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…

Recovery

never give up

 

 

Recovery.

We should be professionals around here.  We should just get up, get going and move on.

But we are human.

We hurt, inside and out.

We get tired, and lonely.

We understand the tired and lonely that others have too – but some days it doesn’t make ours better.

Some days its hard to look at things from someone else’s point of view.

And that’s OK.

This one is a favorite of a dear internet friend :-)
This one is a favorite of a dear internet friend 🙂

Meghan is full of exhaustion and pain and conflicting emotions.

It’s annoying to realize you blew your whole summer at doctors and in surgery.

Thankfully we snuck in that Disney trip.

I can, and I do, take solace from my Facebook friends- the ones I know for real, and the web of Cowden’s survivors I have become intertwined with.

She has a smaller network.  Mostly because I don’t think she is capable of realizing the effect she has on the lives of so many others.

there is no pain i cannot fight

Yet, she is my hero.  And my rockstar.

I shuffled her around these last few days a lot more than I wanted to.  But, she likes to stay close by me when she is hurting.

So yesterday we picked up the car.  Apparently the “Magic Wand Guy” (Field tech) ran out of pixie dust.  He declared my car “not broken.”  Ironic because 2 weeks ago the same shop who held it for 10 days said they couldn’t fix it.

It’s definitely still broken.  On to the arbitration with the Better Business Bureau.  Just in case someone thought we might rest.  No worries.  Gloves are on.

She went with Felix and I for our physicals last night.

Then this morning, she went to work with me for a bit, and to pick up some of Daddy’s medical records.  (Really WHAT was I thinking staying close to home for a doctor?)

She is tired.  But she smiles.  And she hugs us.  And she asks for pain medicine.  And she wiggles her fingers.  And she looks at her pool, and the calendar, and she feels the inevitable.

I can’t stop it.  No one can.

So we keep busy.  We rest.  I stay close by.  We giggle and make jokes.  If I had to “lose” a summer, I couldn’t have lost it with a better young lady!

Recovery.

No worries – WE GOT THIS!

no one sees

 

Our Digital Footprint

Tomorrow Felix and I will be married 13 years.  While in some ways 13 years seems like a long time – in other ways I sparsely remember that there was life before I married my best friend.

And as compatible as we are, anyone who knows us is aware that we are as different as day and night in so many ways.  One of those ways is the internet.

I facebook.  I blog.  I Email.  I communicate with people I know well, and people I have never met.  He doesn’t.  He communicates live and in person (and sometimes on the phone) with the small circle of people he loves.

In the world of digital footprints, I have to imagine that mine and Meghan’s are substantially larger than that of my husband.  And with that knowledge comes the need to sometimes remind myself of what I already know – there is no privacy on the internet.

digital footprint 3

We live in a suburb of a big city – unique in the fact that 6 degrees of separation can easily be played – and usually can serve to connect “natives” in far less than 6 tries.

That means, that every post, every writing, every thought, every sentiment that I choose to make public will be read by people who know me, people don’t, people who like me, and people who don’t.

I have begun to “clean up” and clean out my private facebook account.  Life is about balance.  My husband wonders why I want to stay connected to people I don’t see or even know.  Well, many of them hold a special place in my heart – whatever the reason. Many are very dear to me.  But, some I really wouldn’t know if I passed them on the street.  Do they care when my girl is at swim practice? Or that my anniversary is tomorrow? Or that we have a new church?  Or a new school?  The answer truly is – probably not.

So how does all this connect to Beating Cowden’s?

Well, here’s how I see it.  I started this blog to raise awareness of a Rare Disease. – one that has changed my life and that of my daughter, and my whole family.  I wanted to get the word out that this 1 in 200,000 disorder was wreaking havoc on our lives, and we are working to control it.

Then, as I became more educated, I wanted to expose people to the world of Rare Diseases.  The reality that we are among the lucky ones has been a potent lesson.

I want people to know that Rare Diseases are not always visible.  That even though we don’t “look sick,” the suffering is part of daily life.

These realities have made some people uncomfortable, and have brought some others closer to us.  Lessons learned.  Life changes.

digital footprint 2

So when I blog, I try to focus on my own experiences, but without fail they are intertwined with Meghan’s.  What can I do to protect her?  Not too much.

