Month: April 2015

Somewhat of a fiasco.

My chair topper was broken.  I took it in on Tuesday to be repaired.  A part was needed, so it was ordered but it was not ready on Wednesday.  I NEEDED my car; I can’t drive any other vehicle.  My Mom picked me up from work and drove me out to pick up my car.  In the process, she got a nail in her tire.  She dropped me off at my car and left to get her tire fixed.  As I pulled out of the place, my chair topper opened AS I AM DRIVING!!!  Needless to say, I got a little bit freaked out.  I pulled over with my hazards on and she came up behind me and pushed my chair topper back into place and I slowly drove my car back to Advantage.

Looks like my car cannot be driven yet.    I pulled in to a parking space and sighed.   I was looking forward to going to Barwis but I guessed that wasn’t happening now.  It WAS “Wacky Sock Wednesday” and I was excited to show Megan my socks (Mike doesn’t appreciate them) but most importantly, I was looking forward to the stretch!  I did not sleep well the night before and hoped that Mike could fix that.

I sat in my car a bit defeated when my phone rang.  It was my big brother, Dave.  He was in the neighborhood and would be there shortly to pick me up.  When I was seated in his car, I asked one more thing.  Barwis wasn’t THAT far so he took me there just a little bit late.  I was happy to get stretched and I showed Megan my socks.  Mike wasn’t amused.  I snapped this pic as he was stretching me like I was sitting like a man.  I told Megan they were “Love Monkeys.”  Again, Mike wasn’t amused.

Just after I snapped this pic for “Wacky Sock Wednesday” #14, Elle came over to show me that the sleep recovery powder had come in.  I had talked with her and Mike about my lack of sleep because of the pain in legs.  This powder was supposed to help.  When I was finished, I would pick it up.  Elle had saved it for me with my name on a yellow sticky note.

I took it last night before I went to bed.  BEST sleep I’ve had in a LONG time!!!  I called Barwis to tell them all about it.  Pam said that Elle would be in at noon.  I told her that I would call back to tell Elle and that I would do any necessary endorsements for this product.  I called back later to talk to Elle. She was happy for me and I was excited!  I added that she should tell Mike that my butt hurts from the stretching.  My legs feel good even though it was raining but my butt hurts but it’s a good hurt.

I called Elle when I pulled up to Barwis.  My chair topper was not working AGAIN so my chair was stowed in my trunk so someone had to come get it out for me.  Mike came out, got it, and pushed me in.  As I waited, I closed my eyes because I did not sleep through the night last night.  It had been a little move than a week that I was awakened with my legs in pain but last night; I was.   I really HATE not sleeping well and being awakened in pain but I remember when I slept like a mummy and didn’t move because I couldn’t.  So this pain signifies progress.  Brock said it wouldn’t last forever so I guess I will endure this also.

Mike wheeled me to the blue table and it was all cock-eyed crooked.  Thankfully, he moved it the right way before he put me on it.  He kneaded my calves kind of forcefully so it kind of hurts but I don’t mind so much.  Progress is key!  Regardless of how little it is.  I showed him footage of Sean’s track meet this past weekend and told him how cold and miserable it was and how stiff my fingers were.  Then I told him that my legs SHOULD NOT feel as good as they do because they did not bother me at all even after I sat in the cold for 4 hours!  Again, progress.

He stretched my legs and as he did, Kenny and Gorgi walked up to shake Mike’s hand bid him farewell.  Kenny walked around and put his fist up as I extended my hand and then we both did the opposite and laughed and did that weird hand grabby thing that me and Phil used to do.  He wished me luck on my walking and I told him that I hoped to see him again.  Alex wasn’t there.

Mike had me lay on my stomach and stretched me good.  Then he had me sit on the edge of the table and stretched my legs outward.  He didn’t put the medicine ball between my knees this time and he didn’t break my lap either but my legs opened easier.  He (andJesse and Phil) have explained MANY times why my knees buckle inward a lot but this time it was easy to see some progress.

