He had me lay back slowly but I was able to do so without it hurting too, too badly.  He stretched my legs up and put me in the, “Ooh Doggie!” stretch with my feet pointed toward my right side.  Then he crossed my legs, took a step back, and pulled his phone out.  He was doing something on his phone and told me to uncross my legs.  I closed my eyes (because that is what I do when I REALLY have to concentrate) and tried to think of which muscles to activate in my legs to get them uncrossed.  My mind was moving very quickly but my legs weren’t.  Mike told me something like whenever I want to uncross them because they hadn’t moved.

But then it was like that moment when you feel a knot you are trying to untie loosen a bit so you KNOW you will untie it.  It was like it was a Rocky movie (4 is my FAVORITE) and the music has started playing during the fight.  The Russian has already been cut and the tide has changed.  I felt my legs move and I KNEW I was going to uncross my legs.  I did and threw my arms up as I laid on the table and yelled, “Ta-Da!” pretty loudly!  Deeds said, “Geez Jen!” from across the room and Mike just kind of shook his head with a straight face.

He stretched the other side and I uncrossed my legs for a second time.  You know I had to yell another, “Ta-Da!”  I uncrossed my legs TWICE!  It is SO cool to tell my legs to do something and for them to actually do it!!!

March 2015 Faves

Sledgehammer”  Fifth Harmony

*3 Grammy Inspired Tunes:

“Just A Little Bit of Your Heart”  Ariana Grande

“My Heart Is Open”  Adam Levine/Gwen Stefani

“bY The Grace of God”  Katy Perry

“Love Me Like You Do”  Ellie Goulding

“Bright”  Echosmith

“Style”  Taylor Swift

“She Knows”  Ne-Yo (feat Juicy J) EXPLICIT

*And an Oscar Inspired Tune

“Gratedul”  Rita Ora

 

2.26.15 “Wacky Sock Wednesday” #5

Dan pulled me into Barwis yesterday.  After I pull up to one of the disabled parking spaces, I know that I just have to open the door and I’m home free.  The tricky part is getting out of my car and into my chair in this extreme cold!  The cold causes my legs to “seize up” or straighten up tightly so it’s near impossible to bend them to get out of my car.  Yesterday, because it still is SUPER cold out was more of the same.  I opened my car door and when I realized that my legs weren’t going to bend I leaned back and SLOWLY inched my feet out of the car.  I said, “Little by little … Jen, little by little.”  I didn’t have to mutter to myself because there is NOBODY outside in the back of Barwis Methods.  I haven’t said this proverb to myself in a while so it was nice to hear and remind myself of it’s truth.

Mike pushed me over to the blue table and there were two other people in wheelchairs already there.  One person, (Chris?) was getting off of the table and his caregiver was helping him.  I said to Mike that I felt like I was in a traffic jam with all these wheelchairs.  So, now there were two of us in chairs and one table.  Megan had slipped in with Garret and they were on the white table.  Mike walked over to Nick to decide who was getting the table. I suggested that they have an arm wrestling contest to decide who gets the table.  Mike just kind of rolled his eyes at me.  Then I suggested “Paper, Rock, Scissors.”  As Nick was headed over to the red mat, Mike told me that my suggestions were “SO juvenile!”  I reminded him that I teach middle school.  As it was being decided who got the table, I showed Megan my socks for “Wacky Sock Wednesday” #5.  She had socks with penguins on them.

Wacky Sock Wednesday #5

Mine had elephants on them.  Elephants are my FAVORITE animal!  One of the elephants was holding a daisy in his trunk. Not only are the socks purple (my FAVORITE color), but they also have a daisy on them!  Jesse and Phil used to call me “Daisy.”  My son says that these socks were made with me in mind.  I agreed.

The stretch was SO intense that I shoved my sweatshirt sleeve in my mouth to bite down on to stifle a scream.  After a stretch, Mike crossed my legs and stepped back.  He told me to uncross them by myself.  I said to myself over and over, “Little by little, Jen.”  It took a long time and I told Mike not to give up on me.  Then my legs uncrossed.  I yelled, “I did it!” just like Dora the Explorer (my friend, Travis, told me that I look like her when I cut my hair) and Megan repeated that I did it from the other side of the gym just as loudly.  She was busy the second time so a different trainer named Mike  told my Mike that I did it kind of making fun of me.  I told him that I uncrossed my legs twice!  I was proud!  Mike took that picture of my socks, put my shoes back on, and put me (kind of easily) in the car.  I drove home with my legs relaxed and feeling good.

2.23.15 Calves

Donny pulled me in to Barwis on Wednesday and a few of the camera crew guys from “American Muscle” were there.  They were shooting a video for The First Step Foundation.  As I rolled to put my jacket on the chairs, one of them saw me and said, “Hey Stranger!” as he walked by.  It was nice to see him again.  He came over and talked with me and asked how things were going and I told him that things were well and that I am not walking yet.  He told me that I will soon and we took a selfie before I started working.

image

Mike pushed me to the blue table and sat me on it.  I told him that I felt a little tight and he worked my calves before having me lay back.

