Deep Cleanse

I had a list of things to accomplish while I recover from my vocal cord surgery on 3/3.  I have been unable to work, preserving my voice for exercises given by my therapist, and brief conversation.  But, aside from the inconvenience of not speaking, I have felt pretty well.

That left me with a little time to get a few things done.

I could not push it physically, but I sorted papers, shredded, sent Emails that were overdue, and generally handled things that had fallen by the wayside during the busy nature of life.

I discovered, much to my disappointment, that my attention span for reading has decreased exponentially since spending so much time at a computer screen these last few years.  I vowed to get to work on that.

I also discovered that I have an account on the family’s “Netflix”  and I learned how to sit still long enough to binge watch some “Law and Order.”

There was time over these three weeks for some honest self-reflection as well.

Sometimes it’s painful to put truth right in front of our own faces, but I had the time to do the work, so I went for it.  I already wrote about isolation,  and I had some time to think more deeply about what role my own actions play in that.  I was able to reconcile that some of it is unavoidable, and some can be mended by me.  Balance.  I’m on it.

I also took a hard look at my own emotions and how they affect my house.

It is so easy to get “stuck” in the role of caregiver.  It is so easy to live a task oriented existence, making sure things get done, and arranging the logistics of life.  We may only have one child, but you add into the equation, two of us with a genetic disorder that involves countless appointments, surgeries, therapy and follow-ups things get dicey quickly. Add in that every appointment in NYC is a MINIMUM of 4 hours, and sometimes 6 or more, and the billing that comes with these appointments is at least a part-time job on its own, well, your head can spin.  Then, you think about the issues that surround friends and family, illness, disease, financial hardship, emotional distress, and your heart can hurt.  When you join that with “regular” stuff, like 2 working parents, a scholar, athlete, theater buff kid, food sensitivities, prescription medication, and anxiety all around – well, it can easily become all-consuming.  And it did.

I sat in my office one day, looked around and realized I was unhappy.  That was a tough realization.

I am not unhappy with my husband, or my daughter, or the countless blessings in our life.  I just became so consumed with getting things done that I forgot myself.  Literally.

Sometimes its good to reflect.  It’s the only way to get things done.

Last week my sister sent me a box of essential oils.  I was skeptical.  I bought a diffuser.  I feel like peppermint in the air while I work is good for my soul.  So is trying something new.

Tuesday I went to Kohl’s. A quiet activity easily done alone.  I felt the tension start to release.  I picked up a few things for me and for the house.  I went out because I WANTED to.

Something amazing happened Tuesday.  My husband and my daughter both remarked that I looked happy.  I had a story to relay at dinner that was about me.  The mood in the house was lighter.

Wednesday I took a nap in the middle of the day.  Because I could.  Again, I found myself with a little less pressure in my shoulders.

That night I promised myself and my family, no matter how busy things got I would find a way to spend 15-30 minutes every day on SOMETHING I could say truly made ME happy.

I’m a work in progress.

I chose to do a deep cleanse on Thursday and Friday.  I was working on my mind, but I had to bring my body along.  It had been too long.  I had gotten a little lazy in my habits and in my routines.  I have this incredible nutritional system at my fingertips and in my home, and sometimes I forget to use it to its full potential.

I woke up this morning having released 5.1 pounds of junk.  I started the day with a protein shake full of strawberries.  I shopped with my girl this morning.  Then, I got to listen to her singing lesson.  Now, they watch a movie while I get to write.  Then, my little family is off to dinner together.

This week the spring plants that sprouted on 3/3 started to really grow.

The caterpillars that came in on 3/2 have all become butterflies today.

Maybe we all used the same period to try to transform a little.  Nothing like a few new butterflies to remind you about new beginnings.

I am focused on this journey now.  I may falter along the way, but I will hold true.  This feels right.  This feels good.  And when I feel right and good, it is much easier to remain

#beatingcowdens

Silence is… difficult and required

I always hated charades.  I stunk at it.  And I still do.

charades

I would have made a rotten mime.

mime

Forced down time.

That’s what surgery brings.

This time it brings silence as well- for at least the next 5 days.

Emoticon posing like “three monkeys”

I kept moving so fast through the last few months that maybe I chose to ignore the problem growing inside me.  I mean, ignore it in the sense of not writing about it too often.  Of course, I’m not foolish enough to ignore it…

It was last spring, right about this time that I started to feel a little hoarse.  I blamed it on spring allergies.  Except it never went away.

It always struck me as odd because it came at a time during the year I was teaching less, and testing more so there was less of a strain on my voice.

Once spring turned into summer, I had to accept “spring allergies” wouldn’t work.

I searched for an Ear, Nose and Throat doctor in Manhattan, in my network. I read bios, and surgical articles, because everything seems to end with surgery anyway.  So – I find its best to pick a good surgical record to start.  Negative, or realistic?  You can decide for yourself.

The first appointment I met the speech pathologist and the doctor.  Both took baseline screens.  I was told at initial consult in July that there was a “nodule” and a “striking zone lesion” on the opposite side.  I was told it did not seem “typical” of the nodules teachers usually get, and I was told at that initial visit I would likely need surgery in the future.

Healthy image

Healthy image

But, first I was sent to vocal therapy.  And while I scoffed at the idea, I know now how valuable the experience was.  I have always sent my daughter to therapy when needed, and marveled at the success I saw with OT, PT, and Speech.  But somehow for me, it was a tougher pill to swallow.   At first.