When I pulled up to Barwis, I got my chair down from the chair topper and was ready to transfer into it but I just couldn’t. My legs felt too weak to stand so I called Elle and asked her to send someone out to help me.  I told her that it didn’t matter who came out to help me because everyone there has helped me and if it was a new intern I would tell them how best to help me. Mike came out and pushed me in all the way to the front desk.  I wanted to get a protein powder that supposedly would help me sleep through the night.  They were out of the powder so I rolled back to the gym.  I saw Alex and told him that I talked to the social studies teacher about him being from Georgia and asked if I spelled his name correctly on my blog.  I spelled his name correctly but Georgie should have been Gorgi and it’s pronounced (Your-Gee).  Apparently a teacher mispronounced it and he just went with it.  I asked him if he speaks Russian and I thought that was pretty cool.

I asked him to say something in Russian and he asked why not Georgian because he speaks that too.  TWO LANGUAGES?!  Three with English!  Too cool!!!    I told him that from now on he can only speak Georgian.  He did a little and it sounded SO COOL!!!  Another guy was with him and I asked him his name and how to spell it.  It was Kenny (he said it was like South Park). I asked if he was from Georgia also and he said that he was from Scotland  and that he doesn’t have an accent.  After talking to him for a while, I told him that he TOTALLY has an accent because he did!!!  Then it was my time and Mike came to get me.

He pushed me to the blue table and it was turned the other way.  He put me on it and I said that I didn’t like it.  He ignored me and kneaded my calves so I said it again.  He had me lay back and it felt weird so I said it another time.  As he raised my feet up and bent my knees, I shot my arms straight out to either side.  When the table is facing the other way, I am able to squeeze either side of the table with my hands hooked under the table.   This seems to help me with the intensity of the stretch.  But, this time I couldn’t because my arms were outstretched on the long side of the table so my hands couldn’t grab the underside of the table and I just grappled with a flat table so I started yelling, “I don’t like it!” as Mike stretched me.  He had no response so I tried yelling it in Spanish, “No me gusta!”  Nothing.  So I went back to English.  I must have said it so much and so loudly that he grabbed both of my ankles and spun me so my feet were hanging off the correct side.  I hooked my hands on either side of the table and all was right in the world.

He folded my legs like I was sitting like a man and then hand me sit up while my legs were still folded, he offered me his hands while he braced my folded legs on his hips..  I could feel this stretch A LOT in my butt.  It hurt so good.  He had me lay back down and repeated the stretch with my legs folded the other way.  Lastly, he had me sit with the BIG medicine ball between my knees for a long time.  When we finished with that, he removed the ball and it felt like my legs were cracked open.  I told him that he broke my lap and he chuckled.  As he was stowing my chair, I told him to tell Alex and Kenny that I wish them the best and hope to see them again (they said they would be back but they we’re leaving Sunday) and he said, “Okay.”  When he was done stowing the chair, I said that he wasn’t going to tell them and asked, “Are you?”  He said, “No.” and shut the door.

I was on-time for Barwis for Wednesday and I was glad.  I transferred to my chair and opened the door.  I was having some difficulty getting up the ramp so Connor pushed me in.  It was BUSY!  Georgie saw me and asked if I was with Mike again today.  I nodded and said, “Until I’m walking.” Mike came over and pushed me to the blue table.  He kneaded my calves and I told him that I slept through the night-ish from Monday.  I told him that I should be feeling the effects from the humidity more than I am in my legs (I’m feeling it in my fingers!).  I guess the muscles in my legs are elongating as Mike said was the goal so long ago.  I guess they aren’t constricting as much because lately, they haven’t been hurting as much.

A man came over, put his hand out, and introduced himself (he’s Alex) I took his hand and introduced myself.  I told him that I have MS and the more he spoke, I heard an accent.  I asked where it was from and he told me that the English-speaking countries he has lived in were here and the UK.  I asked him where else he lived, where his accent is from and he said, “Georgia.  The country not the state.”  I had never heard of that before!  I asked a MILLION questions as Mike had me lift my knees (with Karate Kid Magic) and had me lay back so he could stretch me.  Georgie had said he was from Georgia but I didn’t think much of it.  I thought he was talking about the state!