The stretch was INTENSE as usual and I sat up and rested a bit after a while.  He told me that he was going to stretch me “ike I’m sitting like I’m a man” (it was nice to hear him describe it how I do).  He had me move my legs into position as much as I could (which WASN’T a whole lot!).  He leaned it and it clapped my hands over my face to stifle a scream.  I kept saying over and over again, “My butt!!!”  I asked him why my right side was always MORE sore than my left side.  He explained and it made sense to me.  My right side has ALWAYS been my “poop side”!  He had me roll over on my stomach and Dan sat next to me on the table.  I panted and grunted as he stretched my legs back and asked if it will ever get easier( it didn’t seem very easy right now!!!).  He told me that the only thing that feels tight is my calves.  Really?!  I guess I AM progressing.

I drove home feeling tired and my legs felt loose.  I guess my right side isn’t totally my “poop side” regarding the “man sit” stretch.  BOTH sides of my butt hurt equally!  Which it A LOT!!!  But okay.  I will take it.  I’ll just wait until it doesn’t hurt any longer and that day was NOT Monday!

 

87th Academy Awards

So, I watched most of the Oscar’s on Sunday.  Cried my eyes out at Tim McGraw’s cover of  Glen Campbell’s song even though I am NOT a HUGE Country fan because they told WHY he was singing in Glen Campbell’s place (the progression of the disease is too far gone for him to perform).  I cried.  I looked for an adequate video to share but couldn’t find one on Monday (it was poor quality) but I cried again.  I finally found one and I even showed the video to one of my 7th grade classes, a student asked me to turn the lights out.  It was lucky for me because I cried again.  It was also lucky that the bell rang to end class so I could keep the lights off when a student opened the door to leave.  Then, I collected myself for the next class.

How beautiful to write this before…

Check it out:

“I’m Not Gonna Miss You”   Glen Campbell sung by Tim McGraw

2.20.15 Like It’s Tuesday

Connor came out to get me again, when we got inside, Megan gave me a good hug and we talked about the extreme cold we’ve been experiencing.  Mike pushed me over to the blue table.  He put me on it and began working my calves and ankles.  As he knuckled my thighs, I asked how I felt.  He thought a moment and furrowed his brow a bit.  He said, “Not as loose as Wednesday and not as tight as Monday.”  I repeated that a few times to myself thinking about it.  “So, it’s like it’s Tuesday?!”  I asked with an enthusiastic smile.  He kind of half-laughed/snorted with a crooked smile and rolled his eyes and said, “Yeah” and told me to lay back.  I get that type of response A LOT to questions I ask like that so I was cool with it.

I laid back and braced myself for the intense stretch that I knew was coming.  As he stretched me, (it was INTENSE) I asked about my weather-related progress.  It’s been SO cold as of late and it has been REALLY difficult for me.  Mike said that the best time for me is going to be Spring and Summer.  I told him that it had to be early Summer because extreme heat isn’t good for me either.  He said that he would be more aggressive when the weather breaks.  I’d argue that he’s pretty aggressive now!  He commented that my left leg was looser than my right leg and worked my right leg more than my left side to even up the score I supposed.

My legs were relaxed as I drove home.  I fell asleep easily and awoke this morning with my legs  in a whole lot of pain.  It almost felt like they were burning.  I remembered just after my diagnosis describing the sensation I felt in my legs was as if they were burning.  That was YEARS ago, back when I was on crutches and even before that when I was still walking by myself without any aids.  When I was still walking.  When I was still walking.  I haven’t clearly felt this much of a burn in my legs in a long while.  I almost forgot.  I remembered my legs burned that time that first summer I came to Barwis when Jesse stretched me like CRAZY!

Barwis 6

Barwis 8

Since then, the sensations I’ve felt haven’t really felt like this.  For the past 19 months, I’ve had all varied levels of sore muscle sensations but not like this.  I just put it together that the last time I felt sensation like this I was walking.  It can’t be that far off now… I feel it.  I’m excited!!!

 

 

2.18.15 “Wacky Sock Wednesday” #4

i was a bit late to Barwis yesterday.  Traffic on I-96.  Connor came out to get me.  When we got inside, Megan came over to give me a hug.  I pulled my pant leg up and showed her my socks for “Wacky Sock Wednesday.”  I thought it was #3 and I tweeted the pic that Mike ended up taking of my socks but it REALLY was #4.  Mike pushed me to the blue table and put me on it.  He started working my calves and ankles and was pleasantly surprised.  He kind of grunted in surprise.  I said kind of morbidly, “Yeah,  if MS doesn’t get you in one way; it will get you in another.”  I looked away and Mike asked me if I cared to explain.  I looked at him briefly and shook my head saying, No.”  Today, my legs may NOT have been very tight but I told a colleague at work that I felt like the score was MS = 1 and Jen = 0.  It was THAT kind of day.

