Day 84 COME JOIN ME!!!!L

OK, here's the reality:  people are not going to be fascinated and motivated by me forever.  I am not the only overweight, middle aged woman trying to get fit and also raise money for a cause close to her heart.  Over time, its just not that interesting anymore.

SO.......I NEED YOUR HELP!!!  Get off your fat or skinny behinds and come join me!  Start your own blog.  You'd be amazed what you notice about your day when you know you'll be writing about it later.  OR, don't start a blog, but join me at the triathlon and have your friends and family sponsor you and you can raise money for Patrick.  You can refer your supporters to my blog and they can donate from there.  You can also always accept checks to Sr. Paulanne's Needy Family Fund, Attn: Patrick Stein in the memo section.

It is so much more fun to have a group.  The energy is contagious.  And frankly, I'm a different person today than I was last year at this time.  Unless you are one hundred percent satisfied with your self, and god bless you because you're going to hell for lying, its amazing to take on something like this.  Your stories will mean so much more to your family and friends than mine.  Your transformation will transform them.

The triathlon is August 26, a Sunday.  On August 25, there is a super sprint triathlon.  Its half the distance of the sprint, so the break down for the super sprint is 1/4 mile swim, 6 mile bike and 1.5 mile walk/run.  I started at this level several years ago and it is very manageable  Anyone who participates on Saturday I will be there with bells on, balloons, signs and lots of cheering.  Its a GREAT way to work your way into a triathlon.

August 26 is the full distance and the sprint distance.  The sprint is 1/2 mile swim, 12 mile bike and 3 mile walk/run.  The traditional distance is twice that.  

And, ultimately its all about Patrick.  The personal transformation alone is worth it, but then to raise money for a great kid...it doesn't get much better than that.  Personal indulgence at its best!

I committed at the start of my blog last year to not let politics get in the way of reading and writing.  So anything I write here is fact and you can draw your own conclusions.  Right now, the Steins and Patrick are in imminent danger of losing all their nursing care from the state Waiver program they are involved in.  They have already appealed once and lost.  They are now appealing in Circuit Court.  I am a glass is half full kind of girl, always.  But the state is not flexible.  The cost of care is about $300,000 a year to care for Patrick at home.  The state's recommended alternative to those who are not in a financial position to support that care, is to place the child in a hospital or nursing home.  They will pay for a long term hospital or nursing home for the child.  Without boring you with the numbers, it is hugely more expensive to pay for care in a hospital or nursing home.  The Steins are not the only family faced with these type of decisions.  A child, living in a nursing home?  My God.

The reason Pat has lost his Waiver status is because his trach is out and the state feels he no longer requires the level of care needed to qualify for their program.  Again, I'll skip the details, but if you are interested, message me and I will fill you in.  I was at the appeal with Patrick and his parents.  Remember, Patrick's primary goal was to get his track taken out, and it was last October.  After the appeal, when we were back in the van, Patrick said (blinked), "What exactly happened in there?"  I explained.  He said, "Why didn't anyone tell me I would lose my nurses if I lost the trach?"  I asked him if it would have mattered, would he have considered keeping the track.  And he said yes.  Imagine making that kind of decision.  At 19 years old.

So money continues to be needed to keep Patrick at home.  He's also on the verge of getting an awesome electric wheelchair that will give him so much independence and drive the rest of us crazy.  Money is needed for that.  And for continued therapy.

I really hate talking about money.  But its money to support a life.  And not a life in terms of  a beating heart kind of life, though statistically a person's life expectancy decreases hugely when in a nursing home, its about supporting a life in the fullest sense of the word.  Life as an experience, a calling, a roller coaster, a living vision, an opportunity to make your mark in time.  That's what you are supporting.  How cool is that????

So of course I welcome any contribution you can make.  Anything.  Our goal is to beat last year's $10,000.  But much more awesome for you, me and Patrick, is if you joined me and engaged YOUR buds to pitch in.  And we'll have a giant party!!

COME ON!  JUMP IN!  ITS NEVER TOO LATE TO TRANSFORM!!!!

WWW.CHICAGOTRI.COM  SIGN UP!!!!

(if that's not the right sight, google it)

Day 99 Seriously, am I really that old?

Got the bike out today and went for a 2 mile ride.  I know!  Its not that far, but more importantly, I did not have to put it in the easiest gear like I did last year and I instantly captured that flying feeling I had when I was a kid and took me 6 months to get to last year!  Whoo Hoo!  Now back to reality...It was only two miles.  And and in between each mile was a visit with Patrick.  And it was on level ground.  But still!