I think when I wrote about this last I had connected with the Vocal Therapist, a gem of a woman, and a skilled class act in Speechless – October 2016  And then there was a quick entry here Laugh Out Loud – November 2016,  Basically, the therapy helped enough to reduce the swelling, and reveal more issues.  In October I was told definitively that surgery was in the future plan.  I was told to continue to practice what I had learned in vocal therapy.   I was told to rest my voice when I wasn’t teaching, and to employ a slew of new speech strategies and exercises.  I continued Vocal Therapy through December.  It has been no easy task, and I am FAR from perfect at it, but I can say I’ve made improvements at least a third of the time.  Not too bad for a few months of modifying something I’ve been doing for 42 years!

The kids at school are used to my “tour guide” microphone, which helps me resist the urge to overextend my voice.  We got in a routine, as you do when faced with a new obstacle.  There is no other choice really, because as my friend says, we just “keep swimming.”

The plan was for me to return to the doctor in early April to set up surgery for the summer.

Except plans change.  And it was getting a little hard to breathe.  I felt like I had asthma symptoms more often than I am used to, and almost like a constant feeling of fullness in my throat.

I called the doctor to move the surgery up.  We set February 20th as the date.  Sometimes I just have to trust my instincts.  Except I got a call that the OR was closed on February 20th and I had to take either February 17th or wait till March 3rd.  And for a hot couple of moments I entertained February 17th.  Except that “Jeans for Rare Genes 3” was set for February 19th.  And, me being on total vocal rest while we entertained 120 people wasn’t a great idea.

January 31, 2017

January 31, 2017

I headed to see the doctor on January 31st and he found a new problem.  There was now a very large polyp extending over the vocal cords.  It was big and it had not been there in October.  I asked about the likelihood of it being benign and I was told he was 99% sure it was all benign.  I liked the odds, but still he agreed waiting till the summer wasn’t a great plan.  We settled on a surgical date of March 3rd.  Carefully calculating the number of days I’d need to be off of work before my return, we established it should still work.

Over the last few weeks I felt increasingly short of breath during mundane tasks.  I stayed calm.  I decreased my daily activity and moved a little slower.  I knew we could make it, and we did.

So, “Jeans for Rare Genes 3,” went off as a successful event, and yesterday morning, on the first anniversary of the death of my beloved Pop, I headed to NYU to have my surgery.  I left with the prayers of great friends and family, and the intense protection of one of my Guardian Angels.

The surgery went as surgery does.  It’s strange how it’s not nearly as anxiety provoking as it once was. The whole routine has a wild familiarity, from the intake to the recovery room.  I don’t get lost anymore and anticipate their words and requests.  It’s odd, and a bit strange this job of #beatingcowdens.  I walk dutifully to the OR and get settled under my warm blankets.  I expect the IV, and the burning of the anesthesia.  I know the mask will be the last thing I remember before the recovery room.

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And its amazingly less nerve wracking when the surgery is for you and not your child.

So the biggest polyp had increased drastically in size since January 31st.  It’s gone, and so are the other issues.  We wait on pathology and a follow-up next Thursday.  I’m on strict voice rest until Thursday at least, which requires me to really isolate.  Talking to my family is reflex.  And as I said before I stink at charades.

Before - 3/3/17

Before – 3/3/17

After 3/3/17

After 3/3/17

So we carry our phones.  I put my fitbit on rest. It’s off an in a drawer.  I’ve got my laptop in my room. I’m eating my Isagenix and diffusing protective oils.  I’m organizing my brain- a little.

I’m trying not to get ahead of myself.  I’m trying to address one day at a time.  This is not my strength.  It is in my long term planning that I strengthen my resolve and focus best on

#beatingcowdens.

For now it’s been about a day.  I slipped on about 20 words total.  Not great, but I never claimed to be perfect.  The funny thing about talking is you don’t realize how much you do it till you can’t.

The laughing is even harder.  My husband is funny.  It’s one of the things I love most about him.  How lucky and I as I heal to lament that my daughter wants to talk to me, and my husband makes me laugh?  I’ll hide from my biggest blessings a few more days.  #gratitude

 

 

 

Type A, and Then Some…

Calm down.  Relax.  It’ll get done.  Take a breath.  Why do you get so worked up?

These words could be spoken in several alternate languages for all the good they do for me.  They make no sense.  I mean, on a cognitive level I understand the words.  And even the context.  But, they hold little practical application for my life.

I am Type A.  Yep.  For it’s highs and lows, positives and negatives, I am a Type A personality.  Although like everything in life, the transition between Type A and Type B is a spectrum, I’m still honest with myself.

16 Signs You’re a Little Type A

Go with the flow.

I have a dear friend who has promised to make a t-shirt that says,”I am Flo,” to guide me.  She has 4 boys.  (She used to be full on Type A.  Now she shoves that in a drawer for most of the year, but the chaos sometimes still makes her cringe.)

high-strung

I am high-strung.  I am focused.  I am task oriented.  I am all about getting it done and getting it done well.  I get pissed when other people fall behind on their jobs.  I want order, structure, and routine.  I make lists on top of my lists, while putting alerts in my phone to avoid missing anything.  I have a hard time forgiving myself when I do.

typeapersonality

I am a work in progress.

But to some extent, regardless of your personality type, I guess that’s true of all of us.

September is chaos.  True, unequivocable chaos.  Here, in this house.  Here, in my mind.  September is the toughest month of the year.

And apparently I’m not alone, because this article really cracked me up.  September Is The Worst

If I could jump from August to October, it would be smoother.  And I’m not a big fan of wishing my life away.  But, transitions are especially tough on the Type A among us.