Alex said he was here until Sunday.  Look at that!  Barwis is international now!  I bet I’ve spelled both Georgie and Alex’s names wrong!  I will ask them if I see them on Friday.  I told Alex about “Wacky Sock Wednesday” because I asked Mike to take a pic of my socks.  He told me to have Megan take it and I told him that she was busy so he took one.    I don’t think Mike takes photography very seriously.

 

I was late to Barwis on Monday. When I pulled up, Deeds opened the door and exclaimed, “Rios!” (They all call me Rios. Mike calls me “Ms. Rios” and I HATE it – reminds me of my students). I got to use the line I heard the night before from Scandal.  Season 2.  (I’m catching up).  Holis said, “I’d apologize for being late but I’m not that late and I’m not that sorry.”  He asked if I got it (could get out of the car on my own) and I told him that I was getting it so then he shut the door. I transferred out of my car and opened Barwis’ door and he pulled me in. As I was heading to the chairs, Megan stopped me to give me a hug.  She was wearing a baseball cap and I told her that I liked it. She told me that it was “Mad Hatter Monday.”  Oh poo!  I guess I HAVE to participate but I’m not a hat person.  We’ll see though…

Mike came up from behind me and began pushing me to the blue table.  I used Holis’s line on him too and he replied that I was a half-hour late!  Well yeah, that and I am VERY sorry when I am late because then I get a truncated stretch.  Mike kneaded my calves and I lifted my knees up 5 times each.  There was a guy named Georgie with him and he watched us work.  I STILL haven’t been sleeping well through the night so it makes me tired during the day.  Not the MS tired (that is a constant) but sleepy tired and that kind of stinks!  He had me lay on my back and he stretched my left leg like I was sitting like a man for a while and he left my legs crossed and stepped back.  I tried and tried and tried but I could not uncross my legs!  I finally looked at Mike pleadingly and he uncrossed them for me.  I laid back (I sat up to try to uncross my legs) and covered my eyes (I was a bit dizzy) and yelled, “For Shame!” repeatedly.

I was TOTALLY bummed that I couldn’t uncross my legs but it was raining on and off all day!  Mike put me in my chair and took me out to my car.  He put me in with ease this time (legs and all!).  He told me that he always wanted it to rain because he got my legs in so easily.  I thought that was strange that he was able to do that but I told him that I didn’t prefer the rain.  I drove home hoping to sleep completely through the night.

I may have looked forward to sleeping well Wednesday night but I was wrong.  I fell asleep quickly but did NOT stay sleeping soundly.  It was like that since the Saturday before and it was almost unbearable for me.  Each night, I would awaken at about 2:00 or a little bit before with my legs aching terribly!  My knees and quads mostly.  I told Mike about my restless sleep.  I choose to look at it positively though.  I have been awakened before with pains in my legs and that was when Adam was working with me.  But hey – at least I am feeling something now!

I remember sleeping in my bed and not really moving at night because I could barely feel below my waist.  Since I have started working at Barwis, things have begun to change.  My legs are slowly waking up.  I asked Brock if he felt that too.  He said that he did and it lasted a couple of months.  It was comforting to hear this because he has already traveled the road I am on.  The road to walking.  I told him that if [this pain] is temporary, a means to an end, I will deal with it.  So, I sat with this fact.  It IS a means to an end.  It will eventually end.  This fact made it easier to bear.

Mike stretched me well on Friday.  He had me lay on my stomach and stretched my legs up behind me.  It still was an intense stretch but not as bad as before.  He still had difficulty getting my feet into the car (I think it is somewhat endearing now) but Friday night, I slept soundly through the night.  It seemed like the first time in a while and I FINALLY woke up feeling rested.

