PTSD is real…

I catch the judgments when I mention PTSD to even those closest to us.

I have the utmost respect for our military, and our servicemen and women.  They are the front lines, defending us and keeping us safe.  They experience horrors I could not imagine, and I am daily grateful for them.  The PTSD many suffer is real and no one would ever question it.

But, just as l know that their’s is real, I am that sure it is real in my house too.

Post Traumatic Stress Disorder does not stipulate the trauma.

Some days I try to ignore it.  I try to hide it. I try to work around it.  I try to pretend it’s not there.  I try to lean into the pressures of well-meaning friends and acquaintances alike that we should act “normal” so as not to marginalize ourselves.  I hear the logical statements about fitting in.  I hear them.

We talk about “everyone has something.”  We are acutely aware that we are not the only ones that suffer.  We are aware of our blessings.  We share those blessings with others when we can.  We listen compassionately.  We are believers in the notion that, “If we all threw our problems in a pile and saw everyone else’s, we’d grab ours  back.”

We are aware that we can be perceived as aloof, or detached, or disinterested.  We are also aware that largely by circumstances and partly by our own design, we are alone.  We haven’t really ever spoken to you about why… We try to listen compassionately.  We try to be the people you need.  We try to be lighthearted and positive when we feel like we are being crushed.

When the diagnosis of PTSD was first given to me as part of an analysis of my beautiful daughter’s response to the constant traumas that had shaped her life, I was physically ill.  And then I was really sad.

And through the years I have tried to wish it away.  I have tried to convince and cajole and distract.  I have tried to rationalize. I have tried to blame myself.  I have tried to be angry.  I have tried to pray.  I have tried to walk it off.  I have tried to medicate it.

I have brought her to quality therapy.  I have introduced medication.  We have tried strategies.  We have tried simple grit.  We have never quit.  And there is progress.  But it is not easy.

I’ve been home a few weeks now with a foot that won’t heal.  I am trying to put into play some things that have been on the back burner for too long.  I am rediscovering my faith, and leaning back into the peace that has anchored my soul for so long.  I am learning new things, like the operating system on a new computer.  I am trying to find value in the waiting to heal.

I have also had some time to watch some old home videos, transferred from the portable video camera that was state of the art when our only child was born in 2003.

I look at some of those old videos and I laugh and smile.  And I hear the purity and innocence of a life untouched by physical and emotional pain, and the cruelty of the loneliness that often surrounds both.  And I laugh in spite of myself while the tears stream down my face.

We are strong.  We are determined.  We are compassionate.  We are intense.  We expect a lot from those around us, because we expect a lot from ourselves.  We are often isolated, marginalized, and left to live on the edge of all things social.

PTSD, the elephant in every room.

You see the diagnosis of Cowden’s Syndrome was not the start of it.  The first medical intervention was before the age of 6 months…

The years of hospitalizations, immune deficiency, chronic illness, food allergies, constant GI upset, speech, OT and PT services, led right into one surgery after another, with scans, doctors visits, and a few emergency room trips sprinkled in.  There were arrogant doctors and medical staff, ignoring that we were literally walking through fire trying to survive.  There were teams that would not communicate, and problems we had to try to solve on our own.  There were well meaning people in our lives asking if she was “better” because they could handle nothing other than a positive in the midst of this crazy, wild storm we were living in.

The diagnosis at the age of eight formalized the fact that we were definitely different.  It gave an answer while raising more questions and increasing the isolation, as parents scheduled play dates with children who became friends while we rode the FDR drive for hours after a day of work and school.  They went to the mall, or to the movies while we headed to PT to bring that knee back from surgery 4,5,6,7,8….  It was inevitable that the divide would grow.

I told her she could do anything.  And I meant it. I still mean it.

She is academically rock solid.  She is an athlete.  She is a good friend to those who let her be.  She is thirsty for knowledge.  She is insatiable in her desire to make the world better.

She’s also angry.  And its hard to see it.  It’s hard to feel it, and to watch it.  But, it’s real.  And it’s valid.  As much as we were able to do for her, the basic joys of childhood were taken from her.  From colic, to hospitals, to bullying so severe it almost broke her, to being just outside the edge of every circle or group…  A week in Disney every year helps, but even the Mouse doesn’t have a bandaid big enough.