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And, when you’re a teacher – well.  That’s just a whole other story.  But, for the sake of brevity simply organizing class lists for 25 classes and 500+ students while they are going through new admits, discharges, and interclass transfers is a feat not to be taken lightly.  With the knowledge that 9/11 took place just a few days into the school year, I am always filled with a super sense of urgency to try to know who I have, and what their needs are as quickly as I can.  Figuring out who has allergies, and who has an IEP is another struggle.  Establishing rituals and routines for the classroom of a Type A teacher in one period a week is a bit taxing.  Not as tough for the bigger kids, but those tiny kindergarten faces are still in shock.  There’s no way they even remember my name, let alone where they should sit in my room.  Substitute plans must be prepared, because emergencies don’t have the courtesy of always waiting till October.  Copies of the schedule, printed, Emailed, and hung everywhere.  Supplies, traffic patterns, expectations, all need establishing and reminding.  That’s after the room is set up, and the bulletin boards are complete, and evening back to school night is squeezed into the agenda.

The agenda that is busting at the seams.  Because, I know all you moms of multiple children may laugh at me, and whisper about how easy I have it, but that’s ok.  Setting up the school and after school schedule for the child(ren) is a full-time job on its own.  August looks so nice.  The calendar lulls you into a false sense of security, as one by one the activities start-up again.  And then all of a sudden you are trying to figure out when you will shower, or fill up the car with gas, or eat, or grocery shop.  Never mind hair cuts!  There’s the one time deals, like back to school night, and “returning parents swim meeting,”  Every minute of every day seems to hold something.  I know I have only one kid, but that doesn’t mean she can take herself to swim practice.  Or pick herself up.  Or that most of the time I can even leave her there, as lingering fears about her health are always present.  And on the days she stays late at school for Drama, that’s a little easier, except when it crashes into a meeting at school.  And there’s morning study, set up for the intense schedule for the 8th graders, as well as Friday night Youth Group for stress release.  I think there’s a few minutes on Wednesday between 3 and 4 for sunshine.  Oh, wait… groceries…

is-this-real-life

And to the left of me sits the Open House Schedule for High School.  Still shaking my head as to how THAT happened, I am trying to figure out their days of the week.  Because, I think we can make the Staten Island Borough Fair AFTER the swim meet that morning in October.  There is the TACHS test, and the Specialized High School Test.  Although I’m not really sure when there would be time to prepare.  Unless, maybe there’s and app for that?

I haven’t even mentioned our health.  Isn’t that just funny?  It hasn’t rested one bit.  And the most ironic thing, is people don’t realize you shouldn’t mess with a chronically ill Type A.  Chances are good they like to excel at EVERYTHING.  And in my case, I am willing to throw it at them.  Hard.

Some time towards the end of August I had surgery to replace my implants.  Far earlier than the 10-15 year life expectancy they had been given, one had moved, and it was time.  That night as I lay recovering I picked up an Email from Meghan’s endocrinologist that we should raise her thyroid meds.  Her levels were off again.  Now raising the meds in and of itself every once in a while is not a huge deal I guess, but Meghan struggles with synthetic ANYTHING, and the fact that we were now 2.5 years post op from her thyroidectomy and she has had more dose changes than I have had in over 20 years can be unsettling.  More unsettling was when I read to the bottom of the letter that he would be on vacation for over 2 weeks.  So, here I was left to make a dose adjustment without clearing my list of “Type A mother of a chronically ill kid” questions, which, in case you wondered, are far more intense than the typical questions I ask.  I scraped together the new dose from the closet, because I think we have Synthroid in EVERY dose known to man, and started her on it the next morning.  My local pharmacy informed me that the insurance wouldn’t cover the new script even though it was a dose adjustment and we would have to mail order it.  But mail order takes 2 weeks.  And there was no telling whether she’d be on the dose for more than 6 weeks.  But, whatever.  I set my sights on getting a copy of the lab report to learn the magic thyroid numbers.

arm-wrestle

And then the real battle ensued.  I tried to get it from one doctor.  They couldn’t release it because they weren’t the “ordering” doctor, even though she had added labs to the order.  I called the office of the endocrinologist.  Twice that Monday.  And again on Tuesday.  I got a call back late Tuesday while I was on the phone complaining that I couldn’t see her labs through the “MyChart” system set up at the facility.  The ‘ office said they’d send them.  The MyChart people said they’d look into it.  I waited.

Exactly a week.  There were no labs in my mailbox.  I called the endocrinology office again.  I got someone who promised to send them and did.  I called the MyChart people again.  No answers, except that some one told me it was hospital policy not to allow parents access to records of their children ages 12-17.

REALLY???????????????????

Listen, while I may not like it, or even agree with it, I can almost understand that there are SOME situations where teens have the right to keep their records.  But, this, this is THYROID blood work.  She doesn’t want it.  TRUST ME.  She just wants me to give her what she needs to feel well.  That’s it.

I processed all I could about this at the same time that I got ANOTHER bill from this hospital.  The date of service looked familiar.  I keep copious records.  (Type A… :-)) And I was able to see that a bill for the DOCTOR, the PHYSICIAN Group, and the HOSPITAL FACILITY all billed, and were ALL paid to the tune of over $1000 for a 15 minute visit.  And NOW, they were asking me for 2 additional Co-Pays.  Notwithstanding the fact that we have 2 insurances, so our secondary picks up the co-pay at many of our visits.  I called the primary carrier.  They reversed the charges, but told me the billing practice was not illegal.  Ok, then its immoral.  And it preys on people who are sick, or who have sick kids.  The insurance company also told me it was ON ME to call them when this happens.  ONLY when I call them will they reverse the charges because as per my plan I am to pay one co-pay per visit.

bills-to-pay

Good, cause I needed something else to do.

