Playing in Pain

Published on April 27, 2014April 27, 2014 by beatingcowdens3 Comments

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.

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.

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.

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.

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…

Losing the Battle – to Win the War!

Published on March 30, 2014March 30, 2014 by beatingcowdens2 Comments

Friday’s thrilling adventure at Borough Hall ended as so many days do. So excited to tell her story, so amazed by her experience I thought she’d be on the phone all night.

But as we walked up the street to the parking lot she whimpered. “My knee. The old pain. How could it still hurt with the Celebrex?”

Good question, I mused, as I tossed her a cursory answer about the weather, and people’s joint’s aching.

I left out the part about how MOST of those achy people are at LEAST 40 – not 10. But she knows that already. Can’t put much by her.

We headed home, but as things often do here the downward spiral had begun, and it was a quick one.

I soaked her sore knee in an epsom salt bath for some relief, but the migraine that she had been battling all through school was starting to win.

By about 7:20 she told me she was going to bed. Never a good sign.

No fever. No signs of “illness,” but we are frustratingly used to this. There is nothing tangible that any doctor can seem to figure out as to where all this pain comes from. Yet it does. All over. It’s real. It’s torturous to watch, and it frustrates the free-spirited agile athlete trapped in this painful body.

She woke around 9:30 this morning. I was already at the bank. The text simply said “headache.” My husband is a man of few words.

When I got home at 11 to take her to her 12:00 appointment she was in a dark bedroom moaning in pain while Felix rubbed her head.

We tried some saline, some food, her morning pills. No success. No appointment.

I ran to the party we planned to attend as a family, to wish one of our favorite 5 year-olds a Happy Birthday.

I woke her at 2:30 like she asked. The CYO meet was at 4. The highlight of her week.

We tried a warm shower. More saline.

“I just can’t do it,” she half whispered, half screamed. “WHAT IS THE MATTER WITH ME?”

My stomach sank. That was the proof positive that things were not improving. She looks forward to every one of those meets.

After reassuring her that it’s nothing she’s done, or does… she told me to text her coach and tell him she was really sorry.

And she was.

Another fun event missed. Another pleasure lost.

My 10-year-old amazes, impresses and consoles me, as she says, “Cowden’s may have won the battle today – but it won’t win the war.”

She spent the better part of the day in her bed – willing away the body pain and the headache.

She doesn’t want to feel like this. And I have to tell you – she handles it pretty damned gracefully.

No one she met yesterday would have believed this was the same kid. From a full on powerhouse of a conversation with a respected elected official, to barely being able to lift her head.

That’s how we roll here.

That’s where her sense of urgency comes from. She NEEDS people to know the real deal. Whether they want to or not.

It’s 2:30 AM Sunday. They have been resting for hours. I had to sort out the banking mess and the subsequent paperwork it generated this week. I needed a new list.

See my mind is so often preoccupied that I forget… a lot.

Because deep in my nagging Mommy gut, I feel like there is more. We are missing something. And I hope its minor. Or that I am wrong.

No one can explain all this pain. And lots of people have had the chance to try.

People wonder how I stay so organized, or why. I think it’s because I spend a lot of time waiting for the other shoe to drop.

I’m over making plans. I get it. We can try to commit to things in advance, but our acceptances will always be tentative. We have to make our decisions in the moment.

The win/loss column waffles sometimes, but we will by the grace of God, the power of prayer, and our love for each other, come out on top. Failure is not an option.

We are BEATINGCOWDENS. We will!

Keep Swimming… Just Keep Swimming

Published on March 12, 2014March 12, 2014 by beatingcowdens3 Comments

This one is a favorite of a dear internet friend :-) — This one is a favorite of a dear internet friend 🙂

This image has been on my mind all week. Truth be told there is an awful lot on my mind, and I apologize that most of it is likely to come out jumbled. When I don’t get to the computer regularly there is all this stream of consciousness stuff…

My girl feels cruddy. And I know, “its a big surgery,” and “it takes time to even things out.” But it really stinks. Her thyroid numbers are way out of whack. The endocrinologist is absent… most of the time, and even if he couldn’t answer my questions, I’d like to be able to ask them. If my thyroid numbers were as wacky as hers you’d be scraping me off the floor. Here comes the crazy mom – trying to restrain myself for one more blood work cycle before I fire him too. Good thing I live in a big city. I might well run out of doctors otherwise.

