Author: Jen Rios

I’m still not used to this weather!  I remember Jesse telling me a long time ago that I am my own biggest obstacle. I have to get better in my head to get my legs to perform properly. I know that’s true. Backey used to tell me “don’t think about it; just do it” and Phil tells me to “just walk.” Today, I know I was NOT right in my head. Tomorrow, it will be 13 years to the day since my diagnosis. I think I’m a little bummed out.

When I came in to Barwis today both Dan and Eric asked me what was wrong. I smiled and told them “nothing”and tried my best to mask my emotions which I wear right on my face.  Phil asked me if I wanted to try squats or stands today or just go over to the table. I said to just go over to the table. He stretched me out REALLY good today!  I will willingly surrender in this battle because I know I will win the war! I already AM winning!  So I am going to take this weekend to regroup and gather my troops to be ready for battle on Monday.  Do I like this? No. But it is a strategic tactic.  You have to give a little to get a little and I am going to get A WHOLE LOT!

***Oh!  And as Phil put me into my car today, he pointed out how carefully he does it so YES, PHIL IS THE BEST!!!

 

Yesterday, I went Christmas shopping with my Mom. As we were driving, I said to her, “my legs hurt.” they really did! Last night, I kept trying to flip over and sleep on my stomach because my legs felt gnarled up and it hurt and I wanted to flatten them out. It really didn’t work. I texted Phil about it this morning. I told him the weather is not helping and he agreed.

Parker called me this morning. It was SO nice to hear from him! I hadn’t heard from him in so long! He asked of my progress at Barwis and I told him that so far I have clocked 116 yards. I told him that it is SO hard. I recently told a colleague about the difficulty of training at Barwis and she pointed out that now I smile when I say this. I told her about the difficulty of Barwis when I first started working there but she said that now I smile. I think I smile because I know that all of the hard work that I’m doing at Barwis is a means to an end. The end is going to be me walking. That is something to smile about! Parker wished my Mom, Sean, and me a Merry Christmas and then it was time for me to get ready for training.

Phil took into account the weather and how my body has been feeling lately today at training. He really stretched me out today. I was extremely grateful and it felt really good! I will not have a “Walking Wednesday” this week because of Christmas but I think that how good my legs feel now will tide me over until I’m at Barwis again on Friday. It is easier now for me to accept that it will not be linear progress on my road to walking. Today hurt. That does not mean it will always hurt like this but it does now. I’m just going to get through this pain of today and “tomorrow” it will feel better and I will make strides on my journey to walking.

At this point, I have become more accustomed to how it feels when there is snow on the ground and so much moisture in the air.  It doesn’t feel very good but I can’t escape this feeling.  There are nerves in EVERY inch of your body!!!  It is my nerves that are going wacko!  I have adjusted accordingly, I think.  Yesterday morning as I was leaving for work, it was RAINING on top of that!  Ouch!  As I was driving in to work, I heard my “walking song” on the radio.  I am SO EXCITED whenever I hear that song!!!  Because I had training after work, I was even more excited because I took it as ANOTHER good omen (I didn’t get that it NEVER is) and that it would be a REALLY good day!

The rain continued ALL DAY!  I didn’t have students yesterday (their last day was Thursday) so I was able to get much-needed “behind the scenes” work done.  I turned on Pandora (Wham! Christmas music of course!!!) and got to work!  I heard Wham! and saw that as a 2nd good omen!  I LOVE that song!  I was able to pick my son up from school (I never get to do that!) and he was going with me to Barwis.  He hadn’t accompanied me in a VERY long tine.  Not since he got that concussion during football season and couldn’t go to practice in October.  I saw Sherrie as I wheel in to the workout area!  I hadn’t seen her in SO long!!!  We talked for a long while and we hugged and wished each other a “Merry Christmas!”  I thought seeing her was a 3rd good omen and 3’s a charm so I was excited!

