12.28.15 La Quinceanera

I’ve gone over the events of today so many times in my head in the past 15 years.  I can remember how it smelled and what that doctor said before turning on her heel and leaving.  Such profound words!

I never would have thought I would be in the place I am right now. Loss of control over my body was so slow that I barely remember being able to do things on my own.  I know that I used to be able to but my memories of doing so are vague.

I’ve  had MS for 15 years and only found Barwis about 2 1/2 years ago.  It’s hard for me to believe that it has been so long. When I was young I looked forward to turning 15.  My Quinceanera.  My party with the dress and church service and attendants (damas y chambalines) and subsequent dinner and dance at some hall where my family and friends would party all night.  Well, I didn’t have a Quinceanera when I turned 15.  I stood up in a couple and have been to a number but as a family, we weren’t that immersed in Mexican culture when I was 15.

I talked with my cousin a while ago and told her that my Quinceanera was coming up.  My 15th year having MS.  We laughed and joked but couldn’t believe that it had been so long.  I REALLY can’t believe it but what am I going to do?  I just deal with the days as they come and work hard at Barwis.  It hasn’t been easy nor do I expect it to be all of a sudden in the near future but I remember that today; I am La Quinceanera.

12.14.15 The Human Shuttle Take 2

I worked with Sue and it had been almost a week since I’d been to Barwis.  My legs were pretty tight  and Sue stretched my legs accordingly.  She took the time to  stretch me really good before we began PNFs.  My legs felt relaxed and stopped hurting which is normal whoever stretches me at Barwis.  My legs relaxed enough so we could do our normal PNFs.

She added in those other ones that still feel kind of strange.  The movements are improving but they still feel foreign and strange.  I guess it’s progressive but progress is SO slow!  It’s crazy how moving my legs can feel SO foreign but it does.  After we did these PNFs a few sets on each leg, we went back to our normal pushes and pulls.

As my time wore down, Sue told me that she wanted to work on the shuttle today but we didn’t have time so she mimicked the movements with her providing the resistance with our PNFs.  I told her that she was “The human shuttle take 2.”  She laughed and my time was up.  I thanked her for making my legs feel better and I was able to sleep well.

12.9.15 “Wacky Sock Wednesday #37 OR “Force Them to Relax” OR Good Sh*t

My legs were really tight and they felt “gnarl-y.”  I worked with Mike and it was evident how tight my legs were.  It took some REAL stretching on his part to get them to loosen up before we could begin our PNFs.  It had been a little while since I had last been there but the weather wasn’t bad so it really stunk that my legs were so tight.  He told me to, “Force them [my legs] to relax!”  It was silent for a moment and then we both started to laugh.  He admitted it was a contradictory statement and I continued to laugh at its oxymoronic nature but at the same time; I tried to will my legs to relax.  They slowly began to but it wasn’t from my will but from Mike’s strength.  Once my legs were loose, I could begin our PNFs.  Mike told me to pull my right leg down and I did as he held my leg up for resistance.  I pulled my leg down all the way to the table and when I was finished, Mike told me that it was, “Good sh*t.”

I laughed  and kept laughing every time Mike said it.  I joined in saying it too because I was making a good showing with my PNFs.  I pushed and pulled as if I knew what I was doing.  As if I could easily control my legs.  Mike raised my left leg higher so I was able to take this picture for “Wacky Sock Wednesday” #37:

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I tweeted this one but didn’t want to crop the picture any further because you could really see Mike’s beard that he’s been growing for a while.

I would like to report that I did extraordinary things but given how tight my legs were when I got here; all I can report is a good showing in my PNFs.  It frustrates me that I just get stretched the whole time but I understand the value of PNFs as Mike Rhoades used to explain to me so long ago.  I can only do so much when my body is resisting me so badly but over time; my PNFs have proved to be some “Good sh*t.”

Continue reading 12.9.15 “Wacky Sock Wednesday #37 OR “Force Them to Relax” OR Good Sh*t

12.7.15 A Flat Tire

So, I was scheduled with Sue yesterday.  My Mom picked me up from work and we got a flat tire.  Getting that taken care of takes awhile!  I called Elle to tell her I wasn’t going to make it. BUMMER!!!  I don’t know how to change a flat tire!

Check out what was in it:

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Man!  What IS that?!  That tire insurance was the wisest thing I did when I bought my car!  Thank you, Ali Reda!!!

