Wednesday, October 30, 2013

Before and.....WAIT! I'm Not Done Yet!

Before and After.   There's a deceptive magic in those three little words.   And I am realizing, they are words that have haunted me for a while.

Before.   In the health and fitness industry, before is the sad faced woman in an outfit a  size too small, wearing no makeup, and glaring at the camera.   Her hair is stringy, and usually in a ponytail.  She's clearly unhappy with where she is in her life.   She would never smile, and in fact, she might not even have the confidence to look directly into the camera. 

After, is the same woman with great posture, a tan, great lighting, and a great outfit.   She is smiling, no....BEAMING at the camera.   She has great makeup, and her hair is perfect.   The image is flawless.   She's achieved.   She's won.   Everyone can SEE how much better her life is now.   After.    It's a place you go win you succeed.  And to get there, you should really LOOK the part. 

This thinking makes me sad.  

Not for all those folks out there who are basking in their afters.   I applaud you.   I know you.   You have achieved some great results, and you SHOULD be proud.   Your hard work and dedication is visible to all who see you.   You should be happy.   you've earned that.  Please don't think I am trying to take that away from you.  

But for me, I see those shots, and I somehow feel like a huge part of the story is missing.   I know for me it would be.   Because, you see, I am not an "after" that would sell magazines, or product, or even workout services.   My "after" isn't bikini clad, or tan.   I have wrinkles and gray hair, and on the glossy pages of a magazine, I doubt that my photos would impress.   I look different, yes.   I've lost weight.   I am light years healthier.  But the "afters" I am most proud of aren't things you can see.  I don't just look different....I AM different.   

It feels sometimes that unless you physically fit the part, your success on your journey is somewhat invisible.  I realize that the physical change is what people want to see, but I have to fight my own thinking sometimes to remember that my changes are just as valuable.

The biggest changes I have made in my life aren't all things that can be seen with the naked eye.     I am stronger, both physically and mentally.   And if you look at me and don't believe it, I'll meet you at the gym tomorrow.   I am STRONG.   Just because my body isn't the public ideal, doesn't mean I haven't made great progress.

I eat healthily on a regular basis.  I have learned what my body can and can't handle digestively, and I have been working on embracing the changes.   I have mourned the loss of some foods I loved, and I have found many things I never knew I liked.  And to someone who has used food to cope with life for so many years, this is HUGE.

I have worked really hard to see my value regardless of weight or appearance.  And you know what?   Although I sometimes still struggle with this, I see more now than ever what my good qualities are, and they have nothing to do with my appearance. For truly the first time in a lot of years, I can see those parts of me, even if a scale has a higher number than I like.

I keep going.   Even when I am depressed, or sad, or frustrated with results....I keep going to the gym.   I keep seeing my trainer.   I keep working on myself.   I don't stop.   And for me, this one is probably the biggest success.  I have lived this life consistently for a long while now.   It's become part of who I am.    HUGE!

I work hard.   And I will continue to work hard.   No matter what my "after" may appear to be looking like.  I know that these changes have made me a better person, and a better work in progress.   

Don't get me wrong.   I would LOVE to be featured in a success story somewhere to inspire others.

But for now, my "after" doesn't look like that.   I get it.   It doesn't mean I can't try to get people to recognize that for everyone the journey is different, and the place they choose to find contentment is not all the same.  Just because my before and after photos might not show dramatic physical changes, if you stop and look closely in my eyes, you will see just as dramatic a transformation taking place.  And I work just as hard to get it. 

So "after" for all of us on this trek is different.   I wish we'd honor those less visible, but no less important, successes as well.

And I guess finally, I'm not sure "after" is a place I want to be content to sit.   My hope is that I will continue to be a work in progress until I take my final breath.   I want to continue to try to be the best person I can be and to improve upon the foundation I have laid out for myself.  Physically.  Emotionally.   Spiritually.

