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


With all it’s “side effects”

One day at a time…

Just Another Day “Off”

 We had a day off today, so if you play this game often, you can guess that we spent it – at a doctor!  Because, that my friends, is how we roll.  Except today wasn’t a high-tech specialist or a visit to Manhattan for testing.  Today was kind of ordinary.  Today we were at the orthodontist.

Now, I have made no move to hide my concerns about Meghan‘s accelerated development, but since I have come to the conclusion that I am the only one at all concerned, I am trying to just move along with it as it comes.

We have been with the orthodontist since she was 7.  At the urging of our kindhearted dentist, I was nudged, gently at first, and then… well, it was time to take her to be evaluated.  At 7 she had a rake put in her mouth.  A fixed appliance, similar in concept to a palate expander, but different.  A rake is there to break the tongue thrusting habit.  She wore that fixed appliance for a year, and a removable nighttime retainer for another year.  All the while the progress her teeth and her smile made were remarkable.

So, last month when we were at a routine check up the orthodontist told me to schedule an appointment to have her braces put in.  I asked when, and was told, “soon.”  It was shown to me all the progress that had been made, visible in the computer Xrays, and explained that if we put them on now her wear time SHOULD be 18-24 months. 

Quickly doing the math I asked, “She could have them off before Junior High?”  Thinking in my head how fabulous it would be to have one less worry during the three most awkward years of your life.

He looked at me a bit stunned and asked, “How old is she?”

“She just turned 9.”

He looked at the XRays again.  I asked him if she was too young.  He told me her chronological age really had nothing to do with things.  Her dental age makes the decisions.  Her mouth is ready he told me.

So, we made the appointment and then sat in the car for a long time.  She asked me question after question.  She was curious about my braces, and her Dad’s experience as well.  She wanted to know why I thought it was so good to have them off before 6th grade.  She told me she was scared,  which I said was normal.  She asked me why everything was happening at once.  Why was her body growing so much, why is she ready for braces, why can’t she just take a rest?  She understands really, she always does.  But sometimes she needs the pep talk that we have to press on.  She came around and I turned the car back on, prepared to enjoy one last afternoon in August before school began.

“One more thing Mom.”

I stopped and turned around to look at her.

“Don’t tell anyone at all.  Don’t blog about it.  Don’t tell your friends.  Don’t tell anyone.  I want it to be a surprise.”

She might have just as easily broken my fingers, and barbed wired my mouth shut.  But she was clear.  This was HER secret – not to be released without her permission.  And while I may have flubbed once or twice along the way, on the whole I did a darned good job.

She taught me (another) lesson that day.  When I share my life here, I am also sharing hers.  And she wants, and deserves a say.  We have talked a lot since then about whet I can and can not write about.  She puts very few restrictions on me, and I appreciate that – but I respect each one.  This life is hers too.  And, in the middle of teaching her about the permanence of the internet, I have to respect that on some things she will want privacy.

So, I write about Cowden’s Syndrome, about thyroid nodules, and AVMS.  I write about breast cancer and my mastectomy and hysterectomy.  I write about her worries about cancer.  I write about her desire to fit in, to have fewer appointments, and to feel a bit more normal.  I write about the countless hours we spend waiting, and the doctors who often don’t help much anyway.

I write about her desire to change the world – her fundraising ideas, and what a generally awesome mature, and compassionate kid she is.

And then, I let her read.  If it bothers her.  It comes out.  Its only fair.

But, I tell her, there are sacrifices, some small sacrifices of privacy that have to come when you want to raise awareness.  She gets it.  She always does.

So today, after the braces were on, and literally not less than 25 minutes later – before a drink of water – one of the brackets was off. (The cement must not have adhered.)  There were some tears then.  Some frustration about  wasting the WHOLE day at the doctor AGAIN… even if it is for “normal” stuff – none of her friends have to have braces this young….

And there was the life lesson for today.  For both of us.  We stayed calm.  We had another long talk about how “everyone has something” even though it seems she has an awful lot.  We talked about her friend’s older sister, and the new back brace that she is wearing, the apparent culmination of a long list of medical issues that have plagued her.  That young lady never seems to complain either.  Maybe that’s why Meghan respects her, and is drawn to her.  Kindred spirits?  We know quite a few.

We got the bracket fixed.  We headed to Party City.  We got a bargain on matching Halloween costumes.  We went to Kohl’s and she got a stunning dress for the Father Daughter Dance in November.  Slowly, the smile crept out.

We brushed the teeth for a long time tonight, getting used to the awkward new additions in her mouth.  Soon they will become  natural, like all the other bridges she has come to and crossed in these nine years.

Maybe the Cowden’s has nothing to do with the braces, or the need for having them so early, but I think it has helped make us even stronger, tougher, more durable.

She is sleeping peacefully, all content pre approved. 🙂

Another day off, another mission accomplished.  One day I would just like the mission to be a day in our PJs!

Award winning smile – even before the braces!

Impersonating ME?

I wish people would be careful who they impersonate. I am like this “big cat.” Waiting peacefully… until…

Have I mentioned the doctor and hospital bills?  Not that we need to pay them very often.  We are blessed with two solid insurance policies.  It’s the dealing with them.  When you are at appointments as often as we are ( and the COWDEN SYNDROME/ PTEN mutation seems to make sure of it!), the errors are countless.  And the HOURS on the phone…

I shouldn’t complain.  I have been home enough the last few months that I can spend hours on the phone.  But, really after a while when you are fighting so hard for your health, and many days your sanity, the incessant battles with billing departments can be draining.