Ok, as most of you know I have been taking ballroom dancing lessons for about 6 months.  My teacher, Vlad, has a split personality between a prick and a dreamboat.  Mostly a prick.  Very hard.  Insistent on technique and dancing professionally.  Each little movement has to be perfect.  I on the other hand, want to blast ABBA and look like the dancing queen.

A couple weeks ago I went with one of my dancing buddies to a professional ballroom competition in Milwaukee.  Vlad had several students competing (all of whom one first place so maybe being a prick pays off) and we went to support him and his group.  Plus I was DYING to see a live competition.  Dancing With The Stars, Midwest version.

Little bit DWTS, little bit Dance Moms and a little bit Honey BooBoo.  And worth every minute.  Beautiful gowns, amazing professional dancers, adorable little kids...the whole scene.  My friend and I, I will call her "J" to protect the innocent, were really looking forward to Saturday night.  This is the professional competition.  Bar.  Formal dress required for the audience.  Bar.  A big night out for us.  Getting dressed up, mingling with dancing stars, fabulous entertainment and a Bar.

J and I each brought 4 outfits for 1 night out.  This was not planned or coordinated ahead of time.  4 outfits.  J brought 6 pairs of shoes and 3 pairs of pantyhose.  I brought 5 bras.  2 were strapless, however none of my 4 outfits were strapless.  I have 2 boobs and 5 bras.

We're like teenagers getting ready for the big dance...so excited.  It is at this sad juncture that the reality of aging rears its ugly head.  J can't decide which hose to wear because she needs to strike the right balance between being pretty and sheer and covering up her varicose veins.  It takes me 15 minutes to wiggle, pull, jump, kick my way into my high waisted, control top panty hose.  Getting into nylons, particularly control top, is not something the person you are having sex with should ever see you do.  Because you will never have sex with that person again.  Whatever mystery was left is now history.  Finally J has to pull up the back of my panty hose (the front always comes up fine but the back never does.  Why is that???) so I'm within an inch of having my nether regions bisected by a panty hose seam.  But they stay up by God!

J promptly runs the pantyhose she thought covered her varicose veins the best without looking like WWII support hose.  Luckily she brought "leg make up" to cover up the slight imperfections.  One make up applicator had a sponge tip and did a good job, but looked a little heavy.  That was quickly washed off, but now all the washclothes and towels were stained with leg make up.  The other choice was a spray make up that also worked well, except the spray nozzle was pretty wide and the entire floor, toilet and counter was covered in make up.  I turned around and J was on her hands and knees scrubbing the hotel floor and toilet.  The next morning she smuggled the washcloths out with a couple towels so we wouldn't be charged!

We had a great time!  Cocktails.  Cheering.  Imagining ourselves as the beautiful dancers.  Just a few more lessons with the asshole/dreamboat and we too would be competing, floating across the dance floors with steps so beautiful, so unique, so intricate the judges would surround us after we claimed our prize money, begging to know our secret.  A modest nod to Vlad who looks oh so Russian and oh so handsome in his tuxedo.

The lights come on and we filter out back to our hotel room.  The elevators filled with people recounting every step.  We are still riding high on the beauty of the night.  I gradually become aware of something being wrong with my boobs.  I realize one boob is in a cup and one is not.  One is just lying there in its unsupported splendor.  How the hell did this happen???  J and I step it up a bit in getting back to the room.  I had decided to wear one of the strapless bras to better accentuate my shoulders in my spaghetti strap top.  We enter our room, I pull up my top and one cup has flopped down, docilely lying down against my stomach, leaving my breast to fend for itself.  5 bras and I pick the one that goes on strike.

We are peeing in our pants laughing so hard.  I have a half bra, we turn and look at a bathroom painted in varicose vein cover up make up.  So maybe we aren't exactly like teenagers getting ready for the big dance....

So seriously, are we really getting old?  Who gives a fuck! Bring on the rhinestone, crystals and big fancy dresses!

And the Triathlon!!

Day 117 (Counting down this time) Hi From Patrick (and Mary Jo)

May Day May Day!!!  I know May Day has all sorts of religious and pagan ritual connotations, but I've always associated it with a cry for help...like when the ship is going down.  I am participating in the 2013 Chicago Triathlon since last year was such a huge success!!!  As always however, I need as much help as I can get....so May Day!!

