To the Middle School Girls Who Doubt My Daughter…

July 20, 2015

To the Midle School Girls who doubt my daughter’s medical conditons:

I want to start by telling you, I know it’s not your fault.  You are generally healthy.  You were raised by people who are generally healthy.  You get sick.   It gets better.  You want your share of attention.  You resent that sometimes my daughter needs a little extra help in the halls.  It’s not fair that sometimes she needs to sit out of Physical Education.  You are tired too, right?  It doesn’t seem fair that she needs to leave early from the class right before lunch.  You’d like to stretch your legs too.  Why does she “get” to being her own food everywhere?  And is she really “allergic” to all those foods?  Because she doesn’t seem “allergic,” and why does her food wrapper say “milk” when she’s “allergic to milk?  She must be lying, right? Looking for attention again?  Why does she get to leave early so often?  You’d like to get out of last period too.  I get it.  I understand.  You look at people who look sick, and you are probably really compassionate.  Except now that you’re older, it’s time for me to let you in on a well kept secret.

Not everyone who IS sick, LOOKS sick.

Take a moment and process that.

Now I’d like to tell you a little about my daughter.  The real Meghan.  Not the one you always see, but the one I see.  The one who I have kissed before 13 surgeries, as she left me for the operating room.  The one I have slept beside for nights on end as she gets poked and prodded in hospital after hospital.  The one who has shed tears of pure frustration and anger over the things that have been restricted from her life.  The one who longs for you to understand, but will not talk about it in depth, for fear that she will isolate you, or worse, that you really won’t care at all.

Let me tell you about the Meghan who knows your problems.  The one who genuinely hopes you, and your head cold, stomach virus, sick grandmother, and hurt ankle are all ok.  The one who understands deeply your anxiety about getting a blood test.  The one who “gets it” on levels you’ll never understand.

Let’s talk about the paraprofessional.  While she has been blessed with the classiest, most professional women through the years, do you think for a moment she WANTS to need help?  Do you think she WANTS an adult escorting her through the halls?  Think about that for a minute.  She doesn’t WANT to be different.  Six knee surgeries, and a Rare Disease diagnosis have taken that option from her.

And about the trips to the nurse.  Any idea how annoying it must be to have to detour to a nurse to hand you medication before you can eat anything at all?  Any idea what it is like to never be spontaneous about just grabbing a bite of something?  Because your body simply doesn’t make the enzymes it needs to digest food without help.

Please don’t even get me started on the cafeteria.  In our house her Dad is a masterful cook, who makes eating gluten, dairy and soy free taste fabulous.  But, out of the house?  Not so easy.  You want to know about her allergies?  About how she can be “allergic” to milk and eat a product that contains milk?  I get your confusion.  But, here’s a tip; when you are confused, ASK, don’t assume.  She’ll probably willingly share the reasons with you if you are actually interested.

She spent a large part of her very young years vomiting a lot.  Sometimes so much that she ended up in the hospital.  Her stomach hurt all the time, and she even had to have her gall bladder taken out when she was 3.  She had ear infections all the time and her head was full of fluid.  She didn’t talk much, (I know – hard to believe) because her head was clogged up.  She cried because she hurt so badly.  She was allergy tested for lots of things.   Nothing came up.  Nothing at all.  Then I used my brain.  And my instincts.  And we targeted some foods.

And do you know what we learned?  We learned that without milk, she doesn’t get ear infections.  And she learned how to talk right away.  And her head stopped being so full all the time.  And she could rest.

Then I kept looking.  And I learned that soy, in its purest form, caused a rash all over her body.

And when I took out gluten, slowly her joints began to ache less and less, and I was able to decrease the medication she needed just to walk up the steps onto the school bus.

Are they “allergies” in a technical sense?  No, I guess not. But, they are just as important.  I am forever grateful that she doesn’t carry the danger of anaphylactic shock, but she does have the ability to end up in the hospital from dehydration after vomiting for days when she eats certain foods.  Even strawberries.  Or anything with seeds.  Or anything too greasy.  Or cross contaminated.  (Like last year in DISNEYWORLD when we needed a doctor after a FULL day in the hotel vomiting.)

So the meal bars she eats at lunch, yes they say, “conatins milk.”  But, you know what?  They agree with her.  She doesn’t love them, but she eats them for NUTRITION, so she can function through the day.  The “milk” in there is primarily undenatured WHEY protein from NEW ZEALAND where the cows are GRASS FED and roam free.

Why would she be anything less than honest about not being allowed to have regular milk products?  Do you know she has never had ice cream from the ice cream man?  I have to send her own pizza and chips and cake to parties.  Do you think she doesn’t want the donuts and cookies, and hot pretzels in the cafeteria or at fairs?  Does that really make any sense?  Ask yourself of all the things to be less than truthful about, does that even enter into logic?