I couldn’t do complete squats.  It felt like someone was pushing my hips down again and I only did like 2 quarter squats and then we tried standing.  It was EXTREMELY difficult to stand; I would only *BINK* for a second before my hips were pushed downward and I was forced to sit.  I talked to Sherrie about this feeling.  I haven’t felt the feeling of my hips being pushed down in YEARS!  Not since I was walking on my crutches all the time – before a wheelchair.  Sherrie pointed out that that is progress!  I hope so!  I HAVE made progress,  I now can feel that my bathroom floor is cold (I haven’t felt a cold bathroom floor under my feet in years!). Mike told me when I first came that I would have to shave my legs again because the hair would start growing again because of increased blood flow in my legs.   I do now.

The table was being used so we used the blocks to do leg extensions and leg curls.  I asked Phil if he read my blog and he told me to open my eyes when he picks me up.  I told him that that would be REALLY scary!  When we were done (I didn’t think my work was that impressive!) I told Phil that my legs felt like Jell-O.  He stood up and told me to keep my eyes open.  I did.  Once I was safely seated he asked if I kept my eyes open.  I told him I did and he asked what I saw.  I told him that I was WAY TOO CLOSE to the ceiling!  I wasn’t meant to be that tall!  I’ll continue to keep my eyes closed from now on!

He told me I did good and we fist bumped once I was in my car.  Not so much.  I saw Mike as I was getting my coat on.  He asked how I felt and I told him “tired.” He told me, “tired is good.”

Okay.  I’ve told myself that it’s not linear progress a MILLION times already!  I am not sure why that is SO hard to get through my head!  It rained on my entire ride home.

On my way to Barwis yesterday, I heard my WALKING song!!!  I took that as a good omen.  I can’t wait for the day when I can clock 100 yards on one drive like nothin’!  NOW, I know it WILL happen but I just have to wait for it.  It’s the waiting part that ‘s KILLING me!

There is still snow on the ground but it wasn’t as bad as Monday.  The sidewalks are still wet but not full of snow.  I got into Barwis all by myself this time.  Phil stretched me out a bit while I sat in my chair but then it was go time.  “Let’s do this thing!”  I was able to stand pretty easily and that seemed promising.  Not so much.   My legs were a bit tangled when I tried to get steps off.  I had to sit down.  False start.  Encroachment.  Move it back 5 yards.  It wasn’t until my 3rd try (3’s a charm) that I was able to get 7 yards.  After that, Phil stretched me a bit more and I was only able to get 3 more yards.  It ended with Phil laying me on the turf while he got my chair.

As I am laying there, I wanted to throw my crutches.  10 yards?!  That’s it?!  Phil walks over to in front of me and leans down and says “10 yards?”  Like, is that good?  Are we done?  I guess I was.  I replied, “Yeah,” a bit defeated.   Now, here comes the uncomfortable part.  Phil has to pick me up from the floor.   He grabs the back of my knees as I have my arms around his neck. This is TOTALLY scary!!!  He picks me up and I’m like 7 feet tall all of a sudden!  I squeeze his neck and bury my head so I can’t see a thing and it usually takes a minute and him saying “okay” a few times before I can let go and realize I am seated safely.  Getting onto the table is a little bit easier for me to handle but it still is not really comfortable.

We went to the table after that and did curls and extensions.  We heard ADAM‘s (really PHIL’s) song at the table.  I was excited!  It was the first time I heard ANY of my songs.  On “Camo Wednesdays” we listen to country music at Barwis.  I most likely will never hear my walking song or Jesse’s song when I’m there.  As we were resting between sets, Phil told me that Sherrie (I met her when I first started at Barwis in July.  She was just starting there too and she has MS also) called him “Phil” earlier today.  She said something like “you’ve got a lot of confidence here, Phil.”  He laughed and I laughed.  I asked him if it was okay that I call him Phil?  (AS IF I won’t or something!)  He said he didn’t mind and I asked how she knew that I called him Phil?  He shrugged and smiled and said it was probably from my blog.  I agreed that I call him Phil A LOT on my blog!  Well, I DO!!!

