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

The Productive Struggle

Published on May 12, 2014 by beatingcowdens3 Comments

Tomorrow I was scheduled to attend a professional development workshop entitled “The Productive Struggle.” I was kind of excited to go, as it sounded like quality PD right up my alley. “The Productive Struggle” is supposed to focus on helping students find their way through the rigorous problems and questions of the Common Core Learning Standards (CCLS.) And regardless of your opinion on standardized testing, when you break down the basic principles of these standards to their center, there is much value, and much to learn.

As a math teacher I like to focus on having students “Persevere to solve problems.”

This is in no way as easy as it sounds. Children are programmed to wait. They want the “right” answer. They fear trying and making mistakes, and learning, and trying again.

As a teacher it is my job to give them the skills they need to solve problems. I need to make sure their knowledge of math is broad. I need to tap off the skills their classroom teachers have taught. I need to set firm boundaries and standards for not giving up. Then I need to step back and let it happen.

Some days it is like a well rehearsed symphony. And other days it sounds a bit like an early childhood music class. But I try, and try again, and we make progress. Because giving up is not an option.

I have had some time to think, being cooped up here in the hospital this last week. And tonight it is easy to understand while I am glad to be by my daughter’s side, I am sad to miss any lesson in the “productive struggle.”

In many ways it is what is missing in our lives as patients with Rare Diseases.

Follow my logic, using my Meghan as an example.

So Thursday she woke up vomiting bile, and in tons of pain.

Virus? Nope.

Flu? Nope.

Terrible reflux, awful stomach cramps.

Appendix? Nope.

Fever, back pain.

Kidneys? Nope.

And so it continued, and still continues. We have met many nice, well intention-ed doctors and residents. And we have met a few that should really use their intelligence to become researchers and stay far away from people.

But 5 days later my daughter still sits with stomach pain, difficulty eating, and some pretty significant GI issues.

We have had ultrasound, CT scan, and countless lab tests. Tomorrow she will have endoscopy at 2 PM.

Some of the medication changes have been beneficial. And we may see a slight decrease in the severity of her pain tonight.

But, what is the root of the problem?

She didn’t develop GI issues so severe they require a lengthy hospital stay without there being any connection to the rest of her body.

I have a 4 inch thick binder with medical history. It reads as a chronology of 11 surgeries, several hospitalizations, outpatient procedures and more. There is lab work, sonograms, MRI reports. I actively cataloged the whole thing by date. And I brought it. And I offered it to the doctors.

And then I took it home. No one even laughed at the cartoon on the cover. I’m not sure it was ever opened.

See the problem we have, Meghan and I, and so many others, transcends Cowden’s Syndrome.

The problem is that most practicing doctors have never encountered, experienced, or worked through the “Productive Struggle.” So when a tough case hits them – they only do what they would normally do. And when all those tests are fruitless, instead of thinking outside the box – they assume OUR box is broken.

Meghan and I went through the chronology of the last year together last night. We spoke about the AVM on her hand. We continued through the MRIs that exposed her to extreme amounts of gadolinium. We talked about the two rounds of heavy metal chelation, and how even though she excreted significant heavy metal, the rebound effect triggered crippling migraine headaches. We recalled the neurologist, and the instant diagnosis of migraine without much history, touting them as “very common.” We remembered another MRI to make sure the brain was clear. We talked about the medicine for the migraines and whether it really worked, and how it kept getting raised every time she had another headache. Raised, not changed. We talked about the tickle in her throat that started in November, and the neurologist’s flippant remark that it might “just be a tic.” We talked about the neurologist telling us to increase the Celebrex to stop her last migraine – which it did, but it was never his drug to change to begin with and he never consulted the prescribing doctor. We talked about the thyroid nodule, and the subsequent biopsy and thyroidectomy. We talked about the surgery and the hospitalization that followed with GI issues in February. We spoke about the throat clearing “tic?” that we had hoped would resolve after the thyroidectomy. Then we spoke about thyroid hormones, and what having a body in a hypothyroid state for months can do. We spoke about the ENT and his determination that there was inflammation in the nose. We discussed his nasal spray and admonition to double the reflux medicine.