By the first Friday in September I had had it.  I found the CEO and Head of Patient Relations.  I fired off a 14 page Email, 7 page letter, and 7 attachments about everything wrong at their facility.

I have since received 4 copies of the blood work by mail, and 2 phone calls asking it I needed it.  One mail even came second day express.  Of course it was addressed to my minor child, whose signature means nothing, and who is not legal to vote, or to drive, but who apparently in some alternate universe should be making health care decisions.

I received a letter from Patient Relations that they were reviewing my concerns.  I’m not holding my breath.

That same Friday I tripped and fell and did some number on the pinkie toe of my right foot.  A clear fracture, although there is some debate as to whether it is displaced, and it will warrant another opinion.  The 3 hours I spent visiting the last podiatrist was a waste of my time.  So, I am in a post op shoe for some infinite amount of time going forward.  Because there is little chance in heck the right foot is getting into a sneaker any time soon.  Good thing it’s the perfect month to “take it easy on the foot.”  (Insert sarcastic grin here.)

Last Saturday the vocal therapist told me that I have one irregular shaped nodule on my left vocal fold.  It still gets to be called “benign appearing.”  I was also told I have “significant vocal fold atrophy secondary to premature aging.”  Well, that sucks.  Because I thought atrophy took place when you didn’t use something.  And oh, I use my voice.  And the premature aging, well, that’s likely thanks to the 2012 hysterectomy that was a necessary preventative move.  It all comes back to Cowden’s somehow.

Over the weekend I noticed that the knots from the implant exchange were getting irritated.  This doctor like all the others had been warned, I don’t dissolve stitches.  But, as wonderful as he was, he also needed to be shown.  I clipped one of the knots myself and there was immediate relief.  Then I second guessed myself.  By Monday the site I hadn’t touched was red and warm, while the other was healed.  I took a photo and sent it to the PA.  Come in tomorrow she said.  So Tuesday afternoon, my surgical shoe and I trekked into Manhattan.  She pulled the stitches, read a low-grade fever, and marked the redness.  She scripted me with 5 days of antibiotics but told me to wait 12 hours.  Wednesday morning I sent her a photo.  “Looks better, right?”  I said.  “Start the antibiotics,” was the reply.  So, I did.

Friday, Meghan made it to morning swim practice.  5:15-6:30AM.  I dropped her off, and headed home to shower.  I met her with breakfast.  We stopped off to drop her bag, and were at her school by 7:22.  I picked her up at 2:20 and she made afternoon practice.  I was tired.  She made it to youth group too.  I was in bed by 10.

Friday I spoke to the endocrinologist – finally.  I really do like him, but I think we’ve established now that I can’t wait 4 weeks for communication.  I don’t think it will happen again.  We talked it through.  Wednesday the 28th we’ll head to the hospital lab to repeat.  We are going there because then there is no chance for anyone to blame a variation on a different lab.  But, that’s ok cause there is that free hour on Wednesday…  He will call me on the 30th with the results.  I believe him.

I also believe that when I take his call on the 30th I will have a tall glass of wine celebrating the END of September.

white_wine_glas

This morning Meghan woke up with a sore throat.  She had to skip practice.  That’s always a tough call for her, but the right one.  She’s beating Cowdens like a champ, but part of winning is knowing when to slow it down.

Slow it down.

Hmmm.

I am so wrapped up in the have-tos, and the just getting by, that so much life is just on hold.  We have to gather enough spoons to save for something fun.  Anything.  But there are no spares.  Especially not in September.  (If that last paragraph confuses you – you can Google The Spoon Theory)

spoon

Sometimes, when I have a minute, I  think about calling some of the friends I miss a lot.  But, I don’t.  They have crazy wild lives of their own.  My fears and anxieties and worries exist, and so do theirs.  But for some reason right now, they largely exist separately.  I miss them.  And I am forever grateful for Social Media and the few minutes I can take, at swim practice or the doctor to catch up, at least on the surface.

I am super-blessed with a husband who not only tolerates my Type A, but works with me.  He cleans, and cooks, and remembers to make me laugh.  A lot.  Often at myself.

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I am three years deep into nutritional cleansing that I have no doubt is keeping me fueled for this crazy life.  One day soon I intend to find a way to shout from the rooftops and share this secret arsenal of nutritious fuel with the world.  Because without it, I’m not sure exactly where this Type A, broken toe, infected boob, woman, who needs a tour guide microphone to teach her classes would be hiding.

Instead of hiding, we remain,

#beatingcowdens

forever!

c-12

 

Dear Stress, Let’s Break Up…


Because truly I’m getting bored of you. I’d like try to spend some time with Serenity, or Sanity, or Relaxation, or maybe Peace.

I know I’m bad at ending relationships. I get attached even to things that are just wrong for me.

I make excuses. I have a hard time letting go.

And you, well you are relentless. You keep finding ways to get in my face.


Yesterday you played nasty. I had a simple appointment. Do I need the implant replaced or not? And somehow it turned into an insurance nightmare and a need to consult with a new plastic surgeon. The surgery will be. But at least it’s not urgent. Sheesh! I needed to fit in a consult with a NEW doctor?  You know how much I LOVE new doctors right?  AND EXTRA trips to the city.  My complete favorite.

And as I tried to reach Meghan’s doctor to get things scheduled I hit so many roadblocks it was like you were just taunting me with your tongue out. I get it. Long weekend. Except it’s TOO long if you’re waiting on things like this.  I cried.  I admit it.  You got to me.


