Contrast

I’ve never posted from my phone before…

This week we are in Disney World. It’s our 10th summer vacationing here, and we’re not tired of it yet.  Most importantly – neither is Meghan.

Disney has magic. There is laughter and singing and smiles. There are rides and shows. There is a lot of what this overtaxed family needs way more than one week a year, but we count our blessings and take what we can get.

Disney is also not without its reality checks. Seven knee surgeries have not been gentle. The orthodopedist at this point disallows walking distances greater than .5 mikes at a time. This is the week my girl spends becoming one with some of her greatest fears. For most of this week she is wheelchair bound.

She also brings her allergies, even to Disney. Which means- when I can I sneak out early to try and order her breakfast before everyone else arrives. If I get there 15 minutes early, usually she can eat with us. She brings allergies, that are always on her mind as she walks past kids with drippy ice cream treats, as I sheepishly hand her things I packed. This is the week where everyone else’s desert looks delectable and hers is sometimes packaged cookies.

She brings her determination, and her inner strength, as she worked the lap pool before 8 this morning. She wheels herself when she can, determined to prepare for swim season.

This is a week of contrast. Of hiding on benches and taking calls from doctors for things that won’t wait.  It’s also a week of sitting on that same bench hours later watching the most awesome fireworks show.

Contrast. Life is about contrast. 

I’m going to go have a drink while we watch the funniest entertainer. 


Tonight she’ll stretch her legs and walk. Short distance. Tomorrow. There will be more time in that chair.

Laughing. No matter where you are, life has to have a lot of laughing.

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

And with the week that was, so much of this post from last April rings true still. While I gather my thoughts, this will do…

beatingcowdens

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

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

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Local Newspaper Coverage

This is already all over for my local friends, but for anyone else who is interested, this article was written for our local newspaper. It will publish in print Monday, but is in the online paper today. Click the link below.

http://blog.silive.com/gracelyns_chronicles/2016/01/post_23.html#incart_river_mobile_home

 

JFRGflyer7

The War Ain’t Over Yet…

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….

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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.

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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.

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Hyper-vigilance

Hyper-vigilance.  Although Wikipedia is not my favorite source for all things – it defines this quite well.

Hyper-vigilance is an enhanced state of sensory sensitivity accompanied by an exaggerated intensity of behaviors whose purpose is to detect threats. Hyper-vigilance is also accompanied by a state of increased anxiety which can cause exhaustion.

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When we were first diagnosed, and I had a long conversation with a Mom who had been where I was many years before, she told me we would be OK, but we would need to be forever vigilant.  Understanding now, what I didn’t then, is that Cowden’s Syndrome requires more than vigilance, it necessitates hyper-vigilance.

The two are very different.  One is a state you may be in sometimes, when it is necessary.  The other is a place you never leave.  Ever.

I don’t compare illnesses, in the sense of one being, “better, harder, easier, more difficult, more painful…” than another.  That to me is silly.  I know LOTS of people who suffer on a regular basis.  I can’t say I would want to trade places with any of them.  And, I can only speak from my lens.

My lens is that of a mother, who is watching her child battle through a chronic (FOREVER) illness with potentially life-threatening, and definitely life-altering ramifications – while battling that same illness myself.

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I don’t view us as “sick” people.  As a matter of fact we are regularly called,” The healthiest looking sick people…”  But, we aren’t “well” either.  It gets complicated.  Quickly, and often.

Hyper-vigilance requires me to do everything I perceive is in my power to try to stave off the tumors and vascular anomalies looking to create havoc, chaos and confusion in our bodies.

Hyper-vigilance necessitates monitoring food intake.  Avoiding food allergens/sensitivities because they cause vomiting and severe GI distress.  That means NEVER leaving the house without food.  JUST IN CASE.  It also means spending weekends cooking so that “quick meals” come out of my freezer and not a drive through window.  It means providing the most intense nutritional products I can find to fuel a body that would otherwise be running on empty.  It means driving far and long to get the right food at the right stores.  It means making sure the sweet treats that are allowed are not full of dyes and preservatives because they compromise further a documented severely compromised immune system.

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Hyper-vigilance means watching the medication intake.  To make sure we don’t forget an antiviral.  Because when we do it sets off a tirade of events that are hard to bounce back from.  It means typing the list, and checking it over.  It means teaching her to know her medicine on sight.  It means avoiding everything we don’t need and willingly taking things like probiotics to help that fragile stomach.  It means knowing that when you have chronic viral infections they are ALWAYS waiting for an “in.”  It means leaving NOTHING to chance, and having spare pill cases in every bag with extra of everything, especially digestive enzymes.  It also means spending HOURS AND HOURS trying to make the mail order medication people get it right.  Which I sometimes think is just not ever going to happen.

Hyper-vigilance means scheduling the doctors.  All of them.  All the time.  It means making sure all the screenings, for all the ridiculous number of cancers we are at an increased risk of developing, are done on schedule.  It means often following up on those appointments, with imaging studies and more appointments.  And then repeating those “unclear” imaging studies, again and again.  It means getting blood work done, often.  Usually at least once every 4 weeks.  It means talking to the endocrinologist and problem solving with him when he admits “it doesn’t make sense” as you strive to help your girl at least feel better.  It involves medication adjustments.  Making sure it’s taken on an empty stomach, and every single day.  It means there is always a list nearby of who needs to be scheduled next.  It’s right alongside the pile of bills that have inevitably been messed up by someone, and now need receipts faxed and hours on the phone to be kept out of collection agencies.

