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.

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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

Difficult To Work With

I am so tired of fighting.

All the time.

My Grandfather told me  many years ago that I was “difficult to work with.”  He said it with love.  I don’t remember the exact context.  I do remember it was said with a smile.

And he was undoubtedly right about that, like so many other things.

I had a boss a few years back that told me, “If you continue to hold everyone to the same standards you hold yourself to, you will always be disappointed.”  Strong words, but also not  inaccurate.

I am a lot to take.

I am intense almost all the time.  I have a mouth full of words that last long  past the attention span of anyone I strike up a conversation with.

I am passionate about things I believe in.

I make lots and lots of mistakes.  But, I truly do my best all the time.

So I just sometimes struggle to understand why it seems everything I touch or encounter is a battle.

I spend hours upon hours sorting through medical claims.  I look up who paid what, and when.  I call on bills that need to be refiled.  I take names on post-it notes with dates and times, in case things don’t get rectified.

I file out of network claims, and then I watch them processed in error.  I make three phone calls to try to sort out the change in policy, which was simply just a mistake no one will own.  I take names again.  I am told to wait 6 more weeks for hundreds of dollars owed to me to be reprocessed.  It’s only a little about the money.  It’s mostly about the notebook, and the folder with the copies of the claims, and the alarm in my phone to remind me when I need to follow up on the call again.

I send medication to the mail order pharmacy because we have no choice.  And then I wait for them to screw it up.  That sounds negative, but it’s simply accurate.  They have an entire notebook in my world to help manage the 9 mail away prescriptions between us.  There is a perpetual box on my ‘to do’ list which tells me to check on the progress of any refill.

I make appointments.  The list has 20 specialists between us.  They vary from twice a week to once a year.  A psychologist once told me not to let the appointments interfere with “preferred activities.”  So there is a matrix with the impossible task as the ultimate goal.  Except none of the 20 doctors know about the other 19.  Or the full time job.  Or the high school honor student’s schedule.  Or swim practice.  Or theater.  Or voice lessons.  Nor do they care.  And I get it.  They can not hear everyone’s story. So when I call to try to carefully place that appointment in a very tiny window of time, they are always unhappy with me.  They think I’m being unreasonable.  And maybe I am.  But, I can’t imagine why I wouldn’t TRY to get everything to keep her physically healthy and still let her be a teen.

I deal with unexpected schedule changes.  Like when I carefully stack 2 appointments in one day, and then one has to move to right smack in the middle of a week long summer internship that was planned forever ago, because now instead of two doctors with Friday hours at the same facility, one has Monday and one has Friday.  No overlap.  So I erase,  and juggle.  Except I’m not great at juggling in a literal sense, so one got cancelled and hasn’t been rescheduled.  Actually two… because summer can not be ALL about doctors.  Nor can every day off.  But, neither can every day at work or school…

“What do you mean you’re not going to reschedule today?”

So much of our condition relies on screening.  Early detection is a blessing.  It is the key.  It is also tedious and time consuming.  It is possible to be grateful and overwhelmed simultaneously.

So much of this is case management.  And, when last I checked my master’s degree is in education, not medicine.  But, with no one to coordinate care I have to guess a whole lot.  I have to decide if 9 months will be ok instead of 6.  I have to decide when to push the doctor for more lab tests when the fatigue won’t quit and the thyroid is ok but the spleen…eh, no one is quite sure about the spleen…

And there are doctor’s whose pride won’t let them return a call because I haven’t seen them recently enough.

There is the genetics appointment lingering again.  Because maybe Cowden’s wasn’t the WHOLE answer…

And the “normal people stuff”  like the seemingly never-ending root canals because my stress is played out in the jaw clenching that overtakes the episodes of sleep. That is on the occasions everything is calm enough for me to make it to my bed.

Or the foot injury.  The “rare” lisfranc ligament partial tear.  Close to 6 months later.  Not a soul wants to hear me tell the story again.  No one wants to believe that it still hurts badly enough that I haven’t take a real walk since last fall.  I’m not lazy.  I’m horrified by the state of my body in the absence of real physical activity.  I am trying to be patient.  My patience is running out alongside my sanity.