So maybe I'll start a new trend.   "Before and after" may become instead......"Before and where I sit now.....cuz I am still working."

Friday, September 20, 2013

For Andy....and Awareness

In recognition of Mitochondrial Disease Awareness Week, I wanted to share a little bit about Andy’s story.   Some of you have been around since the beginning of his story, some of you haven’t and only know him now.  Either way, he’s a fighter.   And we are ALL lucky to have him in our lives.

Andy was born July 8, 2004.   He was three weeks early, but still arrived weighing 7lb. 11oz. and 21 inches long!   We were induced, because my blood pressure was a mess, but all went well.   He was a beautiful little man.

All I can tell you though, is that from the beginning, I just KNEW something was not right.   Call it mother’s intuition, call it voodoo, call it whatever you like, but I knew.   He cried…ALL the time.   And I know what colic looks like, but this baby cried if he was awake.   He puked…EVERYTHING.   And from here, it progressed.

Within a few weeks, he was choking when he ate.   He aspirated.   He stopped breathing.    It’s hard to say this about your child, but he scared me.   He scared EVERYONE.   I have a dear friend who is a nurse of many years, and she was afraid to be left alone with him.  

Soon our pediatrician admitted him to the hospital.

While in the hospital, he was diagnosed with laryngomalacia and trachealmalacia.   This essentially means…he had a very floppy airway.   When he would take a normal breath, it sounded like a howl came from his throat.  Every.  Single.  Time.    It also caused him to have a hard time sucking, and therefore eating.   We were all a little scared of him.

During this stay in the hospital, he faced his first major surgery.   He had a supraglottoplasty to repair his throat.   He came through it like a champ, but it is something I care not to remember.   He had to be kept asleep for two days while his throat healed, and he was on a ventilator.   Sleeping in the PICU with my little man was a horrible experience.   But again…he came through.

We didn’t leave the hospital after surgery.    We spent another week and a half in there, because even though he had recovered from his surgery, he still couldn’t pass stool on his own, and he still had issues that the doctors couldn’t identify.   It was very hard to have all the top specialists at the hospital see your child and tell you they didn’t know what was wrong.   It was hard to have student doctors ask if they could take a picture of your child because they had never seen a child as hypotonic as he.   (low muscle tone…or as they put it….floppy.) 

We spent 18 days in the hospital that time.   And left with no answers, and a whole list of questions, and a BARRAGE of doctor appointments scheduled.  

In the coming weeks he saw neurologists, neurosurgeons, geneticists, cardiologists, gastroenterologists…the list went on and on.   He started on special prescription formula that was only available through the pharmacy.    And even though it was a prescription….insurance wouldn’t cover it because it was a nutritional supplement, not a drug.   He had special medications that we had to have compounded at the pediatric pharmacy.   It was a lot to keep track of, but we did it.

We had a nice home.   Jason makes a nice living.   And STILL we had trouble paying for all we owed.   It was a tough time.

Andy began receiving services from the state of Wisconsin’s Birth to Three Program.   He got in home PT and OT twice a week.   He wore therapy suits called theratogs.   He eventually had custom braces made for his lower legs and ankles to help him when he was learning to walk.

And through all of this….we knew very little.

Eventually his neurologist ordered a skin and muscle biopsy to be done for testing.   It was through this test that we discovered Andy had a mitochondrial disease.   The  fun in all of this is that it’s a very new diagnosis, and he couldn’t be specified as to what TYPE he had.  

We were told he may never walk.   He may never talk.   He will probably need a G-tube for feeding.   (a surgery I cancelled Against medical advice, and I am SO GLAD I did.)  We were told he may have mental challenges.   No one knew what his prognosis might be.

So we continued to advocate for him, and to search for answers.  We saw doctors in Chicago.   We saw a mitochondrial specialist at the Cleveland Clinic.   And every one said….he’s a really interesting case.   But no one had an answer.

