Laugh Out Loud

lol3

We use the phrase all the time.  Anyone who texts or uses any social media understands LOL.  But, today I got a more clear explanation of why it’s essential.

At Voice Therapy this morning we talked about “habits,” things I may be doing without realizing it to strain my voice.

I was told that both laughing and crying can be damaging.

Crap. I’m screwed.  Laughing and crying are things I do- often.

But, she explained.  Laughing, or rather “fake laughing”  when you hold it in your throat is stressful and damaging.  When you laugh, you should laugh full and from your belly.  You should, for lack of a better phrase, “Laugh Out Loud.”

Well, ok.  This I can do.  My husband cracks me up.  I mean most of the laughing I do in my world originates from him.  And it’s the kind of laughing that’s so loud and clear that I often find myself praying there is no belt on my jeans.  This laughing is just fine.

lol1

The laughing that is no good, is the fake laughing.  Go ahead, try it.  When you want to make believe you think something is funny and what comes out is a huge fake smile and a small throaty chuckle.  This is no good.  And you know what?  I’m ok with that.  Laughs, like anything else should be real.  If I must be social, a smile will do.

I was also cautioned that crying can be damaging.  This one worried me.  I am not a depressed soul, but the way I stay sane is to live my emotions.  I cry- when I am thrilled, nervous, sad, worried, happy, and other times too.  This I could not give up.  But I breathed easier when she explained.  The crying we hold in, is the damaging kind.  It ends up getting stuck in your throat and causing all sorts of problems.  However, if you cry, and let it all out – it’s just fine.  Makes sense really.

cry-out-lous

Live – out loud.  Laugh out loud.  Cry out loud.  Don’t hold it in.  I’m quite sure to do so damages more than your vocal cords.

Getting up early on Saturday bothers me a lot less.  I like her.  She makes sense.  Good voice and life advice over a cup of tea.

And every day she makes

#beatingcowdens

a little easier.

lol2

Relax, Nothing is Under (My) Control

Today I  dropped my daughter’s iPad.  Down a flight of stairs.  With no case.  I’ve never seen quite so many pieces on a screen.  But, it still turns on.  And somehow we all managed to remain calm.  My husband set the appointment at Apple for Weds. night.  Yes, we have “Apple Protect.”  Yes, I know there may be a deductible.  And, while I called myself several names, I was most impressed that all three of us remained very calm.

Maybe we are learning.

Relax

NOTHING is under control really, except how you handle the things that are out of control.

Yesterday I had the dog to the vet.  In a little under a year since we rescued her, she has ballooned from 42 pounds to 65.  I guess she feels content in my house.  We must be doing something right.  There was this rash on her belly.  And $300 later, with a shot of antibiotics, some antihistamines, and this cone on her head – it’ll be ok.

April cone

Except in the middle of the night.  Then she needs her Mom to love her cause she can’t get comfortable.  But, hey, really sleep is overrated.

On Thursday we went to see the ENT.  He checks Meghan periodically since the hospitalization 18  months ago to gauge how her reflux is affecting her throat.  It was a bit redder than usual this time.  So, we juggled a few medicines and left with directions to find a GI.  Easier said than done.  Our last one was fantastic, but she took a break from practicing, and our local options are less than fantastic.  So we will seek, and hopefully find…

On Wednesday we had the 2 week follow-up from the biopsy.  We left with a script for progesterone which is apparently our only option.  It’s necessary to slow the growth of those precancerous cells, and hopefully get them to go away.  Verified with the head PTEN researcher in Cleveland, through my local geneticist.  I hate hormones.   Hopefully she tolerates it.  Hopefully the cells behave themselves.  Three month follow-up, then we schedule the next biopsy.  She needs another biopsy so we can have a “clean” one.  That’ll be in June.  Something to look forward to.

On Wednesday after the doctor, Meghan and I took the train from downtown to Times Square to see Daddy at work.  This is truly one of the highlights of her year and there was no way we were missing it!