And, when  I am at work – that is when I could really use a secretary, or a clone.  Either way…

The dreary weather is getting to me.  I am lonely.  I feel better, but can’t do much.  It’s nice to be home, but not with so many restrictions.  The internet is full of poison.  I can not read one more article on post menopausal weight gain.  I am only 38.  This is sometimes surreal.  Menopause… I should have at least another 15 years for that!  So, I try to be productive.

Like the bill I got for a visit to the ER when I was never there.  Yep, I was never there.  I have made no less than 15 phone calls about this since May 10th when the bill first came in.  Everyone is suspicious of me.  They have bounced me through departments.  I even got a letter from GHI saying the bill was filed electronically using my Social Security number.  (Because I needed one more worry.)  Seems to me it should be easy to trace.  If someone cared.

I just sent an Email to the general bank at the hospital.  It was 2 hours ago.  They have already asked me for more information and rerouted it to a few supervisors.  At least someone is doing something.  But me, I am waiting.  My credit scores were just printed for our mortgage last month.  They were very good.  I am  sure I need to call and request detailed reports.

Every time I go to the hospital, whether it is for my daughter or me, they want copies of the insurance cards, copies of our driver’s licenses, (mine and my husband’s) and our social security numbers.  I never give out my daughter’s – that is the one piece of information I can withhold, but they get everything else or they won’t treat.  They have that power.

What I get are the bills.  Some of them are just fun to deal with.  Like yesterday when I told the hospital that did my daughter’s last surgery that it had to be illegal to bill our primary carrier $40,000 and get payment in full, then bill our secondary carrier $25,000 and get nothing (because the bill was overpaid in their eyes) and then try to tell me I owe a $300 deductible.  Nope.  Not paying it.  The supervisor adjusted my balance to zero when I questioned their billing practices.  Surprise.

Now I have the unique job of proving I actually was NOT at a hospital when someone says I was.  It may take me all next week, but I will get it done.

Although I would like to have a chat with the poor soul who pretended to be me.  Ok my life could definitely be worse – but really, pick more carefully who you want to impersonate buddy.

I am busy here kicking the bottom of a rare disease.  I am tired, but I am a fighter.  Don’t mess with me – unless you really want to try being me.  I fight full time.  And like I said, when it’s important – I win. – Post Op on the internet

I am seriously starting to think that should be a website.  One that reminds you when you have a rare disease its just dumb and dangerous to blindly internet search anything.

So yesterday was my hysterectomy.  Ten and a half weeks after my double mastectomy.  Two four hour surgeries.  My body has had it.

I had talked to my surgeon about going home yesterday.  She said it would be fine if I tolerated the surgery well.  I was set to go home.

Instead I have a bruise on my arm from the epinepherine shot.  Not even sure if I spelled that right, but you get the point. And, the reminder ringing in my ears that “If you try to move – we are going to need a crash cart.”

I have always had low blood pressure.  It is not unusual for me to run 85 over 60.  No doctor has ever been alarmed.  I am used to the quizzical stares, and I take a minute beefore moving when I stand.

But yesterday, after four hours under anesthesia, and after not eating for about 18 hours, my body was a bit testy.  Maybe it was trying to tell me I should slow down on the organ removal.  But recovery wasn’t going well.  I didn’t feel right.  I had a terrible headache, and all of these bells kept sounding.

I wanted to use the bathroom.  I needed to go.  I tried to get up and the nurse said,” not yet.”  We went through this a few times.  She brought me a bedpan.  I laughed to myself.  There was no way I could make that happen.  I thought of my daughter and the times we tried to make her use one.  We are a lot alike she and I.

So it was getting ridiculous.  I sat up.  That was when they all freaked out.  Apparently 74 over 33 is dangerously low.  Up went the feet, down went the head, and over was any chance of getting home.  Somehwere in the middle of all this they inserted a catheter right there in recovery.  Even that brought no relief.  My poor bladder wanted to pee.

My anxiety was through the roof.  The tears were flowing.  I was just beside myself.  Hours later – after 8PM from an 11 AM surgery, they brought me to a room – where I lay awake all night.  No food… and no mobility.   Catheter and IV  – UGH!

At 5 Am when they unhooked BOTH the catheter and the IV I sat up.  I peed.  I walked.  All was right with the world.

Then I got home.  I started wondering about low blood pressure.  What causes those kinds of drops?  Kidney issues – (what is the incidence of renal cell carcinoma in Cowden’s patients – almost 30% I think) or endocrine problems – thyroid (HUGE cancer risk – part of mine still sits in my neck like its own ticking time bomb) or heart problems (what the hell, that’s not even on the Cowden’s list!) No more problems.  No more doctors.  Really… I think I either need stronger medication for the anxiety, or a slower search engine.

On the upside – my uterus, having served its one useful purpose – sits in a pile of medical waste alongside my ovaries somewhere.  Huge risks – gone.  Its a tough battle, but I am on the winning end right now.

I wonder how many organs you can have removed before you thoroughly traumatize the body?  Maybe I should look that up… tomorrow.