health – Page 10 – beatingcowdens

To My Daughter’s Team of Medical “Professionals…”

Published on April 22, 2015 by beatingcowdens6 Comments

I went to college, and graduate school, and took 30 credits above my Master’s Degree in Education. I earned a job as an elementary school teacher, in the school I attended as a child. And, after 18 years on the job I still love those moments when I am alone with my students, and things just “click.” But, nothing happens by accident. And despite the belief that a teacher’s day ends at 3PM, many a long night has been spent with those very students in mind, planning lessons, and creatively trying to reach them where they need to be met. I am not always successful in my execution, but I am confident in my planning and preparedness.

Because, you see that is what I was always told a professional is, and does. You LIVE your “job.” You are still the teacher, in the mall, in the restaurant, or even in CVS.

As a professional educator, I take pride in TRYING to meet the needs of my students at their level. It is my responsibility to help every child, not just the easy ones.

But, lately I am wondering if every professional has that same feeling.

Now, I mean no offense to the various healthcare professionals who go above and beyond for us, and for their other patients.

It’s just, well, the rest of them.

Having Cowden’s Syndrome sometimes feels like, well like I would imagine it might feel to have a plague, or leprosy. People, doctors, whomever, look at you tentatively. They look with caution. They don’t want to get too close. They are afraid to treat what they don’t understand.

And worse – no one wants to be in charge.

We are the worst kind of liability – more dangerous than a safe full of cash or a rare artifact.

Everyone wants to see us, all the time. But, they just seem to want to check boxes that say they’ve met their “I’ve seen a Rare Disease” quota, and send us on our way.

I am the CEO of my daughter’s medical care, and while frighteningly competent to do the job, NO ONE is listening to me.

To My Daughter’s Entire Medical Team:

You are dropping the ball here. Someone step up and take charge. Talk to each other. Get your egos out-of-the-way. LISTEN to me. LISTEN to her. Put her picture on her chart to remind you she is a REAL person.

Believe her when she says it hurts. Even when it is not “supposed” to. Validate her.

And sometimes. as unpleasant as it is to see, there is lots and lots of very real pain. — And sometimes. as unpleasant as it is to see, there is a lot of very real pain.

She talks a lot when she’s nervous. Care about what she has to say. Care that she is nervous. Learn about her love of swimming and reading and performing. Adapt your plan, your day, your treatment to fit MY child, just as I would do to yours in my classroom. Treat her as a whole person.

We are tired of spending hours in the car, missing practices and play, and relaxing time, just for you to feed us a line of “maybe,” “watch that,” and “come back.” We are tired of going places where no one wants to give us answers, or even answer our calls.

We are tired of surgery. But we do it. Over and over.

It's a real person enduring those procedures. — It’s a real person enduring those procedures.

Call back when I have questions. Like within 24 hours. Because I carry my phone until it leaves an imprint in my hand when I wait for you. Nothing else gets my concentration while I wait for the ring. I carry my list for fear of missing that precious window with you.

Oh, and by the way, the foot with the AVM had stopped growing. Take a look. Someone. Please. It’s a bit disconcerting.

She’s hot. Often. And at odd times. And I’m not just talking a little uncomfortable. Anyone want to help address that one?

And yesterday the dermatologist said it’s a vascular malformation in her hand. Another one. Please don’t tell me it’s not all connected. I’d rather you tell me you don’t know.

Don’t ignore her symptoms because you don’t understand them or can’t explain them. Trust me when I tell you, she’s not making it up. Any of it. She spends her time trying to make the world better for other people. Isn’t it about time you all got it together and started making HER world better?

And when the knee is at it's worst, there is still a way to press on. — And when the knee is at its worst, there is still a way to press on.

The pain in the knee is constant. Yep, I know it “shouldn’t” hurt either. But, she doesn’t even ask for medication anymore for fear of the same issues her last pain medicine caused in her GI tract. She just endures. All day. And then she goes to drama, and then she swims, and manages an average of 97% and the National Honor Society. She limps a bit by the end of the day. It’s the mornings that are the toughest.

To you she is one of many. To me she is my one and only. And this ~~child,~~ young lady, has the capability to effect great, positive change in this world. I know you are tired. I know your schedule is busy. I know research takes time. Start by listening to us. Listen. Care. Let her know she matters.

