Finding my “Happy Thought”

It was a few months ago.  I can’t quite recall the date.  It wasn’t my finest hour. (or day, or days…)

I was grumpy.  Worried.  Angry about the struggles my girl was being forced to endure.  Twisted about a future of doctors appointments and surgeries.

I had noticed she seemed extra down, and I took it as my cue to worry harder.

At some point, I broke down, expecting a clear answer to the question, “What’s wrong?” so I could continue the business of worrying some more, and searching for answers.

But the answer wasn’t even close to what I expected.

“Mom, you need to find a “Happy Thought” because you being like this all the time is really affecting me.”

Neverland happy thoughts

Um, ouch.  Wow.  And she sure told me.

She wasn’t being disrespectful in the least.  We have worked on honest speech and clear language, for survival – and to help us prep for the teen years.  She was doing exactly what I asked of her.  She was telling me what she was thinking.  And she was right.

Years of parenting a chronically ill and allergic child have left me in a permanent hyper-vigilant state.  The “other shoe”  has been known to drop without warning, and there is a constant need to search, study, learn, and discover whatever I can about whatever is plaguing my girl.  I am her advocate.  I am her voice.  We have between us undergone at least 17 surgeries in the last 11 years.  That doesn’t include countless hospital stays, tests and procedures.  There is always a pile to contend with, whether its bills to fight or file, prescriptions to order, reports to hunt down or appointments to make.  Life is very busy.

Neverland-HOOK

There was a time I used to walk for fun.  Hours on end with my music in my ears.  I would walk for miles.  I would walk everywhere.  There was a time I would read for fun.  Not medical books.  Just leisurely reading.  I used to watch “Law and Order.”

Now between working full-time, parenting full-time, chauffeuring to appointments, trying to make swim practice, keeping food in the house, keeping some semblance of order, including clean laundry, clean curtains, and clean cabinets – it was easy to get swallowed up by obligation and forget the joy in my life.

To be quite honest with you, there isn’t much I would change.  Do I sometimes miss those long carefree walks?  Definitely.  But, would I for one second trade one bit of my beautiful, tenacious, funny, stubborn, intelligent little girl?  Not a chance.

Hook movie

We watched “Hook” a few months back.  It was a rare occasion when I sat to watch a movie.  It is one of my favorites.  And for those of you who might not be familiar, it’s a “Peter Pan” spin off where Peter ended up all grown up – a lawyer.  He forgot his magical youth, and the story takes him back to Neverland to find it again.

I am sure this is where she got her admonition for me to find my “happy thought,” as Peter needed his to remember how to fly in order to beat Captain Hook.

I thought and I thought, long after she had said the words.  I was tempted to compare myself to other adults, and justify my grumpiness.  But I resisted the urge.  These words weren’t spoken to another adult.  They were spoken to me.  And what a gift she had given me.

peter-pan-best-quotes-sayings-faith-trust-good

Transformations don’t happen over night, but I have forced myself to become aware of the things that give me pleasure.

I love to write.  And so I have been trying to give more attention to my blog.  Therapy on a keyboard.

I have taken my feet instead of the car wherever I can, and wherever time allows.  I can’t walk for hours, but I can appreciate the short walks and relish them more.

I am realizing that a happy Mom is some of the best help I can give.  I won’t know all the answers.  I can only give her the same honesty I ask of her, and I can only do my best.

And while we focus on being positive, and its something I ask of her all the time – it’s not fair to ask it and not model it.

So we are all a work in progress.

And when I really soul search for what makes me happy, my pleasure really lies in seeing other people happy.

My other passion, my other therapy, is my Isagenix.  I fell into this company 2 years ago when my husband was in need of fast, significant weight loss.  For a year I bought products for him diligently.  He maintained the 50 pound weight loss he attained in the first 3 months, and now, 2 years later is working on “the last 20.”

www.meghanleigh8903.isagenix.com
http://www.meghanleigh8903.isagenix.com

 

I watched him for the first time in our marriage lose weight to keep it off.  I watched him gain energy, and generally feel better.

And I did what any Mom would do.  I researched – for Meghan.

And as I read and read and looked at articles, and the science behind the program, I heard the familiar musings that my trusted alternative medicine doctor had been sharing with us for years.  The same ones that helped us transform Meghan from “sickly” to chronically ill.  Several major steps up.  Trust me.