And the IEP.  Oh, the Individualized Education Plan… and the meetings.  Over and over and over again…  Meghan is on the waiting list for a service dog.  She has PTSD and generalized anxiety disorder.  The dog is coming.  The process is wearing me out.

I am a lot to take.

I am often “difficult to work with.”

I hold myself and others to a high standard.

I am intense most of the time.

I am tired.

I am so very tired of fighting all the time.

There is no choice though.  No choice at all.

So, in the mean time I will be here.  Strengthening my resolve.  I may bend, but I will not break.  I will continue to strive to show my girl that she can have a rare and currently incurable disease, while excelling at school, at sports, being active in the community, and being a generally decent human.

Last month we walked out of a screening appointment.  It was not critical.  It was an hour behind.  We rescheduled.  Also a valuable lesson.

I am tired of fighting, but I am far from done.

As my Grandfather said, I am “difficult to work with.”

I am also loved.  I am flawed.  I am also forgiven. 

 

When I have no more, I put my hands together and ask… and I am never disappointed.

Through God’s Grace alone we remain…

#beatingcowdens

A Drop in the Bucket…

As of today, my records show 78 appointments between the two of us since January 1st.  That’s 148 days.  More than one every other day.

78 scheduled appointments.  Some appointments are close and some are far.  Some are routine, some are emergent, some are therapy and some are follow up.

Every single one of them interrupts or controls a day, depending on its location and wait time.

So what do you do?

This is reality.  This is chronic illness x2.  This is what it is.  These appointments are non-negotiable.  They also can easily become all-consuming.

What do you do?  How do you keep it in check?  How do you keep it from swallowing you up?  How do you keep it from winning?

I thought I knew.  I though I had it all mapped out for a while.  But, the oppressive weight of chronic illness can be crushing.

It happened slowly to me.

 

I was carrying a bucket.  Every appointment was a drop.  Every hour wasted in traffic was another.  Every time I picked up the phone to fight a medical bill, every time I juggled a full time job, and the full-time extra curricular calendar of my teen, the bucket just got more and more full.  Now, I carry the bucket.  All the time.  Everywhere I go.

And it’s full.  Really full.

So I try not to spill.

But there isn’t much room for anything else at all.

I’ve said no to one too many events.

I have turned away from one too many dinners.

I have declined get-togethers because I just don’t feel like I can breathe.

I spend the whole day with this bucket.  My mission is to keep it from spilling.  It holds too many things too valuable to spill even a drop.

I say out loud that I am fitting chronic illness into our lives.  But, many days I feel like I am fitting life into our chronic illness.

I am not complaining.  There is so much I am grateful for, and so many things I would never ever change.

I am however simply trying to keep from drowning in my bucket.

Working on my balance…

#beatingcowdens

 

Experience Dictates Your Reality

I usually have a plan when I sit down to write.  Typically there is a topic, or a concept in my mind or on my heart.  But, as is clearly evident by the two months of silence on this page, I’m struggling.

Having a PTEN Mutation, and being the mom of a young lady with a PTEN Mutation of her own has been nothing short of life-changing.  Things that happen in our lives change the course of our travel along the path.  That statement is not even intended as a judgment, just a factual statement that most people can relate to.

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Sometimes when we are talking in the car, my girl and I play the game of “what if?”  It can be a dangerous game, or it can be cathartic.  For us it is typically the latter.  No matter how many ways we can come up with that things “would have” or “could have” happened, we are always sure that we have become who we are because of the turns our road has taken.  And, on most days, we like ourselves.

Experience does dictate your reality, though.

perception-vs-reality

Two or three people observing the same thing will interpret it to some extent based on the experiences that have brought them to this point in their lives.  That is neither a bad thing or a good one.  It simply is.  And to understand each other as humans, it is something we need to recognize.