But you know what Stress? You’re taking up too much energy. And once again my kid set me straight. She swam one heck of a practice tonight. She will swim her December meet. I owe it to HER to work around her passions.  We even chuckled, knowing the reality of what she COULD be facing, and the super importance of her swimming, and singing, and acting. No matter if the doctor understands. God help me no matter if it delays things a few days. (Breathe in breathe out…) cause we have to prioritize.

Stress you don’t like focus. You like chaos. You like drama. You like mayhem. I doubt you’re gone for good. But we are so over you.

Excuse me while Peace, Serenity and I dig out the Christmas tree.

I will release you with my mind. I will release you with my energy. I will release you using ADAPTOGENS.  I’m really not interested in you…

 
We’re too busy- BEATINGCOWDENS!

The Story of the Girl and Her Mom

once upon a time

So, four years ago they diagnosed this girl with a rare genetic disorder called “Cowden’s Syndrome.”  Soon after they diagnosed her, they diagnosed her mom too.

And the mom and the girl read everything they could find, which really wasn’t very much.

And they asked a lot of questions.  Some from the doctors, but mostly from people on the internet who had this Rare Disease too.

They learned a lot.  They also learned there was a lot to learn.

They learned about cancer risks, and how very high they are.

They learned about screening tests.

They met lots of new doctors.  Some were super awesome, and others were super awful.

They fired the awful ones, and kept the awesome ones.

The doctors sent them for tests, and screenings, and blood draws, and all sorts of poking and prodding.

At the beginning it was pretty much all they had time for.

the girl who is always there

The girl had lots of surgeries, and lost her thyroid, and then they called her a “previvor” because they said she got it out just in time before it was cancer.

The mom, she had a bunch of surgeries too.  In one they found cancer.  But she was called a “survivor” because it was all gone.  (Thanks to the girl who got diagnosed first and saved her life.)

The girl and her mom ran from doctor to doctor.  They sat in traffic for forever.  They stayed in hospitals and had surgeries, and tests.  Everyone treated them kind of strange.  Like they were aliens or something.  Their condition was so rare that hardly any doctors even understood what they were supposed to do.

mother-daughter-2

Over time the girl and her mom got a better idea of what really mattered and what didn’t.  They started to be more assertive about doctors, and schedules and planning.  They started to say, “not right now,” sometimes, knowing that a few weeks wouldn’t matter, but a few months might.

The girl and her mom talked a lot about Cowden’s Syndrome.  They talked a lot about Rare Diseases.  Sometimes they were really angry.  Sometimes they were sad, and other times they were grateful.  They saw what some other people with Rare Diseases went through.

The girl and her mom had LOTS of long talks, real talks about tumors, and tests, and cancer, and life.

They worked on some things separately and some things together.  But they agreed to get busy living.

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That didn’t mean they could ignore the seemingly endless doctors appointments.  They all had to be done.  It meant they could schedule smarter.  It meant they would talk about what symptoms had to be addressed right now and which ones could wait.  It meant they had to get really good at communicating.

This isn’t always so easy since the girl is almost a teenager, but they are getting pretty good at it.

2014-09-22-momquote1

The girl had 4 surgeries this year, some more major than others, but she spent lots of time recovering.  And she learned that she liked to be busy.  She likes to sleep too, but she likes to be busy.  With kids.  Often.  She also likes to be active.  A lot.

The girl and her mom still have this Cowden’s  Syndrome, and sometimes for reasons no one understands, they hurt a lot.  Sometimes the pain makes it hard for one of them to push on.  Sometimes the tired almost feels like they can’t go on.

But the girl and her mom, they push each other.  They push each other to press on because laying down and giving up is not an option.

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Their days are long.  The mom works full-time.  The girl goes to 7th grade and makes high honor roll.

Their afternoons are full of drama club, the girl’s love of theatre, and lots of swim practice.  The days are often 13 hours or more of constant motion.

The girl and her mom, they decided that they might have a Rare Disease, but it definitely wasn’t going to “have” them.

So they decided that whatever comes their way, they are going to be active, healthy, strong, fueled with nutritious food, and built of muscle.  This way if Cowden’s punches, they will punch back harder.

Sometimes the mom wonders if life would have been different without the girl.  The mom wonders if alone she would have been able to push on.

But she doesn’t have to wonder.  Because they have each other.  And, because this weekend they spent 3 days at a swim meet.  And the girl knocked major time off her events.

And, when they came home, the daddy, who is the glue that holds them together, had warm chicken, and rice and vegetables, the healthy fuel  – all ready.

And the mom and the girl were so grateful.  For each other.  For the desire to fight.  For the strength from good food, and faith, and the love of a dad who backs them up every step of the way.

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And as the mom drove the girl to youth group at their church, they talked, about the swimming.  And about the fundraiser they are planning. So that Rare Diseases scarier than theirs get some attention.  “For the Babies,” and so that there can be research for this Cowden’s Syndrome.  So that maybe it can get stopped in its tracks.

And as the mom walked home enjoying the fresh crisp air of Fall she was filled with gratitude.

For this story of BEATINGCOWDENS has only just begun.  And each chapter holds more promise than the next…

Summer List

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I have been walking around all day with that nagging feeling in my stomach.

I have packed my bag, and Meghan’s too.

I have filed, organized, and made lots of lists.

There is a new schedule on the wall – color coded and everything.

The calendar says it’s time, but my heart, and my stomach beg to differ.

Summer was to be about beaches, and barbeques.  It was to be about road trips and freedom.  It was designed for friends, and fun, and get-togethers.

Except that most of that never came to be.

There was that knee surgery in May, that derailed any hope of walking long distances for a while, and thrust us into 2x a week PT.  Which, even though we LOVE Dr. Jill, can be daunting in the schedule.  And, it eliminated most day trips that could easily be taken for granted, if you don’t have to factor in that a walk more than about 3/4 mile is out of the question.