Mike stretched me REALLY well.  He put me in the, “Ooh Doggie!” stretch and he did a new kind of stretch where he pushed my ankles backward as I was sitting on the edge of the table.  I felt the stretch intensely in my quads.  After that, he had me lay on my stomach.  A few times ago, I asked him if eventually I won’t need such an intense stretch.  He answered that it was possible and that I may need less of a stretch and we would do more work walking.  I remembered that I liked hearing that and now that my legs were a bit looser I had an easier time almost believing it.

I was having a difficult time taking a picture of my “wacky” socks so Mike took pity on me and took this picture just before we finished:

Fire Socks

So, my ankles had become a bit swollen (I don’t ALWAYS have cankles!!!).  But, in addition to my TOTALLY RAD socks, I drove home with my legs relaxed and I fell asleep easily.  I awoke this morning with my quads burning and painfully aching.  I texted Jesse this morning telling him among other things that my quads were KILLING me and that, “One muscle group at a time, (remember, that my butt was KILLING me earlier) slowly my legs are waking up.”  He thought that was great about my legs and it made me happy too!  It was NOT comfortable to awaken in such pain but I was happy that I ACTUALLY felt something!!!  It’s been a LONG TIME since I have really felt sensation below T7 in my spine (where one of my original lesions was located upon diagnosis).  So, retrospectively, thinking about that score,  I think it may actually be Jen = 1 and MS = 0 in the long run.

2.16.15 I Can Take It

On Monday, I think it was Garret’s dad who pushed me in to Barwis but I got out of my car by myself and he offered to open the door so I asked for a push up the ramp.  I was kind of tight so I was looking forward to the stretch.  Mike pushed me over to the blue table and I sat as he worked on my calves and ankles.  He then had me lay back and he did that one stretch where he folds my legs like I am sitting like a man.  It was CRAZY intense!!!  I kept saying, “I can take it!” It was more for myself.  I was trying to convince myself that if I just breathed through it, it would be better for me if I just endured the intensity.  Nick even commented because I kept saying so loudly but it kind of hurt!

Then he had me lay back and he worked on my ankles again.  I laid there thinking of a book I used to teach my 7th graders when I used to teach English.  Don’t You Dare Read This, Mrs. Dunphrey.  My Kids REALLY liked this book and I was thinking of and trying to remember the situation surrounding the protagonist Tish when she made the comparisonof having to take really bad-tasting medicine.  Something about being able to handle it if you only had to take it so many more times.  That was how I felt at that moment.  I remembered telling Phil this too that I can take this if there is an end.  But, sadly, with MS there is really NO end.  I was thinking about this as I laid there.  My legs weren’t on fire, that description didn’t fit. But, they DEFINITELY have been worked.  Mike said he liked this stretch because I just laid there and didn’t talk.  Yeah, not VERY common but I was trying to remember the book and deal with how my legs were feeling.

Mike put me in my car and I felt extremely spent as I drove home.  I practically fell into bed; EXHAUSTED!  My butt REALLY hurt!  But I fell asleep and woke up in the same position.  I slept THAT deeply.  I only have slept like that one other time about 7 years ago, right when I got back from Florida and seeing Jack, the electronic acupuncturist.  Even then, it may have been just a nap, not the ENTIRE night.  I woke up Tuesday with my butt still hurting but grateful that I slept SO well.  It’s NOT so much that I CAN take it but I HAVE TO take it.  But I will.

2.13.15 Classic Rhoadhouse

I got out of the car by myself and just as I was almost at the door when I saw evidence of someone working their hardest (someone yacked in the snow). GROSS!!!  I thought about Parker telling me that that type of thing is applauded here and I smiled. I opened the door and Dan pulled me in.  Mike pushed me over to the blue table.  Something was wrong with him; he was kind of poopy.  My calves and quads were extremely tight so he kneaded and knuckled them.  I used to be able to call Phil ,”Adam” when he was poopy because “Phil” was ALWAYS nice to me.  This didn’t work with Mike.  I was at a loss and he told me to NOT talk.

SERIOUSLY?!  Can I really do this, especially since he was stretching me?! The answer is NO.  I tried.  No dice.  This time, he put me in the, “Ooh Doggie!” stretch and crossed my legs and left me to turn to the other side of my body and get untangled by myself.  It took some time but I was able to do this.  Nick came over and sat in my wheelchair.  I told him that Mike was being poopy and he said that it was, “Classic Rhoadhouse.”  I laughed and said it a few times to test it out in my mouth.  Yes.  I liked it.  It was funny because Mike’s last name is, “Rhoades.”

Mike took me outside and ALMOST smoothly got me into my car after he commented on the yack.  He half smiled, waved, and told be to,”Be safe.”  As I drove home, my legs were relaxed and I slept well again.  It’s nice that I FINALLY am sleeping better in the cold… Only took almost two years!  The wait is hard work but I am sure it will be worth it when I get to my end. It’s SO true though, “Little by little, a little becomes a lot.” ~Tanzanian Proverb.  For now, my “little” is a good night’s sleep.