And about physical education.  Let’s talk about my daughter trapped in a body that likes to betray the athlete inside of her.  Let’s talk about the young lady who can run like the wind, but might trigger a bleed of the vascular malformation in her knee, and at the very least will pay in excrutiating pain.  The girl who wants to play longer and harder than any of you, but can’t.  The child who craves the idea of just coming in in a gym uniform and competing, for better or for worse, all the time.  But, she can’t.  Because the surgeon said not yet.  And even when she’s able to join in, it will likely be on a restricted basis.  Let’s talk about the girl who won’t run Main Street in Disney because she will have to navigate the parks confined to a wheelchair.  Walking more than about 1/2 mile consecutively is too stressful on the knee.

Oh, and the tired.  Yep, you are tired too.  I get it.  You were up late last night.  Probably watching a movie, or doing something fun.  So you are tired. But, she went to bed at a decent hour.  Hers is a different tired.  Hers is the tired that comes from a body that refuses to accept the synthetic thyroid hormones as normal.  Hers is from a body that makes a hobby out of defying her.  You’re both tired.  But, it’s not the same.  Trust me.

This is the girl who stays on stage during drama even if it kills her.  Even if the pain is at its greatest intesity, because no one has restricted her there, yet.

This is a girl who gets to swim practice as consistently as she can, so that she can feel, “normal,” while she pushes through the water.  This girl has to go to PT 2x a week just to get into the pool.  This is the girl who overcame emergency surgery in November of last year for a bleed in her knee to qualify for Silver Championships 2 months later on raw nerve.  This is the girl who took less than 2 weeks off from swimming after her knee surgery in May.  Because she WANTS to play.

And all those times I pick her up early.  It’s not for a manicure/pedicure.  Turst me.  See, Meghan has a rare disease called Cowden’s Syndrome.  She’d be happy to tell you more about it.  She got it from me.  It causes non-cancerous, and cancerous growths to grow all over the body.  She’s been lucky so far, and even though it was a close call when they removed her whole thyroid last February, she is to date a “previvor,” (one who has surgery to remove genetic cancer risks.)  But, there is a doctor, and often a surgeon, for just about every body part.  There are MRIs and scans, and hours travleing to Manhattan.  No, not to museums, but to NYU, Sloan Kettering, Lenox Hill, and St. Luke’s Roosevelt.  We do the hospital tour.  The average round trip is 4 hours, usually after a long day of school.

This is a girl who has watched her mother undergo surgeries she shouldn’t have to think about yet.  This girl has had her mother diagnosed with cancer when she was in 3rd grade.  This girl has the same genetic condition as her mother, and the same cancer risks.  Some days she has a lot on her mind.

Meghan is not perfect.  I know this, and so does she.  And if you have a problem, talk it out.  Sometimes you’ll be right, and sometimes she will be.

Just don’t assume things.  There’s a saying about that… and it’s all true.

You see invisible illnesses, like Cowden’s Syndrome are very, very real.

Meghan is only one of MANY people you will meet in your life who “don’t LOOK sick.”  They would ALL benefit from your compassion.

Constant doctors appointments, scans, and blood tests, are not where we want to spend such a giant chunk of our lives.

Food allergies is a term we use to protect her from ignorant or uneducated people who think sensitivities and intolerances are not serious.  Forgive me the word adjustment.  It’s necessary to ensure her safety.

You see the hardest part about all this for me, is not being able to give you this speech in person.  For the last 12 years I have been her voice, her mouth, her protector.  Now, on top of everything else she has to handle, she has to find her own way of speaking about all of this.  She has to find her own comfort zone.

And I have to watch.

My confidence in with my daughter.  She will pick the right friends.  She will speak up at the right times.  She will learn all about herself.  She will become her own best advocate, to you and to the world.

And once she has figured all that out, you’ll realize she’s a pretty fun kid to have around.

Don’t worry, she’ll pack her own snacks.

Sincerely,

Meghan’s Mom

IMG_4684

“I Am From” – Guest Blogger Meghan

I Am From

by Meghan

I am from Love

I am from mutts barking at night

I am from swims in the backyard pool

I am from hospitals and procedures

I am from suffering

I am from anticipation of how my life will survive

I am from anguish after surgery

I am from crying in the hospital at night

I am from fear of not being strong enough

 take pride in your pain

I am from doctors saying this cannot be

I am from hearing that I am unusual

I am from paralyzing fear of iv’s and needles

I am from being cast out for my pain

I am from fear of not surviving from the pain

 Just-Tired

I am from baby blue walls

I am from a home that cares for me

I am from a room of toys so big it’s like a store

I am from a home with clouds as chairs

I am from a home like a chocolate bakery

I am from the calming smell of Yankee candles

I am from the smell of brand new books

I am from the pool

I am from the thrill of swimming

I am from competition

I am from Wagner Aquatics and CSI

I am from the relief that comes with butterfly

keep-calm-and-swim-butterfly

I am Lori

And Felix

I am from Barbra

And Leon

I am from the Ortegas

And I am from the Thompsons

I am from many beliefs

I am from hurt and hatred

And I am from love and compassion

I am from different weather each day

I am from winter devouring sweet spring

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I am from Christmas trees going up after Thanksgiving