We stay busy.  It is the best way.  But sometimes it breaks down.  This has been an extra tough week.  There isn’t one reason why.  It just is sometimes.

As I sat with her the other night and the memories of the most traumatic surgery turned my strong young lady back into a terrified 10 year old, I was reminded.  PTSD is very real.

It is real when the medical world is overwhelming you.

It is real when the pain is chronic.

It is real when the thought of getting out of bed is just too much.

It is real when you need the dog close by to even close your eyes.

It is real.

It is also real when you’re the youngest NYS Woman of Achievement in 2016 at the age of 12, or being honored with a Humanitarian Award at 15.

It is real when you’re holding a 3.9 GPA.

 

It’s real when you are achieving best times at Junior Olympics.

It’s real when you’re laughing with your high school swim team.

It is real when you’re in costume on the stage.

It’s just flat out real. And most of the time you have no idea what it looks like.  The costume is better than Broadway.  The mask is strong, crafted through years of survival instinct.

It never goes away, and yet it takes over without notice at the most inconvenient times.

PTSD is not an indicator of weakness, but rather of strength.  For living with it means you could have given up, but you are pressing on instead.

I’ve passed this advice to parents through the years who are new to our diagnosis.

“It is a lot to handle.”

Don’t underestimate.

It is hard to be kind to those who are different.  It is hard to be with people who are sometimes just “a lot.”  It is hard to care.

But the reality really is you just don’t know.  You don’t know the struggles facing anyone you pass by on the street.  You have no idea.

It’s neither a contest, nor a competition.

We are not perfect.  It is harder when the hurt is in its most raw periods.

But, we have goals.  And perhaps they go back to the “Golden Rule” of my youth.  “Do unto others as you’d have them do unto you.”  

That means you keep paying it forward, without expecting it to be repaid to you.

If we all, ourselves included, can remember that everyone has real struggles, and we can all focus on kindness, I’m pretty sure we can start real change.

One smile, one inclusive invitation, one held door, one kind gesture at a time.

“Be kind always, because everyone you meet is fighting a battle you know nothing about.”

#beatingcowdens

 

 

 

Desperate times…

I took the knee scooter to the mall.

I brought my husband.  Well, technically he brought me.  And he lugged the giant contraption down the stairs and into the back seat of our “big enough for most things, but not this thing” Sonata.

The screen on his iPhone had cracked and he needed to go to Apple.  I needed an outing worse than a puppy who has been crated too long.

He dropped me off at the door.  He rode the scooter through the parking lot to meet me.  Apparently, like so many other things, its a LOT more fun when you don’t need it.

I laughed in spite of myself at the sight of it.  I was also glad our teenager had decided to stay home.  The sight of it all would have likely been just too much.

People stare right at you, while simultaneously judging you as you drive this thing.  The local mall lacks the tolerance of Disney World.  In fairness, from face on, it looks like you’re using wheels for fun.  It’s not until I have passed, if they bother to look, that they would see the giant walking boot resting on the knee pad.

Today is 8 weeks and 1 day since I’ve been “booted” again. 57 days.

I have had more surgeries in my life than I can count.  Not a single one of them kept me down for 8 weeks. This foot has been messing with my life for over 8 months.

Double Mastectomy – back at work in 5 weeks.

Hysterectomy – back in 2 weeks.

I once had arthroscopic knee surgery over a long weekend, and was back on the 4th floor in my classroom the following Monday.

Vascular, over the February break…

Biopsies, a day tops…

We always say recovery pain is the best kind, because you know it’s going away.

And yet the answer to “Does your foot feel better?” still remains “Not really.”

My kind and compassionate local podiatrist, in a combination of frustration at the injury that won’t heal and my insurance company making it harder for him to treat me, has advised a visit to Hospital for Special Surgery.  I’m sitting.  Foot up, phone in hand, waiting to try to schedule.

I rode that knee scooter all over the mall.  I rode it into the grocery store too.  Quite simply, I’m tired of being locked in my house.  It is truly a ridiculous and ingenious contraption.

If you asked me 2 years ago if I would ever… the answer would have been “NO WAY!”