Then maybe, just maybe, she’ll start to trust you. Then, slowly, together, you can try to make her life more comfortable. Because, with or without you, she and I are BEATINGCOWDENS together.

Sincerely,

Her Very Determined, Sick of Excuses Momma Bear!

STUPID CANCER show!

Published on October 21, 2013 by beatingcowdens3 Comments

I am absolutely high on adrenaline right now…

In August the husband of a friend from High School asked me to be on “The Stupid Cancer Show.”

https://www.facebook.com/stupidcancer

I said yes, not quite sure exactly what would be involved, but knowing that it was a rare opportunity to speak to Cowden’s Syndrome awareness.

Tonight was the night.

What an amazing show. I am so glad to be familiar with it now, and you should check it out!

Somehow the words came pouring out. It’s amazing what speaking from the heart can do. I can only hope that someone tonight knows what they didn’t know before.

I find there to be no coincidences in life.

After my segment in the “Survivor Spotlight,” the show focused on toxicity and cancer. Well even though I just listened in to THAT part of the show, I was so in tune to what they were saying.

http://www.blogtalkradio.com/stupidcancershow/2013/10/22/stupid-environment

(My part of the show starts at about 11 minutes, and ends around 30 – I talk too much! But I managed to mention my friends at Life with Cowden’s, PTEN world, and The Global Genes Project!)

Near as I can figure these days, breathing increases your cancer risk. But, taking crappy care of your body, eating junky food, and generally being careless, puts you at a greater risk than if you are careful.

There is nothing we can do, especially those of us with genetic predispositions to cancer, to fully protect us. But we can do what we can to help.

There is no guarantee I won’t get hit by a car, but if I stand in the middle of the street I greatly increase my chances.

People ask why we devote so much of our time, energy and budget into healthy food.

Genetics are not on our side. But we can fill our bodies with healthy, pure, organic superfood.

These days the core of the nutrition in our home comes from Isagenix. It does not claim to prevent, treat or cure any disease, but If you haven’t looked yet – now is a good time.

This company provides quality food, and they make it possible for you to afford it, because you can eat your Isagenix for free.

“You plus two, them plus two.”

Well worth my initial investment. Quality nutrition for my entire family.

We are certainly going to do the best we can at all times.

Our health, no guarantee. But we are going to do the best we can to keep that “STUPID CANCER” away.

I STILL HATE CHEMISTRY!

Published on October 16, 2013 by beatingcowdens3 Comments

I am dating myself I am sure, but the year I was to sit for the Chemistry Regents Exam in NYC, someone swiped the answers. The morning of the test they were published in the NY Post. I remember sitting in my high school cafeteria waiting to take the exam, only to find out it had been cancelled. You know thinking back on that story, I guess I understand now why I have never won the lottery. That was probably one of the “luckiest” thing to happen in my life. I never did have to take that exam.

Except now, 25 years later, I sit poring over a piece of paper full of words I don’t understand. I am brought back to the periodic table, and left to wonder if maybe I should have paid a bit more attention in class.

I have actively picked apart each of these levels since being handed the report on Thursday. I have read the descriptions of where this toxicity could have originated from. I have made the few moves I could understand, and the old aluminum cookware hit the recycle bag, and the new stainless steel – to supplement the few pieces we did have – arrives this week. The old cookie sheets are gone. Parchment paper replaces aluminum foil for cooking. But what about the other ones? What about the ones I can’t understand? Or worse, what about the ones like “gadolinium” that I CAN understand, but I just can’t fix?????

This printout is old now. The new urine sample was picked up Friday morning, and hopefully someone in a lab somewhere is generating lower numbers and shorter bars. But, I won’t know that for a few weeks. So I am left alone with my worries, and my thoughts, and my sick kid.

I suspect if Meghan could tell the world how she feels, this might be the sentiment. She is constantly conflicted with feeling like crap, and being pushed to keep on. She not only plays in pain – she smiles and laughs through it. And no one who sees her outside of this house would typically have any idea of the agony she endures each day. She works hard to hide it all. She has told me, in her very own words, that “no one would like me if I told them how I really felt all the time.” I would like to tell her she’s wrong, but she’s not.

And she is the bravest kid I know.