And I started to give my girl shakes full of protein, and nutrients, and she felt better, and better.  And soon she was asking me for more.  Brain food.

But it wasn’t until May of last year, a full 11 months after I had been giving the products to the two people I love most in the whole world, that people started asking me.  And then I couldn’t stop talking about the amazing things I had seen in my house.  And soon I had 5 friends all feeling great as well.  I was giddy.

I was now making money for helping people eat well.  Amazing to me.  I started to attend training, and listen in on conference calls.  I was no longer scared of “Multi-Level Marketing.”  I became educated about the systems and the generous compensation.

And one day, as my family sometimes does, I got called out again.  This time it was my husband.

I had lost a lot of weight – mostly due to stress.  I had dropped several sizes and was scrounging for clothes.  “YOU look sick,” my husband said.  “Drink a shake.”  And I did.

www.meghanleigh8903.isagenix.com

And it all came together for me.  I am down another size since then.  I have begun walking more.  I weigh what I weighed junior year of High School and I don’t intend to ever look back.  I am able to endure more stress, with greater ease.  I have stopped all diet soda.  I drink green tea and water.  I don’t snack much.  I eat better than I ever have in my life, and it’s easier than ever before.  The nutrients I get between that AM shake and my lunch time bar are more than I was getting in days with my old lifestyle.

I get happy when other people are happy.  I get pleasure watching as people remember what it’s like to feel good again.  I enjoy sharing stories, and telling people about a company that I feel strongly “got it all right.”  And they pay me too!

I am constantly telling Meghan that Cowden’s Syndrome does not define us.  But, in fairness, actions speak louder than words.

It’s been months since I was told to find my “Happy Thought,” and I hope I never forget that day.  While we still have our ups and downs it serves as a reminder for me that I am no good to those I love unless I find happiness myself.

Meghan and Felix – they will always be my happiest thoughts.

But I love my family, and God, and exercise, and nutrition, and cool breezes and music, and flying birds, and summer…

I strongly encourage you to find your “Happy Thought.”  It’s tough to start looking when a 10-year-old calls you out.

Loving my heart - outside my body- my biggest happy thought.
Loving my heart – outside my body- my biggest happy thought.

Portrait of Courage

You-Are-What-You-Think1

We have a short window of time from the point we meet someone to make an impression on them.

Think about it.  It happens all the time.  You pass by countless people, on line, in the grocery store, the receptionist at the doctor’s office…  And often, within moments you either remember a rude interaction, or you forget that they even existed.  The brain has to protect itself to some extent.  We can’t remember everyone.

But then there are some people you can’t forget.

I met her in the jewelry store a few months back.  I was buying a bracelet for my girl on a particularly tough day.  We struck up an easy conversation.  She was young, bright, and articulate.  She was friendly. She asked about my daughter and I shared.  I explained Cowden’s Syndrome and some of our most recent endeavors.  Then she nonchalantly told me she was a cancer survivor.  Melanoma she told me.  She was 22.  She told me she planned to be a teacher.  I imagine she will be a great one when it’s time.  At some point I brought up our trip to Disney, and how it might be time to take a break, and save some money.  She told me – wise beyond her years – that the bills will always be there.  Go.  Enjoy.

hope and spoon

Wednesday night I went into the jewelry store again.  I struck up an easy conversation with another employee.  I wanted to get a necklace repaired for Meghan.  It had a “hope” ribbon and a spoon.  She asked about it and I explained again about Cowden’s Syndrome, and the Spoon Theory.  When she brought me the necklace she wouldn’t take any money.  Instead, she offered me a “pay it forward” opportunity.  She showed me a “gofundme” page on her iphone.  She explained that this young girl, now 24, was battling stage 4 malignant melanoma, and if I felt so inclined, I could contribute there.

My heart began to race.  I recognized this girl.  She was the one, the cancer survivor who had helped me months prior.  I asked a million questions, rapid fire.  The kind woman answered them.  I was stunned.  A melanoma survivor, she found a lump a few months ago, which led to a CT and PET scan, and the determination that the melanoma had spread.  There will be treatment.  She is tough.  She will fight.

24 years old.

My sister is 25.  My brother is 25.  My cousins are right about that age.  They are all at various points of setting up their lives, not fighting for them.

She could have been anyone.  This girl in the jewelry store.  But she was dynamic.  Because apparently that is who she is.  She is the person that sticks with you.