Except if I keep learning anything through these years of life with a rare disease, and also just life, it seems to be” never say never…”

I had a boatload of things I wasn’t going to do as a parent.  I’m pretty sure the first one was undone about three hours in… right after the anesthesia from that c section wore off…

Wasn’t going to… feed certain things, watch certain things, give certain things, etc. etc.  And then you find yourself learning that all the plans in the world are suddenly invalid as you just try not to damage the tiny human.

A great deal of my pride was left behind in the OR where she was delivered.

I lost a bunch more of it through a slew of breast biopsies prior to the double mastectomy in 2012.

The uterine biopsies, the hysterectomy, the “cancer screening” human exams took a bunch more.

And there are few things quite as humbling as a breast MRI of your silicone implants.

I was never “in fashion” but I used to take great care in what I wore.  Things were dry cleaned.  Stockings and heels were worn daily.

Then there was back pain that seemed only better in sneakers.  Coupled with a significant weight loss my wardrobe evolved into jeans, t shirts and sneakers.  May be a dig at my early judgment of “too casual” teachers…

Life, at it again…

If we are open, and able to be introspective, we are changing and growing all the time.

I am in a painstakingly slow process of relinquishing control.  

Control is really largely an illusion anyway.

Faith, trust, hope, and the ability to embrace what the future has in store, these are my current goals.

I’m a work in progress.

So if you see me and my knee scooter, be kind.  You may even see me up and down the block.  These are, after all, desperate times…

We’re done being caged up.  I need some fall air.  I am ready to get well.  Since my foot isn’t cooperating, I’ll start with my mind.

#beatingcowdens

 

 

Check in…

grass is greener“The grass is always greener…”  Blah, blah, blah.

One of those phrases hard to hear, yet typically true.

I woke for work so many days wanting an extra day off, to do nothing.  A break from it all.  A weekend escape.  Me time.  On my terms.

And here I am.  Not on my terms at all. Finishing my seventh week in the “boot” with no end in sight, and daily trying to be diligent about restricting my movement.  All in the hopes the foot will finally heal enough for rehabilitation, and a return to the daily grind.  Isn’t it ironic?

ironic

Seems to be how life goes  a whole lot.  A dear friend once told me, “You can have it all, just not all at the same time.”  Sage advice that I have frequently pondered through the years, but especially these last few weeks.  She stopped by and spent an amazing few hours helping to make some of the time melt away.

Someone sent beautiful flowers to my house last week.  They sat on my table and every time I rolled past them on my scooter I smiled.  Unexpected random act of kindness that lifted my heart.

E89E6AD3-E8C2-4A71-AE76-6B43B6EAA43A

Someone sent me a text out of nowhere, just checking in.  The smile it gave me lasted for hours.

There is one who checks in to keep me involved in the day to day outside of what is currently a very small world.

Another sends me Instagram messages.  Simple Smiles.

check in

A dear friend stopped by with a bottle of Coke and left it in a bright pink bag on my porch.  She had taken the time to pick one up with my last name on it.  I try to generally be healthy, but a sugary real coke is often a weak spot.  She knows.  I will save it for a time when I’m really starving for company.  Maybe tomorrow?

I’ve been focusing as a chronically ill person would, checking boxes, and completing a variety of appointments that are necessary for the management of Cowden’s, yet sometimes interfere with my work day.

I’ve cleared a cardiology intake, and can now hope I need nothing more than an annual drive by.  I have “stacked” several appointments for Meghan on a Monday in January.  It will cost me the day (in my optimism that I’ll be there…) but it will save us a world of trouble going in once instead of three times.  I have filed claims, copied, faxed, sorted….

Meghan got 2 wisdom teeth pulled Friday, right in front of a 4 day weekend from school.  I’ve set her up with a new eye doctor for her annual screen on Election Day.  The eyeglass forms from the Union are on my table.  Felix and I need exams as well.  I’ve spoken to pharmacies, stayed on top of prescriptions and supplements.

6 month dermatology screen for both of us next Wednesday.

I have a few projects, a few things I hope to get focused on.  But, I am easily distracted.  And I am focused on my apple watch, and my step count, which I have been instructed to keep painfully low.

There are some nights, after using up my steps at any of the above appointments, that I’m stuck in my bed pretty early.

I have an app on my phone that has me reading the Bible more than I have done in far too long.  I love the way the books are illustrated in drawings first.

I also have an app that I can waste hours on bouncing bubbles.

I’m up to date on the DVR.  I watched “Diagnosis” on Netflix.

