It’s not a sprint… It’s a marathon

Published on April 22, 2014April 22, 2014 by beatingcowdens3 Comments

I’m not a runner. At least not in the traditional way my sisters run. I don’t really run unless I am being chased. Tried it for a while but the knees and the back weren’t interested. So the only running I do is from appointment to appointment.

I guess I run- in a metaphorical sense.

This has been a busy week at our house. In addition to the host of emotions Friday, we spent the earlier part of the week addressing mandatory appointments – as it seems we do with every single vacation. It’s old I tell you. It’s old.

Monday was physical therapy, and then additional genetics for me. THAT will be a follow-up in and of itself.

Tuesday was our Integrative Medicine doctor on Long Island. The one who listens carefully and THINKS about my child before making a move. He ordered a slew of tests. He is concerned that ALL food seems to be bothering her stomach to some degree. But, he didn’t rush us out to a GI. He knew we’d get brushed off. At 5 foot 2, and about 100 pounds, my tall, thin, beautiful girl is hardly the poster child for malabsorption. But he knows me well enough to know that I am overloading her with nutrient rich foods to compensate.

We had a wonderful, long talk about nutritional cleansing, and how I would have given my eye teeth for products like the ones I use now to have been on the market 9 years ago when I began my journey with Meghan. He will look, and sample. We will talk.

But, he no longer blames one food for Meghan’s pain. He thinks the balance of her gut, from years on edge – needs some help. He has suggestions. We will wait for the lab work. Half done last Thursday – the rest tomorrow. Then we will talk. On the phone. And we will make a plan. Have I mentioned how nice it is when you have a doctor who is a fully compassionate human?

And Wednesday there was chaos. A 9:00 for me at NYU with my oncologist. She reviewed my MRI to tell me the spleen tumors are growing – slowly. But, they can stay for a while. Whew! And the cysts on my kidney I forgot all about – stable as well. WIN!

And then there was Sloan for Meghan. Blood work first. Then a follow up with the surgeon who cleared her from the thyroid with no need to return again. Of course even after waiting almost 2 hours for that appointment – the blood wasn’t in. And our endocrinologist was “otherwise engaged” and unable to see us on a Wednesday. So rather than come up twice, we opted to have him just review the blood work.

Then we squeezed in a visit to the ENT who took her tonsils out- hoping he could shed some light on 6 months of throat clearing. We left with the assurance that he had no definitive diagnosis, and he doubled her reflux meds and prescribed a new nasal spray, for inflammation in the nose. That he wasn’t sure was allergy related… I have to call in 2 weeks. Anyone picking up a trend?

The call from the PA about the AM lab work came around 4:30 while Meghan was at swim.

“The thyroid numbers are essentially unchanged, so we are going to raise her medication.”

Me: “How could that be? you raised her dose 6 weeks ago when the TSH was 10.69.” (reference range high is in the 4s)

“Obviously she needs a higher dose.”

“What was the TSH?”

“We are going to raise her dose to 125mcg” (Essentially my dose)

“WHAT WAS THE TSH?”

“The doctor feels this will help get her numbers in range.”

“WHAT WAS THE NUMBER OF THE TSH?!!?!?!?!??!”

Finally…. “10.54”

Me,” Down only .15 in 6 weeks? What is the problem? Did you test her T4 and T3?”

“Only the T4 and its normal.”

“Why not the T3?”

“It’s not relevant.”

“REALLY? Why?…” After no response I continued,”When you have a patient not responding traditionally I would think that you would run every test to get the greater picture.”

“We don’t believe in T3” (To which I actually laughed. It’s not like it’s Santa Claus or the Easter Bunny!)

“What do you mean you don’t believe in it? Obviously Meghan is not absorbing the synthroid and there has to be a reason. I think we need to start investigating before she is hypothyroid for too long.”

“Well, Mrs. Ortega I think you and I are saying the same thing. She needs more medicine.”

“No, I am saying let’s figure out WHY the medicine is not working. You are saying to continue to raise the dose of what is NOT working without looking at possible reasons why.”

“Well we will see in 6 weeks.”

Yep. And for 6 more weeks she will drag her exhausted bottom around – so hypothyroid I know I would barely function. Hopefully by then I will have found us an endocrinologist willing to accept that there is no “box” Meghan will fit it. There is not rule her body will not defy. I am appalled that I am supposedly with the best of the best. Leaves a scary feeling in your heart.

Onward to the doctor search.