And while that was going on Daddy was rebuilding the deck.  Alone.  For three months.  Every spare minute of April, May and June.  It looks so beautiful.  Maybe next year we will get some people over to relax and enjoy the deck, and the grass.  The new grass, artificial, durable, and a drastic improvement over the old side yard.  Yes, maybe next year.

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We got the pool open the first week in July.  And July had drama “camp,” and I use the term VERY loosely.  And July had swim practice.  And July had doctors, some regular, like PT, others on the 6 month schedule.  And some blood tests, and some ultrasounds, and a bone density test for mom.  I think I stopped counting at 30 appointments.

But, thankfully August had Disney.  And there are few other things that can bring me such joy as a vacation with my family to the “Happiest Place on Earth.”

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And August had it’s own set of appointments, including hand surgery to remove a vascular lesion from her palm.  And setting up the whole wisdom teeth thing for September.

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So it’s easy for me to be sad.  And down on things. Because I want a do-over.  But, I guess that’s normal.  Because most people probably do.

I sat down tonight to get my head clear.  To “flip it,” and get my head and my heart in the right place for tomorrow.  I sat down to acknowledge the many things I have to be grateful for, and the things that went WELL this summer.

reasons to smile

So, in no particular order…

  1. The new deck.  No splinters.  No maintenance.  Pretty.  And finished.
  2. The new grass.
  3. Walking barefoot in my backyard.
  4. Road trip to West Virginia, that I took alone, on a very rainy June weekend to meet some Marines.  Healing help.

    My road trip to West Virginia

    My road trip to West Virginia

  5. Listening to my girl sing.  In pain.  In joy.  In the shower.  In the living room.  In the car.  Anywhere.
  6. Healing progress.  From both recent surgeries.  And the resilience to continue to endure.
  7. Laughter.  Mine.  His.  Hers.  Friends of hers.  Strong laughter.
  8. Disney.  I’d go back three times a year if I could.
  9. Graduation party, bridal shower, and a wedding.   Mom being 18 years cancer free.  Meghan turned 12, and Felix had a birthday too!  We celebrated Pop’s 96th birthday.  Celebrations.
  10. Board games.
  11. Green tea – together.
  12. Trips to Ralph’s.
  13. Watching my all time favorite movie, “Dead Poet’s Society” with my girl.
  14. Nutrition packed shakes, EVERY day.  Even in Disney.  Fueling my body.
  15. Reading a book my friend in Australia wrote about Cowden’s – for all the world to see.
  16. Antibiotics that heal recurrent infections.
  17. Walking.  5 miles a day, most days.  and at least 10,000 steps every day since July 8th.  Goal met.IMG_5094
  18. Last, and DEFINITELY not least, were my walks with Mom.  My healing walks with Mom.  There were so many mornings when she and I walked together, 2 miles, with 2 dogs.  We talked this summer more consistently, and for longer, than we have in a long time.  I think this was one of the best things that happened all summer.  She is a strong lady.  Lyme Disease took a stab at her this summer.  Apparently for the second time.  And she has told it where to go.  So often she is a grounding force for me in this never-ending battle to remain BEATING COWDENS.  I will miss those walks.  They were not just for the FitBit, but so much for the heart and the mind.

    My Mom. My first hero. My friend. We need an updated picture.

    My Mom. My first hero. My friend. We need an updated picture.

And that is just what my compulsive, reflective, organized self needed.

Because now, I feel a little better.  It wasn’t what I had hoped.  There was sadness, and worry. for my own girl, and for so many others.  For adults I love, and for a former student fighting a formidable battle.

But, I woke up every day.  And lots of days the sun shined.  And fun doesn’t have to stop just because school starts.

So as I lay my head down tonight I will do my best to do it with gratitude.  For new days.  For new seasons.  For a job with a kind boss, helpful colleagues, and wonderful children.  For a job that begins new every year.  For the knowledge that every day, every season, will hold blessings and challenges, for us and for everyone.

I wish you all a wonderful fall, but I’m not closing the pool just yet….

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Pause…

Sometimes we need to pause.  We pause only briefly, with hope of it lasting the whole week, and the reality that there will be interruptions along the way.  We pause, knowing that pain is ever-present, acknowledging with gratitude any breaks we are granted.  We pause knowing surgeries will always be forthcoming, but for right now they can wait.  We pause because with the pace of this life it is easy to miss the little things, the important things.  We pause to enjoy noise that is not NYC traffic, or the sound of a doctor’s office.  We pause to quiet the phone calls that need answering.  We pause so we are better prepared to battle this Cowden’s Syndrome.  We pause to remind ourselves of the beauty, within our family, and around us in the world.

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Breathtaking sunset

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Hanging around the hotel

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Friendly EPCOT duck

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Animal Kingdom Safari

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Animal Kingdom Safari

Last week we were in Walt Disney World, in Florida.  It is our favorite, actually the ONLY vacation spot we have ever had as a family.  We are fortunate to have celebrated Meghan’s birthday there for the last 8 years.  Disney is crowded, and hot, and pricey, and all the things the haters of the big Mouse want to say.  But, to the rest of us, there is a magic – a magic that endures regardless of age.  It’s hard to describe it, unless you feel it, but we do.  There is magic in avoiding doctors.  There is magic in eating safe food from restaurants, and having a bakery that even makes cookies, and cupcakes for your gluten, dairy, soy free girl.  So much of what we can’t do during the year is because of scheduling, and food.  It seems silly, but with those obstacles gone, it is a recipe for success.