I’ve been researching some alternative pain management.

There is always a way to stay busy.  There is always something to research, to sort, to shred.  There is ALWAYS a way to better yourself, regardless of the restrictions.

What I don’t do is pick up the phone.  I don’t really reach out.  I’ve been battling for quite some time, and I work hard staying afloat. I get the job done, and I always will.  Failure is not an option.  Becoming a completely isolated introvert however, is.

It’s hard to reach out when you’re struggling.  I do my very best to broaden my senses and put small gestures in the direction of those I know might be having a hard time.  Just because you haven’t heard from them, doesn’t mean they wouldn’t love a check in.  In this technology world where its so easy to say “I’m thinking of you…”  We should all try it more.

It’s not about grand gestures.  It’s about knowing you’re missed.  I’m not always as good about it as I could be for others. But, I’m working on it.

Check-on-your-friends

That starts now.  Because if I feel this way, other people do too.  And if we can all check in and share a smile in whatever way we know how, it will make a difference.

And right now, I’ve got plenty of time, anxiously trying to heal this foot while…

#beatingcowdens

 

 

 

Forced Pause…

My sister had a series of hamsters when we grew up.  I don’t remember how many.  I actually don’t remember much besides the smell of the cage, and the wheel they used to run in.  They never seemed to tire of it, and each spent long periods of their day there.  Maybe it’s because they were caged with few other options.  Maybe they didn’t know any better.

Regardless, I’ve thought about those hamsters a lot lately.

I feel very much like we live on the wheel.  Every day is centered around executing a well-oiled machine where an insane amount of activities, assignments, and appointments fit into a tiny window.  So at an early hour we hop into the wheel in a sense, and we run all day.

When you’re in the wheel you may think about nothing except for the next task.  Or you may wonder if there is a better way to get through the day.  You may long for a break from the routine and the schedule.  You may wonder what you’d do if…

We are chronically busy.  Sometimes out of necessity and sometimes by design.  Sometimes, in the case of those of us with chronic illness it is a little of both.

In my house we are busily maintaining health, through frequent appointments and therapies.  We are also busy trying to fit a regular life around it.  There is constant motion.

Until there isn’t.

I spent so many moments wishing I could take things a little slower.  I wished I could have some time, for a full nights sleep, to clean my house the way I want it, to visit with friends, to take long walks, and…

And now I’m here.

A January foot injury at work has morphed into a monster that refuses to heal.  Stress and strain and alternate gait patterns protecting the original injury continue to set the healing process in the wrong direction.  A stress fracture of  the cuboid bone continued to worsen.  It’s now my first official “fracture.”

It is time for me to pause.

This time there is no rushing out of the boot.  There is no making believe its all ok.  There is waiting.  Resting. Minimal weight bearing.  There will be additional imaging to clear the healing before I head to physical therapy.  There are only very short car trips to doctor’s appointments and to transport my girl.

I am here.  In my house.  Alone.

And it sounded to heavenly when I was dreaming about it in the middle of the chaos of the day to day.

Now it sounds a lot like the tick-tock of the clock hanging over my head.

It feels a lot different when I have to let someone else teach my students.

It is not as productive as I’d hoped, since all the cleaning and sorting and organizing I promised myself if I ever had time is currently off limits with the whole restricted movement thing.

It is a battle not to let my head overthrow me with its worry about “real” Cowden’s issues that may at any point smack us in the face.  It is tough not to think about the backlog of surgeries that will come, but have now been placed in triage.

And yet I have to make a choice.

There was a very inspirational GoalCast in my Facebook feed this morning.

Claire Wineland Dies at 21 and Leaves Beautiful Message

And I’d encourage you to watch it if you have a moment.

Her life was way more challenging than mine.  Yet she made a choice that I still struggle with sometimes.

These last few months without the proper use of my feet have often left me battling depression.  I do not have it all together, or have an inspirational message as this young woman left behind in her short time on earth.

What I do know is if I choose to wallow in this I will miss the “pause” that has been placed in front of me.

Instead I will make the conscious choice to make what I can do, more fulfilling.

I am going to try to write a lot more.  I am going to have some people visit.  I am going to handle a few “sitting down projects” that are in my path. I am going to open the windows and appreciate the fall weather even if I can’t walk in it this year.