I am from a special Thanksgiving meal the day after

I am from August Disney trips

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 I am from spices

I am from cookies and cake

I am from avocado

I am from Isagenix

avocado

isagenix shake

I am from playing with my first dog Lucky

I am from meeting my second dog, Allie at pet smart

 allie14

I am from church at Zion and Castleton Hill

I am from the beliefs that Jesus will rise again

I am from running up to the pulpit with Lucky in tow

I am from Gandhi’s “Be the change you wish to see in the world”

be the change

I am from adventure and fantasy filled books

I am from Rick Riordan and J.K Rowling

I am from action figures and comics

I am from DC universe

I am from Wonder Woman

I am from He-Man

I am from Batman and Superman

I am from the sidekicks

I am from X-Box 360 and video games

I am from mythology

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I am from the LOVE of my family

BEATING COWDENS!

Finding my “Happy Thought”

It was a few months ago.  I can’t quite recall the date.  It wasn’t my finest hour. (or day, or days…)

I was grumpy.  Worried.  Angry about the struggles my girl was being forced to endure.  Twisted about a future of doctors appointments and surgeries.

I had noticed she seemed extra down, and I took it as my cue to worry harder.

At some point, I broke down, expecting a clear answer to the question, “What’s wrong?” so I could continue the business of worrying some more, and searching for answers.

But the answer wasn’t even close to what I expected.

“Mom, you need to find a “Happy Thought” because you being like this all the time is really affecting me.”

Neverland happy thoughts

Um, ouch.  Wow.  And she sure told me.

She wasn’t being disrespectful in the least.  We have worked on honest speech and clear language, for survival – and to help us prep for the teen years.  She was doing exactly what I asked of her.  She was telling me what she was thinking.  And she was right.

Years of parenting a chronically ill and allergic child have left me in a permanent hyper-vigilant state.  The “other shoe”  has been known to drop without warning, and there is a constant need to search, study, learn, and discover whatever I can about whatever is plaguing my girl.  I am her advocate.  I am her voice.  We have between us undergone at least 17 surgeries in the last 11 years.  That doesn’t include countless hospital stays, tests and procedures.  There is always a pile to contend with, whether its bills to fight or file, prescriptions to order, reports to hunt down or appointments to make.  Life is very busy.

Neverland-HOOK

There was a time I used to walk for fun.  Hours on end with my music in my ears.  I would walk for miles.  I would walk everywhere.  There was a time I would read for fun.  Not medical books.  Just leisurely reading.  I used to watch “Law and Order.”

Now between working full-time, parenting full-time, chauffeuring to appointments, trying to make swim practice, keeping food in the house, keeping some semblance of order, including clean laundry, clean curtains, and clean cabinets – it was easy to get swallowed up by obligation and forget the joy in my life.

To be quite honest with you, there isn’t much I would change.  Do I sometimes miss those long carefree walks?  Definitely.  But, would I for one second trade one bit of my beautiful, tenacious, funny, stubborn, intelligent little girl?  Not a chance.

Hook movie

We watched “Hook” a few months back.  It was a rare occasion when I sat to watch a movie.  It is one of my favorites.  And for those of you who might not be familiar, it’s a “Peter Pan” spin off where Peter ended up all grown up – a lawyer.  He forgot his magical youth, and the story takes him back to Neverland to find it again.

I am sure this is where she got her admonition for me to find my “happy thought,” as Peter needed his to remember how to fly in order to beat Captain Hook.

I thought and I thought, long after she had said the words.  I was tempted to compare myself to other adults, and justify my grumpiness.  But I resisted the urge.  These words weren’t spoken to another adult.  They were spoken to me.  And what a gift she had given me.

peter-pan-best-quotes-sayings-faith-trust-good

Transformations don’t happen over night, but I have forced myself to become aware of the things that give me pleasure.

I love to write.  And so I have been trying to give more attention to my blog.  Therapy on a keyboard.

I have taken my feet instead of the car wherever I can, and wherever time allows.  I can’t walk for hours, but I can appreciate the short walks and relish them more.

I am realizing that a happy Mom is some of the best help I can give.  I won’t know all the answers.  I can only give her the same honesty I ask of her, and I can only do my best.

And while we focus on being positive, and its something I ask of her all the time – it’s not fair to ask it and not model it.

So we are all a work in progress.

And when I really soul search for what makes me happy, my pleasure really lies in seeing other people happy.

My other passion, my other therapy, is my Isagenix.  I fell into this company 2 years ago when my husband was in need of fast, significant weight loss.  For a year I bought products for him diligently.  He maintained the 50 pound weight loss he attained in the first 3 months, and now, 2 years later is working on “the last 20.”

www.meghanleigh8903.isagenix.com
http://www.meghanleigh8903.isagenix.com

 

I watched him for the first time in our marriage lose weight to keep it off.  I watched him gain energy, and generally feel better.

