Just Do Your Job

Published on March 25, 2018March 25, 2018 by beatingcowdensLeave a comment

I guess as I think about the last few weeks, so often the thought comes to mind that if people would just do their job, thoroughly and with accuracy and pride, many problems could be avoided.

This weekend I compiled a 5 page letter, and a 20 page PDF and Emailed it to the CEO and director of operations of the local hospital that I feel could have done a far better job handling my February 21 vascular surgery. It took a little time to get it out, and it was frustrating, but simultaneously cathartic.

Early in the healing process my sage daughter said, “Mom, you’d never let anyone treat my body like that. Why is it OK to treat yours that way?”

It isn’t my dear. And I know she’s always watching.

I took my notes all through the week before and after the surgery, and then I rested to see if I could get it out of my system. It lingered. So, yesterday, off it went. I told them I’d like the name of who they handed my case off to, by the close of business on Friday 3/30. There’s a post it on my desk. To be continued.

Just Do Your Job.

When I finished that letter, I wrote one to my health insurance carrier. We are fortunate enough to have two, but keeping things straight can get confusing.

Meghan met a new neurologist in December of 2017. When we went to the appointment there was no one to collect a co-pay. I figured they would bill it. Then, I forgot. The news of the finding of a “lesion” was enough to jar me out of my normal routine.

Sometime in January I received an “Explanation of Benefits” and a $35 check from my insurance carrier. This is not uncommon, as often I have co-pays refunded once an office receives the co-insurance payment.

A February MRI and neuro follow-up gave news of in fact TWO 1cm lesions, and some swelling. All of which will need to be watched. I got a bit distracted.

The check sat, with several other checks until March 8th, when I deposited them into an ATM. That was a Thursday. On March 11, I logged onto my online banking to see that the check had a “Stop Payment” and in addition to having the $35 deducted, I was charged a $12 fee.

Furious was an understatement, as I am meticulous about my banking.

Just Do Your Job.

On Monday the 12th I received a letter from Chase Bank explaining their end of the explanation of my fees. My insurance carrier told me that the doctor contacted them on February 15 to ask them to stop payment on the $35 as I had never paid the co-pay.

The doctor never billed me, just reached right to the insurance company. They later admitted never billing me. No apology. The insurance company never reached out to me. Never told me the check had been stopped. I didn’t go to the bank with the check until 3 weeks later.

Within 72 hours my bank had notified me online and by mail. My insurance company had no explanation as to why they never afforded me the same courtesy. My bank actually DID their job.

When I took it to a supervisor over the $12 fee, and my embarrassment, and my annoyance at the number of hours this was taking from my life, she offered me the standard PO Box to send my complaint.

I asked her to do better and she told me to fax the receipt of deduction to her. She said she’d expedite it. It’s been 10 business days. The formal complaint letter is written and mailed.

Just Do Your Job.

Then, there is the doctor who refuses to figure out mail order. My insurance has denied payment of the drug until it goes to mail order. Thank goodness it’s affordable. I’m paying it while simultaneously working out getting him to mail order it.

Just Do Your Job.

Tomorrow, I will make a few calls on our newest denial. I suspect it will take a few weeks to sort out, but I will win this appeal. Because, no one in an office is going to tell my that my daughter has “recovered,… and no further improvement …. is expected.” Nope. Not working for me.

Apparently they weren’t at the swim meet last weekend. The meet that her PTSD might have kept her from without a hard push, but the meet where she DESTROYED all her best times. At that meet I had proof that further improvement IS EXPECTED. Because it is happening.

Just Do Your Job.

That swim meet last weekend was 6 hard months in the making. There has been so much work in place dealing with her PTSD, her anxiety and her panic attacks. She had to make sacrifices and step away from her commitment to a local theater program. I didn’t give her much choice, even though I knew I was probably taking one opportunity at theater from her to give her another at swimming. Parenting is about making tough choices. She’ll be at all the rest of the theater practices. She had to KNOW she could get through this meet.

This event is just exhausting. She has a love/hate battle with it. Sometimes she even catches the “2Fly Flu”

The improvement from entry to finals just shows how much she needed to be there and get this out of her system. She’s got more progress in her.

It’s been a goal to go under a minute for over a year. She crushed it.

When you are 24/7/365 fighting a chronic illness, and in this case a rare disease, no value can be placed on physical strength, actual and perceived. You see there is never a moment when you are not waiting for the other shoe to drop, right on your head. So the need to be physically strong, is a NEED, not a luxury.

I sit here now, Sunday evening again, and I think of all the things I would have liked to do this weekend. I think longingly about how nice it would be, to be in Alabama at the PHTS Patient Symposium, and if not that, then to get a manicure, to catch up with old friends, or even to stop and read a book. But, I know that is not meant to be. Not right now.