I’m going to look at my orchids, and their beauty and crazy, stubborn irregularities that make them magical for me.

I am giving small pieces of my life back to reflectiveness and prayer and simple mindfulness.

Someone took the wheel out of my cage.

For however long it’s gone, it’s on me to decide how to view it.

If you take the time to watch the link above you’ll understand when I say today I am looking to add some lights and a few throw pillows.

This is not easy.  If you’re reading this you likely go through hard things too.

I am a work in progress.  Thankfully God’s not finished with me yet.

I’ll be here with my feet up.

This too will pass eventually.

#beatingcowdens

Rare Lives, Rare Disease Day, and So Much More to Come

Thursday, February 28th, 2019 is World Rare Disease Day.

There was a point close to forever ago when that meant nothing to me.  I had never even heard of it.

Our initial Cowden’s Syndrome diagnoses came in the fall of 2011.  Meghan got her’s first, and mine followed soon after.  2012 held the most insane whirlwind of medical and surgical experiences we have ever known.

By the time Rare Disease Day came around in 2013, we had begun to feel the need to raise awareness of our PTEN Mutation causing Cowden’s Syndrome.  Even though we were grateful to have each other, to be 1 in 200,000 can be isolating.

At the time my girl took to the Global Genes Project and learned all she could about rare diseases.  She was most struck by the reality that many children diagnosed with rare diseases don’t live to see their 5th birthday.  She promised she would always try to speak, not only for herself, but also for the “littles” who couldn’t tell their story.

Meghan’s Speech in 4th Grade…

The text of her speech – Meghan Speaks Out!

In 2013 she spoke at her school and at mine.  We handed out denim ribbons, and started opening eyes.

In 2014 we stood together, as she was a student at my elementary school.  She created a video, we did a fundraiser.  There was something empowering about sharing knowledge.

February 2013 Article

In 2014 she met Borough President Oddo and they are still in contact.  He has been a mentor for her through the years.

RDD Blog Through Meghan’s Eyes 2014

Rare Diseases as a whole are common.  One in ten people suffers with a rare disease.  Yet, there are over 7,000 rare diseases and each carries with it it’s own specific challenges.  More than 350 MILLION people suffer from a rare disease, yet it takes 8 years on average for a diagnosis.  https://globalgenes.org/rare-facts/ In the interim, so many people trudge through the day to day challenges alone.  Typically there is no one to relate to their experiences, and even the best intended friends and relatives often tire of the chronic nature of a disease that won’t ever leave.

Raising awareness became a mission of Meghan’s to help people become more compassionate and kinder towards each other.  We have always worked with the understanding that “everyone has something,” and the more we learn empathy and compassion, the further we will get.

Meghan’s early days of speaking in schools, and creating awareness videos evolved into “Jeans for Rare Genes” a fundraiser involving friends, family, and the community.  There have been 4 so far, each one different than the ones before, but all helping to raise funds and awareness for rare diseases.

In December 2013 the PTEN Hamartoma Tumor Syndrome Foundation was born, through the blood, sweat and tears of Kristin Anthony, and with a village, it is growing into a helpful, guiding light in our community.  And, finally Meghan has found the focal point for the fundraising!

(check out some of the links below for some of our journeys)

RDD Meghan’s Video 2015

Twelve Surgeries in Eleven Years Article 2015

RDD Meghan’s Speech and Video 2016

Understanding Cowden’s Syndrome Article

Through the years my girl has been honored as a New York State Woman of Distinction, the youngest ever, in 2016.

She was awarded the “Humanitarian Award” at the Teddy Atlas Dinner in November of 2018.  She has racked up close to 20 surgeries in her young life, and yet she has managed to remain a scholar and an athlete.

Lives now forever intertwined. Kristin Anthony celebrates Meghan’s honor with us.

Celebrating Rare Disease Day is sometimes like going to the worst party ever.  Or, maybe it’s the best.  I guess it depends on how you look at it.  We’re here… stronger.  The community is growing.  Support exists.  Hope exists.

Last summer we were contacted by Aldo Soligno on behalf of the “Rare Lives Project.”  He had worked on this project in Europe and had had much success raising awareness to the government about the lives of people with rare diseases.  We were touched to be asked to be part of his American pilot of this project.  And, while it has not received the funding he had hoped, the release of this summer’s photos on social media has been therapeutic for both of us.