Even the negativity that tries to get at us, ultimately fails – https://beatingcowdens.com/2015/08/09/theres-nothing-wrong-with-that-girl/

The trip was one of the smoothest we have ever had.  (Aside from me unpacking late the first night to realize I forgot the enzymes Meghan needs to eat!  Fortunately I ALWAYS have extra, and Mom got them overnighted so they arrived in the nick of time Saturday.  Tragedy averted.  Magical.)

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And I was only on the phone with one doctor.   Once.  The WHOLE WEEK!

I sometimes look at others vacation photos and think it would be nice, and perhaps a lot less costly, to change things up.  It might be interesting to see a few new things.  I would love to travel the country one day.  But, there will be time for all of that – later.  For now it’s about magic, and the treasure of having a preteen who still feels the magic in her heart.

Plus, we have some favorite rides…

She's more brave than me, but we DID it!

She’s more brave than me, but we DID it!

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TWICE!

TWICE!

Some Magical birthday wishes…

Her first

Her first “REAL” cake in YEARS!

https://www.erinmckennasbakery.com/orlando/

Time with

Time with “BOB” our favorite entertainer…

http://www.yehaabob.com/

And a birthday tradition…

A great view…

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Spectacular nighttime shows…

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Some Mom time...

Some Mom time…

Some Dad time...

Some Dad time…

And some time to just be 12, all by herself...

And some time to just be 12, all by herself…

There was plenty of time for me to walk.  And think about whatever I wanted, or nothing at all.  And we three started each day with our Isagenix… (fool me once – but never twice… for those of you who remember last year’s debacle!)

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There were days I felt like I could go on forever…

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And days to just be a little silly…

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And as is the case every year when we pull away from our “home” for the week, I find my heart beating a bit faster.  My mind begins to race back on track.  And I don’t really like it.

This has been a wild summer.  One too many doctor’s appointments, too few days of simple relaxation.  And even as I am ALWAYS so conscious it could be much worse, I feel a bit of longing to do it all again, or maybe tack a few weeks on the back-end…

But, time does as it pleases, and eight days from now my girl will be recovering from another hand surgery.

We’ve begun to prepare for fall activities, and we are looking to sure up a date for our PTEN Foundation/ Global Genes Project fundraiser in February.

BEATING COWDENS takes stamina.  Fortunately, we’ve got that.

And even more – we’ve got each other.  And if we pause for no other reason, it is so we NEVER FORGET…

Between us we've got unparalleled strength, and never-ending love.

Between us we’ve got unparalleled strength, and never-ending love.

To the Middle School Girls Who Doubt My Daughter…

July 20, 2015 To the Midle School Girls who doubt my daughter’s medical conditons: I want to start by telling you, I know it’s not your fault.  You are generally healthy.  You were raised by people who are generally healthy. … Continue reading

“I Am From” – Guest Blogger Meghan

I Am From

by Meghan

I am from Love

I am from mutts barking at night

I am from swims in the backyard pool

I am from hospitals and procedures

I am from suffering

I am from anticipation of how my life will survive

I am from anguish after surgery

I am from crying in the hospital at night

I am from fear of not being strong enough

 take pride in your pain

I am from doctors saying this cannot be

I am from hearing that I am unusual

I am from paralyzing fear of iv’s and needles

I am from being cast out for my pain

I am from fear of not surviving from the pain

 Just-Tired

I am from baby blue walls

I am from a home that cares for me

I am from a room of toys so big it’s like a store

I am from a home with clouds as chairs

I am from a home like a chocolate bakery

I am from the calming smell of Yankee candles

I am from the smell of brand new books

I am from the pool

I am from the thrill of swimming

I am from competition

I am from Wagner Aquatics and CSI

I am from the relief that comes with butterfly

keep-calm-and-swim-butterfly

I am Lori

And Felix

I am from Barbra

And Leon

I am from the Ortegas

And I am from the Thompsons

I am from many beliefs

I am from hurt and hatred

And I am from love and compassion

I am from different weather each day

I am from winter devouring sweet spring

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I am from Christmas trees going up after Thanksgiving

I am from a special Thanksgiving meal the day after

I am from August Disney trips

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 I am from spices

I am from cookies and cake

I am from avocado

I am from Isagenix

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isagenix shake

I am from playing with my first dog Lucky

I am from meeting my second dog, Allie at pet smart

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I am from church at Zion and Castleton Hill

I am from the beliefs that Jesus will rise again

I am from running up to the pulpit with Lucky in tow

I am from Gandhi’s “Be the change you wish to see in the world”

be the change

I am from adventure and fantasy filled books

I am from Rick Riordan and J.K Rowling

I am from action figures and comics

I am from DC universe

I am from Wonder Woman

I am from He-Man

I am from Batman and Superman

I am from the sidekicks

I am from X-Box 360 and video games

I am from mythology

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I am from the LOVE of my family

BEATING COWDENS!

Finding my “Happy Thought”

It was a few months ago.  I can’t quite recall the date.  It wasn’t my finest hour. (or day, or days…)

I was grumpy.  Worried.  Angry about the struggles my girl was being forced to endure.  Twisted about a future of doctors appointments and surgeries.

I had noticed she seemed extra down, and I took it as my cue to worry harder.

At some point, I broke down, expecting a clear answer to the question, “What’s wrong?” so I could continue the business of worrying some more, and searching for answers.

But the answer wasn’t even close to what I expected.

“Mom, you need to find a “Happy Thought” because you being like this all the time is really affecting me.”

Neverland happy thoughts

Um, ouch.  Wow.  And she sure told me.