I texted Jesse, Mike, and some of my friends about the results of “Walking Wednesday” as I was waiting for Phil to take me out to my car. Jesse told me that 10 is better than nothing and that I should keep at it.  Mike told me that it was a great job.  My friends told me that it was a great job and to keep it up and that they were proud of me and asked me how I felt.  One of my friends told me that it was better than #9 (Stafford) did on Monday.  I had to let him know that I still LOVE Stafford!  Then Phil was ready to take me out and all was right in the world because he put me in my car.  On the way home, I heard that Bastille song and I really started thinking…  “How AM I gonna be an optimist about this?”  At least I converted.  They moved the chains.  It is REALLY difficult to accept this.  I watch these older ladies walking back and forth from wall to wall as I am on the table.  I want to walk like them already!!!  Eventually.  I WILL get there.  I just wish patience came easily to me.

TOTAL YARDAGE = 116 YARDS

The PE teacher at my school says that if I get 10 yards each time – that would be a really good average.  He’s right.  I told Phil that I have to be walking by May 6th.  My niece, Natalie, asked me to be her sponsor for her confirmation and I accepted.  I am honored!  When I texted Jesse about it back in October, he said, “let’s do it then!”  Phil is in agreement.  That is my goal.  I have to be walking and standing in order to put my hand on her shoulder when she is confirmed by the bishop.

 

So, I don’t think it’s a good sign when Phil had to come out and come get me from my car yesterday when I got to Barwis. Because of the snow, I had slipped and lost my footing so I was laying half-way on the driver’s seat with my feet outside my car. So Phil came from inside to get me.  He laughed and laughed when he saw me!  It was nice that he found it so funny so my embarrassment was lost in his laughter. I  couldn’t transfer to my wheelchair so he picked me up (so my feet were dangling like 3 feet off of the ground!) and put me in my chair. He wheeled me into Barwis.  I greatly dislike the mess I am after coming in from the snow!  The snow melts and I am a huge sloshy mess.  Of course it is cold so I really don’t want to touch the water but it is all over my wheels.  So what choice do I really have?  Luckily, Phil pushed me in so the wetness wasn’t all down my sleeves along the inside of my arms.

I make my way to the Keiser machine and Phil follows me with a few towels.   He told me to step on them which really didn’t work out (I couldn’t) so he ended up wiping the bottoms of my feet off as well as the floor.  It was a big mess!  I looked at him square in the eyes and said/asked, “Good thing this will be the last winter in a chair, right?”  He told me that he hoped so but wasn’t going to promise anything.  That was an extremely safe statement.  Fraught with diplomacy.  Good form, Phil.  I hope so too!  Actually, I’m going to make it happen.  Days like yesterday make it so very hard though!  Yesterday, it really HURT!  It’s not like I am not used to it hurting.  My body hurts ALL THE TIME!  I just deal with it.  I think because it was the first REAL snow fall of the year and I wasn’t sitting around in my pajamas watching football all day (like I was on Sunday) that it hurt a little bit more.  Today, it’s like, “Oh yeah, I remember how badly this feels” and I have adjusted accordingly.  However, my “accident” yesterday, as Jesse puts it.  It was TOTALLY horrific!!!  Not only is my car totaled, I am pretty badly beaten up.

Before we started squatting, someone comes from behind me and puts my hood over my head and then kind of hugs me and covers my eyes.  I had no idea who it was.  Then they let go and I turn my head as they are stepping to my side.  It was Backey!!!  Al!!!  I haven’t seen him since my first “Walking Wednesday”!  We talked a little before I started doing squats and he asked about my progress.  I told him that I have clocked 106 yards (more on Wednesday – I hope!).  It was REALLY nice to see him!  Then, I had to get to work.