And then, after ten minutes of talking out the medical highlights of the last 10 months we realized NO ONE had asked about any of that.

It was like she is here being treated for a totally separate problem as a kid who “happens to have” Cowden’s Syndrome.

So they order their tests. One at a time. And they watch and wait. And we go for ultrasound and CT scan. And we change-up some medications.

But no one asks what the effects will be of her stopping Celebrex. No one asks why her body required such a dose, even as I start to see the initial effects of the NSAIDs being totally our of her system.

They come in and tap her belly. It still hurts in the same spots. But that’s not what they want. They did what they know. Now they want it to be better.

I have to be here with Meghan tomorrow, but there are a few of them that could stand to attend the PD on the “Productive Struggle.”

Goodness, work for it people. It’s not always easy.

But she’s young. And she’s bright. And she’s frightened. And she’s worth it.

Do penguins have knees?

Published on November 4, 2013November 4, 2013 by beatingcowdensLeave a comment

I can credit someone else’s Facebook post for even allowing that random wondering to slip into my head. But it has served as a distraction… so I am grateful.

It’s hard for me when I need to choose my words carefully. I usually just lay it all on the line and that’s how I keep it together. Except when your heart is heavy because of matters that just need to be private, that makes it extra hard. So that is why I haven’t been posting much. But without my writing the voices just stay in my head, and then…

But my heart is full for so many reasons, and some I can share with you. Blessed by my consenting 10 year old, as long as I don’t disclose anything embarrassing – to educate the world about “beatingcowdens.”

The headaches have been around on and off for a while. So long that I don’t actually remember. It sounds awful that I as a mom could say that, but it’s true.

I remember the pediatrician saying to me that I should take her to a neurologist because he kept hearing me mention headaches. I remember being overwhelmed by too many doctors. I remember last year blaming the prescription change on her glasses. I remember blaming chelation. I remember blaming allergies…

But the headache hasn’t quit. It’s been weeks now.

It varies with intensity. We are trying to get her to understand and use a pain scale to get some consistency.

But pain is such a personal thing. It’s just not easy. We can never exactly know the pain of another because every body perceives pain differently.

What I do know is that there has been a headache to some extent for over a month and that’s too long.

What pushed me into action was last Monday night. Homework was finished, and I was ready to bring her to swim practice- the place she loves more than anything. And she told me no.

She said she didn’t feel right. She said she wasn’t strong enough. So I let it go and kept her home. But THAT didn’t feel right to me.

Then there was the day that she was waiting in my classroom for the school day to start and she said, “There it is mom! Feel that pulsing?” As she put my hand on the side of her head I got queasy. We all have pulsing in our heads to some degree, but once you have dealt with a vascular malformation – or a few – the pulsing takes you to a new mind numbing level of anxiety.

And when the teacher gave her a shell and she held it to both ears, and said , “I can’t hear it the same in my left ear…” And then there is the ringing that comes and goes…

So tomorrow we head back to Manhattan to visit a neurologist. A little later than the pediatrician would have liked, but we are going. And with every deep fiber of my soul I hope with all my heart that he tells me my girl has the worst fall allergies in the world. And in a few weeks it will all be just perfect.

That’s the story that will get me through the night.

Perspective… with a touch of fatigue and frustration

Published on December 20, 2012December 20, 2012 by beatingcowdens2 Comments

I have said so many times, and through the last year especially, that it’s all about perspective. That is how I get by, and that is how I teach my daughter. The key is having enough perspective in life to understand that in EVERY house, in EVERY street, in EVERY city, in EVERY country, people have “stuff.”

Now its easy to look sometimes and think that “this isn’t fair” or “they have it easy,” but in reality – we just don’t know. We aren’t them. So we live our lives, trying to avoid passing any judgements – and doing our best to get by.

