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

 

 

 

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

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.

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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”

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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.

xray

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.

breast mri

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.

humankind

#beatingcowdens

 

 

 

 

 

 

No Excuses. No Apologies.

Recently I asked that Meghan’s “Present Levels of Performance” on her IEP be updated.  She no longer receives many services, but I find great value in keeping this section current.

There is a great deal of misunderstanding involving Individualized Education Plans (or IEPs) and many people feel only children who struggle academically have an IEP.  This is just not true.

My daughter has had one in place since Kindergarten.  She has consistently maintained high honors, and as a matter of fact was Salutatorian of her 8th grade class, and is in an intensely challenging International Baccalaureate program at her high school.

IEPs by definition, are to “Individualize” the Education Program as needed.  Meghan’s needs are not academic, as much as they are residual connected to the Cowden’s Syndrome, the PTSD, and the medical trauma.  The resulting anxiety affects every area of life, and is far deeper than “teenage angst.”  We work extensively outside of school to address this in many ways, but sometimes we need the school to be on the same page.

Much like you give a medical history to a doctor when you see them for the first time, and you update as situations change, the IEP is to be fluid and updated as changes occur so all personnel will be aware of Meghan’s needs.

I make a habit on the first day of school of copying a few key pages of the document and giving it to her teachers.  Even though they have access, and technically it is their responsibility, I am also a teacher.  I get the pressures placed on us.  So, I make their lives easier by giving them what they need and an invitation to reach out to me with any questions.  Her teachers are historically receptive and appreciative.

This year I was reviewing that section on the document realizing how much was no longer accurate, and how it should be more detailed.

I sat with Meghan to write the summary below:

Meghan is a 15-year-old sophomore in the IB program at School.  Academically she is consistently above average in her classes, attaining high honors every marking period for the 2017-2018 school year.

She is a student athlete as well, participating on the School varsity swim team, as well as Trident Aquatics, a 12 month competitive swim program on the Island.

Meghan has several medical diagnoses.  The most far-reaching is “Cowden’s Syndrome” a mutation on the PTEN (tumor suppressor) Gene, causing benign and malignant tumors as well as vascular malformations.  Recently PTEN mutations have been correlated with low levels of (infection fighting) immunoglobulins, which Meghan also suffers with.

Because of the low immunoglobulin levels Meghan has frequent infections that often require antibiotics for resolution.  She suffers with gastrointestinal distress with each course, and needs to avoid gluten and soy.  She also has an allergy to dairy.

Meghan’s medical challenges are far-reaching.  She has had 18 surgeries, 8 of which have been on her right knee.  There was an arteriovenous malformation (AVM) in that knee.  While it has been controlled, the long-term effects will last forever.  Meghan has leg and foot discrepancies on her right side.  The blood was restricted from flowing to her right foot for so long, that it stopped growing 6 years ago.  The left foot is a full size larger than the right foot.  That right-sided weakness has been repeatedly treated in physical therapy, but still presents as a struggle with stairs, and long walks.  While she endures these activities, they can cause pain and excessive fatigue, and extra time may be necessary between classes located far apart.

Meghan had her thyroid removed in 2014 and the resulting need for synthetic medication has yet to be regulated.  Her current endocrinologist follows her 4 times a year, adjusting, tailoring, and trying to balance her levels.

Meghan had 2 D&C procedures during 7th grade.  Those procedures yielded precancerous tissue in her uterus and prompted the need for birth control pills to try to stop the cellular growth.  Those pills have also been difficult to regulate and balance.

Meghan has been hospitalized countless times in addition to her surgeries.  She has also undergone over 30 MRIs and close to 10CT scans, each requiring IV.  She spends countless hours being poked and prodded at doctors, monitoring her cancer risks.  She is acutely aware of her mortality at an age when most teens are barely aware of their social interests.

In the spring of 2017 Meghan was diagnosed with Post Traumatic Stress Disorder, secondary to extensive medical trauma.  She was also diagnosed with major depressive disorder.

In the fall of 2017 Meghan began to develop panic attacks.  Subsequently, she has also been treated for panic and generalized anxiety disorder.

She sees a social worker weekly and has guidance on her IEP in school.  She sees a psychiatrist monthly who manages the medication, which currently consists of and antidepressant and another script for panic attacks.

The panic attacks were well controlled for a time, but flare up in acute anxiety.  This summer saw several severe episodes.  We are working together to help her through all of this.

Meghan is waiting for a service dog, which should arrive in the next 4-6 months, to address the PTSD.  In the mean time, we are teaching strategies to deal with necessary stress, and tools to eliminate unnecessary stress.