The following is directly from Patrick to all of you:
"Hey gang, slow and steady wins the race.  Both of us.  I just always keep thinking never give up.  And don't worry, this time shall pass. The times when things are hard.  I realize things may not change as fast as I initially thought.  But some day it will be just a short memory."

That's Patrick.  Very rarely discouraged.  Never whines.  Never complains.  Sometimes acts like a little prick, but I'm beginning to think that goes with the territory of being 20 and not having a whole lot of control in your life.  Thank God I can complain and whine for both of us!

Just to recap:
1) 2012 Triathlon completed at the record breaking time of 4hrs 37min (lets not waste a lot of time on exactly which record I broke)
2) Been continuing to ballroom dance since November 3x/wk.  LOVE IT but still cannot breath after about 30 seconds of swing, salsa or cha cha.  Can go about a minute on rumba because its slow.
3) Realize although dancing 3x/wk may bring me to my goal of national ballroom champion at the age of 70, I don't have that long to get in shape for the triathlon.  Let me just state for the record being a national champion is not my goal but I like the way it sounds.  Dancing With The Stars however....
4) Have hired the MOST WONDERFUL TRAINER, Mary Nimrod.  She's local here in Glenview and is fantastic.  I see her 2x/wk.  Between her and Vlad (my Russian dancing teacher who has the patience of a saint even though he drives me crazy) I intend to cut off an hour and a half from my triathlon time and lose 25 pounds.

Done.  Said it.  Put it in writing.

A few updates on Patrick.  Patrick's trach tube was removed in October.  This was a huge step for him and he spent a long, hard year advocating for himself to his doctors.  He is now taking college courses. He's also beginning to see himself as bigger than his injury and thinking about where he will be in the world as a young man.  Thinking about entrepreneurial ventures and what he can contribute to the world.

Patrick and I also performed a stand up comedy routine at the Laughing Chameleon in Glenview in December.  I think I speak for both of us when I say it was a huge success.  If anyone knows anything about editing a DVD let me know.  We have a great video recording of the night but it needs some editing...not every line was a pearl!

                                                      Me and Patrick at the Comedy Club.

So much to talk about since I've been quiet since December.  I'll spread it over a few days.  Your peace and quiet is over!

WE'RE BAAAAACK!

You know you're in trouble when you dust off your scale to avoid any possible bit of extra weight.  Really in trouble.

Date of the triathlon: August 26, 2012.  Last time I exercised: August 26, 2012.

Sigh.

Okay, that's not exactly true.  Its the last time I did any traditional type exercise, ie: swimming, biking, walking....the usual drill.  However, about 6 weeks ago I started taking ballroom dancing lessons.  Yes, I have my own private, Russian, child (27 years old) who is teaching me the Rumba, Salsa and ChaCha. LOVING IT!!!  Not sure he is, but I sure am!!!  Its also very hard...who knew?  Dancing With The Stars makes it look so easy, plus I really had no expectations of lifts (ha!), handsprings (maybe) or being suspended from the ceiling.  How hard could it be?  Very hard.

I started this because I was in immediate danger of losing every ounce of healthy momentum I had gained while training for the triathlon.  Just in case I have not mentioned this before, and I know by looking at me, its hard to imagine, but I HATE exercising.  Never have, never will.  I experienced an endorphin induced high one time.  Once.  That is not motivation to give up other endorphin stimulating habits, ie; eating, drinking and lazing around.  But I had come too far to allow myself to lose too much ground and every person, book, magazine article, View episode and Oprah when I could afford to watch her, says in order to be consistent with exercise, pick something you love to do.  Do I need to state the obvious?  That is a very shallow pool of options.  I do, however, love to dance.  Love it, love it, love it.

So, I went across the street to Northshore Ballroom, (which immediately shut down two days after I signed up) had my introductory lesson and signed up for the package.  Vlad, my private,  Russian, ballroom dance teacher said I at least knew my right foot from my left...most of the time...so I figured, what the hell.  Although he was closing his studio, Vlad is still teaching out of a studio in Wilmette, so I was set.

So I have once again thrown myself into a situation where I have no experience, no knowledge and questionable potential.  Well, not entirely no experience...tap dancing lessons as a kid, a few high school musicals and I can move on the dance floor...all that clubbing that I do.  Plus, I have mastered the ability to dance without having to barely move my feet, so I never get out of breath.

Yeah, this, is not that.  Yet another leave your ego at the door less it be permanently squashed experience.  And the room is fully paneled in mirrors.  No matter where you look, there you are.  And I really don't have anything cute to wear to distract me from the 360 degree vision of myself dancing with my handsome, private, Russian, ballroom dancing teacher.  So I'm motivated to get in shape so I can buy some cute flouncy skirt and fishnet stockings like the other girls wear (I spy on their classes).