For now, at this point my life, weekends are about putting out the fires that creep into the world all week. It is about uncovering the “in box” and fighting the fights that will get my daughter and myself the care we need and deserve.

I like to think it won’t always be this hard. But, if I’m honest I suspect it will be.

The trick is going to come in my figuring out how to keep it from swallowing me up. There is always going to be a fire, a battle, an appointment, or a medical drama. ALWAYS.

This weekend, I had dinner with my husband. I took a walk, AND I went to one store for fun. It’s not much, but it’s a start. It’s a process.

The battles rage on.

Vigilance is required. This journey is not for the faint of heart.

But we are establishing support from afar. We are finding each other.

As one of my groups says #WeAreCowdenStrong

And we, in this house, remain

#beatingcowdens

Change- The Only Constant

Published on September 29, 2017September 29, 2017 by beatingcowdens1 Comment

Wild. These last few weeks have been just that.

I’m always amazed at exactly how much can fit into hours or days. Sometimes I try to recap a day, and find myself shaking my head.

Meghan is in high school.

I feel like we’ve been looking at high schools since January. We had it figured out by May. So we thought. September 15th is ok too. Because the plan was clearly not ours to make, and like so many other things was guided by a higher power.

It’s not the high school she planned to attend. It’s not even the high school she started in September. But, on day 8 – she enrolled in a school a few miles away. The reasons are irrelevant. The outcome is what matters.

Currently her school mascot is the “Warrior.” Somehow that seems remarkably appropriate.

She is catching up on notes missed the first 8 days. She is organizing in a way that only she has, and getting herself set up. She functions largely alone now. Years of supporting schoolwork have paid off.

September is chaos. Pure chaos. 21 years of Septembers, 14 of them as a mom and a teacher. Not a single one gets easier. No matter how many years I do it. The new schedules, the logistics of organizing, and establishing routines, both at work and at home can generate extra gray hairs at the thought.

The only thing the same is the chaos. And the inevitable illness.

The weakened immune system, and maybe the ragweed allergy, means there is never a September I can recall for her with perfect attendance – or without a sinus infection.

There are so many things packed into a day. Sometimes I can’t think more than a few hours ahead because it gives me a headache.

Right now there is swim. A whole lot of swim. There is swim for her 12 month team, and there is high school swim. There is practice for both. There are meets several times a week. I think there is an 11 day stretch in October where there will be 8 meets.

There are new friends. There is a team. There are old friends reunited. There are kind people. In so many ways there is some peace. Finally.

Except 7 days of 9th grade (actually 6- the sinuses sidelined her today) don’t, or can’t make it all ok.

While my girl works to establish herself as an athlete, a student, and a generally nice human in her new school, she continues to battle every moment with her health.

And because it is that “invisible illness” kind of battle, no human would imagine what it takes for her to get through these days.

She sleeps poorly, struggling for hours each night to settle the pain in her body and the activity in her mind. She wakes fatigued, and with great effort.

Her pill case overflows – thyroid medicines- 2 kinds, allergy medicines – a pill and 2 nasal sprays, antivirals, medicine for reflux. Currently another (sigh) antibiotic, and a short course of a steroid for the sinuses. Strong probiotics, a multivitamin, and a few others, all cross her lips every day. Each one carries with it its own set of risks and side effects. Yet, we have had to make the decision each time that the benefits outweigh the risks. There is a lot of trading “this for that” that you do when you have Cowden’s Syndrome. It’s a dicey game. There are no right answers, and every educated guess could backfire.

The medication leaves her more tired.

The thyroid being gone during these years was necessary torture.

She is gaining back strength lost during months off her normal routine this spring. The knee is back to allowing her activity, but the body continues to prefer the development of one side. The difference is so subtle to the eye, but to her it feels so much more. The right side lags behind.

The foot is smaller and more narrow on that side as well. It leaves her stride off. Again she compensates. Again she aches.

The chiropractor readjusts about twice a month, sometimes more.

The backpack is heavy. Everything throws off the stride.

The sneakers are carefully chosen. I shudder at the thought of shopping for dress shoes for my tall, thin, beautiful girl to be “party ready.”

The stomach, once improving, seems to be back on strike. The pain is more frequent. The heartburn, once gone, creeps into life more regularly. But, as is the story of the chicken and the egg, trying to tease of which medicines are causing what is no easy task.

There is no “typical” 14 year old girl.

There is no “typical” Cowden’s Syndrome patient.

We are all just trying to figure it out the best we can with what we have, where we are.

There has been a lot of talk lately about disclosure, and the internet. There is no real way of teasing apart what is syndrome related and what just is. Meghan and I tell this somewhat censored, but typically brutally honest version of our struggles, not because we think others have it better, or worse, or even the same, but rather to validate that Cowden’s Syndrome is real. It doesn’t take a holiday. It affects every day and every decision we make.

