Angry Penguin
Angry Penguin (Photo credit: Wikipedia)

It felt like anger at first, but it isn’t.  Sometimes even at my age I forget things I already knew about myself.

I cry when I am frustrated and overwhelmed.

I am not really angry.  That takes up too  much energy and I have none to spare.  To be angry there has to be a target of your anger.  And really, who or what am I going to be angry at?  And what purpose would it serve?

Now frustrated is a different story.  Frustrated is when the control freak can’t sit long enough to organize the pile on her desk. 

Frustrated is the dead sod in the yard, and the cucumber and zucchini that seem to have developed a “creeping crud” fungal infection.

Frustrated is when old “life” problems, like credit and identity theft issues that were solved three years ago start taking up time, and there isn’t much to spare.

Frustrated is when you can’t get a doctor who takes your insurance (despite countless phone calls) to order the tests you need so you can stay well enough to be on top of the (not so bright) doctors who are treating your daughter.

Frustrated is trying to plan some FUN events when doctors appointments keep getting in the way.

Super frustrated is having to go to NYC to see the knee surgeon tomorrow, on a perfectly nice – I should be scheduling a play date for my kid- kind of day.  Frustrated is being unsure how to get my point across without being escorted out by security, and/or without scaring my kid.

Frustrated is going to the appointment alone- when I really want my husband there, but knowing it is not the kind of appointment he should take off work for.

Frustrated is wanting so badly to let some of this worry go, and knowing I can’t.

Frustrated is a new medical issue, every time I turn my head. 

A toddler girl crying
A toddler girl crying (Photo credit: Wikipedia)

Frustration IS Cowden’s x2!

Sometimes I cry when I am frustrated…  but everything always looks better in the morning.  ( I hope!)

A story of two Meghans…

 The cutie in this picture is my cousin Meghan.  She was born in 1985 when I was just in the 6th grade.  She was the first child I ever babysat for.  She was my buddy.

 She was diagnosed with Leukemia around her second birthday. 

Remissions and relapses, bone marrow transplants and chemotherapy followed the next 4 years, but a cure was not to be. 

She passed away in 1991 on my 18th birthday. She shaped my life in every way imaginable.  I am a better person because I knew her.  I developed perspective at an early age because I knew the pain of having loved, and lost someone so young.

 She is our guardian angel – ever-present in our lives. 

Disney 2009

My daughter Meghan was born in 2003.  I asked my aunt and uncle for permission to use the name.  They were pleased, but not surprised.  Meghan was a huge part of my life, and I wanted my daughter to know her name was carefully chosen, and she was named for one of the strongest little people I ever knew. 

My daughter  knows all about “Angel Meghan,” and how she watches over us.  She knows all about childhood cancer and its gold ribbons.  She happily worked to raise money for a school project this year, for a “great” cause.  She knows cancer took young Meghan’s life.

Gold ribbon
Gold ribbon (Photo credit: Wikipedia)

She also knows her Mom and her Grandma had cancer, and they are doing just fine.  She knows the battles can be won, but they seem to be all around us.

  What she doesn’t know, is where she fits in.  She lives a life where at a young age, cancer and its risks have become a real part of her life. 

She knows she fights every day, to get through her own life with a rare genetic disorder. 

 What I find interesting is she is seeking a symbol.  She wants something to wear to show the world what she is contending with. She was able to express it to me, and while I was amazed, it made sense.     

English: pink ribbon
English: pink ribbon (Photo credit: Wikipedia)

 My husband bought me a Pandora necklace with pink ribbons after the cancer diagnosis.  I have a bracelet I wear.  They give me strength, as silly as it may sound.  A sense of focus.  A reason to stay on top of things.    

She needs something.  And it isn’t easy to find.  It’s not a blue ribbon, but a denim one representing genetic disorders.  I think I will have something made.  Anything to help her find her identity. 

She is special.  She is named for someone special.  She is unique.  She is smart.  She is funny.  She is friendly, and wise.  She is a lot like my cousin who came years before her.  She is tenacious and strong-willed.  She is finding her identity.  She is growing up.  She knows Cowden’s Syndrome will never define her, but she wants to feel empowered.  I can’t  blame her.

 Two special Meghans. 

One shaped my heart as a young girl. 

 The other daily inspires me to be a better human. 

I am truly blessed.

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.