It is so hard to watch her – feeling betrayed by her own body.

She is bright. And kind. And super rational. She gets the whole idea that people have it worse. She is grounded.

But sometimes she is 10. And she doesn’t understand why she can’t keep up. Cognitively she can dance. But physically…

She has to decide on a Friday if we are busy on Saturday morning. This way she knows if she can play gym. She gets through the gym period, and often has the time of her life… but we have to block out hours on Saturday to recover. She played last week. She had the time of her life. Good thing the school staff doesn’t have to watch her get out of bed on Saturday.

And running. How she LOVES to run. And she’s fast. But she can’t. Not for long anyway. Tendonitis, inflammation. And forget it this week as we TRIED to lower the Celebrex.

Never mind the swimming. She belongs to a team that practices 4 times a week. On a good week we get there twice. Not for lack of trying, but exhaustion gets in the way. It is CYO season now, so she is with a more recreational team too. Some fun times. But she wants to be faster. And she could be. But her body betrays her. And it makes her angry.

And now the headache. The migraine returned 2 days ago despite the recent medication increase. She is just so very tired. The neurologist called me tonight. Increase the Celebrex. See if that helps. So much for less medicine. Let’s pray for relief.

I think alot about the others. I think about the other’s with RARE Diseases. I think about the ones less fortunate than us.

I also think about the other’s with Cowden’s Syndrome. I have never met them – any of them except my own girl. But, we “know” quite a few. There are some I keep in touch with on an individual basis, a few Meghan corresponds with, and the bulk of them come from a Facebook group for Cowden’s sufferers. We share experiences and ideas, and successes and disappointments. We toss things out to each other before the rest of the world. We speak safely to people who “get it.” And although even among us our symptoms vary widely, and I believe a lack of research keeps us from being sure what is Cowden’s related, they are my best support.

I often go to bed and wake worried about these people I’ve never met. I think about their physical struggles, and their family struggles. I pray for them when they have tests, and surgeries, and they do the same for us. People could argue they aren’t “real” friends. I would have to disagree. They give me hope.

Then there are days like yesterday, when you arrive at home after 14 hours at work to find a package on the counter. And inside the package are jeans for Meghan and I. Carefully sewn on each rear pocket is the denim ribbon symbol. Also in the package was a bag “Hope, It’s in our Genes.” Yep. It sure is. A friend of my sister’s. Inspired my some crazy words she’s read here. Go figure. Grateful.

And there are the events coming up. The fifth grade events. The ones where she will try her best to fit in. The ones where her PTA has carefully worked behind the scenes to help her feel “normal” as they serve her dinner at the Father Daughter Dance, and the Fifth Grade Dance. The trip that someone will have to come to – because there won’t be any safe food there, and the growing realization that so much socialization in life revolves around food. Just another way to feel different. But she plugs along. Keeps that smile. stays focused on the good as best she can. Because she is acutely aware that there is a lot of good. And painfully aware that things are fleeting.

We miss my father. It’s only been a few months, but every day seems to contain a bill, or a banking issue, or a quest to sort through the photos left behind so I can copy them for my siblings and get about the business of sharing them with the world. There is a glitch in each direction. No major problems. Always just a series of minor ones. He may not have been always around, but the time he was was powerful. Maybe I keep myself too busy. Maybe I worry about tasks insignificant to others. But I do, we do what we can to keep his memory alive. We talk about reality, and we keep our most special missions close to our hearts.

There should be sunshine and roses. But there isn’t. Well maybe there is… if we look hard enough. All I seem to hear are stories of tragedy, heartache and pain. In my own family, and in general conversation there are serious illnesses, untimely death, suffering, pain, and sadness. I don’t profess to know the grand plan. Not for a moment. And I am sure its better that way. I have only learned to find the blessings I can in whatever I can, as frequently as I can. That is what keeps me sane.

I am far from perfect at this. FAR from perfect. But I – like all of us, am a work in progress. So as the days sometimes seem insurmountable… I remind myself, and my girl – that we have to follow Dory’s advice…

Rare Disease Day 2014 – Through Meghan’s Eyes

Published on February 27, 2014 by beatingcowdens11 Comments

Yesterday, our local paper published an article about Meghan and Rare Disease Day.

http://www.silive.com/news/index.ssf/2014/02/post_738.html

Today, the Borough President came to our school about a 4th Grade reading program, and was so interested in Meghan’s story he took the time to talk to her. She was so thrilled by his genuine nature, and his true interest in her. Not too shabby of a smile for a kid just 2 weeks post op from a complete thyroidectomy!