Here are some of the picture released to date.  Photo credit Aldo Soligno.

Please follow “Rare Lives” on Facebook, Instagram, and Twitter to help them raise awareness of all rare diseases.

Please follow the PTEN Foundation

on Facebook, Instagram and Twitter.  Follow their community work, their fundraising, and their efforts to unify with PATIENT FIRST.

This neat initiative is taking place right now, among others!

https://www.facebook.com/ptenrocks/?sfnsw=cl

We are perched in exciting times.  It is a time to reflect, to gather strength and resolve and press forward.

This year I know more people with Cowden’s Syndrome, and more people with other rare diseases.  We are allies and advocates.  We are parents, sisters, brothers and friends.

This year I hold close in my heart a friend’s little one, waiting on her diagnosis.  My heart feels their anguish.  My faith tells me their help will come.

There are still struggles.  Plenty.  But, before telling those stories it was time to remember from where we came.

One thing will not, and has not changed.  We remain forever

#beatingcowdens

(Living) “In Prep for the Climb” – PTEN Awareness Day 10/23/18

I’m aware of Breast Cancer.  As a survivor now of 6 years and the daughter of a 21 year survivor, I am aware as I dry from my shower facing my mastectomy scars every morning, that breast cancer is reality.  As my Facebook feed and my memory are both too full of those we have lost and those who still face this disease, we are aware.  What I wonder, is how much help is the awareness?  It is a topic that could be debated forever, but I’ll change gears first.

Something else I am very aware of is the PTEN gene located on chromosome 10q23, and the perils its associated mutations can cause.  So when the PTEN Foundation let us know that 10/23 was designated PTEN Awareness Day, we were all in.

This blog has, for years been designated to the ups and downs of this mother- daughter duo dealing with Cowden’s Syndrome, the diagnosis we both received in late 2011 after a PTEN mutation was first diagnosed in Meghan, and weeks later in me.

The few years following were an absolute whirlwind of appointments, scans, screenings and surgeries.  We worked to keep our heads above water and just exist.  We considered keeping my job, and maintaining honors status in her school quite the accomplishment.

We were told things over and over, like “don’t let it define you…”

I’ve got some news for you.  You can only walk so far into the fire without retaining the scars.

True awareness of PTEN for us comes with comprehension of the gravity that you have to remain in a vigilant stance of preparation, awaiting attack from your own body at all times.  PTEN patients have ridiculous cancer risks pretty much all throughout, and the VIGILANCE required to stay ahead is utterly grueling.

We are faced with choices to keep the most high risk organs, or remove them prophylactic ally.  We are asked to play the odds.  With our bodies. All the time.

With Meghan the AVM (Arteriovenous Malformation) in her right knee, though quiet now, has caused damage she will deal with forever.  She is 15.  God willing she will walk on those legs another 80 years, each day aware of the pain, and of the symmetry removed from her body forever.

When you have to be vigilant, you have to plan.  There are trades.  You have to decide if you’ll miss school with friends and fall behind in classes or give up the breaks designed to recharge you.

There are no breaks.  February – months away has 3/5 of its break and 2 other days devoted to appointments.  Martin Luther King Jr. Day in January.  Yep – that one too.  Don’t worry, the brain MRI is scheduled for April break….

You have to pick and choose.  And the decisions are hard.  You want to give it all to everything, but HOURS of your world are wasted in bumper to bumper traffic, waiting for the hopeful news that you have another 6 months before you come back.  And if, in fact you don’t get that news the schedule is tossed and it’s game on for scans, analysis and biopsies.

The pain.  No one can really tell us yet from why, but it seems to exist throughout.  The fatigue.  Maybe the thyroid issues, maybe some immunological stuff.  Maybe some connection yet to be determined.  But it’s real.

It’s as real as the number of times we had to decline invitations before most people stopped asking.

We’re not blowing you off.  We’re holding it together – by a shoestring.

Chronic Illness is hard to live, and we get that it’s difficult to watch.  But, it’s real.  And short of a cure, it will never “run it’s course.”  It will not BE us, but it will be PART of us – FOREVER.

“You don’t look sick…”

“You don’t look anxious…”

No, as a matter of fact she looks strong and determined.  She’s been practicing for quite some time.