I presented this document to the team to update the IEP.  I was a little startled when I was met first with a challenge on the diagnoses.  No problem I told them.  I would send the doctor’s notes.

I love her school, I do.  But, I was in fact also told “She doesn’t LOOK sick”  and “She doesn’t LOOK stressed.”  While I had to breathe a few times before responding, I came up with “You’re welcome…”

We’ve worked quite hard on all of that.  My girl has goals.  Life goals.

Last week Meghan was approached to remove the section regarding the D&Cs from the document above.  She declined.  She was pushed, and told the information was “far too personal.”

Forever practical, Meghan reminded them the document was about her, and should include factual information.

Again pressed, she reminded the staff she helped write the document they were holding.  She wanted and NEEDED her teachers to understand the validity behind her anxiety and PTSD symptoms.

The final time they told her the information was too personal she reminded them that she had done nothing wrong, and had nothing to be embarrassed about.  Meghan is a factual child.  She likes actual truth being reported.  She knows better than to be embarrassed about truth.  She knows ugly truth is a real part of life with Cowden’s Syndrome.  She also knows that secrets give power to things that don’t deserve it.

These things happened to her.

She did not ask for them.

She did not cause them.

She will not hide them.

She will not apologize for them.

She will not let them define her.

But the things that happen to us do change us.  HOW they change us is the only thing we can work to control.

I will continue to work the Mom end to get this updated.

I am beyond proud of her growing confidence, and her desire to educate.

I am proud of her desire to be a scholar and an athlete in spite of all the adversity.

I am proud of her respect for the clock as she grows as a swimmer, and her desire to be the same as everyone else, by beating the same clock.

My girl is, and shall remain

#beatingcowdens

And that is why we continue to work on the journey towards treatments and a cure.

Please consider joining us or making a contribution.  You can reach us at jfrg.pten@gmail.com

Double Edged Sword

I remember as a young girl, and even a teenager, having the phone pretty much attached to my ear all the time.  I remember being so excited when we got a cord long enough for me to bring the phone into my room.  I remember calling people, and being so frustrated at busy signals.  I don’t remember much of what I talked about for all those hours, but I liked it.

When I went to college, I went with an electronic typewriter with a 4 line display.  It was state of the art.  In my dorm there were computers in the common area and people were just beginning to really Email.  There were no cell phones.  We knocked on each other’s doors and spread word through friends when we were getting together.

It’s now been 23 years since I graduated from college.  I’m coming to understand the generations before me.  Perhaps some of the discontent with things changing was a foreboding sense of where it was leading.

I don’t go far without a cell phone in hand.  I “google” like it is my full-time job.  I’d rather text than call, and I am guilty of putting only the “perfect” images on my social media accounts.  I “keep in touch” through photos of friends children.  Some of these children are teenagers now.  Many of them I have never even met.

I wish “Happy Birthday” on Facebook after it reminds me, and rarely send a card.  I delude myself into feeling “in touch” when really we’ve lost all track of each other.

I’m watching a generation grow that thinks its acceptable to post all kinds of photos of themselves, inevitably trying to look older than they are, in a forum where nothing is truly private at all.

I’m not saying we had it all correct by any means.  I was guilty as the next of trying to impress “popular” kids, or to fit in.  There were mean kids.  There were those who isolated.  We passed notes.  But, we didn’t post our comings and goings for the world to see.  I was blissfully unaware of who went where, unless I was there.  If we took photos it was the real deal.  There were no filters.

The internet, and the social media craze that has followed is the proverbial “double-edged sword”.

Living with, and having a child with, a rare genetic disorder means I have to do most of our research here.  Most doctors lack the time, the knowledge, or the desire, to entertain my instincts.  I may not be a doctor, but I am an expert on Meghan.  I have been able to learn through trusted medical journals and intelligent internet connections, more than I would have ever been able to learn 25 or 30 years ago.

Meghan has had medical problems since day 1, and I have had the privilege of advocating for her since then.  I have “met” parents through online support groups, and have soaked up their advice like a dry sponge.  Parents go out of their way to help other parents, and it is a community like no other.  Without the internet I would have been traveling this journey largely alone.

There were multiple diagnoses before the PTEN Hamartoma Tumor Syndrome (Cowden’s Syndrome) diagnosis in 2011.  And, truth be told, I suspect there are still a few more coming our way.  During each step of the journey I have been able to connect with medical professionals and parents in ways that leave me forever grateful.

I am skilled at dealing with the insurance companies, the mail order pharmacy, and the collection agencies.  I am on-line so often, printing medical explanations of benefits, or fighting for treatment courses that I know are necessary.