I have a follow up from my voice surgery this coming week. I’m not so sure how it’ll go. All that back to school talking, even with the head microphone, has been tough.

I scheduled my next vascular surgery for February 21st. Exactly enough time to stay wrapped for 5 days and make it back to work on the 26th. They thought I was nuts. The leg hurts now. But, the luxury of time needs to be saved for things that can’t wait.

The only thing constant is change.

The shell of it all remains the same, but the logistics and decisions forming the web get increasingly complex.

Yet, we need to remember, in the midst of the regular chaos, and the medical chaos, to stop, or at least to pause. And sometimes, maybe a sinus infection is how the universe forces the pause…

Change is constant, but we remain

#beatingcowdens

through it all.

Default to Kindness

Published on November 5, 2016 by beatingcowdens3 Comments

Meghan loves to swim. I mean, athletically it wasn’t where she started, but the knees. Six surgeries on the right knee, and there was to be no more soccer, and no more dance. After the 6th one, there was to be even no more breaststroke. There is no gym class in school. There is limited walking. There is one foot, a size bigger than the other. The “off sides” that that creates in her body can be quite painful. But, the pool…

Oh, how my girl loves the pool. She is an athlete. She is a competitor. And the pool allows her to be both of those things to the best of her ability.

For the 3rd time in the 4th year since joining swimming, this September brought a new coach for her, and a new group of teammates. There was anxiety about the switch on so many levels. But, as we always say, life has a funny way of working out.

This coach is a perfect fit for her. They practice hard, and often. He is structured, and firm. But he is compassionate, and constructive. He watches. There are sometimes 50 or more swimmers in the pool when he coaches, and I swear he does his best to make some comment to each of them every practice. And, after they compete, his feedback always connects to practice.

And practice, for Meghan, has not been a problem. While maintaining a “Pupil Path” account that no one could ever critique, and planning a major fundraiser, and looking for high schools, and managing doctors appointments, and a mom who doesn’t feel quite herself, this girl has, most weeks, attended practice, Monday, Thursday and Friday afternoon, as well as Tuesday, Friday, and Sunday morning. Quite literally, swimming is good for her health.

Swimming can be a very solitary sport. It takes a good deal of mental toughness to stare at a black line for hours. Interactions with teammates on deck or during dryland (out of water training) are cherished.

Even then, as the “new kid” in the group, you can sometimes wonder about the relationships. Meghan has been very careful not to share too much of her Cowden’s story with these swimmers. She wants to be viewed as one of them, and she is doing a good job holding her own, all by herself.

And then there was today. We were at a meet and she was scheduled to swim the 200 yard butterfly. If you swim, no explanation is needed. If you don’t let me give you a frame of reference. For the group she swam with today, 72 girls swam the 100 yard freestyle. 10 signed up to swim the 200 yard butterfly. It is not an event for the faint of heart.

Meghan feared disappointing, herself, her coach. me. She was scared out of her mind. So scared that it was out of character. Out of character for a child that has had 17 surgeries, and countless tests. ER visits, and hospitalizations. She was that scared.

And as the race approached I watched helplessly from the stands as she began to unravel. And I watched with a grateful heart as teammates picked her up and put her back together again.

The one who I can only say was acting as my angel, talked her right onto the block. It only took a second of my attempt to video the race to see that something was terribly wrong. There sat her goggles, first mid face, then in her mouth occluding her breathing. In butterfly you can not break stroke. At the end of the first 50 she stopped. She was done.

My heart sank, and ached for her. I wanted to pick her up and hug her, and take her back to the rocking chair I used to use when she was a baby. But she’s 13 now – so I could only watch.

The official came to her and asked if she wanted to try again in the next heat. There were 2 lanes open. She said yes. And as they placed her in one heat, her friend, my angel, came to the official and asked if Meghan could swim, “in the lane next to me.” She said yes, and as Meghan barely got settled on the block, another teammate flagged the official to wait a moment. Meghan’s goggles were still not on.

The start went fine this time. The goggles stayed on. And she did it. The whole thing.

By the time she got to her last 2 laps, most of the other girls were finishing. But, then there was more magic. There was cheering, from her teammates and strangers alike. There was a push for her to get finished, to press on, and to make it. So, she did.

I think I cried the last two laps. I was struck by this child of mine, her life, the adversity, and the stubbornness. The ability to not give up. The desire to be normal, and to succeed. And as she touched the wall her team mate, that same angel, swam right into her lane and gave her the biggest, most genuine hug.

She did it.

Not too shabby for the first time. And more than one teammate whom she respects greatly told her they gave her credit for getting up and trying it again. So did her coach.