The sore throat started Friday, hours after the chelation, and exactly the same as last time. On Friday she pushed herself through gym class because she just wanted to be “normal.” By Friday afternoon she was shot – too wiped out to swim. She could barely swallow. By Saturday morning her nuscles ached along with her throat. No swimming Saturday either.

We barely left the house all weekend, except for a quick strep test Sunday that was negative.

The friends she wanted to invite over – postponed.

This was no coincidence. This was twice in a row she was knocked on her *ss after chelation. This was her immune system saying,” WHAT THE HECK WAS THAT?” To the toxic storm unleashed by the chelating agents. We have kept her well hydrated in hopes much could be excreted… but we will have to wait and see.

Early to bed Friday, Saturday, Sunday, Monday, Tuesday, and again tonight.

SHE HATES going to bed early – but has gone willingly.

She went home from school early today. No fever, but a clammy sweat. She just needs rest, and water, and rest.

The headache is ruthless. Even as some of the cold like symptoms start to subside, the headache does not want to quit. A week now. It leaves such a pit in my stomach I don’t want her out of my sight. I hate headaches. I especially hate wondering if the renegade toxins likely causing them are doing any other damage.

The doctor who last month said there was no way her symptoms were connected to the chelation recanted through an email today. He is now keeping tabs, giving me tips to keep her comfortable, keeping my resolve strong that this is necessary, and working on downward adjusting her dose for next time. More trips, more treatments… hopefully less misery.

I just can’t shake the image of a snow globe, and as we try to get the metals out we stir it all up. Some escapes, but the rest causes misery as it finds hiding spots again.

An in between it all life presses on. Laundry gets done. Bills get paid. Lessons get planned. Cars get exchanged. Files are kept. Clothes for the growing girl, are ordered. Floors get vacuumed, and washed, and vacuumed again. Groceries are purchased. Lists are made, and lost and remade. Tabs are kept on family and friends, and their health, and their struggles.

These are the every day tasks that keep me sane. On autopilot.

Dinners are missed. Meetings go unattended, Places I want to go – but, I just can’t right now.

You see I am having a battle with the Periodic Table of Elements, and I need to study. I am the front line.

So, I take my IONIX, and my t+chai, and I am thankful for energy and stamina to endure.

Maybe missing that regents wasn’t so “lucky” after all. So as I study some these next few weeks – please know we haven’t forgotten you. Our prayer list is long. We don’t want you to leave us out, or not to call. Don’t feel badly about overburdening us. We NEED to be in your lives. We WANT to be in your lives.

We are in touch enough to know that “Everybody has SOMETHING!”

from "Mommies of Miracles" — from “Mommies of Miracles”

Catch-22

Published on October 10, 2013 by beatingcowdens1 Comment

A catch-22 is a paradoxical situation from which an individual cannot escape because of contradictory rules.^[1]^[2] Catch-22s often result from rules, regulations, or procedures that an individual is subject to but has no control over.

-Wikipedia

You know a person could go crazy trying to keep themselves free from toxins. These days it seems to be an all consuming, and virtually impossible task. Sometimes I wish I knew a lot less. Sometimes maybe ignorance is bliss. And cheaper. And a LOT less stressful.

But then again, I think my girl would be a whole lot worse off. And therein lies the “Catch-22.”

Meghan has been seen by a “biomedical specialist,” (insert voodoo, witchcraft, flawed medicine – whatever makes you happy) since she was about 2.

Back in the summer of 2005 things were definitely NOT ok here. I knew it deep down where that Mommy gut nags at you. We had speech therapy. We had occupational therapy. And we had a child who had already been hospitalized twice with chronic viral infections, was not sleeping, was not playing, was not talking, and was most of the time flat out uncomfortable. We also had a vast array of doctors who dutifully collected my Co-Pays and did absolutely nothing but tell me they “didn’t know.”

So, I read. I researched. I altered her diet. I added some key supplements. I started to see results – but not enough.

This doctor, whose office we just left a few hours ago – over 8 years since our initial meeting- got to know Meghan. He told us he could help. And he has.

We have worked together through dietary interventions. Supplements. IV treatments. Countless blood tests. And, when we needed it – Xrays, and guidance towards the diagnosis of “milk of calcium” of the gall bladder at age 3.5

He has been my sounding board through lots of ups and downs. I have never, and will never take any one person’s word on what I should do for my daughter – doctor or not – but he is one of the opinions I value highly.