I have become well versed in the laws surrounding Individualized Education Plans, (IEPs) and have secured necessary accommodations for an honor student battling PTSD largely from the fallout of a rare genetic disorder.

We fund raise for the PTEN Foundation, in hopes of one day soon allowing a patient powered registry that can lead us to treatment, and maybe even a cure.

All of this is possible through social media and the internet.

These are the same forums that allow people to think they are “in touch” without ever hearing each other speak.  These are the same forums that allow teens and adults alike to think it is ok to be insufferable or mean because they don’t have to look the other person in the eye while they do it.  It is these same forums that claim to bring us all together, that are causing what I fear is irreparable social damage.  A generation of children who aspire to impossible ideals and feel they are not good enough, are growing up.  They have the world at their fingertips.  Will they have the skills to access it through human interaction?

I don’t know what it is like to live anyone else’s life.  Maybe there are similarities, or maybe my views are odd.  I blog to give an honest account of life in this house, with these challenges, because I too have found comfort in knowing I am not alone.  At least theoretically.

I am always busy.  Sometimes I don’t choose it, and sometimes I choose it without realizing it.  I am so used to being in motion, not having a full agenda is confusing.  It is also very very rare.  My only speeds are “go” and “off”.

Chronic illness can easily run your life.  When every ounce of strength must be used to create the illusion of normalcy, there is not much time to be “normal”.  When you can not predict the health crises that exist daily, or the new ones that crop up at a moment’s notice, it is hard to make plans to do much.

We are a family of 3.  My child is an only child.  She has all the benefits, and all the downfalls of that status.  We have extended family.  I have friends.  Long time friends.  Old friends.   I know I could rely on them if it became time to wave the white flag.  But they are busy too.  And our time will come in a few short years when our children are off on their own.

My child does not have a built-in network.  My child has PTSD, and incredible anxiety.  She can sometimes have an abrasive personality.  But, she has more integrity and compassion in her than just about any other human I know.  You can’t pick any of that up off her Instagram. Or her SnapChat.  To really know her you’d have to talk to her.  The old-fashioned way.

That very network that has allowed me to learn so much, to do so much, and to help so much, has also caused harm.  For both of us.

For me, it represents the easy way out.  Aside from a few support groups, I know people will tire quickly of hearing the same story over and over. So, it is easy to click “like,” post a few comments, and have at least a visual in my head of what’s going on.  But, it also leaves me with feelings of inadequacy.  Why can’t I get us to the beach?  Why can’t I plan day trips with actual humans without fear of having to cancel?

For her, it is a constant reminder of a “normal” life that she doesn’t have.  Whether it’s pain, medical appointments, food allergies, or anxiety, there is an isolation inherent in this world of chronic illness.

She speaks of the “Sword of Damocles” with regularity.  The history channel gives this explanation History Channel- Sword of Damocles (Go ahead, and click the link. It’s a worthwhile read.)  This analogy explains a life hard to comprehend, and impossible to describe.

The internet probably saved us.  Social media brought me to some of the smartest parents, living variations of our life.

Social media altered the scope of human relations with consequences we will see for generations.

The irony of it all perhaps is that this message reaches you through the double-edged sword of the internet.

I’m interested in hearing your comments.

We remain

#beatingcowdens

With all it’s “side effects”

One day at a 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

 

Non maleficence- Meghan’s monologue

Meghan recently had a drama assignment where she had to write a monologue on non-violence.  The teacher appreciated her perspective, and I think it speaks to the long term effects of rare disease, and chronic illness.

I’ve added nothing below…

“A physician’s guiding maximum is non maleficence. Non maleficence means ‘to do no harm.’ And, I guarantee you that screaming at an 8-year-old and burning her neck, all while sticking needles through it, qualifies as the opposite of non maleficence.

 

Then, I was a scared 8-year-old who just found out she had a rare genetic disorder. Now, I’m a 14-year-old with PTSD and a rare genetic disorder that has caused a lot of hell in my life and is never going away.

 

As I look back at this biopsy, I realize many things. One, I’m positive this first medical trauma led me to be fearful of all the medical challenges that have befallen me. Also, I realize that my deathly fear of needles and my PTSD originated on this day.

 

If this doctor had used a non-violent tactic during this procedure, which isn’t pleasant anyway, then maybe my journey would have gone a different route. Maybe I wouldn’t to this day walk into a doctor’s office, see needles, and have my heart jump into my throat.

 

People don’t realize that actions that may seem small to them can have a big effect on someone’s life. As I think back, I realize that if this one doctor had practiced non-violence, then my preconceived notions of pain and fear every time I walk into an examination room might not exist.”

#beatingcowdens