Meghan isn’t the “cool” kid. She sometimes struggles a little. But, she remains true to herself at all times.

Today, she got to see the kindness in others. It was pure. It was genuine. It was unsolicited. It was the best kind.

13-18 year olds can be a tough group. But these kids showed today that when they are left at their “default” setting, when they are alone and see soemone hurting, they will choose kindness and compassion.

She is asleep. Tomorrow is another day of swimming. But, those events won’t cause this angst.

Gratitude fills my heart, that once again even at the toughest moment, good shines through.

And as she said goodnight, she told me, “Next month, when I swim the 200 fly…”

Endurance. Persistence. Stamina.

#beatingcowdens

Type A, and Then Some…

Published on September 18, 2016 by beatingcowdensLeave a comment

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

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

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

16 Signs You’re a Little Type A

Go with the flow.

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

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

I am a work in progress.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Good, cause I needed something else to do.

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

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

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

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

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

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

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

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

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

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

Slow it down.

Hmmm.

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

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

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

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

Instead of hiding, we remain,

#beatingcowdens

forever!

On Your 13th Birthday…

Published on August 8, 2016 by beatingcowdens1 Comment

August 9, 2016

Dear Meghan,

As I sit to write this some time in the middle of the night, I am reminded of the early years, when so many of the middle of the night hours belonged to the two of us. Yes, Meg, I said YEARS.

You struggled my girl, but your determination was evident early, like the day the NICU nurse called you feisty. She was right. And it has proven to be one of your finest and most valuable attributes.

When I look back on pictures of those early years, it doesn’t seem all that bad. I guess I never had time or desire to photograph some of those tear-stained days. And maybe. if it wasn’t for the colicky cry seared into my brain, I might have even come to forget that you considered sleep optional, crying and screaming mandatory, and that carrier pouch a requirement for all things. At one point we had even taken to calling you a kangaroo baby…

But, I look at the babies in those pouches, And I think to those mother’s “enjoy it.” You might find this hard to believe my dear, but there is not a single minute I would change or do over. Every step along this journey with you has BEEN the journey. And I have the deepest gratitude that God selected me to be your mother.

The path hasn’t been easy. Sometimes it’s been rocky, and a little unsettled. Other times its been like traveling through fire. On a bicycle. With no handlebars. Backwards. But, I think we’ve all found pieces of ourselves we never knew existed, and there is a family bond between you, and me and Daddy that so many envy. Not for what we’ve done or where we’ve been, but rather the fact that we have done, and continue to do it all together.

At eight years old, you were tossed a diagnosis of a Rare Disorder, a 1 in 200,000 PTEN Mutation called Cowden’s Syndrome, that has leveled many grown adults. But, by eight years old, you were already seasoned at doctors, OT, PT, and speech. You’d been there, and were still doing dome of that. At 8 you were intimately aware of what it meant to spend hours waiting for doctors, and you had a clearer visual of an operating room than anyone should ever have. So really, in reality, that diagnosis just pushed us in the right direction to continue to help you become who you were meant to be.

It’s rotten to be the “unusual one” the one with all the risks and the need for that “hyper-vigilant” surveillance. But, I’m thankful.

See without Dr. Jill to push us to your diagnosis, without all those things falling into place, it’s likely I wouldn’t be here to write this. Your diagnosis led to mine, and while I am intimately connected with the reality there is no guarantee of tomorrow on this earth for any of us, my heart is sure that you, my angel, my gift, you my dear saved my life.

I watch you with each passing year, and the challenges pile on top of themselves. And we both sometimes want to stop the presses and scream, “IT’S NOT FAIR” and the top of our lungs. but then we laugh. “Fair” is just a silly word anyway. It’s not the perspective we use. It’s not worth our time.

You approach this birthday with 17 operating room trips under your belt, and too may ER visits and, tests, and hospitalizations to count. You have had to make decisions, and think thoughts that are beyond the scope of what you should contend with. But with grace and dignity you proceed, because none of that is what defines who you are.

Grace,. Poise. Strength under pressure. — Grace. Poise. Strength under pressure.

Despite unimaginable pain, you press on. Your body would not allow for dancing school or soccer. But the competitor in you was not to be silenced. Running was out of the question, so now you “fly,” in the water, 11 months a year 4-5 days a week for hours. You pull energy out of the crevices of your toes to push through when most would curl up and give up.

First season swimming, a few weeks in. Spring 2013

2016 Working on her "fly" — 2016 Working on your “fly”

You press on in the community, focused to raise the necessary founds the PTEN foundation will need to create our patient database. But, you will not turn your back on the charity where you began, Global Genes, “for the babies who can’t speak for themselves,” you tell me. You make flyers, select venues, advertise and collect raffles. You speak at schools and organizations across the Island who will have you, to raise awareness that rare diseases are everywhere. For the last 2 Februaries we have celebrated Rare Disease Day with almost 200 people, gathered because you have a mission.