The mail arrived this morning, as we were headed to the orthodontist. There was a script for Meghan’s next thyroid test. There was no copy of the labs. They HATE it when I ask for the labs. So I called and insisted they be EMailed to me. It was quickly clear why they didn’t send it, as another test was disconcertingly out of range. A quick forward to my LI doctor… and we wait.

As we headed out to the orthodontist the mood was light. Meghan was ready to take impressions for the plan to remove the braces next month. And when they called me o the back to tell me her bite had “over-corrected” and it would take some time to fix – I just about took the deep breath I needed to speak quietly.

Basically I was being told that because my daughter did EVERYTHING she was told to do religiously she had done TOO good of a job. Now her overbite had been corrected into teeth that meet to closely. She stared at me. I attacked a bit. I asked why they thought it was OK to month after month make promises that were not to be fulfilled. Perhaps it was ok for her to get defensive. Maybe I was attacking. But, I don’t understand why you say so much to a child. From the beginning she was flat-out promised her teeth would be ready before her 5th grade graduation. Now she is getting a MAYBE for September? Don’t misunderstand me. I want them on until they are done. But my issue is that SHE sees the doctor and his staff alone. THEY say whatever without me being there. It is NOT ok for you to INTEND to be ready for impressions, and then have things go so wrong in 5 weeks that we appear to be set back 3 months!

The doctor obviously got the message I had had enough. I like him. I really do. And he came out to say to me he …wait for it… had NEVER seen anything like this. How UNUSUAL it was. And how 99% of the time things run according to plan. He apologized. I reminded him that I had already told him several times to be careful with my girl – she’s not a “typical” case of anything. I asked them all to watch what they said moving forward. But it was too late.

To Meghan the message was clear. She was once again the “unusual” case, and once again. And to make matters worse this time her GOOD behavior may have contributed. What a tough message for any kid.

This is the part where I caution you – friends and family alike to withhold any comments about how it could be worse. Or how its good the teeth are set right before the braces come off. Or your friend/cousin/brother/kid had their braces on for 5 or 6 or 7 or 8 years and she should be happy it will only be 2. Because really, at some point something should go her way. At some point when the orthodontist (who mind you she has been working with on appliances since just after she turned 7 (4 years in August)) says 18 months for the braces, that it should just be 18 months. Because that’s what happens to the “normal” kids.

We have not lost our grip on reality. I promise. We get it. But some days… some days I have to wonder where the limit is.

Some days when she complains that she just wants to be “normal,” and I try to assure her she is. I remember days like this at the orthodontist. Or the 2 days it took her to recover from a 3 hour outdoor play date earlier this week. Or the “fake spring break” that had more trips to doctors than anything else – again. And the follow ups that will continue in the weeks ahead.

I cried when we left the orthodontist office. I cried because I sometimes am just so frustrated at how much she is asked to endure. And she sat. Quietly. Until we got home. And she screamed a loud piercing scream. And we hugged. Because we know we are in this together. And we know no matter how bad it gets, not matter how tough it is – we have to keep on keeping on.

Tonight I stopped at the mall and bought these.

One for each of us. A reminder about the meaning behind all that metaphorical running.

The car got towed today. The old one. I think its dead. Permanently. We have an appointment to get the oil changed on the new one at 8 am. We’ll talk to the mechanic then.

Then there is that fasting blood test at 10:15.

The whole identity theft thing seems almost ages ago.

No wonder I don’t run for fun. Too busy running as a way of life.

No worries – We are BEATINGCOWDENS!

Identity Crisis

Published on April 16, 2014April 16, 2014 by beatingcowdens5 Comments

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

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

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

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

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

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

And, I am pretty vigilant.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Where exactly is my real life?

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

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

Probably not.

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

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

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

Wise words from my preteen.

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

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

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

Life seems to be tossing boulders.

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

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

I know who I am.

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

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

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

I am a mom.

I am a wife.

I am a sister.

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

I am a friend.

I am a teacher.

I am a student of life.

I am a Christian.

I love.

I laugh.

I cry.

I hurt.

I heal.

I try my best.

I try again.

I forgive.

I am forgiven.

Identity Crisis – Over…

I think!

I Know Why The Caged Bird Sings

Published on August 27, 2013August 27, 2013 by beatingcowdens1 Comment

I Know Why The Caged Bird Sings

The free bird leaps
on the back of the wind
and floats downstream
till the current ends
and dips his wings
in the orange sun rays
and dares to claim the sky.

But a bird that stalks
down his narrow cage
can seldom see through
his bars of rage
his wings are clipped and
his feet are tied
so he opens his throat to sing.