One of Meghan’s Christmas gifts was a T shirt that says “Humankind- be both”

humankind2

It was chosen for her deliberately because it is something she believes and aspires to.  being in a high school experience where she meets many young adults from a variety of life circumstances, she is developing an even deeper understanding of the situations in our lives that create who we are.  She is happy there.  She is accepted there.  Life stories are understood, and often unspoken.

Where we have been, what we have seen, and what we do with those experiences are such an integral part of our lives.  Many of them we can control consciously and fully, while others take a lot more work to harness.  The hardest things to get control of lie deep in our own hearts and heads.

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The day after Christmas we made the gut-wrenching decision to put down our Lucky girl, a lab/ border collie mix that had been a part of our family since Christmas in 2005.  There was sparsely a memory Meghan had that did not include Lucky.  And the absence of the clicking of her paws and her animated noises leave our house a way too quiet.

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We have our beautiful April, a mutt rescued very quickly after our beloved Allie passed away in December of 2014.  Lucky needed April to distract her from her own broken heart.  And she did an outstanding job.  April is finding herself now, as an “only” while we all navigate through a new phase of life with one dog.

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If you have lost a pet you understand the gravity of the loss and how it changes the dynamic of the family.  If you have not, you’ll have to trust me.  Or not.  It’s up to you.

Three of us, well four if you count April, are grieving Lucky’s loss.  Yet, we are all doing it differently.  Lucky lived here, but she was Meghan’s dog.  She came in to our lives when Meghan was only 2.  Experiences were different for all of us, yet the depth of the loss runs deep.

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Experience and personal reality are intimately connected.

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Almost two weeks ago I fell at work.  Hard.  It was so frustratingly avoidable.  I caught my foot on a child’s chair.  My brain and my feet were not communicating.  There was nothing to break my fall except my shoulder as it hit the base of another chair.

I stayed on the floor for a few moments trying to recover.  Looking up at the faces of 30 third graders gasping “Are you OK?” I knew it was essential that I at least look the part rather quickly.  I got myself to my feet, mumbled an independent assignment for them and got to the phone to get some help.

After completing paperwork and gathering some ice, I was sent out to seek medical attention.  After spending a few hours having x-rays of a foot, two knees and a shoulder, I was sent home to ice and rest.  I was also told to contact my plastic surgeon.

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No it was not a disfiguring fall, except part of what broke the fall was also the right breast implant.  The one just under the still slightly off-color shoulder.  It felt very “off” and it was impossible to ascertain whether the fall had somehow caused the implant to rupture.  I needed an MRI.

I could not get any associate of my surgeon to physically see me.  The fall was on a Tuesday, and my doctor ONLY sees patients on Monday.  So I was left to schedule the MRI and wonder.

The looming appointment was not nearly as bothersome as the wonder.

People fall every day.  Depending on age, physical fitness, the circumstances of the fall, they will all have a different reaction. If you have a PTEN Mutation, which led to a breast cancer diagnosis and a double mastectomy at the age of 38, and that double mastectomy was followed by silicone implants, which already had to be replaced in 2016, and you fall on and near one of the implants from a height of about 5 foot 7, well your reaction might very well be to worry about that implant.  Mine was.

I just wanted someone to look at it.  I wanted someone to tell me the visible changes were not to be worried about.  But, no one would do that.  So I was left alone, home healing, with full access to the internet.

DANGER.

While I have learned a good deal of what I know about my body and Meghan’s through skillful sorting through ‘fake’ and ‘real’ information, equally available on the internet, I now had plenty of time to investigate what had been a mention weeks earlier in one of my on-line support groups.

Breast implant associated anaplastic large cell lymphoma, or (BIA-ALCL) is something I never heard of until it was brought up in discussion by another patient with Cowden’s Syndrome.  I now had all the time in the world to fully investigate and I was getting furious.  While I do not put my faith fully in any source, I will link in FDA pages here.  A careful eye will notice that most links when searching this condition are plastic surgeon sponsored.

https://www.fda.gov/medicaldevices/productsandmedicalprocedures/implantsandprosthetics/breastimplants/ucm239995.htm

https://www.fda.gov/medicaldevices/productsandmedicalprocedures/implantsandprosthetics/breastimplants/ucm064106.htm

For those of you interested, clicking the links above is likely to give you information you never heard before.  Unless maybe your surgeon was much more forthcoming than mine.