She wants this blog to continue.  She is proud to be part of an awareness raising effort.  So, I have given her editing privileges  and the constant reminder that once I hit “publish” I can not take it back.

I think in some ways this level of awareness will help her – when she takes more control of her own digital footprint.

“Beating Cowden’s” is about our daily struggles – sometimes with doctors, our bodies, medical tests, surgeries, and just people in general.

I have thought so much about privacy, and how it is almost a work of fiction these days. I have worried about hurting people’s feelings on my private page – but I am starting to get over it.

If you make a conscious choice to put yourself out there – there has to be a purpose.  And, you have to be willing to stand behind every word you type.

There is no privacy on the internet.

digital footprint

Beating Cowden’s will continue as a means to raise awareness of a virtually unheard of Rare Disease.

My own personal Facebook page will take a bit of an overhaul in the next few weeks.

Don’t take offense.

I am just getting our feet ready for spring!

Facebook – and other lies we tell ourselves

I went to a wake this afternoon. It seems to be something I have been doing far too often lately.

This one was for an old friend.

Let me clarify – he was far from old.  As a matter of fact he was just 43.  But he was a friend from high school, which apparently was a long time ago.

laugh a little louder

In high school we had a thriving youth group at my church.  We spent so much time together, they became extended family.  We came from different schools, and our ages ranged – but there was a love and peace and acceptance among us that was really something spectacular.

We met at the church sometimes.  We watched movies, played games and talked.

We sometimes went on retreats- Koinonia, Pennsylvania, Virginia.  We traveled to youth gatherings.  We laughed, we cried. We held each other up.

youth group

But time got in the way and years passed.  College led into grad school, and husbands, and wives, and jobs.  Then there were children and houses… and, you know how it goes.

Before you realize it – it has been 10, 15, 20 years since you have chatted with a friend.  Nothing ever happened to cause the separation, just life – getting in the way of keeping in touch with those we love.

I met up with him last year, at the wake for his mother.  We talked for a while – like old times.  Years seem to evaporate in the presence of those we truly love.  You see he was one of the “good guys,” and possessed the capability to light up a room with his sense of humor.  He showed compassion for everyone, and had the ability to make you want to talk to him.  I left that day, not overly confident we would see each other again soon, but still missing my high school youth group, and the security that the net of dear friends had woven for me through some trying times.

So when the news came this week that he had died.  Without warning or explanation.  That he had left behind a wife, 2 children, his dad, 2 brothers, 2 sisters-in-law, and their children – I was absolutely stunned.  That’s just not the way its supposed to go down.  He was one of the good guys.

So I found myself today in a funeral home in New Jersey having an impromptu reunion with my high school youth group.  Most of us are “in touch” via facebook.  I read an article here, see a picture there.  I catch a quick status update from time to time.  Sometimes I click “like.”  And somewhere in my head I have justified that this constitutes remaining in touch.  I was appalled at myself for even allowing the illusion to fester.  Don’t misunderstand me.  Facebook, and its social networking concept is fantastic.  But it does not – nor can it ever- replace conversation, interaction, a hug, or – as we used to say in high school – a “nose pet.”

facebook-head-featured-size

Facebook has been a blessing for me in so many ways.  I have “met” so many other Cowden’s Syndrome patients.  I have learned about, and shared experiences with others who suffer from rare diseases.  Meghan has connected with two young Cowden’s friends – one on a different continent.  But it still doesn’t fix the inherent problem with being able to look at a computer screen and delude yourself into believing you are “connected.”

I don’t know what the answer is.  I, like all of my friends, lead an incredibly busy life.  But I do know that leaving all my connections, and contacts with the people I love to facebook – reducing them to “likes” on a page, is not the answer.  I looked around the small group gathered in the room, and I felt genuine love for these people.  I enjoy their company.  I find them funny and engaging, just as I did some 20 plus years ago.

As we reflected on our friend – we did our best to catch up.  Then we hugged and went our separate ways.

I hope this will serve as a wake up for me, and that one at a time I will at least find the time to send an Email, or make a call.  Life is busy – but there has to be some time – just a few minutes.  There has to be.