12.3.15 32 Hours OR A Random Thursday

Elle called me on Thursday and told me that Mike had a 6 o’clock appointment available.  I checked with my Mom, (she’s driving) and then called Elle back because I was going to take it.  We got to Barwis a bit early and Sue was able to take me early so I could get home early.  Sue and I did our normal PNFs and they felt really strong!  Sue told me hat I didn’t feel THAT tight and I hadn’t been to Barwis since the Monday before Thanksgiving!  I was strong and my responses were immediate and complete.  When told to push or pull my legs, I do so immediately and completed the motion through the entire movement.

Mike had just finished his 5 o’clock appointment and Sue asked for his help with stands.  He came over and he and Sue adjusted my feet and placed their feet in front of mine as stops.  They gave  their outside hands to me and placed their inside hands on my elbows.  I grabbed their thumbs and they held my hands in return.  I pushed with my quads to get to a standing position.  I squeezed their thumbs and my eyes equally as tight.  I gritted my teeth and did my best to keep my quads and butt engaged by squeezing them as tightly as I could.  It was INCREDIBLY difficult but it was the longest I have remained standing in a LONG time.

I told Mike and Sue it had to be 10 hours.  After I sat to rest, my hands felt tingly from squeezing theirs so tightly.  I apologized to them because I was sure I was squeezing the blood flow out of their hands.  For my second stand, I told them it would be for 7 hours as Mike told me to lock my knees and bend forward for a minute and then straighten up so I could more easily throw my hips forward.  Easier said than done!  For my third and final stand, I was trying to decide how long I was going to stand.  It was decided that I would stand for a total of 32 hours because that’s how old Sue is ? and that was Mike’s football number in high school.

I’m not sure how long I REALLY stood for but it was a LONG time.  It felt good and I was tired.  It wasn’t until my Mom was pushing me across the gym and out to the car that I realized that it was not Wednesday.  I asked my Mom and she told me that it was just a random Thursday.  Ive never been to Barwis on a Thursday but it’s no wonder I did SO well!  I LOVE Thursdays!

11.23.15 “Dance Gurley Man! … Dance!”

Recently, while watching football on the weekends, I have seen THIS Jolly Rancher commercial and it has become my favorite!  I think it’s HILARIOUS!  Gurley has been on my fantasy team a few times so far this season.  I keep saying, “Dance Gurley man!… Dance!”  My son shakes his head at me and tells me that it’s not as funny as I think it is.  I don’t care.  I kept saying it on the way to Barwis last Monday and when we stopped, before we got there, I showed my Mom the commercial and laughed and laughed.  I think that is a funny line – “keep on sucking.”

Barwis was busy, there were a bunch of little kids there.  I think there were 3 or 4 teams working out there.  I worked with Sue and we did our normal PNFs.  I was a lot stronger doing these and I talked about how I used to think that just being stretched out was NOT productive.  I told her how I had to stop “Walking Wednesdays” with Adam and how Mike Rhoades used to stretch me out.  I explained the “Ooh Doggie!” stretch to her and she completely knew what I was talking about.  After we did that diagonal stretch that I’m not good at, she had me roll my leg out.

I remember doing this, or rather, ATTEMPTING to do this with BOTH Jesse and Phil.  It was SO difficult that I was TERRIBLE at it!  Thinking of the Todd Gurley commercial, I told Sue that, “I sucked!”  and laughed and asked if she saw the Jolly Rancher commercial.  She told me that I didn’t and then she bent my legs and I STILL could do it.  It felt REALLY good!  My Mom came over and she didn’t realize that I was the one moving my legs until Sue told her.  I texted Jesse and Phil the good news.  I told them, “Look who’s not sucking anymore” and explained the Gurley reference.  I told Jesse, “who would have thought that it would take 2 years, 4 months, and 11 days?”  Well, I didn’t think it would but it feels SO GOOD to get control of my legs again… regardless of how slowly getting that control takes…

I wished Sue a “Happy Thanksgiving” because that was the only time I was at Barwis before Thanksgiving.

December 2015 Faves

It feels SO good to have my car back!!!  I’ve missed you Bea!!! (my car is a girl).  She is named after Colbie Caillet (the 1st song I heard on the radio the first time I drove it).  I can hear songs now!

Sean says that I listen to “teeny-bopper” music.  Yeah, well… Whatever.

“Wildest Dreams”. Taylor Swift

“Hello”. Adele

“Good To Be Alive (Hallelujah)” (EXPLICIT)  Andy Grammer

“Song For Someone”  U2

“She Used To Be Mine”  Sara  Bareillis

“Worth It”  Fifth Harmony

“Renegades”  X Ambassedors

“Go Big Or Go Home”  American Authors

Throw Back Tune: (I WAS a teeny-bopper!)

“Disease”  Matchbox Twenty