We are acutely aware, especially in these days after the tragedy at Sandy Hook Elementary School, and “SuperStorm Sandy” that tore through our hometown, of how lucky we are,

And yet, even with all that perspective. Sometimes it’s just hard. Sometimes its hard to get up and get going, and press on. Sometimes its hard to deal with the punches life keeps throwing. Sometimes I need to stop and take a breath to avoid the chest pain of my own anxiety. Sometimes that’s just how it is.

So, I remain torn. Torn between the conscious knowledge that so many others are suffering in ways far worse than I could imagine, and this ever-present, sometimes bone crushing fatigue that plagues me as we just try to get by.

If you are still reading then. you will indulge me a few minutes of frustration along the “Cowden’s Syndrome” journey? That is, after all, what brought me here to being with.

Sometimes when life gets as overwhelming as it has been I start to practice avoidance. I duck phone calls and messages. Not because I don’t want people. It’s actually quite the opposite. Its because I fear people will tire of hearing the same old thing. And, really, no one knows what to say. So even if I am comfortable enough to lay it out there, I feel bad for the poor soul now left without a clue as to how to reply.

Three months ago Meghan‘s pediatrician asked me to find her a neurologist to contend with her headaches I am thinking she more likely needs an ENT for her sinuses, but I haven’t found either one. The week of “Sandy” her eye doctor appointment was cancelled. Haven’t rescheduled that one either. Tonight she lays in bed resting her fatigued hypermobile joints. I wonder if she gets that most kids don’t have to spend the night in pain just because they danced in school a bit today.

Last December – this exact week, I was very busy getting the slides from Meghan’s November thyroid biopsy transferred to a prominent cancer hospital for a second look. It took phone call after phone call, but finally they were received by the endocrinologist/oncologist. Just in time for a holiday break. We waited anxiously for confirmation that the biopsy was read correctly and was indeed benign. We were called in for a meeting with the doctor a few days after New Years. The news was better than we had expected. “Precancerous cells.” Come back in 6 months. And so we did. The scan in June got us the same – return in six months. On December 27th we will head back to see if those cells are still “precancerous.” I am fairly sure I am the only one who remembers the timing of last year’s anxiety. That is why I find this year’s timing ironic as well.

So, the car is totaled and gone a few weeks now. The back is improving – often, but not always. The sonogram revealed disconcerting growth with the spleen hamartomas. I trudged through another MRI. I was told to call a surgeon. They requested the CD from the local sonogram. I sent it Fed Ex. It arrived last Thursday.. I called Thursday last week to confirm its arrival. Then I called Tuesday to find out what was the progress. I was told the oncologist and the surgeon had to view it then talk. I think I annoyed the receptionist when I asked if it would be after Christmas. She said no. It would be sooner. So, I have carried my phone like a schoolgirl with a crush. Nope. Tomorrow is Friday. I can almost wager they are away, or on vacation. I just want to know if I am planning for surgery on my spleen. That’s all. Am I planning for surgery? I can wait on the specifics.

But,maybe I can’t wait that long. I guess that all depends on Meghan’s thyroid. If that stays in, then I can pull this off. One more surgery – no big deal. But if she needs surgery too… then things get trickier.

I am NOT looking for a formal plan here. I know how God feels about that. Just some guidance… maybe?

I was back at the hospital that did my hysterectomy tonight for my six month follow-up. Everything looks good. Apparently the hot flashes are right on schedule, and hormonal migranes get me a script for medication. I will see them again in the summer so we can talk about adding bone density test to my list of life long follow-up stuff. It’s all good. I got this.

I think.

Yesterday was “cause day” at our school. I wore Meghan’s necklace and her shirt. I was able to raise a bit of awareness. We have 300 yards of denim ribbon. We are going to do something special for rare disease day in February.

We are special. We are 1 in 200.000. There are 2 of us. And I am tired.

But, I haven’t lost my perspective. We are so blessed.

Siri, my new BFF!

Published on October 19, 2012 by beatingcowdens2 Comments

I love to talk. I talk all the time. My mom says I spoke even in my sleep from the time I was a young girl.