Wednesday morning I woke up tired.  I did NOT sleep well AGAIN.  After my shower, I sat at my table for a LONG time just staring at my contact case and bottle of solution.  I felt wonky.  I didn’t even want to put my contacts in. It was going to be a LONG day!!!  And it was.  I was looking forward to going to Barwis after work.  I left work when school was over and it was 3:27 when I got onto the freeway. I was excited because I would be early. My time starts at 5:00.  I connected on to I-96 from I-75 easily and was making good time.

Then the accidents/closures/traffic jams started.  I-96 express was closed and I had to divert to I-96 local because of the freeway being closed, traffic backed up a lot. I saw the crumpled up car just before the freeway opened back up again. Just as it opened up again though, there was another accident and it was closed again. I saw another crumpled the car and that really stunk! Traffic started up again but then just as I-96 was turning into M-14, it was shut down again.  Traffic was diverted to I-275 so I called Barwis and told them that I would be late but was still coming. It was 5:17.

I only had a few miles to go before my exit (Sheldon).  Traffic was backed up on I-275 as well I finally pulled up to Barwis and my turn by turn directions ceased. I turned my car off and just before I got out I saw the time. It was 6:07. I had spent two hours and 40 minutes on the freeway to get to Barwis from work which usually is like a 20 or 25 minute commute. My time was over. I had missed it. I took a breath and did what anyone would do in my situation. I cried.

Because traffic was so slow and not stopped at all, I had to keep my hand pressed on the break. My wrist was burning as if a hot knife was cutting it or it was being cauterized with a blowtorch. It hurt so badly!!!  I called Elle and told her that I was there but my time had passed and I just needed to sit and rest for a bit so my wrist would stop burning and then I could drive home. She told me to wait there and she was coming out to see me. She asked if I wanted to see if Mike could see me later that day. It seemed like too much trouble to me so I told her I would see her on Friday. I just had to sit and rest a minute because my wrist was hurting a lot.

After sometime, Connor came out to see me. He told me he could move some stuff around in the schedule and Mike could still see me. He told me is going to look at things and doublecheck and he would be back to let me know. He came back at 6:33 and told me Mike could see me at seven. He helped me out of my car and pushed me to the chairs.  I had a very long day at work, a very long day in the car on the way to Barwis, my wrist was killing me, and I felt wonky. What a “terrible, horrible, no good, very bad day!” I was too tired to even want to move to Australia!!!

Mike put me on the table and kneaded my calves for a long time. I asked how I felt and he told me that I felt really tight! He knuckled my  thighs equally as long and try to get me to lift my knees up. That wasn’t happening! He had me lay back instead and stretched my legs out.

The day had been awful thus far, but the stretch felt good. Before he put me back in my wheelchair, I asked him to take a picture of my socks because regardless of it being a terrible day, it’s still was “Wacky Sock Wednesday.”

            He took me outside and put me in my car. I was so tired!  Both physically and mentally. I was looking forward to sleeping well that night.

The rolldown door was halfway up at Barwis.  When I was halfway finished with transferring, Madison came out and held the chair steady for me and pushed me inside right to Megan so we could hug like we do every time I’m there. I waited by the chairs until it was my time.  Mike came to get me and wheeled me crazily (so of course I had to flail my arms all around as he was doing this and said a good, “Woo!”) to the blue table.

He put me on the table and kneaded my calves and was surprised at how tight they were.  I agreed and told him that I had not slept well Sunday night.  I raised my knees five times on each leg. The whole time I was doing this we were debating whether or not to use the “karate kid magic” or the “Barwis magic.” I told Mike about my latest blog post and showed him the video of Mr. Miyagi fixing Daniel’s’s leg at the end of Karate Kid. I told him why it did not work for me.

He ended up doing a combination of both magics. He would clap his hands dramatically and rub them together and after would place them on my knee, he would pinch each side of my knee so then it would work.  So I guess it really was Barwis magic with the theatrical karate kid magic just before.  When I was tired from this, he had me lay back and stretched my legs out.