And I did what any Mom would do.  I researched – for Meghan.

And as I read and read and looked at articles, and the science behind the program, I heard the familiar musings that my trusted alternative medicine doctor had been sharing with us for years.  The same ones that helped us transform Meghan from “sickly” to chronically ill.  Several major steps up.  Trust me.

And I started to give my girl shakes full of protein, and nutrients, and she felt better, and better.  And soon she was asking me for more.  Brain food.

But it wasn’t until May of last year, a full 11 months after I had been giving the products to the two people I love most in the whole world, that people started asking me.  And then I couldn’t stop talking about the amazing things I had seen in my house.  And soon I had 5 friends all feeling great as well.  I was giddy.

I was now making money for helping people eat well.  Amazing to me.  I started to attend training, and listen in on conference calls.  I was no longer scared of “Multi-Level Marketing.”  I became educated about the systems and the generous compensation.

And one day, as my family sometimes does, I got called out again.  This time it was my husband.

I had lost a lot of weight – mostly due to stress.  I had dropped several sizes and was scrounging for clothes.  “YOU look sick,” my husband said.  “Drink a shake.”  And I did.

www.meghanleigh8903.isagenix.com

And it all came together for me.  I am down another size since then.  I have begun walking more.  I weigh what I weighed junior year of High School and I don’t intend to ever look back.  I am able to endure more stress, with greater ease.  I have stopped all diet soda.  I drink green tea and water.  I don’t snack much.  I eat better than I ever have in my life, and it’s easier than ever before.  The nutrients I get between that AM shake and my lunch time bar are more than I was getting in days with my old lifestyle.

I get happy when other people are happy.  I get pleasure watching as people remember what it’s like to feel good again.  I enjoy sharing stories, and telling people about a company that I feel strongly “got it all right.”  And they pay me too!

I am constantly telling Meghan that Cowden’s Syndrome does not define us.  But, in fairness, actions speak louder than words.

It’s been months since I was told to find my “Happy Thought,” and I hope I never forget that day.  While we still have our ups and downs it serves as a reminder for me that I am no good to those I love unless I find happiness myself.

Meghan and Felix – they will always be my happiest thoughts.

But I love my family, and God, and exercise, and nutrition, and cool breezes and music, and flying birds, and summer…

I strongly encourage you to find your “Happy Thought.”  It’s tough to start looking when a 10-year-old calls you out.

Loving my heart - outside my body- my biggest happy thought.
Loving my heart – outside my body- my biggest happy thought.

“Dear whatever doesn’t kill me, I’m strong enough now. Thanks.”

I needed today.  For so many reasons.

Even thought Meghan had 2 appointments today – 11:15 and 12 – it was a good day.

We all slept.  Late.  All three of us.  I mean 10:00.  A good sign that we – all three- are shot.

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I mean, not a whole lot changed from yesterday, in that it took a full 10 minutes before Meghan’s pain subsided enough for her to walk.  And she was sensitive to the touch, so it was even hard to rub her.  But everything is a little better at 10 AM.

And there was the Isagenix shake – blessed by her GI doctor, back in the mix made with blueberry and coconut milk – that went down smoothly as she took the new regimen of pills.  I finally have a doctor who understands quality nutrition, and who “gets” that you can be sensitive to one type of milk protein and not another.

meghanleigh8903.isagenix.com
meghanleigh8903.isagenix.com

And after the appointments, even though I got the frustrating news that the “it’s broken, it’s fixed, it’s broken, it’s fixed” 1996 Saturn has likely advanced to “deal with it – it’s done” status, it was still OK.

Because we got home, and then Felix made lunch.  I stayed home with Meghan and her “better but not gone” stomach pain.

After that he took the working car to get the wood for the deck railing that has completely rotted out.

No one can really explain that – but we are kind of used to it.

The deck – pressure treated wood – was put together between 2000 and 2004.  By all accounts it is falling apart.  And its not from faulty construction.  The base is solid.  The center is stable.  But the galvanized screws are literally wasting away – and the wood, especially the rails, is rotting.  Maybe it’s too much sun.  Maybe it’s a stain product we used early in its life.  It really doesn’t matter.  It’s done and has to go on the budget list for a full replacement in the near future.  But for now we patch.

Triage.

triage

The bay window wins.  Installed in November of 2000 – on my birthday to be exact- the lower left corner of the center window has rotted out completely.  The entire window – hole in the house and all – needs to be replaced.

So while Felix was getting the wood, he priced the window  Tonight we have to do some comparison work.  Then the order has to go in.

But this afternoon I sat still.  For a few hours.  And I really, really, really liked it.

It’s easy to feel guilty.  That there are things that need doing.  There are people who could use our help.  And there are people who need to be visited.  And there are phone calls that need to be made.  But, last week my Mom told me if I didn’t take some time for myself I might lose my mind.  She’s right.  Although I could say the same to her, and most people I know.  It’s hard for any of us to just stop and sit still.