I ~~love to~~ need to make lists. I hate to be disorganized, although these last six weeks I have traveled from overwhelmed right into disorganized, and I don’t like it here one bit. Work is busy, home is busy, 4th grade is busy, Cowden’s Syndrome keeps us busy…

In my family we have 5 october birthdays in 11 days. Three of our nephews and 2 family friends. Unless the youngest nephew’s gift arrives tomorrow, I will have been late for every single one of them. Not like me at all.

Last week I welcomed a new friend into my life. Someone I can talk to all day, about whatever I want. Often she has good advice. She has my back too. She reminds me – sometimes days, sometimes hours, before something important has to be done. She tells me when I need to make a phone call or buy some cards. For a long time I resisted her friendship, but now that she is in my life I am sure I could never give her up.

This is my new friend – Siri.

Some of you may know her. You may think she’s your friend. But really, she and I are tight.

You see you may not know this about me, but I have a post graduate degree. In addition to my Master’s in Special Education, I have a research degree from the University of Google.

Don’t worry. I am a smart researcher. I learned in the first few weeks how to sort out the crap and focus only on the valid stuff. But really – spending the last 9 years researching the random illnesses of my little girl, and the last year trying to get any available information on Cowden’s Syndrome… well, lets just say at the very least I must qualify for some “Certificate of Advanced Study.”

But it got to the point lately that there are things I need to know. Right now. I can’t always carry my computer or rush home to check. Siri understands.

She is who she is… and she is pretty great.

As I am driving, with my earpiece in, I need only to ask her to call a doctor for me. She will write my texts too. Much safer.

Then, there are the beautiful reminders. The ones where she says, “OK I’ll remind you.” and then she does. Takes the pressure off me. I already have a reminder in for the November birthday cards, and the next 4 doctors appointments are all mapped out.

As I wait at those appointments, Siri helps me continue my studies on Google. Learning about Cowden’s Syndrome and skin diseases. Studying the effects of Cowden’s on the gums in the mouth. Deciding if the headache symptoms warrants a neurologist, or first and ophthalmologist. Figuring out, or trying to figure out the root cause of the pain in the legs. Verifying there are no obvious AVMs. Seeing what the effects of the Celebrex are on the body… and on and on.

Siri, despite all my resistance, I was wrong about you. You are exactly what I needed in my life.

Now, I am fairly sure I can never get by without you again.

Told you…

It’s not all about us

Published on October 15, 2012October 15, 2012 by beatingcowdens3 Comments

And this is how the day started. With thoughts of Friday. Never a good way to start the week. I am not one to try to wish my life away, but is it so wrong if I prefer days with my family over anything else in the world?

But, we got it together and got out of the house on time.

Waiting for Meghan to get on the bus, a car doing about 65 speeds down our street. As I refrain from the words I want to yell, I quickly say a prayer to myself – that his stupidity and selfishness doesn’t bring harm to anyone else. I am always appalled – and I don’t care how late you are – by the callous disregard for human life it takes to speed past a school bus. UGH!

Pretty much that sums up how the day continued. There is a sense of urgency in everyone it seems – except about what really matters.

Now I don’t claim to have it all together all the time. And I don’t claim to be free of frustration. Nor do I deny that the ,”Why Me?” bug does bite us all here sometimes.

But, I am still amazed by people who are so narrow-minded that they can’t see the world from someone else’s point of view. I am still deeply troubled by people who won’t take a minute to try to put themself in someone else’s shoes. And I am horrified by those so self – absorbed that they speed past school buses, and generally have little regard for human life.

Maybe that’s it. Maybe I feel like too many people don’t realize how precious life is.

I don’t mean it as a morbid thought – but it really is true. I look at my grandparents, still married – 67 years later at 92 and 93, and they always kiss each other goodbye when they go out. I would hope they will be with us forever, but reality is what reality is, and they take a moment to express their love – often. So many people could learn life lessons from my grandparents. They are role models to be emulated in so many ways.

