Playing in Pain

We missed church again today.  Not because we overslept.  Nope.  We were up with plenty of time to arrive at the Urgi Center and take our typical seats, waiting in a crowded room.  If I had my copays back each year, I think they would exceed my tax return.  Which is no great shakes anyway, especially with the whole identity theft mess.  But, I digress…

Yesterday was a CYO swim meet.  It started poorly because the bungee on her prescription goggles snapped in my hand.  And they don’t get to warm up before a CYO meet, so there was no way to check and see if the new cord set the goggles right.  So, she want back to her old goggles.  Guaranteed functionality – sacrificing vision.

swim

She swam.  Hard and as fast as she could.  She maintained her time during her first 25 fly in the relay, and took 2nd in the individual fly.  She even swam up – with the 7th and 8th graders for a 50 back, and took 2nd there too.  But it was during the last leg of the 200 free relay – the last lap of her 50 – her father and I looked at each other and knew – the right arm was hurt.

swim2

When I met her in the locker room her resolve was strong.  My mission was clearly to help her get out as fast as she could.  But the arm made it tough to change quickly.  We got into the car before it all came out.  She explained how the loss of the prescription goggles altered her judgement and she banged her arm into the diving board rails as she started – out of a lane she has never been in before.

We came home and iced the arm.  We watched as the pain seemed to get worse.  It went from the arm, up into the shoulder and into the neck.  We are so used to there being pain.  This child lives in constant pain.  Some people must think all sorts of things, because something truly always hurts.  But we have learned to put them aside, and, we have to triage.  Last week she walked around for 5 days with a sprained ankle.  Pain is so personal.  Her nerve endings seem so easily excitable.  Any injury seems to trigger an attack of “hyper healing” effort by her body.  Even with 200 mg of MAINTENANCE Celebrex a day, she contends with joint pain and muscle spasms.

But she is an athlete, trapped in a body that is not quite sure how to handle her.  So she presses on, and in between wanting to stick her in a bubble, I am awed by her raw determination.  She wants to RUN, and KICK, and PLAY, and SWIM, and be a KID.

It’s not uncommon for her to spend the day after phys ed. recovering.  Or a day or two after an athletic play date trying to work through the residual pain.  I know that the other kids aren’t fighting their bodies like this, and it breaks my heart.  But she is one determined young lady.

Sometimes the only option..
Sometimes the only option..

So last night we sent a text to our PT.  To know Dr. Jill is to love her, as she is one of a select group of medical professionals who truly works for LOVE of the children she services.  And when you are Meghan you have “PT for LIFE” and she’s been a patient there for about 4 years!  And at 9PM last night we were in her living room – getting informal advice from a very skilled friend.  If you’ve followed our story a while you know Dr. Jill is the impetus behind our Cowden’s diagnosis.  She is the one who said,  “something isn’t right here – too many unconnected pieces.  Take her to genetics.”  And I did.  And the rest is our unfolding story.

Dr. Jill encouraged us to get a muscle relaxant for Meghan at Urgi Care today.

She's an absolute DREAM child - but really God knew what He was doing giving us ONE!
She’s an absolute DREAM child – but really God knew what He was doing giving us ONE!

So we did.  We also got a note because the injury is to her right bicep and shoulder.  Her dominant side.  And there is no practice for her tomorrow.  And no Phys. Ed. on Friday… and then there is the math test this week.  And the gamble as to whether she will be able to write enough, fast enough…  So much to think about.

The muscle relaxant calmed the shooting neck pain for a while, but its on its way back as I type.

We spent some time today talking about our fundraising hopes for Rare Disease Day 2015.  We talked about my promising conversation with the head of the PTEN foundation – formed in December 2013.  We talked about wanting to do something BIG for the PTEN foundation http://www.ptenfoundation.org/ and Global Genes Project.   http://globalgenes.org/

I sometimes complain about being too busy, but she, like me, needs a positive project – even a simple play date – just something on the horizon to keep her focused.

She managed to type out the homework.  We are getting ready for tomorrow and another crazy week.

We are babysitting my sister-in-law’s 12-year-old rottweiler.  A 3 dog house.  Cause a little more chaos creates more reason to keep on keeping on.

And I marvel that aside from some waning eyesight which I will have to address eventually – my body is stronger, and more able to endure stress than ever before.  And I remember that it’s a good thing I stumbled upon nutritional cleansing when I did.  The closet is full of the smallest clothes I have ever owned, and the ability to endure is not to be taken lightly.

My Favorite!
My Favorite!

So tonight we will get a real sense of how long the muscle relaxant helps.  And tomorrow we will conquer the hurdles of having the dominant shoulder banged up during a school day.

I think I’ll get everything prepared nice and early.  Just in case…

moms - full time

Identity Crisis

Sorry it’s been so long.  I am working through an identity crisis.

At first I thought it was a mid- life crisis, but upon closer review, it is definitely an identity crisis.

IdentityCrisis1

Sometime about a month ago someone thought it a good idea to get all involved in my bank account without my permission.  So, countless hours and a police report later – that is ALMOST resolved.

Then, last week we went to file my taxes.  Apparently someone already did that.  In JANUARY!