He had the gumption to prescribe digestive enzymes after YEARS of horrendous stool and horrific stomach aches. “We don’t need to biopsy the pancreas. Sometimes we just need to use our heads to see what works.” Not too often these days will you find any medical professional with that confidence or drive to do what is right.

Through the years we have visited his office at least 3 times a year for lengthy consultations. He has suggested countless things to help aid Meghan’s immune system, her pain, her tendency towards chronic fatigue. I have listened to many, and ignored a few. Conversations have evolved over the years as we have each stayed up to date on current research.

The initial diagnosis of Cowden’s Syndrome seemed to bother him a great deal. He was bothered by the ramifications of the syndrome, but also by the fact that there was no way this was “all of it.” Meghan “doesn’t fit in a box,” he would always tell me. Never let them try to put her in one.

And, perhaps truer words have not been spoken. As we have navigated the world of Cowden’s Syndrome, I have been acutely aware that there is still “something else.” But, since we are yet to put our finger on it – we continue doing the best we can.

Cowden’s Syndrome involves screening tests. Regularly. For cancer, and vascular malformations that can form anywhere at any time. X-Rays and CT scans are discouraged because of radiation exposure and a fear that cells can be “tripped.” So MRI is the test of choice. MRI with contrast that is. Gadolinium to be exact.

I’ll get back to why that is important in a bit.

We have spent the last 2 years especially, (but really the last 5 or so for Meghan considering the AVM in her knee was discovered LONG before the Cowden’s Syndrome diagnosis) being scanned. In July Meghan had an MRI ordeal that involved 4,000 images, 3 hours, 2 tubes, and 3 doses of contrast dye.

We have spent the last few years dealing with a rapidly growing child whose pains seemed to be increasing exponentially. We have gone from treating with Advil to treating with 200 mg a day of Celebrex.

We have spent the last few years trying to help her stay calm- only to watch her anxiety mount. In September she was diagnosed with Alopecia Areata– an autoimmune condition that causes hair loss. Fortunately for us it seems to be contained to a small area, but it is an unnerving diagnosis still the same.

We understand the role of autoimmune disease and stress, and toxins. We understand the role that stress can play on a genetic mutation of the PTEN (tumor suppressor) gene. We understand that there is external and internal stress.

We do what we can to control stress on the body. We make sure she has “down time.” We try to help her get rest. We got her involved in swimming, a sport she loves. We make sure she eats a largely organic diet free of the foods she can not tolerate like gluten, dairy and soy. We eliminated almost without exception preservatives and dyes. We bought new pots and threw out the plastic plates we used to use sometimes.

We started giving her ISAGENIX, the organic superfood that is as pure as I seem to be able to find.

And even at that – there is an awareness that we can NOT control it all. There is an awareness that by whatever mechanism that is broken, our girl does NOT detoxify properly. We are aware of toxins in the air, in our soil, and even in our filtered water. We are aware that her body is confused by this world we live in, by the GMOs that are even hidden in her organic diet.

We run, like Indiana Jones, out in front of the boulder, in constant motion. One stride ahead…

Chelation

Chelation therapy is a proven treatment for lead poisoning and poisoning from other heavy metals.

http://www.cancer.org/treatment/treatmentsandsideeffects/complementaryandalternativemedicine/pharmacologicalandbiologicaltreatment/chelation-therapy

The term has been spoken over and over again by the “bio medical doctor.” Chelation is the concept I found every single excuse to overlook and ignore. The idea shook me to my core.

The turning point – Alopecia Areata and the words I had heard him say to me for years, “She is primed to become an autoimmune train wreck. Let’s try to clean her out.”

She went for her first treatment last month. After the treatment there is an 8 hour urine test to measure the toxic metals excreted.

She went for her second treatment today and I got to look at the printout of last month’s urine analysis. So, even as I held her, and she wailed in pain, and two veins rolled before they got a good one, my resolve was strong.

There are several metals that were high. None of that made me happy. But the most disconcerting of all…

The reference range for that MRI contrast dye Gadolinium I mentioned earlier is <0.4. Her output was 190. No I am not forgetting a decimal.

Gadolinium. Necessary for the cancer and vascular screenings set to be part of her life forever. Except apparently her body can’t seem to excrete it.