Youngest “Woman of Distinction” recognized in Albany by Senator Lanza in May. Proudest parents.

I watch you talk to people and I swell with pride. When you’re intermittently stuck in that wheelchair you hate, you decided to help the doubters, the starers and those passing judgment. A simple business card with a phrase you helped create “Cowden’s Syndrome – Rare. Invisible. Real.” It starts a conversation, or it ends the behavior. Either way you manage with grace to rise above.

You take the high road so many times a day. I know it’s not easy. And I know there are people in your path every minute determined not to make it easy. But, truth be told, as we are learning, there are others out there. There are real people, at swimming, at youth group, at SICTA. There are real people who are finally recognizing that you are pretty spectacular. And I don’t mean that in a ‘who is better than who’ way. I mean it in it’s best sense. Everyone is spectacular in some way. You just learned it a little early.

As you turn 13 this week, I wish you so many things, from the depths of my heart and soul;

*Never lose the magic. Ever.

*Never compromise yourself for anyone. Remember that doesn’t mean to be brick wall stubborn. It means to keep those morals. Rise above.

*Always remember no matter how wild and crazy the world gets, you’ve got two parents who will love you regardless… and that is a PROMISE.

*Smile, sing, laugh, act, dance, be sarcastic, and sensitive, and guarded and silly, with a healthy touch of humor thrown in. Do it all always with respect.

*Continue to constantly take every obstacle tossed at you, and it toss it back, or walk past it and move on. When they tell you you can’t, find a way to show them you can.

*Never let anyone make you feel less than. You, you are enough. You are always enough. God said so, and He is smarter. Trust.

*”Be the change you wish to see in the word.” – Ghandi

Your teenage years will be a giant path of self-discovery. It won’t always be smooth. But nothing is.

Be you, and it will fall into place. And in the off chance that none of that works, I’m not going anywhere.

I love you from the bottom of my heart. You truly are the child I was meant to have, and there is NO ONE I’d rather be #beatingcowdens with, than YOU!

Happy 13th Birthday! You will always remain, “My Most Thankful Thing!”

I love you ALWAYS,

Mom

*Thanks for bringing out the best in me. I love you more than you know.*

Aunt Em, Arista, Albany, and (Almost) an Ambulance

Published on May 15, 2016May 17, 2016 by beatingcowdensLeave a comment

THAT would be the alliteration to sum up the week that was, Thursday May 5th – Thursday May 12th.

Sometimes I get annoyed at myself that this blog gets neglected. Then I realize it’s because sometimes I have to LIVE the life, before I can write about it.

It was a rocky month leading into the much anticipated school play. Her health was questionable. She spent most of Spring Break recovering from some random illness. Attendance at swim has been spotty, a true sign she’s not herself, but after attending the Swim Team’s annual banquet the night before, she was ready for “The Wizard of Oz Jr.”

FullSizeRender (4) — Meghan with the drama teacher that helped her find a piece of herself.

Meghan knew she liked the stage. She didn’t know until she met her drama teacher in 6th Grade, that she also enjoyed acting, and singing. Her father and I were stunned when we heard her for the first time. Thank goodness for teachers… she may never have found this outlet. And it has been such a wonderful thing. She has met some really great kids, and has had fun along the way.

She was so excited to play Aunt Em in this year’s play, and even more excited because “Dorothy” was being played by a trusted ally, a rare commodity on Meghan’s life. It made the role easier to get into, and to play with her whole self.

FullSizeRender (5) — Meghan and her friend “Dorothy”

Four shows in two days tired them out, but the standing ovation to almost a packed house at the Intermediate School Friday night showed all their efforts to be worth it.

Meg slept almost all day Saturday. This is how it works. We play trade. For those of you familiar with the “Spoon Theory,” (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) we often borrow off the weekend “Spoons.” We don’t get out much, but it keeps things working. She woke some time around 2:30 PM Saturday when I roused her.

chronic-fatigue-spoon-theory

Sunday was Mother’s Day. We visited some special mothers, caught up on some homework, and finished a project. Monday was school as usual, followed by her second year induction into the National Honor Society, (Arista) followed by preparing for Tuesday’s trip to Albany.

Some time over the spring break I was contacted by the office of Senator Andrew Lanza. Apparently, every year, every Senator gets to select a “Woman of Distinction” to be honored at a special ceremony in the Capitol in Albany. We were amazed, and humbled that he had chosen Meghan. The youngest to ever receive the honor, he was attracted to her spunk, her determination, and her “can do” attitude. He liked that she didn’t wait to grow up to start doing something. He liked that she was 12 and making a difference now.