NYE ball 2016

Favorite Family Picture! Wearing our "NEVER GIVE UP!" thegsf.org
Favorite Family Picture!
Wearing our “NEVER GIVE UP!” thegsf.org

On Tuesday we stayed home.  She missed play practice.  She was recovering.

Monday had started out full of energy – with a huge nail in my new tire.  Thankfully the car has warning lights to tell me when the pressure is low, and thankfully I got up early, because soon after I got home from getting it fixed, she woke up.  In pain.  We ended up spending Monday in the Emergency room at NYU.  All told about 8 hours, a CT scan, a chest X-ray and blood tests, they found an elevated WBC, and free-floating abdominal fluid.  The doctor said it’s likely a cyst burst.  She was vomiting so badly that morning I never knew WHAT had hit her.  Just something hard.  The fluid, in my very sensitive to her body, girl, was likely causing the severe pain – just being there.

 

One LAST IV for 2015
One LAST IV for 2015!

Maybe it was triggered by Sunday’s Swim Practice at the Long Course (50M) pool on Long Island.  Maybe not.  We’ll never know.

Christmas seems like only a blur.  Mom had it this year, a kind respite for me.  Some time spent with the family.  Some time to just be together.  It was perfect.  And I am so grateful.

 

My Family 2015
My Family 2015
My Sisters 2015
My Sisters 2015
Meghan with her Great-Grandparents 2015
Meghan with her Great-Grandparents 2015

The week has been wild, and I guess that’s why I’ve been quiet.  But, I am proud to say we have laughed despite the chaos.  I can’t think of a day this week I haven’t laughed so hard I cried.

NOTHING is under control.  At least not under MY control.  And I am going to TRY really hard to be more OK with that.

The schedule for 2016 will not lighten up even a bit.  I have an ultrasound Saturday, Meghan has an MRI on the 14th and the knee doctor on the 25th.  It will not slow down.  I must stay organized, and healthy, and focused.  I must continue to eat well and exercise.

Most importantly I must laugh.  Often.  With my family.  With my friends.  The adventures will continue.  But

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Happy New Year to all!

NYE ball 2016c

 

Anxiety- an after effect, or a symptom?

An interesting “conversation” in one of my online groups this week, regarding increased levels of anxiety and depression conected to PTEN mutations.

This is really how I view the race against Cowden's Syndrome
This is really how I view the race against Cowden’s Syndrome

One of those conversations that make you wonder if it is better to be validated or to fight the idea that this perpetual anxious feeling is actually hardwired into your genes.

I looked up the articles too.  I love to read for myself.  The experiments are done on mice.  I suppose there aren’t enough of us to get a controlled group for a good study, (although there is a drug called rapamycin being studied on humans – but that’s for a different day.)  But, among other symptoms the mice in their mazes did show marked increase in anxiety.  Although.  I have to imagine if I was a mouse in a maze I might get nervous too…

???????????????

Now I have a lot of throughts on this.

I have always been a worrier – highly anxious about most things.  Anyone who knows me knows that to be true.

But, conversely – throughout large portions of my life there has definitely been something to worry about.

CartoonV9991 ChickenOrEgg copy

So, as the chicken/egg thing goes -do I worry because anxiety is a part of Cowden’s syndrome, and even before my diagnosis I have had Cowden’s?  Or do I have acute bouts of anxiety because having Cowden’s gives me so much to be anxious about?

The best answer probably is – both.

I am a rational person by all rights.  Even in the middle of my worst anxiety I can stop and think and KNOW that my fears are irrational.  I can have the absolute belief that God will continue to care for the situation, and for my loved ones, yet still it is often like a crushing weight on my chest, making it hard t0 think, breathe or move.

worry

What I have on my side is that I was raised to keep on keeping on.  Thanks Mom, and Grandma and Pop especially… when the going got tough, we were taught to keep going.  So while I comfort myself with verses about tomorrow having enough worries of its own, and while I am faced with horrendous tragedies of things that cannot be controlled, I am able to press on.

So I can function, and the anxiety does not cripple me.  And, I know the “nature vs. nurture” reasons to explan it. 