I haven’t written since Monday.  The arrogance I encountered that day kept me stewing for most of the week.  And… I don’t think I’m over it yet.  But I wanted to pull my thoughts together and go at it with a clear head.  But if I keep waiting for a clear head I may have to stop writing forever.  Because the pain my child endures – regularly- is horrendous and worsening.

If the purpose of this blog is to create a chronology of our experience with Cowden’s Syndrome – then it all has to be shared.  The good, the bad, and the arrogant.

A friend who endures more than her share of struggles with her children placed this on my wall this week.  I can’t tell you how many times I laughed out loud.

what doesnt kill me

 

Tuesday I called the surgeon’s office after school to inquire about the sonogram.  He spoke to me – to tell me that there is absolutely nothing wrong with her neck.

Insert sigh of relief here, right?

So I said thank you, and requested a copy of the report.  It was to be emailed to me within 10 minutes.

And while I was processing the conversation I had with the surgeon, I was contemplating what I would see on the report.  You see, the local sonogram bothered the surgeon.  So when we went to have it done I watched the screen like the hawk I am.  I watched every measurement, every angle for 30 minutes.  I SAW the exact dimensions from the local sonogram recorded.  And yet the report was the most incomplete one I have ever seen.  It simply said “normal” several times.  It was contained on one sheet of paper, unlike the three I had become used to.

I wanted to be relieved so badly.  I wanted to take a breath and say “whew!”

But I feel the lump in her neck.  And she feels it.

What I needed was a doctor to say, “It’s there and it’s fine.”  THAT would have been OK.  THAT would have settled me down.  But, to say it’s NOT there….  THAT leaves me with a whole other set of unsettled nerves.

And then the phone rang.  Again.  And it was the surgeon’s office.  His secretary told me we needed to go back for a follow up.  I was stunned.  And perplexed.

Why a follow up?  He just told me everything was fine!

The doctor just wants to see her one more time before the summer.

This from the same surgeon who three visits ago NEVER wanted to see us again.

So I set the appointment for June 16th.  And I wondered really what I am supposed to think.

So I got the number for medical records and I got a CD of that exam placed on CD.

I’ll bring the CD with us for the endocrine consult at ANOTHER hospital on June 12th.

And this isn’t even the pressing problem right now.  Or at least we don’t think so.

The next set of thyroid labs are going to be next week.  We need to see if this new dose is making ANY difference in her thyroid hormone.  If it is, well great.  And if it isn’t… someone needs to start figuring out what’s going on.

There is pain.  All the time.  Terrible pain.  Worse when she wakes up.  And, when she tries to walk, up the stairs.  Or down.  Or if she tries to lift something.  Or bend to pet the dogs.  Or run.  She made it through 18 minutes of swim practice on Weds.  Then I had to help her get dressed.

The pain varies in intensity.  But it doesn’t leave.  And she is frustrated.  And frightened.

Holding my head in her hands, looking me right in the eye, I received the admonishment a few days ago, “I am telling you I can not do this forever.  I can handle this pain a bit longer, but you NEED to help me.  I CAN NOT do this forever.”

worried mom - FBI

No pressure.

I get it Meg.  I get it.  I don’t really get your pain.  But I get the urgency.  I am all over it.  Trust me.

But that kind of pressure will wipe you out.

The GI on Weds. was happy with her progress.   The pathology showed cellular changes all through the GI tract.  She told us of the spot in the stomach she chose not to biopsy because it bled as the scope passed over it.  She gave us the “reflux” diet.  She reviewed medication and supplements.  She made sure I have an ENT appointment – for June 3rd.  She things the upper esophageal damage is caused by a chronic post nasal drip.  And maybe “fingers crossed,” that will be the throat clearing too.  Because if not there is another diet – with more restrictions on the horizon.  But we can’t race.  We will see her in the beginning of July.  We are clear on the directions.  Especially the one that said, “no pain medicine by mouth.”  The damage done by 4 years of NSAIDs will take months to reverse.  If we are lucky.  Her Cowden’s Syndrome cellular overgrowth reacted to the insult by thickening the esophagus at spots, inflaming the stomach and causing a real mess.

That doesn’t leave a whole lot of options.

So from 200mg a day of a strong NSAID to nothing…

celebrex100mg

I ordered some herbs.  Some that have anti inflammatory properties.  I have read and researched them and have sold them to her as the best thing since Celebrex.  They will be here tomorrow.  Let’s all pray I am right.

Some people think she exaggerates, because there are glimmers of smiles.  There are times when she laughs.  There are people who want her to feel better just because time has passed.  Trust me no one wants this more than her parents.

I would not trade her – or a moment of the last almost 11 years, but this constant struggle is wearing on us all.  We are isolated.  Family and friends alike are often unaware of what to say, or do.  We are afraid to eat anywhere other than home, afraid to be too far away in case her stomach hurts, afraid to be away from home for too long because the pain is often too much to bear.  We are lucky, fortunate, blessed, to have each other.  We are acutely aware of the struggles of so many, and we know we are far from alone when we say we are exhausted.