Meghan chatting with Borough President Oddo!

Today, Meghan addressed the school about what it was like to live with a Rare Disease. She spoke eloquently and passionately. The students were phenomenal. She was exceptionally BRAVE.

This is her speech.

Living with Cowden’s Syndrome

Every day I have pain. Cowden’s is a Rare Disease that never gives you a break and always keeps you on your toes. Cowden’s is a blessing and a curse. I am grateful to Cowden’s, for it has made me who I am today. Cowden’s is also a curse, to have to go through what I do. I DON’T want others to have to do what I do. NO ONE should have to endure the countless doctor’s appointments, tests, hospitalizations, and surgeries that a person with Cowden’s Syndrome has to endure.

Today is February 28th. To many people today is just Friday, but to others, February 28th is Rare Disease Day. Rare Disease Day is to raise awareness about Rare Diseases world wide. Rare Diseases are an issue. 50 percent of Rare Diseases affect children. 300 million of the earth’s population has a Rare Disease. There are over 7,000 Rare Diseases and less than 400 treatments with, currently NO CURES! With Rare Diseases you need all different types of treatments. Treatments and surgeries can be helpful, but they don’t fix the problem permanently. Rare Diseases aren’t contagious. If someone in your family, or a friend of yours, has a Rare Disease, that doesn’t mean that you will have one.

We chose the movie BRAVE for tonight’s movie night on purpose. When you have a Rare Disease you have to be brave. Individuality is very important. No matter who you are, EMBRACE it and be BRAVE. Be an individual. Being BRAVE is about not being scared to be you. Don’t just follow other people. BE a leader, be BRAVE! You are who you are so why not recognize that and make the best of it? Explore and be BRAVE.

Until September of 2011 I did not know I had this Rare Disease, or ANY Rare Disease. All I knew was that my body was far from NORMAL. All I could do was be BRAVE. Every single second of every single day all I CAN do is be BRAVE. You never know what is lurking around the corner. All you can do is prepare yourself and stand up tall against all odds. All you can do is be BRAVE.

Once I learned that I had Cowden’s Syndrome I researched it. It means that my PTEN gene is broken. Your body is made up of all sorts of G-E-N-E-S not J-E-A-N-S like the ones you wear. PTEN is the gene in your body that keeps your body from growing tumors. With a broken PTEN gene, I learned that my body was more likely than other people’s to grow tumors, and that sometimes those tumors could be cancer. Imagine how scared I was, and how I needed to be BRAVE. Cowden’s Syndrome has different versions of the same symptoms on each person. 1 in 200,000 people have Cowden’s Syndrome. Another thing I thought was interesting was that 80 percent of rare diseases are from genetic origin.

I’ve always wanted something to represent me. I knew there was the gold ribbon for Childhood Cancer, the pink ribbon for Breast Cancer, so on and so on. I NEEDED something to represent me. That is why I have this first of a kind denim ribbon necklace. It is the first of its mold and has a ONE OF A KIND inscription on the back. My mom and dad have one too. The support I get from my family is incredibly inspiring. I REALLY want to make more people aware, as you can see.

All you can do with Rare Diseases can do is be BRAVE. Look danger, sadness, disappointments, and diagnoses in the face. Be prepared. Don’t let it break you. For each and every Rare Disease, stand up to the challenges it brings, and don’t let them break you. Let it make you stronger.

When I’m here at school I put on a mask. A mask of happiness, of making people think that I can brush everything away. No one knows that under that mask is a girl with the weight of the world on her shoulders. All I can do is be BRAVE. I cannot do what everyone else can. I struggle to fit in and find acceptance in the world. All I can rely on to make me smile and laugh are my friends. They are part of the reason that I can keep up the mask. I will never let anyone know what I think. That is who I am and what I do. NEVER judge someone by what they look on the outside. I am a perfect example of this.

Be KIND, be AWARE, Rare Diseases are EVERYWHERE!

And then – as if I wasn’t proud enough…. she put this video together all by herself….

Such a proud Mom! Spreading the word…. LOVE this kid.

Can’t wait until tomorrow for MOVIE NIGHT!