After a while, he had me sit up and he kneaded I calves some more.  While I was sitting up, Deeds was running the high school group. They were doing sprints. He was calling out the seconds as they were running like he always does. He says the number four funny.  I have commented on it before but this time, I repeated it every time he said it and gleefully laughed each time.  Mike looked a bit amused by my antics and I asked him how you would spell the way Deeds was saying four.  He said, “F-O” but it kind of sounds like “F-O-W.”  Mike put me back in my chair, pushed me outside, and put me in my car with the usual difficulty with my feet.

The rolldown door was open when I pulled up to Barwis and my chair trapper was fixed earlier on Friday so I was able to get out of my car, transfer, and go in side by myself. I wheeled all the way to the chairs and I heard Megan yell from one end of the gym, “Rios in the house!”  to which I responded, “What-what!” and pumping my hands in the air.  I smiled and my extreme comfort there continued.

Mike came to get me and told me as he pushed me to the blue table that Matt had moved from the blue table to the white table in anticipation of me coming. I called a, “Thank you!” to Matt who was still on the white table.  He kneaded my cabs and knuckled my thighs and then told me to raise my knees.  I told him that I needed magic to do it meaning that he needed to pinch my knees before they would move. He told me that he wasn’t doing anything. But for me, it’s like the placebo effect.  Mind over matter.  My mind needed that.  He didn’t do it, instead he told me that he was going to use the “karate kid magic.”

Then he clapped his hands and rubbed them together just like he was Mr. Miyagi and then placed them on my knee. I laughed and told him that it wouldn’t work and that I needed “Barwis Magic.”  It didn’t work.  On my right knee, he said he would try it again so he did the “karate kid magic” one more time. It STILL didn’t work so he had to give me the “Barwis magic.”  After watching that clip, maybe it didn’t work because he didn’t tell me to close my eyes and put his hand on my forehead and he didn’t exhale deeply or maybe it was because the “Barwis Magic” already works for me.

I lifted my knees five times for each leg and then laid back as he stretched me out.  I’m okay with making slow progress.  It will come.  Eventually.  Mike still had difficulty getting my feet in.  That always makes me laugh.  My legs felt good as I drove home.

My chairtopper was still broken so Dan came out, got my chair out of my trunk, waited as I transferred, and pushed me in.  He pushed me to the chairs and I waited for my time.  Mike came over and told me that Matt was on the blue table and that we would work on the white table.  I groaned and told him that I didn’t like the white table.  He pushed me over to the tables.

I looked at Matt and jokingly told him that he, “was messing with my mojo again!” and we both laughed.  He moved from the blue table to the white table.  Score!  I would have a good showing now, I thought.  Mike put me on the table.  Now, basically, I hug him (with my arms around his neck) and he kind of lifts me onto the table and kind of lays me down.  Changing positions makes me dizzy so I hold on to him for a second for the room to stop spinning so I can put my left and then my right hand on the table to let go and sit up.  Something was different this time though.  He had his right arm bent instead of straight and he and Deeds were talking.  My eyes were closed and I was trying to compensate for the difference I felt and I told Mike and Deeds to, “stop talking!, I’m trying to concentrate!” as I held on to Mike trying to make the room stop spinning.

It wasn’t and I was holding on to Mike for what seemed like a longtime so I let go, fell back onto the table, put the heels of my palms firmly over my eyes, and waited as the room continued to spin.  Mike always jokes how I hold on to him for so long and I tell him that it’s because I have a Neurological Disorder and then I tell him that he likes it.  The room will then stop spinning and we get to work.

This time, after he kneaded my calves and knuckled my thighs, I was able to do 5 knee raises on each leg (Thanks Matt for allowing the return of the blue table!) then Mike had me lay back so he could stretch my legs.  He stretched them like I was sitting like a man so I could take this pic because it was “Wacky Sock Wednesday”:

He stretched both legs so my butt REALLY hurt and then he put me back in my chair and took me to get my jacket and out to my car.  He had difficulty getting my feet in AGAIN and I asked how i felt.  He said, “Good, until I try to get your feet in [the xar].” Well, I guess that’s good…?  Slowly but surely…