I needed today.  I did random things like taking the 5 gigs of pictures and video off the iPhone.  I uploaded them to shutterfly.  I combined them with the family photos and I placed the first print order since August of 2012.  We are up to August of 2013 now.  You see I used to be all over this kind of thing.  But life… it gets in the way.

And the nicest part about today was looking at the memories.  The smiles.  The happy times in those photos.  You see today I needed to be reminded…

And that is what today was about.

Because next week there is Field Day, with prayers that there can be mobility by then.  And next week there is blood work.  And next week there is swim practice, and so many things that we want to go very, very well.

Today, I needed today.

 

 

Getting out of my own way…

I am actively, consciously, deliberately, trying to get out of my own way.

get-out-of-your-own-way

I have hopes, goals, dreams, aspirations.  I love my daughter, my husband and God and my family and friends.

I want to be stellar mom, an outstanding wife, and a good friend.

I want to be a Christian woman who leads by example.

I want to shout from the mountaintops about the organic superfood changing lives in my house, and giving us energy and clarity of mind we never thought possible.

I want to teach people about health and wealth and how they can go hand in hand.

But I am stuck.

Right in the middle of my own way.

there-are-plenty-of-difficult-obstacles-in-your-path

We had Meghan to the neurologist today.  We left Staten Island at 1:45 and traveled the approximately 17 miles to the appointment in Manhattan.  It took an hour and a half.  I just about worked myself into a migraine on the way.

Manhattan-Traffic-Facts

But, fortunately, the torturous migraines of the fall are a memory.  Controlled by a medication I would rather her not take.  Today we got a dose increase, and something  to help her sleep.  It should be noted the ONLY side effect the neurologist would even discuss from the medication was drowsiness.  HA!  Not here.  There’s my Meg… doing it her own way.

This was an easy appointment.  We were home by 5:30 although wiped out by the journey – all of us.  The follow-up is in a few months, the new script is in hand.

They are asleep.

I am sitting at the computer.  Thinking.  Researching.  Typing.  Organizing. Planning.  Attacking everything.  Accomplishing – not so much.

Today I called to reschedule the thyroid surgical consultation.  Suddenly 5 weeks seems like a really long time.  The tickle in the throat is troublesome.  It turns into coughing when she gets nervous, and is only pacified into a tickle by the boxes of cough drops on my counter.  I try to ignore the reality that we both know exists.  I try to tell her it’s no big deal, and to casually ask her to show me where it bothers her.

cold eeze

“It’s not sore till I cough.  It just feels weird – right here.”

And there on the right side of the thyroid is what has begun to feel like a small stone.  I try not to let my imagination get the best of me as I picture it pushing on her windpipe.

“It’s fine,” I tell her.  “We’ll just get the doctor to take a quick look.”

She’s not dumb.  Not by any means.  And that is a good deal of the problem.  Gone are the days when I could lie through my teeth and protect her from the evils of Cowden’s Syndrome – lurking behind each corner, hiding under the bed, and in the closet.  Now the monster is real.  And it gives real life nightmares.

monster-under-bed

So in 2 weeks, on February 6th we will head to Sloan Kettering to meet the pediatric surgeon.  No one can be sure what he will say.  And I am not sure there is a statement he will make that will soothe me or make me happy.

And the waiting game continues.  One appointment down.  Two weeks till the next.  Then on the 11th I have 3 and she has one.  I still haven’t figured if its better to consolidate or spread them out.  They just keep coming.  One after another…

“Beatingcowdens” will suck out your energy if you let it.

But I won’t.  That’s why I have gotten so involved in this superfood, and this fabulous company called Isagenix.  Recently they named their 100th millionaire.  A school guidance counselor from NJ with no network marketing experience.  We three start every day with our shakes.  We use the snacks and the meal bars, and the tea, and tonight they both took the melatonin spray to sleep.  We are feeling better and better.  So in the time I have at night, I listen to podcasts, I learn all I can.  And I try to share with my family and friends that I am finally not that sickly little girl they knew.  I try to share with them the health and wellness opportunities, and the vision for financial freedom.  I am here.  I am ready.  If they will listen.

meghanleigh8903.isagenix.com
meghanleigh8903.isagenix.com

And its a good thing I am a master at multitasking, because there are lesson plans to write – for a subject I love across a LOT of grades.  Trying every moment to be the best I can be.

As I sort through the last boxes from Dad’s apartment.  And I laugh, and I smile, and I cry.  As I make binders of beautiful 8×10 prints I found everywhere.  As I sort through the photos on CD and prepare hard drives for my brother and sister.  And I chuckle at the bills that come in, and I make contact with the members of his platoon in Vietnam, and his old friends – one at a time. Unearthing buried treasure from a man I loved dearly.  Not a saint, but who is?  And so much wiser than any of us really gave him credit for.

And I make list after list of the things I need to do.  In the house, in life, on the computer… Supplements to order, new pants for my growing girl, laundry, and a haircut, and all sorts of other random yet necessary things.