When he was about 14 months old we went out to eat, he choked on a piece of popcorn, and aspirated it into the lower lobe of his left lung.   He had surgery to remove it 3 days later.   (see how it went?   EVERYTHING became a BIG DARN DEAL.)

When he was 18 months old, a routine MRI showed he had something called an Arnold Chiari brain malformation.   This means the back part of his brain is being pulled through the opening in his skull.   He had a big one.   Answers?   Maybe.   Doctors said it could be part of what has been going on with him, but we’ll just wait and see….but they wanted just ONE more MRI to see if his spinal cord was okay.

That MRI showed a tethered spinal cord.   WHAT???   So he had surgery to detether the cord.   It was after this surgery that one of the most scary events of my life happened, and one that magnifies how mito kids are different.   He came out of surgery great!   He was awake and alert….and they gave him some pain meds via his IV so he could rest.    These meds, which are given to kids ALL THE TIME, caused his respiration to slow, and he almost stopped breathing completely.    It is a surreal experience to see a scene from a hospital drama playing out on your own child.   He came through it.  And we learned another powerful lesson about our son…He is a fighter!

From then on, things got easier.   He has still been through a lot.   He’s had 3 surgeries on his eyes to straighten them so he doesn’t see double.   He has ended up in the hospital several times from simple strep to the flu.   Illness affects him differently.    He falls a lot, and has a clumsy way about him.   He is still followed by a team of doctors, although now not as often.   And he still has struggles.  

But he is good.   REALLY good.   And for THAT we are blessed.

Andy turned 9 this past July.   And every time his birthday comes, I think of the time when we wondered how many he would have.   And I look at him and I marvel at the fact that he walks, runs, jumps, swims, and plays.   He talks…a LOT, and he’s very intelligent.   He can run a computer better than I can.   He’s a great kid, and I think because of all he has overcome….he has a kindness in his heart that most people will never understand.

He may stand out a little bit.   He may be a little bit different, but he is one of the best, coolest, and most amazing kids I have ever known.  

So what am I trying to say about all this?   Andy has mitochondrial disease.   Without. A. Doubt.   But he is doing GREAT!   For our family right now, we are one of the lucky ones.   We have known others who have lost their children to this ugly disease.   And for us, the fear still comes because of the unknown.   There is no way to know how he will be affected in the future.   So we watch closely, we pay attention to things that others may not notice, and we continue to advocate for our son.  The fear is held at bay, but we are always vigilant about keeping him healthy.

I love you Andy!   More than you will EVER know!

So, if you want to know more about the disease that Andy fights, and our family had to learn about, please visit the links below.  

Read.   Learn.   And share.   

Tuesday, July 16, 2013

I'm thinking....

I need help with something. 

Why when something doesn’t go our way, or work in our favor do we immediately search for an inherent deficit in ourselves that is the reason?

Why do we do this to ourselves?

And I am not just talking about myself.   I am speaking about most women that I know.   I am speaking about my 11 year old daughter who is already blaming herself for things beyond her control.   I am talking about the beautiful friends I have who think that if they just change something in themselves, that bad things will cease to happen.  I am talking about women, men, and kids....

Why do we do this?   Why do I?   Why do you?

Wouldn’t it be freeing to just accept that sometimes things don’t work out in our favor.   This isn’t the universe working against us.   This isn’t because we are fat, or ugly, or thin, or stupid.   It just IS…what it IS.   Sometimes things will come in their own time, and sometimes they won't.   But it sure as hell isn't our fault all the time.  There are forces at work in this world that have NOTHING to do with us at all.

I am not saying that we shouldn’t work hard for things.   I am not suggesting that everything in life is fair.   And I am certainly NOT suggesting that we don't have a personal responsibility to do our best.   Self improvement is okay, but sometimes crappy stuff happens, and we have to figure out how to deal with it.  Sometimes life just happens and it has ABSOLUTELY NOTHING to do with how fat/thin/smart/stupid/blonde/brunette/tan/pale/tall/short  (you see where I'm going here?) we are...WE OURSELVES are not always the reason for all the things that don't go our way.  