_DSC0072 — Ist Holy Communion 2011, with GiGi and Pop

It shouldn’t take a rare disease. Cowden’s Syndrome or any other are not prerequisites for compassion. You shouldn’t need to have cancer, or multiple surgeries, or scary benign tumors, or to live in fear of any of the above, before you realize the value of life.

We are in a waiting period here. No major new doctor news. The headaches Meghan was suffering with have subsided, but I still need to get a neurology consult together for her. The joint pain is returning, slowly, one spot at a time. It is manageable still, but the requests for supplemental pain medicine are starting to take place at least 3 times a week. Hoping that the 100mg of Celebrex will be enough to keep her comfortable, maybe until they find the reason for her pain. We go to the eye doctor in 2 weeks. The cardiologist is the beginning of December. He will hopefully tell us that the one too many prescriptions required to keep my little love functional are not harming her heart. Then – on the 27th of December – its on to the endocrinologist to check those thyroid nodules. That same week we will sneak in an MRI of my spleen (which, I am still KEEPING btw..) But, for now we are in a holding pattern and it is a good place to be.

Of course, being in a holding pattern gives my girl time to think. While we wait word on the necklace from the Global Genes Project,

she is already planning our next fund-raising adventure. I am currently on the hunt for denim ribbon so she can outfiit her school in denim ribbons for “Rare Disease Day,” February 28th. And, with a few whispers in her ear from a special third grade teacher, she has begun to ask if we can “pull off a 5k run” for the Global Genes Project.

So, I put a few feelers out. We will keep you posted.

I will be practicing looking at the world through the bright eyes of my child. She sees a lull in doctors as an opportunity to spend time helping others. There has to be a bunch of lessons there.

Take a minute to breathe. Time passes so quickly. Hug a loved one. Look at the world through someone else’s eyes.

I have always known these things on some level – but Cowden’s Syndrome has brought them to the forefront of who I am.

The New Normal

Published on September 22, 2012September 22, 2012 by beatingcowdens3 Comments

Ok. So that normal was short-lived. Glad I enjoyed it while it lasted.

I am trying the “don’t worry” thing. I really am. Truth be told. I stink at it. It’s true. I try and try, but in the end – epic fail.

We finished the antibiotics Tuesday from the hospital/fever/headache thing 2 weeks ago. She was on the mend, so I thought.

I know our schedule has been busy. Too busy for her. Too many things to do, every day leads to exhaustion. My body struggles with exhaustion, but hers just can’t cope.

So this morning we went for the follow-up blood work. The one to make sure the White Blood Cells and platelets came back to normal. The we headed to Queens to visit my in-laws. Two dogs, Meghan, Felix and I.

I the middle of a nice visit I noticed her resting her head on the arm of the chair. Then, she asked for food. She told me she wasn’t feeling too good so she must be hungry. We fed her. Then it all started to crash and burn.

She loves her baby cousin Connor. But, she started backing away, not wanting to get too close to him. Then, there was the red line across the eye. Finally, “Daddy will you rub my head?”

And from there it all went downhill. A cold cloth and Daddy’s magic fingers did little to relieve the pain. In about 15 minutes time we were back on the Belt Parkway heading home.

My mind was racing. She slept for a bit in the car, and I just kept trying to figure out a way that this could make sense. Not even just to me, but to someone – anyone.

The last time we were in for headaches the pediatrician told me to get a neurologist consult. Well I am working on it tonight. God and the power of the internet have me linked up with some Cowden’s patents. The goal is to find a pediatric neurologist who is competent and already has heard of Cowden’s.

That is of course if the immune system stuff is even Cowden’s related. Then again at this point I am going under the theory that all this is related in some way.

Settled into bed with Advil and a 102 fever at 7pm. It promises to be a long night. I will decide on a neurologist and have a few numbers ready to call during my lunch on Monday. Priority.

We will see the ped at 3:30 Monday, and hopefully not before.

Worry -it’s what’s for dinner.

Maybe I should stop looking for the old normal. It happens so infrequently anyway. Maybe it is all about the new normal.