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Hyper-vigilance is hearing the symptoms every day and trying not to panic.  When there is a headache, sharp and sudden, or a pain in the knee, or the back, or the shoulder, or the leg, and you know your kid is NOT a hypochondriac as some others would like to think, you have to listen, sort, and mentally file all of these.  Hyper-vigilance is keeping track of which ones repeat and which ones go away on their own.  Hyper-vigilance is being very aware, but never panicking.  It’s a fine line.

Hyper-vigilance is Physical Therapy.  As often as we can fit it in.  Because something always hurts.  When one foot is 2 sizes smaller than the other because the treatments for the AVM in the knee cut the blood flow to the foot, so the bone stopped growing, you end up “off sides”.  The hip, the shoulder, the knee.  They all hurt, and it won’t get better.  It will only get managed.  For as long as we can fit in the PT.

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Hyper-vigilance is also finding balance.  It’s also searching somewhere for “normal.”  It’s making 4 swim practices a week, often on raw nerve.  Because she wants to feel normal.  She wants to compete.  And let’s be truthful, she wants to win.  It’s about me never really leaving the grounds of the college 12 extra hours a week because we are always one step away, and sometimes a half-step from “just in case,” and “what if.”  It’s getting her to drama, because she’s skilled there.  And she fits in.  And the teacher is awesome, and the kids know her for who she is.  It’s about balancing the schoolwork, and doing her best, while teaching her not to beat herself up.  Too much stress is no good for anyone.  Especially when you have this random tumor growing condition that preys on extra stress.

Hyper-vigilance is remembering I have this “Cowden’s Syndrome” too.  It is making sure I am at my best so that she is at hers.  It’s remembering that I sport fake silicone boobs as a constant reminder that I’m not invincible and cancer found me.  It’s remembering they were worried enough to take the uterus and the ovaries too.  It is working hard, at my job, and my life, and showing her it can be done.  But it’s also about letting her know I get tired too.  Because in those moments she sees that she is normal.  And yesterday when I struggled to even walk up a flight of stairs, I saw the concern in her eyes.  And she picked up the vacuum.  And she helped.  It’s teaching her to take care of herself by some days letting her take care of me.

Hyper-vigilance is walking.  Me.  Walking 4-5 miles a day almost every day.  Because my bones are already crapping out.  After 30 years on thyroid pills and 3 years after a hysterectomy, at 41 I’ve been placed on warning.  It’s necessary for me to take good care of me.  To fuel my body properly.  To limit the junk in.  To respect this body because it’s already got a lot going against it.

Hyper-vigilance is making decisions in the moment.  It is having to say no, we can’t go.  It’s not being able to tell people in advance.  It takes away from advance planning, even the fun stuff.  Because life with chronic illness is day by day.  It makes me feel badly, often.  So sometimes I avoid making plans.  I don’t even like to volunteer for too much because I just don’t know whether things will be ok that morning.

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Hyper-vigilance can be very isolating.

It’s hard for some people to understand.  And I get it.  Because a few years ago it might have been hard for me to understand too.  It makes people uncomfortable that this thing we have is never going to get better.  People feel better when things can be fixed.  But it can’t.  We are not going to grow out of it.  It’s here.  It’s part of us.  Like the ‘elephant in the room.’  But, we understand other people’s problems too.  We get the myriad of health issues that surround us.  And we empathize.  And we don’t need to be sheltered from them.  As a matter of fact, we might like it is sometimes people shared their worries with us too.

Hyper-vigilance is exhausting.  And today I took a two-hour nap.  Because my throat started to hurt.  And my body was giving me all the warning signs that I had pushed a little too far.  I shortened the walk.  I stayed in mostly.

It’s like training.  For real life.  Because there is not an event at the end, that will finish with a medal and a sense of accomplishment, and a new goal. My forever goal will be to keep us healthy, and to keep the Cowden’s Syndrome at bay.  The only path to this end is hypervigilance.  And even then, just like in life, there are no guarantees.

We remain forever  Beatingcowdens!

Anticipation…

Funny how things creep into the mind.  Then there was this Heinz commercial from the 70s.

Anticipation – is making me wait…

Tomorrow we do it again.  Surgery 13.  Vascular malformation, left palm.

Hopefully it has kept a safe distance from the artery.

Hopefully it is smooth and easy.

But, we worry.  And it’s normal.  Just because you’re USED to something, doesn’t make it OK.

Anticipation…

We will rest, although I don’t expect much sleep.

Cowden’s Syndrome – I guess it’s here to stay!

I Just logged onto my blog and saw that it was my 3 year “Anniversary.” So I dug up my very first post from May 9, 2012…

beatingcowdens

So it was a really nice doctor – or two, who said in the summer of 2011, you have to take your daughter to a genetecist.  There are too many unconnected “dots” I was told.  Someone will be able to diagnose something.  But, having gone almost 8 years with her multiple surgeries, countless doctors appointments, and unexplainable ailments, I had my doubts.  I spoke for an hour with the genetic counselor before the visit.  I think it took the doctor all of 20 minutes to say, “It’s a PTEN mutation, most likely Cowden’s Syndrome.  We will test her today.  She will be positive, and you will be too mom.”

P – what?  Cowden’s Syndrome – What the hell?  How could he know that from looking at us?  Was I missing something – some kind of freaky attributes that made us so obvious?  I left more self conscious than curious, and…

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