I believe with all my heart that if we can find a way to deal with whatever stops us in our tracks,  WITHOUT tearing ourselves apart physically and mentally, we will be on the road to fixing this epidemic of self esteem that seems to plague almost everyone I know.  There HAS to be a way!

Just something I am trying to wrap my head around.   

Wednesday, June 26, 2013

Tonight I Choose to Shut the Door.

I preface this writing with a note for you….in case this is confusing in anyway.   Sometimes I talk about “parts” of myself like they are separate from me.   It makes it easier for me to separate from them, but could potentially make you think I have multiple personalities.  Ha!   Not the case…’s just a process for me.   So with that minor explanation….I will proceed.

I had a visitor tonight.   While I was beginning to pack up for my vacation in a few days, I realized that there had been someone banging on my mental door all day.   And once I realized who was there, I had a hard time telling her to leave. 

See, we are leaving in a few days for Hawaii.   If you know me, you know this is one of my favorite places on the face of the planet and when I am there, I reach a place of Zen.   It’s my happy place.   It’s a place where I just genuinely find my peace.   So all week, I have been excited to pack.   To get ready to go.  

And then today, I woke up with a nagging feeling of upset and sad.   I couldn’t figure it out.   I spent the day preparing things.   Doing laundry, packing, making lists.   Usually this type of planning brings great joy, because it is leading me to a place I love.   Today….not so much.

But I plugged on.   Doing what needed to be done.  And when I started trying to get my clothes together, it began to dawn on me.   I didn’t want to pack.   I didn’t want to put my clothing together.   Fat Tina had entered the house.  

Sometime earlier in the day, I had allowed her to step into my thinking.   She was there when I woke up and over the day, she worked her way into the back of my brain.   She began whispering quietly in my head and told me that I wasn’t deserving of this trip.   That I would stick out as the fat girl.   That I would never look good, or have fun, or be able to fit in.   She told me that because I am not perfect, because I hadn’t lived a “perfect” life, I don’t get to have this.

And I listened.

I tried on clothes I wore just a few days ago, and suddenly they were too tight.   I could see every bulge, every bump.   I made my husband look at every piece of clothing that I was trying, and give me an evaluation.  I tore my closet and drawers apart.   And then it hit me.

That bitch was back.  I had opened the door.   I had started listening.   And she jumped at the opportunity to slam me down.

So I stopped.   I put my clothes in my suitcase, and I shut it.   They will fit.   They will work.   And I will NOT let “her” steal my joy.    

So why today?   What allowed the door to crack open and let her in?  

They were stirred up by things in the news, things I had been reading, by a variety of things. It was my insecurities about being good enough.   That Same. Damned. Battle.

Until I am able to feel comfortable in my own skin, and truly accept, love, and forgive myself for who and where I am now, and more importantly where I have BEEN, she will always wait for opportunity to get to me.  

I wish I could tell you that tonight I had the magic bullet.   That tonight I have found self love and acceptance.   That I had miraculously forgiven myself of what I perceive as my “sins.”  I didn’t.   I still struggle with all of that.  I’m struggling with it as I write this blog.  I will probably struggle with it tomorrow as I continue my preparations because it’s hard for me to let go of the thoughts once they are in my head.   But what did happen tonight that is new and noteworthy, is that I managed to stop her before she completely shut me down.    I was able to recognize what was happening and at least step away.

So as I sit here in this new place, my head isn’t quiet of the thoughts she planted, but it’s clear enough to realize that they have no place in my world, and that I am working to put them to bed.   I have a great trip coming up, and I intend to enjoy it.

I am deserving.   I am worthy.   No one will stare.   I will be fine.   And I’m shutting the door in her face tonight.   And that is a powerful thing.