More hours on the phone.  More papers.  Just what I was hoping for -really.

The whole thing seems almost too hard to believe, almost.  It’s not the first time either.

Identity-Theft

And, I am pretty vigilant.

I mean I do blog – obviously.  And I am not super careful about personal information here.  But, with financial stuff I am guarded.  I online bill pay only through my bank – which incidentally changed this week.  I don’t answer phone solicitations, or fall for those Emails that try to trap you into believing they are real by urgently asking for personal information.

I don’t use my debit card for anything.  I keep one credit card and monitor its online activity every 48 hours.

By all accounts I am on my game.  But, apparently someone else is there too.

And I can’t figure out why, although I have a host of suspicions.  Since we are married this is the 5th incident I can count where one of our identities has been compromised in some way.  We fill out lots of papers, but we do so because we have to in whatever situation requires it.

What I want to know really is, does someone truly WANT to be ME?

identity

I mean full on Cowden’s Syndrome, breast cancer, hysterectomy, thyroid removal, spleen tumors, kidney cysts, a doctor every 30 seconds, no break, ever… with a kid just passed surgery number 11 in 10 years, and who does all that and then some?

I’m not trying to say my life is THAT bad.  I can count dozens of others whose predicaments are worse – but it doesn’t let up.  Not for a minute.  Ever.

It’s like that hamster in  the wheel thing.  Not for the faint of heart.

I wonder if my identity stealer(s) – cause they can’t know if it’s the same person- would like to hang out with me for a week or two.  Maybe during a “fake” Spring Break?

fakespring-break

That’s what my daughter has come to call it, after between us we have already covered 7 doctor’s appointments, with more lab tests pending.

Because I could ask them to spend some time on the phone with the credit reporting agencies, requesting 7 year freeze on all credit.

Or maybe they would like to copy the police reports, and mail them out.

Or perhaps they’s like to file the medical bills.  And then call the get the errors corrected.  And then call again when the bills go to collections for no reason.

Maybe they would like to drive.  Through Manhattan.  The place I swore many years ago I would never drive.  All day.  And pay repeatedly to park the car.

manhattan driving

Because this week I could have used some back up.  A 1 o’clock appointment Monday for me – genetics.  A story for another day.  And then yesterday to Long Island for one of the few doctors who listens to us.  And today there was a 9AM at NYU for Mom, and a 10 and 11:15 (which became a 12:45) for Meghan at Sloan.  Sometime as I was driving between NYU and Sloan I thought a lot about how this is not my “real life,” navigating between taxis with my heart in my throat.  I thought about my identity thief (thieves?) and how maybe they had some skills I could use too – like driving through chaos.

New York traffic during rush hour

And as we navigated our way back towards home to make a local appointment with the ENT to address the throat clearing, I could feel the tension on my shoulders and up and down my neck.  We made the appointment, in time to hear his ideas, and hop back in the car.

Onward to a quick Gluten-Free pizza – no cheese, and off to CYO practice.

kinnikinnick-frozen-pizza-crusts

Then, granola in the car and off to the other practice.  Where I sit.  Now.  Waiting.

Prior to my nutritional cleansing I would say I was exhausted.  Now, I am just tired.  Tired, and confused.  But I have strength and stamina that I never possessed before.

WON'T be without my Ionix!
WON’T be without my Ionix!

Where exactly is my real life?

Is it on the cell phone asking the PA why the thyroid levels aren’t making a move to improve?  I hope not.  Because I don’t like the numbers and they don’t like my questions.  Something will have to give.

Is it making the phone calls, filing reports, protecting the identity, keeping the house in some semblance of order, grocery shopping till all hours and at all costs?

Probably not.

Identity crisis2

The good thing about an identity crisis is it forces you to focus.  It forces you to stop and think about who you are, and what matters to you.  It forces you to decide to be deliberate in your thoughts, words and actions.

Initially I spent a good deal of time very angry about the identity thing.  It took quite some time to start shaking it off.  I am much better now- although not thrilled, I’ve come far.

See my ten year old recently in an interview about Cowden’s Syndrome said to the reporter, “You have a choice, you can be angry or you can DO something.”

do something

Wise words from my preteen.

I am angry.  But it won’t control who I am.

Identity theft sucks.  It’s mean and it’s wrong, and it’s a time-consuming pain.

Cowden’s Syndrome is flat out horrendous.  The follow up appointments are enough to drive you mad.  If you let them.

Life seems to be tossing boulders.

boulder

Maybe my identity is “boulder catcher,” so I can put them gently down.

Or “magician” so I can turn them into something more gentle and flowery.

I know who I am.

And I can not, and will not be defined by the obstacles in my path.

I will not remain a ‘Victim” of identity theft – or anything.

identity theft

I have “Cowden’s Syndrome” but I will not let it have me.

I am a mom.

I am a wife.

I am a sister.

I am a daughter, and a granddaughter, and an aunt, and a niece, and a cousin.

I am a friend.

I am a teacher.

I am a student of life.

I am a Christian.

I love.

I laugh.

I cry.

I hurt.

I heal.

I try my best.

I try again.

I forgive.

I am forgiven.

Identity Crisis – Over… 

I think!

identity crisis