Recovery – the real deal (Phase 2)

Published on February 14, 2014February 14, 2014 by beatingcowdens7 Comments

It was almost 11 last night when we were cleared to leave recovery, and taken to a bed on the Peds floor. Dad had to leave to head back home before the next round of snow began. After all, he needed to have a car ready for our (hopeful) Valentine’s Day discharge.

So we settled into a tiny, awkwardly laid out room. trying not to disturb a roomate who likely would have preferred not to be awoken at 11 to share a room with someone she didn’t know.

By that point I might have been a little difficult. (I know that is SHOCKING!)

But as we settled into the room it became apparent that there was no place to walk safely. Some rearrangements were made, and the reality that she couldn’t possibly see the TV was softened by Amazon Prime (on demand) on the laptop.

She was hungry. At this point she was close to 24 hours with no food. I try not to let her go four hours. Her stomach needs constant gentle reminders it hasn’t been forgotten to keep it from getting angry. They said soft and clear. We tried apple juice. Then they offered an italian ice with soy protein. Not so much. Another juice I was told. And I should have trusted myself.

Soon after came the familiar green face from the child with a body full of toxic anesthesia crap, AND apple juice – which just isn’t on her list of beverages.

She is always my angel girl. Even post op – she got herself to the pail before her body forcefully removed its toxic contents.

I took the opportunity to change the gown and bed sheets, because – why not? And by midnight she was on my laptop watching “The Hunger Games.”

They said clear liquid. I said ginger ale and gluten free pretzels. I win because I don’t ask. And she started to perk up.

Pain medicine in place, she enjoyed the movie. Except the blood draw. Which fortunately was through the IV. Then again an hour later. (Good thing she wasn’t asleep) only to find out her blood sugar was crazy out of whack. The finger stick brought it into a much more normal range. Thank goodness!

By 2:30 there were actually 5 uninterrupted hours of sleep for my exhausted girl.

She awoke at 7:30 immediately remembering the pain of having your throat slit open, and a small lumpy organ removed. Today things were more stiff. All the local anesthesia gone. She was hurting. And its a hurt I remember. So it broke my heart worse. You never realize how many things you use your neck for, until…

Brave girl. Held it together. Had some more of her pretzels and ginger ale, and even some of her chicken breast I brought.

We wheeled and dealed and got her to agree to a nap after her second movie. And so she rests now.

Calcium levels keep us here. Wondering and working to determine parathyroid damage. The synthroid has begun.

The doctor will set us up with restrictions, rules, and orders. When he’s able.

For now our chart reads “Pending Discharge.”

We are ready, and I am behaving…. I promise.

Ten years ago we spent Valentine’s Day in the hospital. And here we are again. What a decade. It’s not glamorous by any means – but I am still with the loves of my life, and that makes me a lucky gal.

Recovery – the real deal (Phase 1)

Published on February 13, 2014February 13, 2014 by beatingcowdens5 Comments

So a huge part of writing this blog is about raising awareness of Cowden’s syndrome, and its realities. Some of the realities are really not so nice.

Cowden’s Syndrome involves surgery. Lots of it. Surgery really sucks. Sorry, but it does.

General anesthesia is awful. Toxic crap. Especially awful in a body that isn’t fond of toxic crap. Top that off with a breathing tube when your throat is being cut, and its definitely an uncomfortable wake up.

The surgeon said she did well. He said he got the whole thyroid and the vocal nerves are intact. He said she had many nodules. Numbers in the teens. A bunch were small. A bunch were not. He said there was lots of scar tissue from her three previous biopsies. Only three FNA – tiny microscopic needles, caused significant scar tissue.

Cowden’s Syndrome – “HYPERHEALING is our Superpower” What’s yours?

Surgery number 11 – done. Procedures…. I’ve lost count.

Pathology 5 to 7 days.

She is sitting up, looking at her ipad. A professional. A tough girl.

Her Daddy is on his way home. Home to get the car. Hoping. Praying that the calcium levels are good, and the thyroid levels are good, and tomorrow we can go home.

That brave face hides this... — That brave face hides this…

And sometimes needs this... — And sometimes needs this…

Two of my girl’s favorites…. “Let it Go….”

The snow glows white on the mountain tonight,
not a footprint to be seen.
A kingdom of isolation and it looks like I’m the queen.
The wind is howling like this swirling storm inside.
Couldn’t keep it in, Heaven knows I tried.
Don’t let them in, don’t let them see.
Be the good girl you always have to be.
Conceal, don’t feel, don’t let them know.
Well, now they know!