Read her story here. http://www.silive.com/sports/index.ssf/2014/06/college_of_staten_island_to_ho.html#incart_river

And if you are so inclined, do what you can to help.

be the change

That is a conversation Meghan and I have all the time.

Life is not easy.  It is often unfair.  Frequently she feels like crap, and always she seems to hurt.

Yet, I tell her all the time, you have a short window where people will make a judgement about you.  It’s not fair either, but it’s true.

And when you live your life chronically ill and/or in pain, you may sometimes feel like you have to lie.

But I am helping her find the balance.  Ways that she can still be honest about what she’s going through, and say what she means, with an upbeat delivery.

i am one

Meghan has been blessed with a beautiful elementary school experience that spanned  6 years and 2 schools.  And although we elected to change schools at the very end of fourth grade, she can reflect and see the positive experiences gained in both places.  It seems everything happened as it should.

And in third grade, one of the roughest years of her life, she was met with one of the most compassionate women I will ever know.  A gifted teacher who cared so much more about the child than the curriculum.  And this year, when there was loss, deep loss, and surgery, and more major struggles there were several excellent women in her path as educators, and sources of strength.  And again, there was one with a sick child of her own, who just “got it” from the beginning.  My gratitude knows no limits.

to teach

Today we sat for a beautiful moving up ceremony.  Everything was perfect.  The length and content of the ceremony carried out through the careful precision of true professionals.  The children were calm and well-behaved.  Everything was smooth.  They all made it look easy, but I know all too well that its not.

Thirty years ago I walked across that same stage.  Today a lot of things came full circle, and after 17 plus years of teaching in my school, I sat in the seat of a parent, and I could not have been more proud.

She received two medals for school service, and she was beaming.  Then they called her name for the “Portrait in Courage” Award.  And the tears flowed.  Mine – not hers.  So touched by the time it took to match my child with an award that was a perfect fit.

See I always knew she had courage.  And I think most people who meet her would never deny it.  But lately, struggling with the pain, there have been some dark days.

couraqge 1

So we talk alot.  And I hope and pray that my words get through.

I tell her what a gift she has, that people view her has positive, and courageous.  I tell her that just because I happened to agree doesn’t mean the responsibility ends there.  When people view you this way, they look to you.  They feed off of your energy.  You inspire them to be better people.

It doesn’t mean you have to be positive all the time, because we all have our days – but it means most of your work has to be upbeat.

Today she hurt.  As she always does.  And I could see it.  But she never said it.  Tonight I felt her knee, and that all too familiar pulsing seems to be finding its way back.  She asks me not to hug her.  Especially in the morning – because my touch hurts.  There are dark circles under her eyes.  But we went out all day today, as a family.  And she was amazing.

She held that plaque in her purse.  She wore her medals.  She smiled.  She looked people in the eye.  She spoke.  She lit up rooms.

Danielle, from the beginning of my story, has never met Meghan.  Yet to me there are so many similarities.  I told Meghan all about her.  She gets it.  She gets a lot of things.  And as I struggle to help her find the gentle balance at 10 years old, of being positive and honest – I see role models for her in our small community.

“Portrait of Courage” indeed.  As her teacher said, she has endured more in her first decade of life than most, and is a force to be reckoned with.

meg awards

For Meghan, for Danielle, and for the others who we cross paths with every day – you inspire.  You lead by example.  You ARE changing the world.

Thank you.

Groundhog Day

“Groundhog Day” – who doesn’t remember the movie?  There have been plenty of days I have thought of it.  I may need to watch it again soon.

Groundhog_Day_(movie_poster)

Pediatric Endocrinology is a ridiculously small sub specialty.

There is this web of interconnections, and all sorts of people who have lost sight of the patient.

web

Ultimately I may need to head out-of-state to try to get a clean opinion.  But, I have to take that and so many other things one step at a time.

But, after the travesty on Thursday, I was left with little choice but to keep me appointment with the surgeon at our current hospital.

You remember the surgeon?

He’s the one who did a great job on the surgery.  The one who said, when we went for the follow-up, that he only needed to see her ever again if she felt anything in her neck.  And when she did feel something in her neck I had to jump through 12 hoops to convince him he should see her.  And then when he saw her, he proclaimed the lump a salivary gland and told us to return “one more time” in a few weeks.

But then there was that horrendous week in the hospital.  And while she was being treated for gastritis, a hematologist felt her neck and said, “It’s a lymph node.”  So they sent her for a sonogram which said it was a lymph node.