We can’t be destined to meet again only at the next wake, when another one of the good guys is gone too soon.

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Mourning his loss… hoping he is getting plenty of “nose pets” in heaven.

Riding a bicycle

life is like a bicycleI was looking for something to describe my mood today, and there it was.  Simply stated by a brilliant man, and there on the “Perpetual Optimism” Facebook page.

We keep going because we have to.

We keep going because if we DON’T, then we will fall.

We keep going because it is the only way to keep our balance.

I am tired.  Tired of running, and sorting, and organizing and doing – all the time.  Tired of working full time, being a full time Mom, and being a full time researcher, full time medical billing secretary, and a full time organizer… of all things.

I am not perfect at any of those jobs, and that frustrates me more.  I want to do them all perfectly, but there is precious little time to pause for fear I might lose my balance.

I am grateful.  For my husband and my daughter.  I was never very good at riding a bike.  Now that I do it full- time, they are my training wheels – always ready to hold me up… just in case.

“Keep Swimming!”

There are people you meet in your life – and even some you don’t actually meet… that make a world of difference for you.

I saw this today and it made me think of some of the people I have met over the last year.  Some of them don’t talk to each other any more, but I talk to them all.   It’s just who I am.

Today I couldn’t get a phrase, shared by one of those on-line friends, out of my head.

This has been a tough week for me.  It happens to the best of us.  I know I am usually pretty positive, but this week it has been harder than normal.  So when I shared some of my struggles she said to me…

I thought about it for a while.  And you know what?  It made perfect sense.  She has had plenty of struggles of her own.  Actually, she has had more than her fair share, but she brings it all to the table in the Cowden’s support group.  She shares her ups and downs, her struggles and celebrations, and she just keeps right on swimming.

I think, to some extent that is what we have to do.  Look it in the face, whatever it is… take  a deep breath and keep on swimming.

Today is my birthday.  I turned 39.  And I am proud to say it.  I have no intention of staying here either.  Next year will be 40, and so on and so on.

But with my birthday comes a flood of emotion.  This is just over a year since my Cowden’s Syndrome diagnosis.  It has been just over a year since mine and Meghan‘s lives were forever changed by the news that we carry a PTEN mutation, and that our bodies are inclined to create benign and malignant tumors – all over.

Keep Swimming…

It has been eight months since the “prophylactic bilateral mastectomy,” which turned out to be a life saving operation when the pathology revealed stage 1 DCIS.  I have almost adjusted to “the new girls,” but with each change of season comes the realization that the landscape of my body is forever changed.  Old familiar sweaters need to be replaced.  Nothing is quite where it used to be.

Keep Swimming…

It has been six months since the  complete hysterectomy.  The one Cowden’s Syndrome called for – way before its time.  So as my body celebrates 39 – my hormones clock in somewhere around 55.  And with no hormone replacements in the cards, we are learning to get used to each other.  Not uncommon for me to go from a turtleneck to a t-shirt.  Good thing there aren’t too many clothes to pick from.

Keep Swimming…

My birthday has been charged with emotion for years.  Ever since we lost my sweet cousin Meghan to Leukemia at the age of 6, it has been a harder than normal day.  Despite my best efforts, at some point emotion overtakes me.  I have always been grateful for our deep connection – so deep that I named my daughter for her.  But, somehow 21 years fade and the feelings are that of yesterday.  Oh, how I miss her.

“Angel Meghan” – 1987

Keep Swimming….

My Meghan faces scary appointments in the upcoming months, as we determine if her thyroid nodules are growing or stable.  Her health is always a tenuous issue, but her smile and positive attitude make it easier to press on.  I wait for word on my spleen and my kidney… silent benign tumors that will either prompt more organ removal… or not.

Keep Swimming…

GiGi fell during the storm.  Two weeks ago today we were very scared.  Today she walked with help around the dining room table.  Her feet still work, she was excited to discover.  Surely this is a realization worth celebrating.  Happy birthday to me.

Keep Swimming…

We went to Midland beach today with a few small things.  A donation a friend from New Jersey had sent, as well as a few things Meghan and I picked up this morning.  Sometimes paying it forward is the best birthday gift you can give yourself.  If everyone gives just a little – time, money, supplies – whatever you can… it makes a world of difference.  It matters.