Let it go, let it go!
Can’t hold it back any more.
Let it go, let it go!
Turn away and slam the door.
I don’t care what they’re going to say.
Let the storm rage on.
The cold never bothered me anyway.

It’s funny how some distance,
makes everything seem small.
And the fears that once controlled me, can’t get to me at all
It’s time to see what I can do,
to test the limits and break through.
No right, no wrong, no rules for me.
I’m free!

Let it go, let it go.
I am one with the wind and sky.
Let it go, let it go.
You’ll never see me cry.
Here I’ll stand, and here I’ll stay.
Let the storm rage on.

My power flurries through the air into the ground.
My soul is spiraling in frozen fractals all around
And one thought crystallizes like an icy blast
I’m never going back; the past is in the past!

Let it go, let it go.
And I’ll rise like the break of dawn.
Let it go, let it go
That perfect girl is gone
Here I stand, in the light of day.

Let the storm rage on!
The cold never bothered me anyway…
And ROAR…

“Roar”

I used to bite my tongue and hold my breath
Scared to rock the boat and make a mess
So I sat quietly, agreed politely
I guess that I forgot I had a choice
I let you push me past the breaking point
I stood for nothing, so I fell for everythingYou held me down, but I got up (HEY!)
Already brushing off the dust
You hear my voice, you hear that sound
Like thunder gonna shake the ground
You held me down, but I got up (HEY!)
Get ready ’cause I’ve had enough
I see it all, I see it now

[Chorus]
I got the eye of the tiger, a fighter, dancing through the fire
‘Cause I am a champion and you’re gonna hear me roar
Louder, louder than a lion
‘Cause I am a champion and you’re gonna hear me roar
Oh oh oh oh oh oh
Oh oh oh oh oh oh
Oh oh oh oh oh oh
You’re gonna hear me roar

Now I’m floating like a butterfly
Stinging like a bee I earned my stripes
I went from zero, to my own hero

You held me down, but I got up (HEY!)
Already brushing off the dust
You hear my voice, you hear that sound
Like thunder gonna shake the ground
You held me down, but I got up (HEY!)
Get ready ’cause I’ve had enough
I see it all, I see it now

Ro-oar, ro-oar, ro-oar, ro-oar, ro-oar

I got the eye of the tiger, a fighter, dancing through the fire
‘Cause I am a champion and you’re gonna hear me roar
Louder, louder than a lion
‘Cause I am a champion and you’re gonna hear me roar
Oh oh oh oh oh oh
Oh oh oh oh oh oh
Oh oh oh oh oh oh
You’re gonna hear me roar
Oh oh oh oh oh oh
Oh oh oh oh oh oh
You’ll hear me roar
Oh oh oh oh oh oh
You’re gonna hear me roar…

What if every day was a snow day?

Published on February 3, 2014 by beatingcowdensLeave a comment

Now before you jump through the page – hear me out.

The kid in you may be cheering. “SNOW! FUN! PLAY! ”

And the grown up in you may be growling. “TIRED OF SHOVELING AND GETTING STUCK AND BEING COLD.”

But actually, neither is exactly what I meant.

I got a message around noon that my daughter was hurting. The pain has been bad again. The weather doesn’t help. I fought through a wicked virus last week, and there is always the possibility of it eating at her. Her nerves are shot. The thyroid consult is Thursday. Consciously or not – she is worried. I’d be shocked if she wasn’t. I am too.

And between the weather, and the stress, there is the pain. It started a few weeks ago in the shoulder. It found its way to the ankle. Physical therapy in between. Swim practice ends up being haphazard and inconsistent. My heart breaks. I am distracted. Most of the time.

But this afternoon, when we left school together, and there were 8 inches of snow on the ground where it hadn’t been a few hours earlier – no one we were about to meet would have had any real idea of what I wrote in the last 2 paragraphs.

After settling Meghan into the warming car I set about clearing it off. Its a decent car, but a sedan,not an SUV, and while it can handle 2 or 3 inches, it is NOT designed to drive in 8 inches of anything. I ended up on my bottom twice as I finally got the windows and roof clear enough to be safe and legal.

Then, I decided to pull out. Well I went through all the motions anyway. There was lots of spinning and not much moving.