Also motivated to get in shape so I can just fucking DANCE.  You have to be in really good cardiovascular shape!  When I was training for the triathlon, I definitely improved my CV endurance, but speed was never the issue..  But you just can't salsa slowly.  It looks really stupid.  So does my teacher dragging my ass around because I'm about to pass out.

Apparently another key to successful dancing is using your "core".  I'm not exactly sure where or what my core is, but I'm pretty sure I haven't seen it in awhile.  Along with my clavicle.  I need a recognisance mission to find my core, clavicle and at least one hip bone.

 Just in case you are wondering, I AM doing the 2013 Chicago Triathlon.  Right after the one in August, the PR firm that covers the triathlon contacted me and said if I was going to do it again, they wanted to follow me and Patrick and help us raise more money!  Can't say no to that!

Another journey begins!

TEN THOUSAND, TWO HUNDRED AND FIFTEEN DOLLARS!!!

$10,215.

TEN THOUSAND, TWO HUNDRED AND FIFTEEN DOLLARS!!

GRAND TOTAL OF YOUR GENEROSITY!!

Every single one of you rocks!  Every single one of you is an angel! Every single one of you is a gift beyond description!  And together we are way bigger than the sum of our parts.

I've been waiting to post the final number of the fundraiser for Patrick, as checks continued to come in. But this is where we are at and we exceeded all of our expectations.  I've been part of a few grass root efforts for social change, all rewarding, but nothing like this.  This was money raised through word of mouth, Facebook and email.  I will never curse my computer again!

The donations received ranged from $15-$1000.00, with the majority being between $25-$100.  No publicity, no raffles or fancy dinners with free cocktails (not that there's anything wrong with any of those things!)  Just regular people responding to a need with money or time.  Its amazing and brings tears to my eyes as I write this post.

Patrick is doing great.  He just got back from Baltimore and is VERY close to having his trach removed.  He rocked Kennedy Kreiger (part of Johns Hopkins) and had everyone eating out of his hand.  AND, he actually admitted to missing me!  Once. And then immediately told me to put him in his stander.  I'll take it.

More good news.  I think I mentioned in an earlier post that the guys that announce the Triathlon are amazing and they were particularly kind to me, making a big deal over my finishing and making me feel like a million bucks.  I emailed them to thank them for making the day so special for me and sent them the link to our blog.  Well, both guys wrote back and had read some of the blog and were fascinated with Patrick's story.  They asked that if I do the triathlon next year, I let them know so they can follow us and really give a shout out!  THEN, I got an email from the PR group that covers the Chicago Triathlon and he asked me to definitely contact him ahead of time next year and he would cover Patrick's story and help us raise more money!  So.........

GAME ON!

CRUSHING IT IN 2013!!!

I'll keep you posted......

PATRICK SPEAKS (BLINKS)!!!

EVERYONE has been asking me, "What did Patrick say when you crossed the finish line"?

I finally have an answer!  I received a text from Patrick today reading, "I never thought you could do it.  Congratulations and thanks"!  I almost fell over.  This the Patrick equivalent of jumping up, hugging me, kissing me, renting a sky writer plane, taking out an ad in the paper.  He's  very understated..And I know he means that as a global thanks to all of you who have supported us and contributed!!  I do not have $$ totals yet, but should very soon and will let everyone know exactly how successful this journey has been.

Patrick was not able to be at the finish line because he is at Kennedy Kreiger Institute in Baltimore Maryland.  Everything his parents say about this place is amazing.  Constant positive attitude.  Innovative thinking.  They never say never.  Pat is well on his way to decannulation, which is the technical term for having his trach tube removed.  This place is expert at doing this and has had 100% success.

Patrick has felt for two years now, that his trach tube in unnecessary.  There are two camps of thought on this.  The more conservative camp is concerned for his safety and risk of choking if the trach is removed.  When we cough, the mucous we cough up, passes from our lungs, up the trachea and into our mouth where we spit it out or swallow it. (right now you are probably gagging...but its just the human body!).  You aren't even aware of this unless you have a bad cold or bronchitis.  When Patrick coughs, the mucous in his lungs comes out of his trach and is often suctioned out with a small tube.  Some folks are concerned that if the trach tube is out, we will not be able to reach his secretions and he may not be able to cough it up into his mouth.  And he could not choke.  Not good.