But I do know that my daughter suffers too.  Not just with a PTEN mutation, and Cowden’s Syndrome, but also with anxiety.  She is a worrier, “just like her mother” they say.  Yep.  Maybe she is like me because of genetics, or my example.  I can’t really know for sure.

So what to do?

For me, the first step is just acceptance. 

I am a worrier. 

Regardless of the cause, and allthe logical justifications I can give myself – I will remain a worrier.

Then, find an outlet.  I am still working on this one.  I am thinking I like to write – so maybe that will help some.  I would like to get a few minutes to myself now and again.  I used to love to walk.  Maybe one day there will be time for some nice long walks.

I meditate a bit on the bright side.  Be grateful for the “good” that comes with a chronic illness like Cowden’s Syndrome.  I am not referring to the pain, and the surgeries, and the cancers looming, but rather to the “warning” system built in.  Parents would do anything to protect thier children.  How blessed am I that even among the strain of ceaseless appointments and hours waiting at offices and for results, we have a warning system.  I am confident that if we are vigilant, the Cowden’s won’t “get us.”

warning

Stay organized.  Don’t let the bills, the list of phone calls, the shredding, or the sorting to pile up.  It will just keep coming.

Stay ahead of the school projects.  You never can tell where tomorrow is going to land us.

Laugh.  Often.  It is deeply good not only for the anxiety, but also for the soul.

lsughing dog

Recognize you have lots to smile about.

Acknowledge the pain of others and “Pay it Forward” when you can.  I find that  NOT dwelling on our lives here, helps make me less anxious.

Did the Cowden’s cause the anxiety?  Is it hard wired into who I am as a person?  Is Meghan destined to be forever wondering and worrying?  Or, did a life of doctor’s appointments, pain, chronic disease, and general worry, create the anxiety? 

It really doen’t matter because it is here.  It is part of me, and to la large extent – us.  I doubt it is going anywhere.  I think its just my job to control the beast the best way I can, one day at a time.

Back to work, back to reality!

Elementary school kids can be really cute.  Sometimes.  I have been out more than I have been in these last few months, but since I have been at my school a long time I have a relationship with many of the kids and their families.  So, when I walked back in on Monday I was accosted by small people, all of them waist high.  Hugging my belly and telling me how much they missed me.

Um, thanks… and OUCH!

I smiled as I tried to slip away from them without offending anyone.  They are so innocent.  Not a single one thinks to ask why I was gone, they are just happy to see me.

I walk to my classroom, carrying my extra light bag that weighs 6 pounds.  I know this because I was told to carry nothing over 10 pounds, so my overprotective – God I love him – husband brought down the scale we use to weigh our luggage, and checked on my bag.

He knows I like to drink a LOT of water during the day.  He brought a case to my room, so I wouldn’t have to carry it.  He is a pretty good guy.

I sit and look around.  It has only been a few weeks again, but it looks strange.  Different.  I get the sense I am not too sure I belong.

Then I look at my schedule.  Classes are coming.  Real classes, expecting me to have lessons for them. 

You mean I have to teach too?  Wasn’t getting here enough?

I made it through – thankfully my days were shortened so I could deal with other issues. 

I was OK with coming home from the hospital right after surgery, but did this doctor really know what she was doing sending me back to work in less than 3 weeks?  Probably.

My surgery site barely hurts, and aside from some light bleeding, things are getting better.  I have to keep  behaving, and that is hard.  Very unlike me.

It was probably good to get up and out of the house.  To be around people.  To be reminded that life isn’t just about me and life goes on while you are home recovering from surgery.

I am just so incredibly TIRED!!!!!!!!!!!  The deep, bone crushing kind.  I need my energy back.

Tomorrow there are no kids in school.  Staff development for the teachers.  I am starting to feel like I have a purpose again.  Less wallowing, more working. 

My clothes are all picked out.  Let’s see what they make of my favorite breast cancer ‘survivor” T shirt.  I may be exhausted, but I will be sure my sense of humor follows me to work and wherever else I go.

If we can’t laugh at ourselves, and our own lives, we are in a LOT of trouble.