Then there were people all around my car. Some I knew, others I don’t think I ever met. And for a moment getting my car out of the spot was the most important thing on their agenda. They guided me as I behaved like a ditsy distracted woman. They had no idea how full my head was, and they passed no judgement. They were patient. I got free.

I kept driving, ready to make the first right when a woman waved me away. Someone was stuck.

I proceeded straight slowly, and when I tried to move slightly to the left to be sure I cleared someone in the road, I quickly ended up on the curb.

Fortunately no cars were in the way. But I was not moving.

And then… there were people. New people. Surrounding my car. Strategizing. Thoughts of Thursdays appointment still waffling around in my head, I desperately tried to focus. They worked at it. I did as they said. And in a few moments, I was free again.

I kept to the main roads for as much of the rest of the trip as I could manage. And I was doing well until I had to stop to let a car pass at the service road. Stuck again. This time I had the wherewithal to free the car on my own. And as I turned down my block, there was a sense of relief.

So I pulled up alongside our other car to quickly shovel out the spot in front of our house. Then I got in the car to back it up. Spinning wheels. Sliding.

Then there was a neighbor. Then another. People I have lived near for 13 years, but I am embarrassed to say I formally met for the first time today.

This time the predicament was a bit more dicey. My new car was literally inches from the old one. A slide in the wrong direction was going to cost me the front corner panel of one, OR BOTH, of my cars.

Hesitant I called my parents house. I knew my Dad would make it down and help me make sense of it. I frantically shoveled until I could see the blacktop of the street, looking over my shoulder and holding my breath as a few cars sporadically made their way down the street. Our other neighbor, a former bus driver, came over and strategized a bit. Before I knew it the two of them were moving my Saturn out of the way. As my stepdad’s familiar smile greeted my from the window of his truck – my neighbors had safely parked both of my cars – without them ever touching!

Relieved. Grateful. Exhausted. I gleefully accepted my Dad’s news that he’d be using the snow blower on the back of our property and I busily got to work on the front. Street to street property is nice… most of the time.

Some time close to five – a few minutes before my husband got home, I walked my sore back into the house to greet the face of my wiped out “I’ve totally had it.” kid.

Close to two hours after I had left my job, I had to stop for a minute and reflect. The chaos of my mind was still swirling about my head.

I chatted with “The Captain” for about 15 minutes in awe of exactly how many angels had crossed my path today. By my count at least 15 people had in some way “paid it forward” to me and my girl.

And I work less than a mile from my house.

So what if every day was a snow day? Well we may have lots more chances to find out. But, more importantly, what if we TREATED each other, EVERY day, as if it was a snow day. What a wonderful world it would be.

Reality – tough to swallow

Published on January 8, 2014 by beatingcowdens5 Comments

I am a huge fan of online shopping, and normally I anticipate my orders my counting the days till their arrival.

Except this one – not so much.

It was a purchase made out of necessity, not desire. It sat in my online shopping cart for 2 months before I hit send last night. It will arrive some day next week. It leaves me with mixed emotions.

Gratitude, that it is not a full time arrangement.

Anger that it has to be part of our lives at all.

Frustration for my energetic girl who would rather run, than walk. And would love to do both without pain and bone-crushing fatigue.

Anxiety, about all the ignorant folks who will pass judgment that I hope she doesn’t hear.

Guilt, that my child can walk and so many others can not.

My beautiful girl, as you know by now, has suffered with health issues her whole life. They have ranged in severity, but they have been consistently problematic. The diagnosis of Cowden’s Syndrome in the fall of 2011 answered some of the questions, but by no means all of them.

Research is scarce. The cancer risks associated with our PTEN mutation are real, and documented. But, the rest of the symptoms are shared though anecdotal conversation in small internet groups, worlds apart.

I can not know if, or to what extent, Cowden’s Syndrome explains the other maladies that have plagued her virtually since birth.

There are food sensitivities, on the narrowest list we have ever had she is gluten, dairy, soy, dye, and preservative free.

There was the gall bladder removal at age 3.5, and the pancreatic insufficiency that requires digestive enzymes with every food.

And, despite the most serious precautions, as well as daily probiotics and nutritional supplements, there are still daily stomach aches.

There is the AVM in the knee – the one that needed 4 procedures to finally cut off the abnormal blood flow – for now.

There was the vascular malformation in her hand that the kind surgeon was able to correct last summer – after MUCH angst.

The lipoma on her back was almost certainly Cowden’s related.