The caged bird sings
with fearful trill
of the things unknown
but longed for still
and his tune is heard
on the distant hill
for the caged bird
sings of freedom

The free bird thinks of another breeze
an the trade winds soft through the sighing trees
and the fat worms waiting on a dawn-bright lawn
and he names the sky his own.

But a caged bird stands on the grave of dreams
his shadow shouts on a nightmare scream
his wings are clipped and his feet are tied
so he opens his throat to sing

The caged bird sings
with a fearful trill
of things unknown
but longed for still
and his tune is heard
on the distant hill
for the caged bird
sings of freedom.

Maya Angelou

I am sure this is not what Maya Angelou had in mind. And really for the safety and sanity of my friends and family, I don’t sing – ever. Yet the phrase about the caged bird keeps running through my mind.

Being caged is an illusion in some respects. I have a beautiful house, and a lovely family. We have two cars that work sometimes, so we do have access to the outside world.

Yet sometimes life with Cowden’s Syndrome can make you feel caged. It takes away the freedom, the ability to go as you see fit. It robs you of the carelessness that should be an inherent part of a 10 year old’s day.

And even as some days I want to cry with frustration – my young caged bird continues to sing…

This is the summer of irony. All over the place and in our faces.

Not lost on us are the numbers of family and friends whose privacy I respect too much to mention, but whose lives are upended, and who are in their own right “caged birds.”

All summer we sat at doctors. One after another. Hours upon hours upon hours.

Now- we don’t have any appointments. But the broken wing- the wrapping on her hand and the stitches prevent us from getting too far.

The hand has to be elevated with a Carter Block, until the stitches come out Thursday. Then we can talk about resuming therapy. Today the calendar is empty. The sun is shining. And here we sit.

Not exactly alike - but you get the idea — Not exactly alike – but you get the idea

The pool is crystal blue under the bright sky. Taunting.

I can take her out but if we go too far, or do too much, the throbbing begins again. Maybe we will make a quick trip somewhere just to get out.

I have a million things to do. No shortage of work to keep me busy. But, I can’t seem to get anything done. Irony. You want and want for time to get things done, and then… it’s like I developed a full blown case of ADHD. I can’t keep up with my mind, and the list just grows.

If I take responsibility, some of this feeling comes from my general lack of spontaneity. I am a planner. Much to my detriment. I long to be the one who just gets in the car and goes. But even though I struggle with this and try to gain a glimmer of impulsive behavior, the reality of our lives seems to tether us close to home.

Allergy meals are tough to come by and can’t be taken for granted. Food and enzymes must be planned….The consequences are dire and painful. I won’t take the risk.

So, here we sit. God bless her, and her patience as she alternates reading, TV, and playing with the iPad.

I am working on laundry and the floors, and cutting some 100s charts out of laminate for school. Always moving, and accomplishing precious little.

I am breaking out into a cold sweat as I schedule our next round of appointments. What a feat. Distressing, disturbing, necessary waste of time. I have about 8 scheduled for us from December to February already. And a few others sprinkled in for good measure.

We see the doctor on Thursday. She should get some freedom then. Just in time to set up my classroom.

Maybe I will just open the cage long enough to sit on the deck, or take her for a walk around the block.

Have to remember the little things, because they really are the big things, right?

Staying focused…

“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.

Thinking outside the box

Published on March 22, 2013 by beatingcowdens4 Comments

And so began the week that was.

A “simple” annual review – not so much. But that’s OK. Mamma Bear remained calm. I am most strategic that way.

I am however exhausted, and facing another battle.

It was a bit of a struggle to keep the chin up this week, as I often felt like her:

But, I didn’t act like her. Not even once. (Well once I cried – but I got yanked past it.) And that’s about all of that story I can share here, for now.

But these last few ~~weeks~~ months, have left me with a lot of questions.

See, there is this constant battle to do what is right, or what I perceive to be right, as I advocate for Meghan, and for my family. But inevitably, because I am so introspective – I am left with a ton of questions at every fork in the road.

Last week when we took her to 4 doctors and an ER about her shoulder, I ended up being told I went to the wrong ER – that we didn’t belong there. But it is a cancer center, she is already a thyroid patient there, and my child grows things. While we are blessed that none have been cancer yet – I am not of the “wait and see mentality.” But, still I paused and wondered if I had done something wrong.

In the end, the rheumatologist gave her a muscle relaxant. We began rehabilitative PT and I am seeing progress. The shoulder and neck remain wickedly sensitive – but she has back almost full range of motion.