Sometimes I have to bite my tongue to keep from replying, “You don’t LOOK ignorant either – but at least you can fix that if you WANT to…”

Our rare disease journey has opened our eyes to not only PTEN disorders, but “Lhermitte-Duclos disease,” “Nail-Patella Syndrome,” “Lynch Syndrome,” “Spinal Muscular Atrophy,” “Muscular Dystrophy,” “Neimann- Pic Disease,” ” Neurofibromatosis,” “Acute Myeloid Leukemia” to name just the very tip of the iceberg.  I am more aware than every that everyone struggles.

I’m also a big fan of real pure awareness, for the sake of learning something about other humans I share the planet with.

One of the humans I share my home with has grown up in a totally different direction courtesy of this disease.  And while I am grateful for her diagnosis, as it surely saved my own life, I am sad that she has had to see so much, and manage so much already in her life.

So today, on 10/23, if you’re not living with it yourself, direct yourself to http://www.PTENFoundation.org, or the PTEN Facebook Page and learn an little more about PTEN.

My own girl is working every day to make herself better, physically, mentally and emotionally.  When I have down days, or I just don’t feel well, she reminds me to forgive myself.  “You have it too Mom.”  Indeed I do, and it’s quite a ride…

“Prep for the Climb” Disney’s Hollywood Studios

Together we prepare for the climb each day – and seek out that ‘One Perfect Moment’

For as much as this disease has taken, I am grateful that she is starting to take back control, and is finding her voice as an advocate for herself and others.  (And I love listening to her sing too…)

#Beatingcowdens

Bring It On the Musical – One Perfect Moment Lyrics
2012 Broadway
Bring It On the Musical – One Perfect Moment Lyrics
I’m not freaking out, I’m really okay
I’m totally chill or I will be someday
‘Cause I’m so near the top but there’s so many mountains to climb
There are plans to be planned, drills to be drilled
‘Cause this dream that I’ve dreamed is becoming fulfilled
And I plan to enjoy it but right now, I don’t have the timeFade in on Campbell, an average teenager almost grown
Close-up on average grades from the average life she’s known
Now zoom in the lens on the rest of her friends as she stay alone
Doing the work, getting it right

‘Cause I know we’ll have to be practically perfect
So I’ll go above and beyond and pull through, this I can do
All that I’m asking is one perfect moment in time

I’m seventeen, there are so many things that I can’t control
If I start to freak, or feel weak, I focus on just one goal
Turn down the panic, attack this routine like it owns my soul
Turn up the music so loud that it swallows us whole
And then there we are, we burn like a star
We’re safe inside the world we know
Then suddenly I’m in prep for the climb and here I go
High in the air, there is a moment just before you start to fall
Live in that one moment

I know that if I can just stick the landing
Then I’ll know that somehow my life will be fine
And I’ll go through the rest of my life understanding
What it feels like to shine
The future’s full of mysteries
So please let this be mine
My one perfect moment in time

Just Do Your Job

I guess as I think about the last few weeks, so often the thought comes to mind that if people would just do their job, thoroughly and with accuracy and pride, many problems could be avoided.

This weekend I compiled a 5 page letter, and a 20 page PDF and Emailed it to the CEO and director of operations of the local hospital that I feel could have done a far better job handling my February 21 vascular surgery.  It took a little time to get it out, and it was frustrating, but simultaneously cathartic.

Early in the healing process my sage daughter said, “Mom, you’d never let anyone treat my body like that.  Why is it OK to treat yours that way?”

It isn’t my dear.  And I know she’s always watching.

I took my notes all through the week before and after the surgery, and then I rested to see if I could get it out of my system.  It lingered.  So, yesterday, off it went.  I told them I’d like the name of who they handed my case off to, by the close of business on Friday 3/30.  There’s a post it on my desk.  To be continued.

Just Do Your Job.

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When I finished that letter, I wrote one to my health insurance carrier.  We are fortunate enough to have two, but keeping things straight can get confusing.

Meghan met a new neurologist in December of 2017.  When we went to the appointment there was no one to collect a co-pay.  I figured they would bill it.  Then, I forgot.  The news of the finding of a “lesion” was enough to jar me out of my normal routine.

Sometime in January I received an “Explanation of Benefits” and a $35 check from my insurance carrier.  This is not uncommon, as often I have co-pays refunded once an office receives the co-insurance payment.