She wasn’t being disrespectful in the least.  We have worked on honest speech and clear language, for survival – and to help us prep for the teen years.  She was doing exactly what I asked of her.  She was telling me what she was thinking.  And she was right.

Years of parenting a chronically ill and allergic child have left me in a permanent hyper-vigilant state.  The “other shoe”  has been known to drop without warning, and there is a constant need to search, study, learn, and discover whatever I can about whatever is plaguing my girl.  I am her advocate.  I am her voice.  We have between us undergone at least 17 surgeries in the last 11 years.  That doesn’t include countless hospital stays, tests and procedures.  There is always a pile to contend with, whether its bills to fight or file, prescriptions to order, reports to hunt down or appointments to make.  Life is very busy.

Neverland-HOOK

There was a time I used to walk for fun.  Hours on end with my music in my ears.  I would walk for miles.  I would walk everywhere.  There was a time I would read for fun.  Not medical books.  Just leisurely reading.  I used to watch “Law and Order.”

Now between working full-time, parenting full-time, chauffeuring to appointments, trying to make swim practice, keeping food in the house, keeping some semblance of order, including clean laundry, clean curtains, and clean cabinets – it was easy to get swallowed up by obligation and forget the joy in my life.

To be quite honest with you, there isn’t much I would change.  Do I sometimes miss those long carefree walks?  Definitely.  But, would I for one second trade one bit of my beautiful, tenacious, funny, stubborn, intelligent little girl?  Not a chance.

Hook movie

We watched “Hook” a few months back.  It was a rare occasion when I sat to watch a movie.  It is one of my favorites.  And for those of you who might not be familiar, it’s a “Peter Pan” spin off where Peter ended up all grown up – a lawyer.  He forgot his magical youth, and the story takes him back to Neverland to find it again.

I am sure this is where she got her admonition for me to find my “happy thought,” as Peter needed his to remember how to fly in order to beat Captain Hook.

I thought and I thought, long after she had said the words.  I was tempted to compare myself to other adults, and justify my grumpiness.  But I resisted the urge.  These words weren’t spoken to another adult.  They were spoken to me.  And what a gift she had given me.

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Transformations don’t happen over night, but I have forced myself to become aware of the things that give me pleasure.

I love to write.  And so I have been trying to give more attention to my blog.  Therapy on a keyboard.

I have taken my feet instead of the car wherever I can, and wherever time allows.  I can’t walk for hours, but I can appreciate the short walks and relish them more.

I am realizing that a happy Mom is some of the best help I can give.  I won’t know all the answers.  I can only give her the same honesty I ask of her, and I can only do my best.

And while we focus on being positive, and its something I ask of her all the time – it’s not fair to ask it and not model it.

So we are all a work in progress.

And when I really soul search for what makes me happy, my pleasure really lies in seeing other people happy.

My other passion, my other therapy, is my Isagenix.  I fell into this company 2 years ago when my husband was in need of fast, significant weight loss.  For a year I bought products for him diligently.  He maintained the 50 pound weight loss he attained in the first 3 months, and now, 2 years later is working on “the last 20.”

 

I watched him for the first time in our marriage lose weight to keep it off.  I watched him gain energy, and generally feel better.

And I did what any Mom would do.  I researched – for Meghan.

And as I read and read and looked at articles, and the science behind the program, I heard the familiar musings that my trusted alternative medicine doctor had been sharing with us for years.  The same ones that helped us transform Meghan from “sickly” to chronically ill.  Several major steps up.  Trust me.

And I started to give my girl shakes full of protein, and nutrients, and she felt better, and better.  And soon she was asking me for more.  Brain food.

But it wasn’t until May of last year, a full 11 months after I had been giving the products to the two people I love most in the whole world, that people started asking me.  And then I couldn’t stop talking about the amazing things I had seen in my house.  And soon I had 5 friends all feeling great as well.  I was giddy.

I was now making money for helping people eat well.  Amazing to me.  I started to attend training, and listen in on conference calls.  I was no longer scared of “Multi-Level Marketing.”  I became educated about the systems and the generous compensation.

And one day, as my family sometimes does, I got called out again.  This time it was my husband.

I had lost a lot of weight – mostly due to stress.  I had dropped several sizes and was scrounging for clothes.  “YOU look sick,” my husband said.  “Drink a shake.”  And I did.

www.meghanleigh8903.isagenix.com

And it all came together for me.  I am down another size since then.  I have begun walking more.  I weigh what I weighed junior year of High School and I don’t intend to ever look back.  I am able to endure more stress, with greater ease.  I have stopped all diet soda.  I drink green tea and water.  I don’t snack much.  I eat better than I ever have in my life, and it’s easier than ever before.  The nutrients I get between that AM shake and my lunch time bar are more than I was getting in days with my old lifestyle.

I get happy when other people are happy.  I get pleasure watching as people remember what it’s like to feel good again.  I enjoy sharing stories, and telling people about a company that I feel strongly “got it all right.”  And they pay me too!

I am constantly telling Meghan that Cowden’s Syndrome does not define us.  But, in fairness, actions speak louder than words.

It’s been months since I was told to find my “Happy Thought,” and I hope I never forget that day.  While we still have our ups and downs it serves as a reminder for me that I am no good to those I love unless I find happiness myself.

Meghan and Felix – they will always be my happiest thoughts.

But I love my family, and God, and exercise, and nutrition, and cool breezes and music, and flying birds, and summer…

I strongly encourage you to find your “Happy Thought.”  It’s tough to start looking when a 10-year-old calls you out.

Loving my heart - outside my body- my biggest happy thought.

Loving my heart – outside my body- my biggest happy thought.