Miles to Go…

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September is a marathon of sorts.  Although all the training in the world can never quite prepare you for the twists and turns needed to navigate it through to completion.

September is establishing new routines, in my own classroom, and in our lives.  September is learning new students, and new teachers.

Each year, it is about pushing our bodies farther than we have ever been able to.  It is not just about surgical recoveries, or broken toes, it is about swim.  So much swim.  It’s about swim before sun-up, and afternoons too.  It is about drama and singing and doctors in between.  It’s about finding the inner strength to press on.

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It’s about balancing it all.  Work, school, after school, meetings, and the like.  It’s about stopping to find the beauty, and the sunrise, and the simple pleasures along the way.

This life, this chronically ill life is lonely.  I’m not going to lie, or even try to sugar coat it.  It is lonely.  But, we three in this house embrace and press on.  Because, really, there is no alternative.

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There is no fault, no anger, no resentment.  Reality is that every moment is spent using all the “spoons” we have to get through.  At this moment there are no extras.  Family and friends who comprehend will still be there with open arms when there is a “spoon” or two to spare.  The rest will have found their own way, and that is a loss we will have to take in stride.

Everyone has something.  All lives are busy.  All lives have joy, and angst.  All we can do is take what is in front of us and do the best we can with what we have where we are.

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The worry in my heart runs deep.  There is reason for it, yet I battle it all the time.  It can not, nor will it, define me, or our lives.  Regardless, it lingers always, lurking in the shadows.

My girl continues to amaze and impress with wisdom beyond her years.

For her birthday Meghan had a very specific request this year.  One of her gifts was, “The Unabridged Poetry of Robert Frost.”  I was familiar only with one of his most famous poems.  Meghan read this book fervently for most of August.  I think I understand why now.

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Lab work tomorrow to keep those thyroid hormones in check.  We need our strength to remain

#beatingcowdens

Type A, and Then Some…

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.)

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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.

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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.

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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…

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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.

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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.

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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.

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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)

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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.

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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!

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Yep, it’s broken. But, not me… Nope, not me!

Friday, I tripped over something in my hallway.  I wasn’t looking.  I ended up against the wall, screaming all sorts of words that I am sure were inappropriate for my daughter to hear.  But, for about 60 seconds I let them go.  I screamed while the pain was too intense for me to breathe.  I screamed about my stupidity.  I screamed with certainty that the foot, or at least the little toe, was broken.  Because it was that kind of pain.  The kind that makes you sure.

Friday 9/2
                                   Friday 9/2

After some ice, I tried my best to jam it into a sneaker.  Less than 2 weeks post op from the implant repair, I was not interested in losing my ability to walk to relieve stress.  However, my efforts were in vain.  That toe wasn’t even close to making it into my sneaker.  No way.  No how.

I took Meghan to swim practice, and called my husband to meet me.  I figured when he tagged in I could go for an x-ray.  Just on the off-chance it was more than the toe.  Because every memory I had was of “you can’t do anything for a broken toe,”  I was hoping…

I kept busy in the hall above the pool.  I had my laptop and all I needed to continue to pepper NYU with what I really feel are immoral and unethical billing practices.  Along with 2 weeks worth of a records retrieval nightmare, where I could not gain access to Meghan’s lab work from earlier in the month while her doctors were on vacation, and the online system was a classic, epic failure.

Definitely feeling the adventure!
           Definitely feeling the adventure!

I propped the foot to the side, and used the hotspot on my phone to send the 14 page document I had compiled off to the CEO of NYU and the head of Patient Relations.  Then I copied one of her doctors, a lovely woman who I doubt has any clue how these things are done.

When I finished that I called on a bill I had just received.  Same doctor for Meghan.  Two dates of service.  No evidence of my secondary carrier billed.  My $30 copay times 2 requested as payment.  I asked, innocently why the secondary isn’t mentioned.  I was told they didn’t pay.  Didn’t acknowledge the claim.

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I made my notes, to follow-up.  I did.  Amazing what technology will do me.  This facility was paid THREE times for the January visit alone.  A visit totalling about 20 minutes generously.  They COLLECTED over $1,000 from the three separate claims.  And they were STILL hitting me for money.  My older, weaker self would have paid.  Just to shut them up.  I’m not that person anymore.  I am strong.  I am tough.  I am morally and ethically strong-minded.  I will pay what I owe.  The rest I can do with as I decide, not them.

They are sneaky.  They prey on those who can not figure this out.  I am developing a spread sheet I will have to enter all data into to stay on top.  But, I will.  And when I have enough I will expose them.  I will do it for the people who can’t.  Because some things are just flat out wrong.

I thought of all this as I found my way in the x-Ray machine Friday evening.  The tech was sweet.  She was kind.  We laughed.  Without saying anything, she said it all.  “I think you might want this CD.  Why don’t you just wait for it?”  Sure…

An elevator ride up I was informed of a displaced fracture of my right small toe.  They can’t be sure if it’ll need to be properly set.  I need to wait about a week.  Until oh, I don’t know, the FIRST DAY OF SCHOOL?

Saturday 9/3 - I did manage a polish change!
    Saturday 9/3 – I did manage a polish change!

I spent Saturday morning in vocal therapy.  Apparently she’s waiting for confirmation that I don’t actualy have nodules, but rather some type of vascular lesion on the left vocal cord.  Tiny.  Benign.  Therapy the same.  Prognosis not quite as good in terms of self-resolution.

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Stitches sticking through the streri strips on my newest boobs, a boot on my right foot while I track down a doctor.  A voice that may work, or not…

School starts for teachers tomorrow.  A hot mess of me headed in to meet my schedule.

I am bent, bruised and strained.  My toe may even be broken.  But, not me.  I won’t be broken.  Ever.

It’s mind over matter in so many ways.  And this mind.  Well, it matters.  I’m all over it.  #beatingcowdens is not for the faint of heart, but we’ve got this.

For right now, with a little help from the Captain… 🙂

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