A February MRI and neuro follow-up gave news of in fact TWO 1cm lesions, and some swelling.  All of which will need to be watched.  I got a bit distracted.

The check sat, with several other checks until March 8th, when I deposited them into an ATM.  That was a Thursday.  On March 11, I logged onto my online banking to see that the check had a “Stop Payment” and in addition to having the $35 deducted, I was charged a $12 fee.

Furious was an understatement, as I am meticulous about my banking.

Just Do Your Job.

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On Monday the 12th I received a letter from Chase Bank explaining their end of the explanation of my fees.  My insurance carrier told me that the doctor contacted them on February 15 to ask them to stop payment on the $35 as I had never paid the co-pay.

The doctor never billed me, just reached right to the insurance company.  They later admitted never billing me.  No apology.  The insurance company never reached out to me.  Never told me the check had been stopped.  I didn’t go to the bank with the check until 3 weeks later.

Within 72 hours my bank had notified me online and by mail.  My insurance company had no explanation as to why they never afforded me the same courtesy.  My bank actually DID their job.

When I took it to a supervisor over the $12 fee, and my embarrassment, and my annoyance at the number of hours this was taking from my life, she offered me the standard PO Box to send my complaint.

I asked her to do better and she told me to fax the receipt of deduction to her.  She said she’d expedite it.  It’s been 10 business days.  The formal complaint letter is written and mailed.

Just Do Your Job.

Then, there is the doctor who refuses to figure out mail order.  My insurance has denied payment of the drug until it goes to mail order.  Thank goodness it’s affordable.  I’m paying it while simultaneously working out getting him to mail order it.

Just Do Your Job.

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Tomorrow, I will make a few calls on our newest denial.  I suspect it will take a few weeks to sort out, but I will win this appeal.  Because, no one in an office is going to tell my that my daughter has “recovered,… and no further improvement …. is expected.”  Nope.  Not working for me.

Apparently they weren’t  at the swim meet last weekend.  The meet that her PTSD might have kept her from without a hard push, but the meet where she DESTROYED all her best times.  At that meet I had proof that further improvement IS EXPECTED.  Because it is happening.

Just Do Your Job.

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That swim meet last weekend was 6 hard months in the making.  There has been so much work in place dealing with her PTSD, her anxiety and her panic attacks.  She had to make sacrifices and step away from her commitment to a local theater program.  I didn’t give her much choice, even though I knew I was probably taking one opportunity at theater from her to give her another at swimming.  Parenting is about making tough choices.  She’ll be at all the rest of the theater practices.  She had to KNOW she could get through this meet.

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This event is just exhausting. She has a love/hate battle with it. Sometimes she even catches the “2Fly Flu”

 

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The improvement from entry to finals just shows how much she needed to be there and get this out of her system. She’s got more progress in her.

 

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It’s been a goal to go under a minute for over a year. She crushed it.

When you are 24/7/365 fighting a chronic illness, and in this case a rare disease, no value can be placed on physical strength, actual and perceived.  You see there is never a moment when you are not waiting for the other shoe to drop, right on your head.  So the need to be physically strong, is a NEED, not a luxury.

I sit here now, Sunday evening again, and I think of all the things I would have liked to do this weekend.  I think longingly about how nice it would be, to be in Alabama at the PHTS Patient Symposium, and if not that, then to get a manicure, to catch up with old friends, or even to stop and read a book.  But, I know that is not meant to be.  Not right now.

For now, at this point  my life, weekends are about putting out the fires that creep into the world all week.  It is about uncovering the “in box” and fighting the fights that will get my daughter and myself the care we need and deserve.

I like to think it won’t always be this hard.  But, if I’m honest I suspect it will be.

The trick is going to come in my figuring out how to keep it from swallowing me up.  There is always going to be a fire, a battle, an appointment, or a medical drama.  ALWAYS.

This weekend, I had dinner with my husband.  I took a walk, AND I went to one store for fun.  It’s not much, but it’s a start.  It’s a process.

The battles rage on.

Vigilance is required.  This journey is not for the faint of heart.

But we are establishing support from afar.  We are finding each other.

As one of my groups says #WeAreCowdenStrong

And we, in this house, remain

#beatingcowdens