Catch-22

Keep Swimming…

Stuck in the middle

Published on September 29, 2013September 29, 2013 by beatingcowdens1 Comment

The sermon in church this morning had many parts. And I am never sure if what I take away is the intended meaning, but the idea of being “stuck in the middle” spoke to me.

I don’t mean it in the sense you might think.

See, we are not poor by any means.

We are not rich by any conventional standards either. But, if you asked a person who lives in poverty – well to them we would likely be affluent.

It goes back to a concept that I think about a lot.

It’s really all about perspective.

There are many angles to every situation. The angle, or the lens you choose to view it from determines the outcome, and to a large extent the path you follow.

Now, as my daughter and I live with Cowden’s Syndrome, and all its ruthless cancer causing, malformation growing, pain invoking perils, I do NOT mean that if I look at things the right way, or if I am positive enough that that is any guarantee of good health.

What I do mean is that HOW we handle, not only the illnesses we encounter, but the threat of those illnesses will largely determine who we are, our level of happiness, and the effects we have on the people we encounter every day.

We have all been blessed. We all need blessings.

The middle can be a powerful place to be.

There are choices to be made every day. These choices change our lives, and the lives of others.

September is Childhood Cancer Awareness Month.

The fact that childhood cancer even exists is appalling. Meghan and I live with the imminent threat of cancer in this house every day. I don’t go a single day without remembering my daughter’s namesake, my cousin Meghan taken from us by Leukemia at the age of 6 over 20 years ago. But, we could bury our heads in the sand, or we could choose to try and do something to make people realize the number of lives touched by childhood cancer. We can quietly hope it doesn’t happen to us, or we can help the people it HAS happened to.

Friends of mine chose the latter this week. They scheduled a “Cookies for Cancer” fund raiser, and are donating over $1000 to childhood cancer research. I couldn’t be more proud to call them friends. They said we were their inspiration. I find them pretty inspiring.

October is Breast Cancer Awareness month.

I know very few people unaware of Breast Cancer. As a matter of fact some have become sick of seeing the marketing connected with “Pink Ribbons” everywhere you turn.

Breast cancer is an ugly reality. Mom is still fiesty, many years after her battle. Breast cancer messed with the wrong woman there. And me, well, my scars have healed, and I have found all the benefits to these replacements I have to the “superfluous tissue” that was trying to take my life. I cringe when I think of my daughter, and the foreboding reality that this will be part of her journey.

Choices.

I choose to empower my daughter with stories of strong powerful women. Those she knows and those she does not. I choose to teach her about early detection, awareness, and victory. Together we are empowered to TALK about our story. The more people who hear about Cowden’s Syndrome, the more people will realize. Lives can be saved. Breasts, well maybe those can’t be saved – but let me tell you about the freedom of being almost 40- perky, and often braless. I’ll bring you over to the bright side.

Choices.

Meghan’s health has been a struggle since birth. Our treatments for her have evolved over time. Long before we could afford it we took a credit card and a trip to an integrative medicine doctor who is still a huge part of our lives today. We learned that for her, pure, natural, gluten, dairy, and soy free food was as necessary as sneakers and clothing that fit.

Slowly we evolved into a house that ate better. We took what we had learned about Meghan’s needs and transferred them to our own.

Except habits die hard, and in the months following our Cowden’s Syndrome diagnosis, and my mastectomy, and hysterectomy, my husband ate his way through the stress to the unhealthiest I had ever seen him.

Realizing we need him- healthy — all the time. We connected with Isagenix, initially to help him lose weight.

Well he did. Fifty pounds. And its still gone. And then I read and read about the company and things came together for me. I realized everything I had learned that Meghan needed was here, all in this organic superfood. So we bought her some too. And then there was stamina and endurance to complete workouts in the pool. So my husband told me it was my turn. Nutrition, simple, quality.

Choices.

The first 10 months on Isagenix we told no one. Then we felt guilty NOT telling everyone, about the health we were experiencing, The first year we paid for the products, and sacrificed where we could. Now, Isagnix pays us because we share what we have learned and experienced.

This week Meghan’s pain was bad. So much so that she was finding it difficult to walk on Friday. We are trying desperately to lower her NSAID medication, but her body won’t allow it.

Friday I was discouraged – and inspired. Stuck in the middle I guess. I was so heartbroken for her agony, and so proud of the tenacity to get into the day, and DO IT.