Still we watch the lump behind her shoulder blade, in hopes it continues to decrease in size and doesn’t turn out to be the “soft tissue tumor” we were advised to look out for.

Really – no one has even a bit of a clue. And it is often just downright exhausting.

Physical Therapy this week was refreshing. At least I deal with professionals who have made themselves aware of Meghan’s needs and focus with a goal of eliminating, or severely managing, her pain. Thank God we found them.

Because of them, Meghan will swim in her meet tomorrow. No freestyle – it hurts the neck. But that was OK with her.

Backstroke seems by far to be her favorite. I love watching her swim. She seems so at peace.

It gives me a time to break from all the questions. The wondering. The worry.

It is easy to doubt yourself sometimes when so many things are changing at once. Whether you are precipitating the change, or reacting to it out of necessity, when there is so much at once I think it is normal to wonder.

We are not super difficult to get along with. Yet we go through doctors like a toddler goes through shoes. We have very few close friends – confidants to be trusted. Those who will be honest and open minded. We spend a lot of time alone. We get along really well – thank goodness.

I think what we look for is doctors, friends, associates, people who can practice:

I just wish there were more. No one really fits in a box. And that’s not just us, and our “rare disease.” Everyone is unique, and special. Everyone needs to be looked at with a fresh pair of eyes. Everyone needs to be viewed through the perspective of the other person. Only when we start to look at things through someone else’s point of view do we solve anything.

It is the outside the box thinkers that solve IEP problems, medical problems, friendship concerns, desires to make the world better…

Daring to think outside the box is risky. It is hard. It is necessary.

Especially in this season of “test prep” where I have seen this scenario one too many times…

Mine, yours, all of them – they are individuals. They have specific needs. We should never be discouraged when advocating for them and their needs.

In many cases – we are their only voice. We MUST think outside the box for them.

Mommy is on a mission…

Published on July 15, 2012 by beatingcowdensLeave a comment

I am dating myself now, I know. I was definitely one who watched the “A-Team” in the 80s.

I have no real idea as to how my subconscious works, but tonight as I sat through a few hours of sorting out that $750 bill, I kept thinking of Mr. T.

I PITY THE FOOL WHO MESSES WITH THE MOM OF A MEDICALLY FRAGILE CHILD!

I have it all straightened out. Clipped together and ready. It took me 2 hours, but I figured out the billing error they obviously haven’t rectified in 3 years.

I know exactly what they need to do. But tomorrow I think I will mess with them a bit. Make them send me a few detailed, itemized bills. Then, after they send it all to me, I will let them know if they bill my medical, not my hospitalization (like it says in the fine print) they will get paid the deductibles they are looking for. See, we are fortunate enough to have 2 insurances, and smart enough to use them.

No doubt we could pay the bill if we had to. But, why? There will be something else… like superhypoallergenic sunscreen… that I can better spend it on.

Tomorrow. I will start with the garden. Move on to the billing department, and finish by calling Boston, all before PT at 11:45.

No time for tears of frustration tomorrow. I am a Mommy on a mission.

Photo: LOVE THIS! <3

Frustration…

Published on July 12, 2012July 12, 2012 by beatingcowdensLeave a comment

It felt like anger at first, but it isn’t. Sometimes even at my age I forget things I already knew about myself.

I cry when I am frustrated and overwhelmed.

I am not really angry. That takes up too much energy and I have none to spare. To be angry there has to be a target of your anger. And really, who or what am I going to be angry at? And what purpose would it serve?

Now frustrated is a different story. Frustrated is when the control freak can’t sit long enough to organize the pile on her desk.

Frustrated is the dead sod in the yard, and the cucumber and zucchini that seem to have developed a “creeping crud” fungal infection.

Frustrated is when old “life” problems, like credit and identity theft issues that were solved three years ago start taking up time, and there isn’t much to spare.

Frustrated is when you can’t get a doctor who takes your insurance (despite countless phone calls) to order the tests you need so you can stay well enough to be on top of the (not so bright) doctors who are treating your daughter.

Frustrated is trying to plan some FUN events when doctors appointments keep getting in the way.

Super frustrated is having to go to NYC to see the knee surgeon tomorrow, on a perfectly nice – I should be scheduling a play date for my kid- kind of day. Frustrated is being unsure how to get my point across without being escorted out by security, and/or without scaring my kid.

Frustrated is going to the appointment alone- when I really want my husband there, but knowing it is not the kind of appointment he should take off work for.

Frustrated is wanting so badly to let some of this worry go, and knowing I can’t.

Frustrated is a new medical issue, every time I turn my head.