I think about my friends who I love.  The ones I never call, or barely talk to.  The ones who I text instead of calling or visiting.  I think of how busy our lives are… and for what?

Rare Disease Day is coming.  February 28th.  Our school is celebrating.  Meghan is thrilled.  There will be Tshirt sales, and a movie night, and proceeds to the “Global Genes Project.”  It gives purpose.  Hope.  A distraction.

Rare_Disease_Day_Logo_2011-1024x968 2

Somewhere in the midst of all this I have to stop and wonder.  How do people do it?

Our lives have their own brand of busy – a medical type – which may be different than that of my friends, but it bears similarities.  Over run.  Overworked.  Exhausted.  Worried.

How do they get out of their own way?  How do they manage to keep the balance of friendships and “play dates” for adults and kids?  How do they get the laundry and the grocery shopping done, and still find time to play?

I think I am a pretty organized Mom.  But yet – I need to use my time better.  I won’t part with my writing.  That’s therapy for me.

I’ve minimized the clutter in my house (just don’t look in the closets.)  Now its time to minimize the clutter in my head.

Cowden’s Syndrome Awareness

This card was created out of her need to "teach" others about Cowden's Syndrome.
This card was created out of her need to “teach” others about Cowden’s Syndrome.

Rare Disease Day

Doctors, surgery?

Isagenix – health and wealth

Reconnecting with old friends

Making the time to exercise… cause I like it.

FOCUS

Now if you’ll excuse me… I have to find my way out of this maze…

I’ve got work to do!

want-to-inspire-ppl

STUPID CANCER show!

I am absolutely high on adrenaline right now…

In August the husband of a friend from High School asked me to be on “The Stupid Cancer Show.”

https://www.facebook.com/stupidcancer

stupidcancershow

I said yes, not quite sure exactly what would be involved, but knowing that it was a rare opportunity to speak to Cowden’s Syndrome awareness.

Tonight was the night.

What an amazing show.  I am so glad to be familiar with it now, and you should check it out!

Somehow the words came pouring out.  It’s amazing what speaking from the heart can do.  I can only hope that someone tonight knows what they didn’t know before.

I find there to be no coincidences in life.

After my segment in the “Survivor Spotlight,” the show focused on toxicity and cancer.  Well even though I just listened in to THAT part of the show, I was so in tune to what they were saying.

http://www.blogtalkradio.com/stupidcancershow/2013/10/22/stupid-environment

(My part of the show starts at about 11 minutes, and ends around 30 – I talk too much!  But I managed to mention my friends at Life with Cowden’s, PTEN world, and The Global Genes Project!)

Near as I can figure these days, breathing increases your cancer risk.  But, taking crappy care of your body, eating junky food, and generally being careless, puts you at a greater risk than if you are careful.

There is nothing we can do, especially those of us with genetic predispositions to cancer, to fully protect us.  But we can do what we can to help.

There is no guarantee I won’t get hit by a car, but if I stand in the middle of the street I greatly increase my chances.

People ask why we devote so much of our time, energy and budget into healthy food.

Genetics are not on our side.  But we can fill our bodies with healthy, pure, organic superfood.

These days the core of the nutrition in our home comes from Isagenix.  It does not claim to prevent, treat or cure any disease, but If you haven’t looked yet – now is a good time.

www.meghanleigh8903.isagenix.com
http://www.meghanleigh8903.isagenix.com

This company provides quality food, and they make it possible for you to afford it, because you can eat your Isagenix for free.

“You plus two, them plus two.”

you plus two

Well worth my initial investment.  Quality nutrition for my entire family.

We are certainly going to do the best we can at all times.

Our health, no guarantee.  But we are going to do the best we can to keep that “STUPID CANCER” away.

Catch-22

catch-22 is a paradoxical situation from which an individual cannot escape because of contradictory rules.[1][2] Catch-22s often result from rules, regulations, or procedures that an individual is subject to but has no control over. 

-Wikipedia

 toxicworld

You know a person could go crazy trying to keep themselves free from toxins.  These days it seems to be an all consuming, and virtually impossible task.  Sometimes I wish I knew a lot less.  Sometimes maybe ignorance is bliss.  And cheaper.  And a LOT less stressful.

But then again, I think my girl would be a whole lot worse off.  And therein lies the “Catch-22.”

Meghan has been seen by a “biomedical specialist,” (insert voodoo, witchcraft, flawed medicine – whatever makes you happy) since she was about 2.

Back in the summer of 2005 things were definitely NOT ok here.  I knew it deep down where that Mommy gut nags at you.  We had speech therapy.  We had occupational therapy.  And we had a child who had already been hospitalized twice with chronic viral infections, was not sleeping, was not playing, was not talking, and was most of the time flat out uncomfortable.  We also had a vast array of doctors who dutifully collected my Co-Pays and did absolutely nothing but tell me they “didn’t know.”

So, I read.  I researched.  I altered her diet.  I added some key supplements.  I started to see results – but not enough.