Choices.

They are tough to make.

We are faced with countless ones each day.

The choices we make are directly connected to the quality of the life we live. Our desire to do the best we can with what we have, where we are – essentially defines WHO we are.

Maybe we aren’t “Stuck” in the middle, but rather placed there gently through grace.

Choices.

Perspective.

When Pigs Fly

Published on August 24, 2013 by beatingcowdens2 Comments

At the very end of school I received this gift from a 4th grade student of mine. I think it is probably one of my favorite gifts in my 17 years teaching. Small and delicate, yet tough and determined. Not much for collecting things, but this was a keeper.

Meghan continues to battle her way through the pain of recovery. She rests and reads and watches TV to pass the time. She is tolerating the pain a bit better, although the reality there was a scalpel scraping scar tissue off the ligament and nerve in the center of her palm is not lost on her every few hours as the medication starts to wear off.

The day we came home I explained to her (again) about how Cowden’s Syndrome likes to “overgrow” things. We talked about “hyper-healing,” and her body’s desire to overproduce cells to try and solve a trauma. That is a crude explanation of our tumor growth. That same crude explanation can be used to explain why some Cowden’s patients have a prevalence of scar tissue. Every time there is a surgery, or an injury the body over works, and sometimes the result can be just as bad as the original problem.

Overcoming impossible odds. I like the way that sounds. The overcoming part, that is.

So, we talked about range of motion and the need to keep on moving those fingers so the scar tissue doesn’t form and stiffen things up. She knows she will need therapy. She is used to that. She did not like the thought that her range of motion could be affected permanently if she didn’t move.

With raw determination she wiggles her fingers. Several times an hour I watch her wince in pain. No one tells her to. She just knows she has to, and she doesn’t like the thought of the alternative.

See its all about the swimming. Her sport. Her niche. Her comfort zone. Nothing will keep her out of the water for long.

The pain exhausts her. She has circles under her eyes, not from doing much other than being in pain. But for those of you who live with chronic pain – you know that it wipes you out. So she sleeps. 13 hours when she can. Better for the healing I am sure.

When I was dusting this afternoon I came across my friend Penelope Pig, and I thought of how relevant she is.

I thought of all the times in my young life I uttered sarcastically the phrase, “When pigs fly!”

I thought of my arrogance and how little I knew about the important things on life – the things worth fighting for.

I realized in all its ridiculousness, it can actually be a poignant phrase.

I’m going to let this surgery stand in my way – WHEN PIGS FLY!

I’m going to stop swimming – WHEN PIGS FLY!

It fits for so many things in life.

So many other things on my mind. So many thoughts all garbled up inside.

Sometimes I feel like we are running on raw nerve, on sheer will and determination.

And guess what – we will give up….

WHEN PIGS FLY!

Believe in the Magic

Published on August 14, 2013August 14, 2013 by beatingcowdens6 Comments

This has been quite a year, for our whole family- but if I am honest, especially Meghan.

This year in January we had the “Santa Claus” chat. And, as careful as I was – I was devastated when some of the magic left her that day.

During this last year, she lost my grandfather, her GGPa. and had her first close encounter with deep loss. Last October when GiGi fell she saw a fragile side of two of the strongest people in her life. She has watched Grandma- my Mom – look after HER Mom, and she thinks- and she worries. Then just a few short weeks ago GGMa had heart surgery. And we have had so many discussions about life these weeks, your head would spin, and your ears might bleed.

That doesn’t even bring into question her own medical issues. This child spent just about every single day- from the day school let out- at a medical appointment. Many if them were routine follow ups. Many others addressed new problems and concerns and left us with more unanswered questions. And all of this – that began literally the day after school ended, will culminate August 20th with hand surgery. This has been the summer.. Well…

So she has been preparing her answers when people ask her how her summer was. Before we even left for Disney she had decided she would tell them; “I love my new swim team, and Disney was great!”

She is smart enough to know most people will not REALLY want to hear what e transpired this summer, and she hates to lie- so we found a happy medium!

That’s because Disney always has been great. But the first few days this year were a little rough. She was struggling, and when we finally got her to talk she explained that she hoped the trip would erase a horrendous July. It didn’t. She was literally expecting the “Magic” to whisk it away.

Then there was that problem with the “magic.”