These people.  The people of Staten Island, and Breezy, and the Rockaways, and all the other coastal communities devastated by Hurricane Sandy,  they certainly are showing their ability to…

…Keep Swimming…

Such an intense day.  At times I laughed.  At times I cried.  At times I was proud.  At times I was sad.  Life is changing every single day.  The ones you love, the places you are comfortable, and the people you are comfortable with – all transient.

I looked over my blog today.  It has truly been a journey.  And if you got this far you are reading my…

Who knew I had this much to say?
Amazing you people find this interesting! 🙂 But I am grateful to have you.

Tonight I am reflective.  I am enjoying my family and my wine.  I am thankful.  And I am tired.

It has been a long year.  But a productive one.  A year unlike any I had ever imagined.  The journey here is far from over.  I am thankful for my close friends, and my cyber friends.  I am thankful for those of you who read, who I will never know.  I am thankful for reality checks.  I am thankful for celebrations, and laughter and tears –  for they all make me who I am.

This is definitely a marathon, not a sprint.  Cowden’s Syndrome, like life, requires patience, flexibility, and endurance, as well as a well-rounded view of reality.

I am trying – with a little help from my friends.

Fighting My Way Out of the Cage

A few days ago I wrote about my dog Lucky – biting through the cage.  Well she got her wish, and she is a free dog now.  Free to roam around my house, lay where she wants, and drink when she wants.  She is much calmer and happier now.  It doesn’t take much to make her happy.

Why then can I not take her lead?  Why am I living in the cage of my own thoughts? 

My husband, he has the right idea.  He worries only when it is absolutely necessary.  I worry about making sure the stove is turned off.  He worries when the house catches fire.  Maybe it’s a male/ female thing.  Maybe it’s my controlling OCD.  Who knows?  What I do know is he is MUCH healthier than I am mentally.

I am still quite sane, but admittedly neurotic.  Some say it was inevitable after the year we have had.  I think it stretched back much farther.  I could say parenting a not so healthy child has done it, but if I am honest, I think I have always been this way.

I just read a Facebook friend’s post.  She talked about her brain continuing 24/7 even when she asks it not to.  That’s EXACTLY how I feel.

I am sure the Cowden’s Syndrome, the mastectomy, the breast cancer, the hysterectomy, the tumors on the spleen, the cyst on the kidney, and the constant screening tests aren’t helping.  And those are just mine – not Meghan‘s!  We average 3 doctors a week, usually at least 2 on the schedule and a pop up.  Each one seems to look, poke and prod and not offer a single answer.  Then the tests lead to more tests.  It’s a bad cycle we are in here.  So then I spend my spare time researching – thinking maybe I can find the answers they don’t know.  I end up just as clueless and thoroughly exhausted.  Sometimes you have to stop biting at the cage, realize the answers aren’t there yet, and realize you have the power to let yourself out.  I am “luckier” than my dog Lucky – no pun intended.  I have the benefit of being able to free myself.  I just never seem to get it quite right.

I am going to try that one day at a time thing again.  I am going to try to concentrate on all the many things that have gone right.  I will TRY to worry less when my daughter’s WBC is frighteningly low, while I wait for the retest.  I will worry less about West Nile Virus, and just try to treat the 8 mosquito bites on the leg of my immune compromised kid.  I swear I will try.  It’s not going to be easy though.

When you see me in a fit of worry, feel free to give me a “cyber” smack into reality.  ONE DAY AT A TIME!

TODAY – good things happened.  I got through the baseline screening colonoscopy and endoscopy.  The colonoscopy was completely CLEAN!  I do not have to go back for another 3 YEARS!  Beats the heck out of the every 6 months they were recommending for Cowden’s patients.  Also, my CLEAN scope frees up my little girl for a while.  As long as mine stay clean they won’t start screening her until she is at least 18.  Breathe.  Some minor biopsies on the endoscopy but the doctor is expecting a CLEAN pathology.

For me, for my daughter, for my husband, and for ALL of us who are fighting our way out of the cage.  We can do it – one day at a time!