And the biopsies. The three thyroid biopsies – the most recent of which still wreaks havoc on my nerves- those are Cowden’s too.

But the chronic pain? The joint issues that make 200 mg of celebrex a necessity – not a luxury…. who knows?

And the physical therapy that is a necessary part of her existence – just to function.

What about the migraines – now well controlled, but not gone?

And I sometimes wonder why she is a bit absent minded? Shame on me. It’s undoubtedly necessary for her to survive. Imagine if she thought of all that every day, and all her daily activities? She would lose that magical smile. And I don’t want that.

The frustration is as palpable as the largest nodule in her neck. She WANTS to do EVERYTHING the other kids can do. She wants to run, and play, and participate with them. She is TIRED of being different. She is TIRED.

Swimming is a good idea, but it takes so much out of her. Last night’s practice got in the way of tonight’s. School was tough. Clammy, hot flashes, uncomfortable. Maybe she’s coming down with something, but more than likely she’s just wiped out.

Three practices a week was the plan. Two became the goal. This week it was one. But somehow its worth it, for her to be able to say she is on a team. To be able to say she swims competitively. To feel somewhat “normal.”

When she was younger I could hide things from her. Now she’s just too smart.

When she was younger I could convince her all the kids get tired. I could deflect her attempts to play too hard.

When she was younger she might not have noticed that an hour in the snow on Friday knocked her out for the weekend.

When she was younger…

But she’s older now. Wise beyond her years. And I have been where she is, and I hated it. She has it worse, and I know she hates it too.

She can swim – pretty fast. Just not too often.

She can run- a few laps back and forth in the gym – as long as she has her Celebrex and PT.

She can play outside for a bit – but not too long.

She can walk too. Until the pain in her legs, or her hip, or her knee wipes her out. Or until she has to surrender to fatigue that will keep her in bed for 13 or 14 hours.

I am grateful. You bet. And sad too. And I think it’s OK to be both.

She spent a few years in a MacLaren push chair when the walking was extra long. Now SHE is extra long – adult sized at 10. Time for adult sized reality.

SO if you happen to run into us when she needs that wheelchair, just smile and say hello.

We will remember to be grateful we don’t need the wheelchair full-time.

When you are tempted to pass judgement on my healthy looking daughter – be grateful you don’t need it at all.

“Donkey Butts!”

Published on August 2, 2013 by beatingcowdens3 Comments

I could barely contain my laughter, but by then we needed a good laugh.

We had just left the hand surgeon. The one who was hopefully going to have an answer, and get Meghan some relief from the persistent pain in her hand and wrist.

I came as usual, armed with a thick heavy binder, a recent MRI CD and reports, a list of all current doctors.

I think I knew we were in trouble when he didn’t seem to see the small mass at the base of her middle finger. You know, the one she says helps alleviate the pain when she presses on it?

He said it was “barely there.” Yes, and 2 weeks ago it wasn’t there at all.

He took an Xray. Obviously low radiation, (I hope) because no one left the room.

The bone structure is fine.

Shocker!

And he repeated to me that the MRI was fine. (YEP, I know.)

Then he asked if she had a rheumatologist.

Yep, she told me to go see a hand surgeon.

And he asked me to explain Cowden’s Syndrome.

But, at least he, 40 years older than the other doctor, had the decency to take out his iphone5 and google it.

I gave the beautifully written letter from our PT. It explained everything so clearly.

Pause… Pause… Obvious think time for the doctor.

“I don’t know what to tell you.”

EXCUSE ME?

” I am sorry I wasted your time.”

That was it. No request that we come back. No suggestion on what to do next. Pay the Copay (AGAIN!) and leave.

So when we got to the car Meghan and I were both agitated. Rightfully so. She is so frustrated. 8 weeks plus, and she doesn’t have the range of motion in her wrist. She was so angry. How is it that these medical professionals keep turning her away with no answers and still in pain?

I told her she was entitled to a fit. She is above that. She got angry for a bit, then frustrated. But I have definitely had many worse fits this summer alone.

Then, she said, “You know what Mom? They are all Donkey Butts! All these doctors that can’t fix anything, and keep wasting our time and your money- that’s what they are- DONKEY BUTTS!”

I spend a good deal of time working with her on appropriate language for a lady. But I almost had to pull over in hysterics from laughing so hard. I think she nailed it – politely and accurately.

Round three Monday 10 AM in Manhattan.