The other camp, headed by Patrick, believes that the trach itself is an irritant and creates mucous (true),  he would be better able to cough effectively without the tube and would be better able to swallow.  All true too.

But with the risk being choking, you can understand why some members of his medical team are hesitant to remove the tube.  But Patrick convinced me a long time ago he understands his body and I have learned to trust him.  This hospital has a great program with controlled protocols and if his trach is going to come out, this is the place.  So if you are praying people, believe in the power of nature, the stars, your own higher being...put in a few good thoughts for Pat.  He's very close to a huge milestone.

Patrick gets angry, but never overtly complains or feels sorry for himself.  One time, when I needed to go with him to an event that included many of his friends and former classmates, he was really pissed off I was going.  "No way"  "Do you seriously think you are coming" "No chance I am getting into the van with you".

When I asked him why he was so pissed off about me going with him, he said "do you think anyone else will have a nurse there"?

"Well if they are paralyzed, in a wheel chair and have a trach, they will".

He just looked at me.  He's usually not so adamant about wanting me to stay out of the picture.

"Just one more way you're different, bud"?

"Yeah".

I get it.  We all get it.  We want to pick the times when we stand out, as well as why we stand out.  Sometimes you just want to be part of the group.  I'm proud of what I have accomplished in my life, but  sometimes standing out because I'm fat isn't my first choice.  Most of the time I don't care, because its my truth and at my age I've had a lot of time to figure things out.  But sometimes I would just like to blend in.  Magnify that by a million and you have Patrick's situation.  Most of the time he could care less if you are staring, asking questions or ignoring him because you don't know what to say.  This is his truth now and he accepts it.  But he's 19 and sometimes he wants to blend in.

Getting this freakin trach out puts him one step closer.

YA BABY!! Day 148

 DONE. FINISHED. COMPLETE. FINITO

 I thought that perhaps my losing by blog into cyberspace last night was the universe's way of telling me to shut up and let the experience speak for itself...particularly since it is so hard for me to find the words to describe what the day of 8/26/12 or Day 148, was like.  So, as the saying goes...A picture is worth a 1000 words....

The horizon as the swim began.

My buddy Bill Nimrod and his wife Mary

caught me just I was starting the bike ride.

I thought I would have to walk my bike up

the first hill, but I didn't! Was able to ride up

the hill right out of the gate. My dad pushed me up the

other hills.

My friend Sue Leonis took this photo from

the North Ave bridge.  I was on my way to

Foster Ave.  The first 6.5 miles

6:15am Waiting to get in the water with buddy Courtney Callahan Loeb (waving).  This is

where the embarrassment began of being confused with Missy Franklin.  I did everything I could not to overshadow her.  She's so young to have her parade so heavily rained on.

The water was cold.  It was dark.  Could not see the finish line and my time would have been MUCH better if the lady next to me did not keep getting confused, turn on her back and start doing the back stroke IN THE WRONG DIRECTION!  I had to swim over and redirect her toward the finish line 3 times.  Seriously.

                           Now she got me waving back to her as I was heading  back to Randolph St, finishing up 13 miles.

                                                                                                            

The beginning of a very long walk.  
This was the part I dreaded.  I hate
walking. Its slow.  Its boring. And
I was a little tired.  I knew this would be 
my biggest challenge.

                                        My cheering squad.  Absolutely could not have done it with them and my   

                                                    Renee

My bud, Patrick.  He's what its all about.

   His mom, Colleen made this poster for me.

                       He still can't believe I did it. The night before he told me to get a DQ (disqualified) rather than suffer the embarrssment of a DNF (did not finish).  The little shit.

The best triathlon partner ever!!!! Stephanie, Patrick's PT

When they say it takes a village,

they aren't kidding.  This is the whole gang, friends, cousins, sister, brother, sister in law, niece, wife......the best and most loving support I could have imagined!

Patrick's mom, Colleen.  One hell of a woman and one hell of a mother.

Coming over the finish line.  I'm waving at the announcer because he's making a big deal over me.  People are so nice to you when you are fat!

This is a video that the professional photographers took as I crossed the finish line.  You can hear him saying my name and "Just Doing It".  It made me cry.

Worth every minute. Every tear. Every ache. Every minute of self doubt. Worth fighting not to give up when my Dad was dying. Worth continuing after a long 12 hr night shift.  After all this time, the concept of "worth" remains front and center.  I always knew Patrick was worth it.  I adore him.  What I learned is I am worth it too.

THE END
(not really, but it seemed like a fitting literary ending.  I'll be back!)