So when we went back to see the surgeon and brought him the sonogram report he got annoyed and ordered his own ultrasound, which we got to wait 3 hours for.  And then he called me to tell me everything was fine, even after the 45 minute exam where the tech measured the lymph node in her neck.  So we were good to part ways until I asked for a copy of that report too.

confused

And 10 minutes later my cell phone rang telling me doctor “I am sure it’s fine, but just in case,” wanted to see her again.  So after some haggling we arranged for June 16th at 1.  Which was ok.  Until they called me Friday to tell me I could come in at 9:30 or 10:45.  “How about 1, like you said originally?”

So the appointment was set for 1, and I punched out of work at 12.  We got to the hospital at exactly 1 (a 20 mile drive) after some typical traffic, and a near miss of a three car accident in front of us on the highway (thank you angels) on line for the parking garage.  I called up to let them know we’d be a few minutes.  And we sat.  And we sat  And we sat.

Finally we began to inch forward just a bit.  Then there was just one car in front of me.

And he was not paying a bit of attention, as a large black SUV cut right into the front of the line.

Now at times like this I try to focus.  Maybe there was a medical emergency. Maybe… Maybe…

So as much as I wanted to get out of my car screaming, I held my composure and talked about all the reasons they might have done that.  Until a hospital employee, likely late for work, surfaced as the driver.  He left his car across the sidewalk, took the ticket from the attendant and raced into the hospital.

It was 1:35.

And then I noticed some scurrying.

I thought the car was stuck.

It turns out the self-important line cutter had taken his keys- blocking the entrance and causing the line of 20 cars behind me to continue to grow.

The car was booted and moved.

We got to the appointment around 2.

As usual...
As usual…

The doctor spoke to Meghan.  He asked her how she was doing.  She told him about her pain.  And about her throat clearing.  And about how tired she is.  She mentioned working hard to get so swim practice.

I don’t think he heard a word.

He felt her neck and proudly proclaimed he felt nothing.  By now I was so tired of this I just wanted to get out.  I figured we were done.  I was glad he could feel nothing.  If only I trusted him.  Truth be told, I haven’t put a hand on her neck in 4 weeks.  There is just no point.

“I want to see her at the end of the summer.”

WHAT?????????????????????????????????????????????????????????????????????????????????????????????????????????????????

3 visits ago he never wanted to see her again.  Now he has ultrasound and 2 visits at which he told me she was fine.  Let it go.  Unless of course, he just doesn’t quite trust himself…

“I’m glad she’s feeling so well.”

EXCUSE ME??????????  Did you just see MY kid?  Because MY KID is incredibly polite, and often very positive.  She is articulate and bright, but she will NEVER tell you she feels WELL.  She doesn’t believe in lying.

Some days this is like a bad movie. Or a dream where your finger is stuck in the door and it keeps closing over, and over, and over again.

4740897520_door_jam_xlarge

August 18th.

Damn.

So much for a month without doctors.

When do you, as the Mom, put an end to it?  Knowing that any “miss” falls right on you, it’s so hard to defy their recommendations, even when their competence can be questioned.

Rheumatology on the 30th.  GI on July 2nd, and Pediatric Endocrinology AGAIN on July 3rd.  And that’s just the first week.

I guess I better plan something fun for the 1st.  Something worthy of a stepping stone for that bridge…

Her entire right side hurts to the touch tonight.  Every natural pain remedy I research has something her reflux doesn’t allow.

She fell asleep tonight reading her Bible.  Our Pastor sent her a long letter with some great verses of comfort.  She hasn’t stopped rereading it.

Sigh…

Two hours to get in.  Two hours to get home.  Less than 30 minutes on the floor of the hospital.

“This is getting old Mom.”  Wise kid.

“‘Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise” – Laura Story

Snow Boots

The winter boots are still in the closet.

It’s June 12th.

Actually Meghan’s room has a basket of winter boots that are not only off-season, but are too small for her.

It’s June 12th, and that is definitely a new record for me.

june12

In my old life clothes got changed systematically in April, and early October.  Jackets got washed, shoes got put away.

That was my old life.  I don’t remember it much.

I don’t really have a big closet.  The spring shoes are upstairs in the hallway.  All over the floor.  I’ve been getting one pair at a time as I need them, but if I don’t hurry and make the switch soon winter shoes will take over my bedroom floor.