I did a few sets of squats not perfectly but they’re all right. I *BINK*ed a good number of the squats.  I had to really fight to stand some of the squats.  Phil was saying the *BINK* along with me.  It was more yelling it, kind of making fun of it.  I told him that it sounds cuter than he was making it sound.  I asked if anyone else has a sound effect; he told me that no one else did. Yay!  That makes me memorable, right? 😜 We did a few stands which were more difficult than Friday because I was fighting with my body more but I think they were okay.  And then we went to the table.

Once I sat on the table, Phil started to stretch me out.  After he saw how extremely tight I was, he told me to lay down on my back and he would stretch me out that way.  Before I did this, I asked him if it will always be like this (referring to my legs being so tight).  He told me he didn’t know, he didn’t have MS.  Hmmm. That’s an answer.  An honest one but not the one I was looking for.  I think I want to answer to be something along the lines of:  Well Jen, you’ve suffered through this for the past 12 years, 11 months and 18 days so just deal with it for another 100 days and then all the pain will be gone, your brain and vision will NEVER be clouded, you will not ever have trouble with your speech, you won’t be affected by heat or cold, and you will walk normally –  effortlessly: and wear cute high heels if you want.

I’m NEVER going to get an answer like that so I just have to “grab my guts” and “suck it up” and “be a man about it”  and just deal with it because “the blood of strong Mexicans runs through my veins.”  Okay.  I will.  Just sometimes it is really difficult to have a smile on my face when I feel this badly.

Backey took me out to my car and told me that it was cold so he just picked me up and put me into my car.

I showed up to Barwis today a little bit early.  I wheel over to the chairs as is my routine. I see one cane leaning against one chair and two canes leaning against the other.  I think, “those canes are Chris’s and Brock’s.  They’re here! BOTH of them!  Where are they?!” I frantically look around the gym until I spot them.  They were sitting on the table where I often sit and were getting stretched out similarly to like I do. Then I see Brock stand up and walk over to one end of the gym.  He grabs a big yellow balance ball and sits on it. Then I see Chris stand up and do the same. He grabs a green balance ball and sits on it.  Both of them were doing one-legged squats with Mike. To see the intensity on their faces as they were doing them made me realize that is exactly how I look when I am  working. I knew exactly how they felt!  I watched them alternating working with Mike and resting on the balance ball for a long time.  Connor walks by and said hi and I told him, “Brock AND Chris are here! That’s like a double shot of espresso!” (I DON’T even drink coffee but I like the sound of the phrase). It was so great to see both of them walking and working so hard!  They walked about 40 yards and stood talking with Mike for a while.  I resisted my urge to want to take a picture of these three men.  The two sources of my inspiration and the man who is making my dream of walking a reality would be a GREAT picture to have! But Brock and Chris JUST worked out!  I KNOW how tired they were!  I didn’t want to disturb them.

Brock got his things together and said he had a plane to catch. He smiled and told me to have a good workout and left.  I asked Chris about his walker height considering the debacle I had with trying to use a walker.  Hr told me that all walkers are adjustable. I would just have to adjust it to my height (I probably WON’T – I wasn’t feeling the walker thing!).  He told me to have patience and once the pathways are set and things start to wake up then it moves fast. It’s all muscle memory. I just have to push my body to the point where new pathways CAN be set.  Cool! That’s what I’ve been doing! I just don’t have patience.  Grrr!

Phil calls me over to the Keiser machine and I tell him that Brock AND Chris are here!  He kind of laughs mimicking the excitement on my face.  He sits on the floor facing me and grabs hold of my knees.  He tells me to stand up and we will begin.  I always have to warm up with a few quarter-squats (a shallow half squat).  When I have squatted low enough, Phil says to stand up. I felt really good and popped up into a straight stand. When I stood straight up, I made the sound effect sound *BINK.*  Phil laughed and told me to do another squat.  I totally rocked the casbah on that set of squats!  I *BINK*ed every single one!  I did 7 or 8 of them!  For my second set of squats, I *BINK*ed on all except the last one. I had to sit back in my chair before getting all the way up to *BINK.*  Phil ended up having to pick me up off the floor for the next few squats.  So we stopped doing them and worked on standing instead. Phil stood next to me and pushed on my clavicle *BINK* and my lower spine *BINK.*  My first attempt wasn’t that impressive. On my second try, I stood for a very long time! Phil didn’t even time me but I think he was impressed too because I know I was!  Standing today felt a whole lot easier!  I think it is because now I know how to *BINK.*

Then we did leg curls and leg extensions.  Phil stretched out my hips and then his next client was there so Eric had to take me out to my car and put me into it.  He lifted me into the car a whole lot better than Phil but I’m not going to tell Phil that!