See for the first time – with the realization that Santa wasn’t who she expected- came the realization that, well, Mickey, and Goofy, and Donald- well you get the idea.

Maybe its fortunate she was too exhausted too much during this trip, so we had lots of time to talk. And, somewhere around the third day she caught on.

That MAGIC- it’s yours. Inside. No one can take it. Sickness, sadness, illness, doctors, surgeries, Cowdens syndrome- nothing!

The magic is there for you if only you believe. THAT is the wonder of Disney. THAT is what keeps us coming back.

The 2013 theme is “Believe in the Magic.”

She gets it. We all do. You have to believe…

Much more about this trip when I am back on my real computer!

That Voice

Published on August 11, 2013August 11, 2013 by beatingcowdens4 Comments

That voice. The one we all have. The one my friend whose post I “reblogged” wrote about yesterday,

I have been battling mine. Sometimes I win. Sometimes I don’t. But, I am actively working on increasing my stats.

Chronic illness is, well, chronic. It sticks around even when you’d like to toss it to the curb.

Yet I, as so many other parents, have found an inner strength that comes with managing your child’s chronic illness.

And somewhere after you have been battling for a bit, and your mother’s intuition is fully fine-tuned, and stronger than any fictitious “super power,” you realize it gets easier and easier to take that voice of self doubt and tell it to SHUT UP!

Just this last year alone, as I have adjusted to my new body parts, and my missing body parts, I have come to the determination that despite my gnarled mess if varicose veins- I CAN wear shorts, because – why not?

And I CAN talk to whomever I want about the Isagenix business I am working to grow, because I believe in the products, and they have changed my family for the better. So, why not?

And I CAN blog in intricate detail the stories of our battles with Cowden’s Syndrome, so that those in similar situations have a story to relate to- and others will help us raise awareness.

I am able to stifle that voice when I meet another new, clueless doctor. I am able to educate them, or fire them. Whichever is best. I am able to plow through obstacles wretchedly placed in our paths for the best care my girl deserves.

Yet, there are still times that voice, and all of its horrible, scary, evil “what ifs?” Whispers – no SHOUTS in my ear.

We are still in Disney. I am alone by the pool. I have been here for hours- not without a cocktail in hand. But I am separated from my family because my girl is exhausted.

It’s Florida. It’s August. It’s hot. And maybe it’s just that simple.

But we’ve done this before. This is our sixth time. And this time the stamina is struggling. Late mornings. Early nights. Droopy eyes. And I worry.

We give her the best, cleanest, purest food and vitamins we can find. She sees doctors all over- all the time.

And yet, “Mom I just don’t feel right.”

My heart sinks.

I brought her cookies tonight- a trip to Downtown Disney alone because she just “couldn’t.” The gratitude in her eyes worth every one of my extra steps.

There is no fever. Maybe her Dad is right. Maybe I worry too much.

But we have only seen one night show- unheard of for us. I am starting to wonder what will happen when school meets PT and swim practice!

Or, maybe I remember too much. Or maybe I know her too well.

Motherhood carries inherent risks- among them constant worry. So Cowden’s or not- I am confident I am not alone in my anxiety.

We want what’s best for them. We want to help them. They are our lives, our air, our breath.

I have got that voice in much better control than ever before. On this though, I am not alone in wondering if I will ever get it to SHUT UP!?

Extra Parts

Published on August 4, 2013 by beatingcowdens2 Comments

We got the car back – with a few extra parts.

And this morning for an added surprise a screwdriver left on the driver’s seat poked me in the bottom!

The car isn’t fixed.

We had to take it back to wait for the “Field Tech” to have a look.

Apparently the “Tech Line” suggestions weren’t helpful, so in their infinite wisdom, they one by one took out parts, swapped them with new ones, then put the old ones back in when the problem wasn’t fixed.

10 days in service and I left with the same broken car, with the same parts as when I dropped it off.

Except that a few “extra” parts were left on my seat and my console.

While we will make an appointment some time next week to leave the car for the “Field Tech,” I had to laugh in spite of myself at the irony of the whole thing.

We have spent the summer at doctors. Some doctors were routine, some were tests and follow ups for things that were not “ok.” While there are many things that will leave me unsettled long after the summer has passed, the most disconcerting right now is the pain in the wrist and the hand.