Thankfully, Mother Nature seems confused about the season.  That is buying me some time.

Mother-Nature

In my old life, nothing was really on the floor – ever.

We went to the doctor today.  Shocking news really, I know.

We went to the doctor today in hopes of replacing the endocrinologist with someone more open-minded, and “outside the box.”

EPIC FAIL.

What we got instead was a closed box, closed-minded,”I won’t take on your kid, so stay where you are” doctor, in a really bad suit.  (And I’m not much about fashion – so you know it was a REALLY bad suit.)

I had lots of time to look at her, and the suit while I used my hand to keep my mouth from spilling out my actual thoughts and embarrassing my daughter.

I brought the 3 page synopsis of tests, hospitalizations, and medications.

I brought the 3 INCH binder full of lab tests and pathology reports.

I brought the CD of the neck sonogram.

She glanced at her most recent blood work.  She told me her TSH was too high.  She told me she needed more Synthroid.  She told me her current team was just fine.  Then she told me twice they were better suited to treat a Cowden’s Syndrome patient than she.  Feel like a leper much?

I asked all sorts of questions.  I asked about T3, and potential problems with synthetic absorption.  I reminded her that in addition to PTEN she has an MTHFR mutation which impacts her ability to process B12.  I asked if there could be anything else she has trouble processing. (Hint Hint… synthetic thyroid hormone?)

“You’re very smart,” she tells me.  “You know a lot,” she says.  Yet, she deflects my questions like a goalie with a hockey puck.

Hockey-Stick-and-Puck-Photographic-Print-C11950881

News flash.  I don’t need stroking – just answers.

But I watch my tongue.  And I watch my tone, because my daughter is watching my every move, my body language, my attitude.  She is using my response to gauge whether she needs to be uptight.

I asked what was the upper limit for synthroid.  I was told there was none.  I was told that the dose would just continue to be increased.  I was told she would likely reach .200 mcg.  I expressed concern.  I was told not to worry.  The body only absorbs a percentage of the synthetics.  Um, that would be the point of my worry.  She doesn’t have a good history of secreting junk.

I got a lesson on the pituitary and the up and down regulation of TSH.  I was told when to dose the medicine.  I reminded her I have been on thyroid replacement for 27 years.

She asked me if she had answered all my questions.  In my old life I might have politely said, “yes.”  But, this is not my old life.  I smiled, shook her hand, and said “No, actually you didn’t, but I don’t think you know the answers.”  Then we left.

In my old life things were neater, and more orderly in every aspect.  Sometimes I miss the order.  But not for long.  There is nothing orderly about this kid, except her behavior (98% of the time,) and I am learning to embrace the chaos.

She woke this morning feeling like real crap.  Exhausted from swim practice (she made it almost through) and fifth grade trip yesterday.  She hurts.  She is mellow.  She has fun with the kids, but she’s not herself.

Maybe it will just take time, but hours and weeks and months of childhood seem to be ticking away.

I pushed her today to start making dates with friends for the summer.  Her friend’s parents must think I am weird.

It’s as important, or MORE important to plan pay time as it is to plan doctor’s appointments – for so many reasons.  And since we have so many appointments, I want to start with the friend time – NOW.

We live in the middle of New York City.  One would think finding pediatric endocrinology in the mood for a challenge would be much simpler than this.  Instead I am left to return to the surgeon on Monday, so he can validate himself by telling me he doesn’t feel anything in her neck.  And then, back to see the resident of her endocrinologist in July.  (The actual doctor takes off February, July and August – so he has yet to see her since the surgery.)

Life is not ours to plan.  But, we have to try to schedule the fun stuff before the days get away.

We RSVP while holding our breath.

There is more “One day at a time…” than I have ever known.

one day at a time

Maybe there will be some time to get those snow boots away.  In the mean time, if you do stop by- don’t judge the hallway.  Or the closet.  Or the dog fur.

I took a walk yesterday, and another one today.  I listened to music.  It’s a slow process, but I am working on my emotional health.

It seems to be the only thing I can control.

I am working on those foundation stones for Meghan’s bridge.

And in the mean time, if you happen to need any snow boots – I can get them for you in a hurry.  I know exactly where they are.

snow boots2

 

 

Building Bridges…

It’s been a while since I’ve written.  If I have my way I’m about to get so focused that you’ll get tired of hearing from me.

Life has become a bit overwhelming.  And some days all of this, this whole chronic illness thing, is just too much to handle.