So on Tuesday morning, Felix, and Meghan and I set out on the 2.5 hour journey to Albany. The trip was smooth, until we got a tiny bit lost in Albany, but we were easily saved and set right by the Senator’s staff. Nancy had us in the right direction in no time.

_DSC6837 — Every “Woman” had a bio on the wall. We also got a beautiful book with all the bios inside!

We got to the Senator’s Office and enjoyed a wonderful lunch. We got to sit on the Senate floor, and watch some of the Senate in session. We walked around the building, and enjoyed the afternoon.

The ceremony began at 5:30 and probably my only regret was that I couldn’t record every moment to replay in my brain forever. It was one of our proudest hours as parents.

_DSC6877

https://www.nysenate.gov/initiatives/women-distinction

(If you click the blue link above, Meghan is on Page 44.)

The reception that followed allowed for some conversation with Senator Lanza. An incredibly intelligent, down-to-earth, “regular,” guy kept Meghan chatting for well over an hour. We took pictures, laughed, and she even secured an internship for the summer after her freshman year in High School.

_DSC6894 — Meghan and Senator Andrew Lanza

The drive home got us in the door around 11. We were asleep by 12 and ready for school and work the next morning. Tired, but determined, she even made swim practice.

Thursday I dropped her at school regular time.

By 8:20 my phone was ringing with the school nurse’s number. She was not well, and they were frightened. They wanted to call an ambulance. Knowing where that would lead I begged her to wait. I went into automatic, and with an incredibly understanding group of colleagues and administrators, I was at her school in under 10 minutes.

When I arrived the color had begun to return to her face. She was weak, but able to focus on me. I told them I could take care of it, and I signed her out while they wheeled her to my car. Once in the house I waited a good 3 hours. No sign of a problem.

Rice noodles and flat ginger ale did her in inside of 20 minutes. I can honestly say in her 12 years I’ve never ever seen her that sick. She was in so much pain, periods of time were missing from her memory. I was terrified. But, foolishly or not, I held out. She was hydrated. I wasn’t taking her to the hospital here. Not again. And I knew we were meeting a new GI in the city Friday. If she could just hold on…

And she did. Because for almost 24 hours I just didn’t feed her. She slept most of it anyway. But, I’ve decided hydration wins, and food can wait. It worked. By Friday night she was almost back to herself.

Yesterday she swam in a CYO meet.

My head spins. And the tales I tell here are simply HER end of the week. Add in the routine, and the mundane, and… it’s been a long week.

I have work to do. Lots of it. It’s in a big pile right here next to me. There were plenty of things that “should” have been done that weren’t. And you know what? We’re OK. The house is in one piece. The Board of Health isn’t coming to inspect my extra dog hairs on the floor. The laundry isn’t folded. But it will get done.

Tonight I put me first for an hour, and putting me first is getting the week out of my system right here. Just me, my thoughts, and a glass of wine.

Cowden’s Syndrome – you’ve got some good fight in you, but we are stronger. We will take you every time.

We are #BEATINGCOWDENS!

_DSC6846

The War Ain’t Over Yet…

Published on October 1, 2015October 1, 2015 by beatingcowdens2 Comments

Tonight wasn’t one of our better nights. And, as we drove home, and sorted through a few things, I offered Meghan this outlet. I told her writing helps me sort out my thoughts and get refocused. Here is Meghan, as our GUEST BLOGGER….

***********************************************************************************************

Tonight I couldn’t finish practice. Yesterday I hurt my knee, my kneecap clicked back out at practice and I got shocking pain through my leg. A lot. So I pulled the rest of practice and iced my knee when we got home. I went again to practice today and hurt my knee so much that I couldn’t continue. I went home in tears feeling like I just failed. I gave in tonight. I lost this battle, but I will win the war. Tomorrow I will not play gym, for I will save my strength for swimming.

So, I will go back to Wagner on Saturday, and I will finish practice and do it well. I love swimming, and I love the pool. When I swim I feel like I’m actually at peace. I won’t lose my favorite thing in the world. I will keep fighting, and Cowden’s Syndrome will not win the war. I WILL.

I cannot be normal, and I cannot play as much as I’d like to with the kids. I always have to watch and be careful about what I do to my body. Well, I am not going to let that stop me. I’m going to succeed and I’m going to live my life to the fullest.

Cowden’s Syndrome may win quite a few battles, but I will win this war. I will keep fighting and I will stay strong. I will get some injuries along the way, but I will recover.

Hey Cowden’s, did ya hear me? The war’s NOT over yet, and you will not be the victor. Take your small victories, for today was one of the days when I did give in, but it won’t be happening again any time soon.