A three hour MRI, a phone consult with the vascular surgeon, a phone consult with the rheumatologist, a local orthopedist, and a local hand surgeon – NONE of whom have a clue WHY after 8 WEEKS there is significant pain flexing the wrist, or holding a pencil, or performing any number of basic tasks.

Tomorrow we will head to the hand surgeon in Manhattan, with hopes that he can process the “extra” bump on the palm of her hand, and understand its relationship to the pain, and offer us a viable solution.

Too hopeful? Maybe. But, if I give up hope, where will we end up?

Raw with fatigue. Frustrated by “extra parts” and the people who don’t seem to know what to do with them…

Which ones do we put in? Which ones do we take out?

The similarities are almost uncanny. What are the odds that my child and my car would both have problems where the only hope of an answer lies in the “super specialist?”

But wait, there’s more!

Published on July 30, 2013 by beatingcowdens4 Comments

Sorry if I got you too excited with the title. It’s really nothing too thrilling. It’s just – there’s more. There is always more.

I held the phone all day in hopes I would get the promised call from the rheumatologist today. Really I should know better. At this point I just want to know if I can raise this child’s medication. But, we will add that to the list of conversations for tomorrow.

Tomorrow – happening in just a few minutes. My how time does fly. And my fellow insomniacs, all with minds and hearts as full as mine will appreciate the fact that we laughed today. We actually had a case of the giggles.

It started when I called about the car. The poor, fairly new car at the “Car Doctor” continues to get worse news as the days go on.

Today’s report was that they are “at a standstill.”

WHAT? A work stoppage on my 7 month old car?? REALLY?

But they have to wait for authorization before they can ORDER any more parts.

AND, they are waiting for a “Field Mechanic” to come take a look.

How this happens to a car that 7 days ago the entire shop was swearing to me was just fine is amazing,

At least they are on the same page as I am now.

Meghan and I HATE the rental. It smells, It shakes. It’s dusty.

But we laughed at the fact that the mechanics can’t seem to fix the car any better than the doctors can fix her.

Funny what can make us laugh.

We know each other really well Meghan and I. We are very “in tune” so to speak. I guess it’s a product of being together so often in so many precarious situations.

So as we walked up to swim practice again tonight she complained of pain in her neck. That was weird.

I touched it – checking for lymph nodes. Nothing obvious.

She swam the first 50 yards and looked weak. The coach motioned for me to come to the deck.

She told me Meghan said her throat was scratchy and dry and she was having trouble breathing.

Meghan told me she was GOING TO finish practice and she was FINE because she LIKES practice.

I stepped back from that level of determination. The coach agreed to let her swim if I was close by and we both watched.

She swam until 6:05 after taking 1st place in her 50 free heat during the mock race at practice (and knocking off about 8 seconds from her time a few months ago) the coach told her to go.

Only ten minutes left in practice anyway, reluctantly she agreed.

And I can swear to you as we walked up the steps to exit the pool that is where the speeding train plowed right through her.

That was it. She was talking and then all of a sudden she was telling me she was swallowing nails. She was pale.

It happens that fast. This isn’t so much the Cowden’s but the weak immune system. The IgG subclass deficiencies, the missing mannose binding lectin. From winning her heat, to flat on her butt. That fast.

So we drove home and she showered. We talked about the pros and cons of urgi care at dinner. We had the conversation more for something to talk about. We all knew she had to go.

So we even have a “regular” doctor at the urgi care, who knows enough history not to badger us with silly questions. He dove right in for the strep test. He dug into her throat and patiently watched for that second line to appear. And finally – close to the 5 minute time frame, he walked over and said to me “here it is.” Faint as anything, but it was there.

“Smart Mom, by tomorrow she would have been a mess.”

I know. I know, It’s that fast and that hard. If I wait – it gets ugly.

That’s the scoop on Strep Throat – from a family that has seen a lot of it. We thought we were rid of it when the tonsils left.

We forgot that Cowden’s patients can regrow their tonsils. So the tonsil tags forming again in the back of her throat are little disease mongers.

The first dose of antibiotic went in around 10. The second one will be tomorrow morning.

Tomorrow she was supposed to be at Bible School. Tomorrow she will accompany me in the rental to Manhattan again for my follow-up with the breast surgeon.

I hope its quick.

She has PT at 1, and the orthopedist at 2:30.

No rest for the weary. Have to check on that hand.