There are days the path looks like this.

broken bridgeThere are days when it is easy to wonder, “What now?”  or, “What next?”

But that is the very mindset that can find us in a heap of trouble.

So we are trying to work on shifting our focus.  Instead of panicking when the bottom feels like it’s falling out, we are working on reinforcing the structure.

We all need a bridge, a support system of sorts.

With two members of the house who are the 1 in 200,000 unique that comes with having a RARE Disease like Cowden’s Syndrome, it’s so easy to let the illness try to creep into your identity.

I don’t talk too much about me.  Mostly because as any Mom, my needs are second to those of my girl.  But, I too get overwhelmed.  And when I feel like Cowden’s is trying to choke me out – it’s time to pause and reclaim.

I am more than the paperwork and medical records.  I am more than the bills and prescriptions.  I am more than the scheduling and the appointments.  I am more than the mastectomy scars.  I am more than the synthetic thyroid hormone.

I am a mom.

hope stone

I am a wife.

hope stone

I am a friend.

hope stone

I am a Christian.

hope stone

I am a teacher.

hope stone

 I like music.  I like reading John Grisham. I enjoy Law and Order.  I like to laugh.  I CAN’T get by without my Isagenix, and my Ionix.  I appreciate photography, and I really, really like to sleep.

And with each piece of my identity, the pieces of my foundation get stronger.

 

There are things I have to do as a person with Cowden’s Syndrome.  There are things I have to endure.  There are an unnerving amount of tests and appointments and the constant nagging notion that things may spin out on a dime.  But if I am honest – isn’t that what life really is – for everyone?  While the issues may not always be medical, the reality is that despite our best efforts, we have no control.  So, we do “the best we can with what we have where we are.”

And as I get my foundation in place.  As my stones are strategically placed – so they can be stepping stones along the way if needed, I can work on helping Meghan build her bridge.

wooden bridge

I figure once I have it together enough that I can catch her if she falls… she’s free to establish her own pace, and find her own way.

We will forever do outreach work.  We will forever share our story.  We will forever create fund-raising opportunities for research.  That will be part of our lives.  Cowden’s Syndrome will be part of our lives.  But it will not BE our lives.

My daughter has seen more in 10 and a half years than most adults see in a life time.  She has been medically poked, prodded, and cut.  She has been in and out of hospitals.  She has seen doctors hired and fired.  She has been listened to and she has been ignored.  She has had arteries ablated, and a body parts removed.  She has vomited pure bile from a stomach torn apart from pain medicine.  And she has pushed each day through that pain.  She tries to be like the other fifth graders, but she struggles.  She struggles to be understood and to fit in.

But, from my stones, my own developing identity,  I can see her clearly.  Perhaps more clearly than she sees herself some days.

I don’t profess to know all things.  She’s a bright preteen.  There are things I’ll never know, and that in and of itself is OK, and normal, and even healthy.

What I see when I look at Meghan is not Cowden’s Syndrome.

I see a beautiful smile.  I see a kind heart.  I see compassion.  I see love.  I see competitiveness.  I see a swimmer.  I see a singer.  I see a reader.  I see someone who loves to play hard, and relax just as hard.  I see raw determination.  I see high standards.  I see someone, a young woman who makes me proud to be her mom.

This summer we are going to work on building.  I want to be able to provide her stepping-stones.  And then I want to help her build her bridge, with a healthy mix of guidance and independence.

I want her to see she has Cowden’s Syndrome, but it does not have her.  It is an inconvenient part of our lives – but not our entire lives.

We are going to make memories.  We are going to create situations that have nothing to do with doctors or hospitals.  We are going to laugh and play.  We are going to continue to “Live Deliberately.”

And we are going to write it down.  It sounds so silly to think that we have to write down having time for fun, but we do – for now.  Maybe one day it will become so automatic that life’s adventures will become common, and our medical world will fit in the empty spaces.

It’s not going to happen all at once.  There will be days we have to remind each other.  But, we will get there.

And along the way we will slowly build the team of medical professionals who look at us as people, and keep our best interests at the forefront of their practice.

Because as we become empowered, we will be rid of the others.  Positive influences only.  We deserve that.

She made swim practice tonight.  No small feat.

The pain – evident, but managed.

applause

Endocrinology consult Thursday.

Hopeful.

A balanced thyroid certainly would help a few (dozen) things…