“I Am From” – Guest Blogger Meghan

Published on June 6, 2015 by beatingcowdens3 Comments

I Am From

by Meghan

I am from Love

I am from mutts barking at night

I am from swims in the backyard pool

I am from hospitals and procedures

I am from suffering

I am from anticipation of how my life will survive

I am from anguish after surgery

I am from crying in the hospital at night

I am from fear of not being strong enough

I am from doctors saying this cannot be

I am from hearing that I am unusual

I am from paralyzing fear of iv’s and needles

I am from being cast out for my pain

I am from fear of not surviving from the pain

I am from baby blue walls

I am from a home that cares for me

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

I am from a home with clouds as chairs

I am from a home like a chocolate bakery

I am from the calming smell of Yankee candles

I am from the smell of brand new books

I am from the pool

I am from the thrill of swimming

I am from competition

I am from Wagner Aquatics and CSI

I am from the relief that comes with butterfly

I am Lori

And Felix

I am from Barbra

And Leon

I am from the Ortegas

And I am from the Thompsons

I am from many beliefs

I am from hurt and hatred

And I am from love and compassion

I am from different weather each day

I am from winter devouring sweet spring

I am from Christmas trees going up after Thanksgiving

I am from a special Thanksgiving meal the day after

I am from August Disney trips

I am from spices

I am from cookies and cake

I am from avocado

I am from Isagenix

I am from playing with my first dog Lucky

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

I am from church at Zion and Castleton Hill

I am from the beliefs that Jesus will rise again

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

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

I am from adventure and fantasy filled books

I am from Rick Riordan and J.K Rowling

I am from action figures and comics

I am from DC universe

I am from Wonder Woman

I am from He-Man

I am from Batman and Superman

I am from the sidekicks

I am from X-Box 360 and video games

I am from mythology

I am from the LOVE of my family

BEATING COWDENS!

Hurry up… and waiting rooms…

Published on May 6, 2015May 6, 2015 by beatingcowdens1 Comment

The early hour usually means I would be at work. Instead, I am sitting on the 10th floor, in the waiting room. Again.

Right now my beautiful girl in undergoing surgery number 13, the 6th on her knee. The goal is to stop the blood that has been leaking into her knee and causing degeneration and chronic pain. This time there is a new doctor at the helm, an orthopedist from Long Island. Our vascular guy, the leader of surgeries one through 5 on that same right knee has taken a back seat. He is on standby. We are sitting.

Waiting.

Alone with our thoughts. Not always my favorite place.

These last few weeks have been a whirlwind. When we met the orthopedic surgeon in February, and Meg said May was a good time for surgery, she had certainly calculated her plan.

Over the last few weeks, we have been busy packing in as much good stuff as we could fit.

The school play, her first production, was April 30, and May 1. It was such a thrill to watch the spirited enthusiasm from my daughter and all the other children. She is hooked.
And while drama practice was going on 5 days a week, she was still making three swim practices a week, working hard to finish out strong. As a result she received the “Coaches Award” at the team dinner last week, and she was moved “up” a level. She was able to practice with her new group starting Monday, so she got in 2 practices before this procedure will derail her for a bit.

She also almost finished the CYO Swim season. Making 7 out of 8 meets (the last one is May 9th) she swam hard and strong one day each weekend as well.

In the midst of all this, she managed to balance her time well and was inducted into Arista, the National Honor Society.

All the while we looked for spring clothes, and shoes (in 2 different sizes) for my beautiful 5 foot 5 young woman.

I know there are people who are busier. I know multiple kids jostles the world. But, I also know I am proud.

She ran on raw nerve. She pushed and pushed in ways that would have taxed a healthy child. And she made it. Sunday’s morning swim meet was a no – go, but I am just so impressed she accomplished all she did.

And just for fun she broke her first pair of glasses yesterday. Not bad for a kid whose had them since K. New pair already on…

And I’m impressed I got her there.

We like to convince ourselves that we are just like everyone else. But the reality is that this genetic disorder messes with our bodies and our minds.

As I said to the nurse this morning when she wondered why Meg was a little edgy, “It’s not you. You are just an ACCUMULATION of her life. Step by step. Poke by poke. Surgery by surgery.”

I think she got it. Maybe. As the woman in the bed next door in preop – clearly in her 60s, said she had never had surgery before.

So very hard to believe.

I’ll update later. I’m waiting. Cheering my kid on as she continues to be BEATINGCOWDENS.

World Rare Disease Day – Advocacy and Awareness

Published on February 27, 2015February 27, 2015 by beatingcowdensLeave a comment

World Rare Disease Day is February 28th. Although the actual day is February 29th (the rarest day…)

It is a day of raising awareness across the globe about the 7,000 rare diseases that plague 1 in 10 people.

Our fundraiser has ended for the year. Our checks have been sent. All that’s left for tomorrow is our denim ribbons and our shirts. This day is right up Meghan’s alley. Meghan, whose entire platform has become raising funds and awareness, relishes a day set aside for just that.