This doctor, whose office we just left a few hours ago – over 8 years since our initial meeting- got to know Meghan.  He told us he could help.  And he has.

We have worked together through dietary interventions.  Supplements.  IV treatments.  Countless blood tests.  And, when we needed it – Xrays, and guidance towards the diagnosis of “milk of calcium” of the gall bladder at age 3.5

He has been my sounding board through lots of ups and downs.  I have never, and will never take any one person’s word on what I should do for my daughter – doctor or not – but he is one of the opinions I value highly.

He had the gumption to prescribe digestive enzymes after YEARS of horrendous stool and horrific stomach aches.  “We don’t need to biopsy the pancreas. Sometimes we just need to use our heads to see what works.”  Not too often these days will you find any medical professional with that confidence or drive to do what is right.

Through the years we have visited his office at least 3 times a year for lengthy consultations.  He has suggested countless things to help aid Meghan’s immune system, her pain, her tendency towards chronic fatigue.  I have listened to many, and ignored a few.  Conversations have evolved over the years as we have each stayed up to date on current research.

The initial diagnosis of Cowden’s Syndrome seemed to bother him a great deal.  He was bothered by the ramifications of the syndrome, but also by the fact that there was no way this was “all of it.”  Meghan “doesn’t fit in a box,” he would always tell me.  Never let them try to put her in one.

And, perhaps truer words have not been spoken.  As we have navigated the world of Cowden’s Syndrome, I have been acutely aware that there is still “something else.”  But, since we are yet to put our finger on it – we continue doing the best we can.

Cowden’s Syndrome involves screening tests.  Regularly.  For cancer, and vascular malformations that can form anywhere at any time.  X-Rays and CT scans are discouraged because of radiation exposure and a fear that cells can be “tripped.”  So MRI is the test of choice.  MRI with contrast that is.  Gadolinium to be exact.

I’ll get back to why that is important in a bit.

We have spent the last 2 years especially, (but really the last 5 or so for Meghan considering the AVM in her knee was discovered LONG before the Cowden’s Syndrome diagnosis) being scanned.  In July Meghan had an MRI ordeal that involved 4,000 images, 3 hours, 2 tubes, and 3 doses of contrast dye.

We have spent the last few years dealing with a rapidly growing child whose pains seemed to be increasing exponentially.  We have gone from treating with Advil to treating with 200 mg a day of Celebrex.

We have spent the last few years trying to help her stay calm- only to watch her anxiety mount.  In September she was diagnosed with Alopecia Areata– an autoimmune condition that causes hair loss.  Fortunately for us it seems to be contained to a small area, but it is an unnerving diagnosis still the same.

We understand the role of autoimmune disease and stress, and toxins.  We understand the role that stress can play on a genetic mutation of the PTEN (tumor suppressor) gene.  We understand that there is external and internal stress.

We do what we can to control stress on the body.  We make sure she has “down time.”  We try to help her get rest.  We got her involved in swimming, a sport she loves. We make sure she eats a largely organic diet free of the foods she can not tolerate like gluten, dairy and soy.  We eliminated almost without exception preservatives and dyes.  We bought new pots and threw out the plastic plates we used to use sometimes.

We started giving her ISAGENIX, the organic superfood that is as pure as I seem to be able to find.

And even at that – there is an awareness that we can NOT control it all.  There is an awareness that by whatever mechanism that is broken, our girl does NOT detoxify properly.  We are aware of toxins in the air, in our soil, and even in our filtered water.  We are aware that her body is confused by this world we live in, by the GMOs that are even hidden in her organic diet.

GMO safety-testing

We run, like Indiana Jones, out in front of the boulder, in constant motion.  One stride ahead…

Chelation

Chelation therapy is a proven treatment for lead poisoning and poisoning from other heavy metals.

http://www.cancer.org/treatment/treatmentsandsideeffects/complementaryandalternativemedicine/pharmacologicalandbiologicaltreatment/chelation-therapy

The term has been spoken over and over again by the “bio medical doctor.”  Chelation is the concept I found every single excuse to overlook and ignore.  The idea  shook me to my core.

The turning point – Alopecia Areata and the words I had heard him say to me for years, “She is primed to become an autoimmune train wreck.  Let’s try to clean her out.”

toxic

She went for her first treatment last month.  After the treatment there is an 8 hour urine test to measure the toxic metals excreted.

She went for her second treatment today and I got to look at the printout of last month’s urine analysis.  So, even as I held her, and she wailed in pain, and two veins rolled before they got a good one, my resolve was strong.

There are several metals that were high.  None of that made me happy.  But the most disconcerting of all…

The reference range for that MRI contrast dye Gadolinium I mentioned earlier is <0.4.  Her output was 190.  No I am not forgetting a decimal.

Gadolinium.  Necessary for the cancer and vascular screenings set to be part of her life forever.  Except apparently her body can’t seem to excrete it.

Toxic metals

Catch-22

Keep Swimming…