I was relieved to learn I had the “smooth” textured implants, the ones least likely to lead to BIA-ALCL.  I was disturbed to read the FDA recommendation the implants be evaluated via MRI 3 years after initial surgery and every 2 years after.  No one had ever mentioned an MRI to me post mastectomy.  Ever.  But that shouldn’t be a surprise.  A complete search of all my paperwork from the initial implant surgery and the revision failed to uncover ANY documentation of ANY potential additional cancer risk.  Being diagnosed with a condition that had greatly increased my likelihood of so many cancers, I may have thought things through differently.  Maybe I would not have.  But regardless I would have felt as though I had made informed decisions.

Now I was just mad, hurt, and violated.

And, I was dealing with a trauma to the area surrounding this foreign object in my body, causing visible swelling, with no one to calm my angst.

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By the time I got the call post-MRI that there was no rupture, I also read the report that said basically nothing other than the stability of the implant was evaluated.  A wordy disclaimer.

Risk of BIA-ALCL is rare.  There is no documentation as to whether our subgroup is any more affected.

It doesn’t matter anymore.  I will at some point in the not so distant future move to have these objects removed.  “Superfluous tissue” is what my mom called her breasts 22 years ago when they were removed.  She never had implants.  She’ll be 70 next month and is feisty as a firecracker.

I think I found my motivation to stay thin and spry.

Our experiences influence our reality.  All this from an unfortunate fall.  Even as I sit here almost 2 weeks later, the pain in my foot telling me I’m not sure there is not an un- diagnosed fracture there, I have to wonder if that fall was that unfortunate after all.

I decided finally on a primary care practice.  I stopped looking for one who knew or cared to know anything about Cowden’s Syndrome.  Instead I found one capable of screening me for the things any 45 year old needs to be screened for.  I think I may finally be at peace with that decision.  I had “well-visit” bloodwork Saturday, and I will have my visit with the staff’s FNP on Wednesday. I will talk to her about my basic asthma and allergy medications, as well as the script I usually hold for occasional migraines.  I suspect all that will go well.

Then I will talk to her about the fluid in my right ear.  The fluid that has been there for at least 5 months.  An ear ache in early September brought me to urgent care.  That repeated 3 more times, in October, November and December.  Each time there was an antibiotic.  Once there was a referral to a sub-par ENT who have me a steroid.  Sometimes the fluid leaks out of my ear while I sleep.  Sometimes I swear its finding it’s way out of my eyes.

My mother has terrible sinus problems.  She has since she’s been my age.  It’s probably rotten genetics not PTEN related.  Mucinex keeps me away from infection and eliminates the pressure for 4 or 5 hours at a time.  But this many months of Mucinex has a tendency to make the spleen angry.  And I don’t want to get sidetracked talking about those splenic lymphangiomas.

I want an MRI of the sinuses.  I want to know nothing sinister is going on.  Then I want to see the ENT who did the surgery to save my voice 2 years ago.  I’m hoping we can get that process started on Wednesday.

The calendar is foreboding.  We are heading into a doctor cycle – both of us.  And while I am grateful for the lull, I get familiar feelings of anxiety and dread as I lock the long afternoons in traffic into the calendar.

My daughter has the formal diagnosis of Post Traumatic Stress Disorder secondary to medical trauma.  There are people who like to pass judgment on that.  I wish they wouldn’t.

Her service dog will come eventually.  People will have a lot to say then too.  I won’t notice because I will be exuding gratitude at all times.

Everyone you meet is fighting a battle you know nothing about.  Be kind always.

The struggle is real.

Experience dictates your reality.

The trick is to realize while everyone leads a different life, that reality is the same for all.

Humankind – be both.

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#beatingcowdens