Although some days I suspect it would be easier to be an advocate, rather than a patient AND advocate, I ~~suspect~~ am sure that we are more effective advocates BECAUSE we are patients too.

I get that not all diseases, ailments, or medical issues are “RARE.” I also fully understand that that doesn’t make one more important than the other. It’s just that when you have a chronic illness, life is really challenging. When you have a chronic illness BECAUSE of a RARE disease, that really has NO treatment, and definitely NO cure, some days the hill seems insurmountable.

I texted my husband yesterday afternoon to let him know I was going grocery shopping. He told me I was nuts. A week post-op from vascular surgery that put 25 incisions in my right leg, he might have been right. Except he didn’t argue. Timing would not allow him to go.

Grocery shopping in my house is an endeavor. I cross a bridge, and hit not one, but two stores – miles apart before returning home after about a 4 hour round trip. It’s one of the few things easier in the winter – as I don’t have to pack ice!

Why such a journey? Meghan.

Among other things I have learned from my daughter, she has inadvertently schooled her parents on the value of nutrition. Meghan has had food “issues” since birth. Slowly we have played and peeled away and adjusted her diet to be free of Gluten, Casein, and Soy, as well as most dyes and preservatives, and highly acidic foods. She takes digestive enzymes with every meal, and a host of nutritional supplements.

She went from grossly behind in speech/ language to miles ahead. She surpassed extensive sensory issues.

I don’t cook. Ever. But, I shop. And it’s my job to make sure the tools are in place to whip up tasty meals for Meghan, and all of us. My husband never disappoints. He is creative, tasty, almost passionate about Meghan having a culinary experience she will enjoy. He is fantastic.

I shop at Wegmans. And at Whole Foods. Most things Meghan eats are organic, and by default a lot of ours is too. My grocery bill is usually about half a mortgage payment every 3 weeks by the time I feed the dogs too. It is the sole reason we don’t settle all out debt. And it is worth every penny. Nutrition is without a doubt the best investment I have made into the health of my child.

The game changer was the addition of a nutritional cleansing program I have come to trust into her diet. Felix has been using it for almost three years. Meghan and I for about 18 months.

Felix needed to lose weight. But almost as an after effect, after losing 50 pounds, he noticed he felt great. I cautiously introduced the product to Meghan in slow, low doses. Once I was clear she had no reaction, I went all in. For well over a year now she has had a protein shake for breakfast every morning, and since starting school she takes a meal bar for lunch on school days. Over 40 grams of healthy, well-digested protein a day, and this child has done nothing but grow!

Growth spurt? Maybe. But the hair, the skin, the nails, the teeth. She glows of good health. She missed her shake for 2 days a month ago. She had a tough swim and felt awful. Coincidence? Maybe. But she’s not even taking chances any more.

In my house we have a protein shake every morning, and Meghan has some organic, home-made waffles too. We don’t just trust any protein shake. Ours is high in whey protein from “happy cows” in New Zealand. And my girl who can have no dairy at all without severe pain – tolerates these like nothing.

Leaves a mom to wonder- maybe it’s not a “dairy” allergy, as much as a “what’s fed to the cows” allergy?

I could debate processed vs. natural vs. organic all day. What I have here is results.

When you are fighting a rare disease, you need to have the best food in you as possible so you can battle like a champion.

Meghan got out of swim practice tonight. She never gets out of the pool. Her coaches know that. I know that.

“It hurts Mom.”

Dropping stomach, smiling face…

She knows. All of it. Whether I say it or not. She misses nothing the doctors say, and despite my wishes they ALL talk right in front of her.

She has earned the right to sit out. Her coaches know how hard she works. She waited for starts – to get a few in before Sunday’s Silver Championship meet.

On the way to the car she told me she wasn’t sure the knee would hold till May.

I am still waiting for a call back from the orthopedist from last week. Apparently her notes are being typed. He can’t possibly speak to her case without them. He saw 65 patients the day we were there.

The knee is swollen. We will try ice. Hopefully that’s it.

“What if it’s blood?”

“What if it’s not?”

That’s kind of how the conversation went.

Truth is, neither of us know. So we will press on. We have the main plan – the one that lasts till May. And we have the back up. The one where we just yell “plot twist!” and go with whatever happens.

Why did I go grocery shopping last night? For Meghan. For her food. And so she sees me press on. Despite being hurt. Because if I don’t press on through tough times, how can I ask the same of her?

My Mom may not have a “rare disease,” but I learned stubbornness, stamina and work ethic from her.

Rare Disease Day 2015. It’s not so much about “celebrating” as it is about advocacy and awareness.

Because the under diagnosed, the underfunded, and the often ignored – matter. Very much.

We are BEATINGCOWDENS… One day at a time…