I guess I thought things would be STUPENDOUS after standing for almost 20 minutes!  I was wrong.  Very wrong.  I also thought my first “Camo Wednesday” would get better results.  Again, I was wrong.

So, I sent these pics to Jesse to let him know that I was representing “Camo Wednesday” in full effect and that I am a woman of my word.  I told him that I would get a camo shirt when I clocked 100 yards.  I was at 101 yards so I needed my shirt.  I ordered it right after Thanksgiving and I received it on Tuesday.  Last Wednesday wasn’t a “Walking Wednesday” so this would be the first time it was a “Walking Wednesday” and I wore my shirt.  I told Jesse that I didn’t wear camo awhile ago but he told me to get a camo shirt anyway.  I would have to concede in this instance.  I told him that it would have to be a Duck Dynasty shirt.

That is Eric (the one with the GREAT laugh) in disbelief that I got a camo shirt and my cousin Kimmy (ONLY family can call her “Kimmy”!) taking the picture.

We took these pictures after my workout so I was EXTREMELY tired (and TOTALLY look it) but there is a Duck Dynasty logo on the front as well.

Jesse said he liked the camo and I texted back that I thought it will grow on me…  We’ll see.

Phil had talked about Amanda’s walker a number of times to me (Amanda is another woman Phil works with who has MS – I’ve never met her).  When I came in, her walker was leaning against the wall where I usually keep my crutches.  Phil walks over and he tells me that he remembered to have her leave the walker.  We were going to try that today.  I thought it was going to be a lot better walking with a walker.  It wasn’t.

I guess it was just like when I learned to drive with hand controls.  My brother drove me to my driving lesson and I drove for an hour and went home and took a nap.  It was EXHAUSTING!!!  Learning to drive with my hands was so foreign to me I had a hard time getting the hang of it for a while.  Now, I don’t know that I remember driving with my feet.  I have driven with hand controls a little over two years.  I haven’t used a walker before.  It was foreign to me as well.  I told Phil that it got my mojo off.  I couldn’t figure it out.

I told Phil that he has a sound effect.  I told a colleague about him pushing on my clavicle  *BINK* and pushing on my lower spine *BINK* and then I could stand for days.  I wasn’t able to hear that *BINK* as I was attempting to walk with the walker.  It didn’t feel comfortable.  We gave it the “college try” but to no avail.  I think I got 2 yards off and I asked Phil if that counted; he shook his head with a smile.  My right leg didn’t want to join the walking party (it rarely does at this point) so Phil stretched me out a bit.

He grabbed my crutches and we were going to try walking again.  Take Two.  I think because my mojo was off or I was tired after the walker attempt that I could only get 5 yards off.  Then Phil said to head to the table.  I was a little disappointed.  Because I was able to stand for so long on Saturday and Sunday, I thought I would be cruisin’!  Wrong again.

I think I worked hard at leg curls and leg extensions so it wasn’t a complete unproductive day.  I was disappointed but I know that walking is close.  I reported to a number of friends that I only got 5 yards off.  It was difficult to share in their congratulatory texts because I wanted (and WANT) SO much more!  Mike texted me that it “still was a good day!”  I guess it was.  It’s coming.  Walking is coming.  Soon.

   Dan is also in this picture.

TOTAL YARDAGE = 106 YARDS

Every little bit helps.  106 was my room number for my first teaching job.  I taught 7th grade English.  My friend Joe made me a sign that said 106 & RIOS like the BET show 106 & PARK.