Change- The Only Constant

Wild.  These last few weeks have been just that.

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

Meghan is in high school.

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

The medication leaves her more tired.

The thyroid being gone during these years was necessary torture.

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

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

The chiropractor readjusts about twice a month, sometimes more.

The backpack is heavy.  Everything throws off the stride.

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

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

There is no “typical” 14 year old girl.

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

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

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

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

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

The only thing constant is change.

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

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

Change is constant, but we remain

#beatingcowdens

through it all.

 

The Speed of Life

speed of life 2

I am always amazed by the speed of life.

I don’t know why at this point I’m not used to it yet.  But, as I sit here with my leg elevated recovering from a vein stripping on Thursday, I find it hard to imagine it hasn’t been quite a week since “Jeans for Rare Genes” took place.

Rare Disease Day Fundraiser

Acknowledgements have been sent by Email.  Some are waiting for the mail, and others will be delivered to the local businesses that supported us in the next few days.  We wanted everyone to know that what we considered a lofty goal of $10,000 to be donated to the PTEN Hamartoma Tumor Syndrome Foundation, and The Global Genes Project has been surpassed.  The checks are still being counted, and the final payment from eventbrite is due any moment.  But it looks like the total will clear $12,000 before we are through.  Not too shabby for the vision of a feisty 11-year-old who has already begun to make tentative plans for what we will do even better “next year.”

PTEN logo global genes logo

And as I’ve digested the success, and have processed the overwhelming pride of a mother, and expressed our gratitude to family and friends near and far, (like the Yokleys from Colorado!)  I’ve taken some time to reflect.  Standing before a room filled with 150 of our friends and family on a bitter cold February morning left my insides warm and toasty from the love surrounding us.

Life moves quickly.  For all of us for different reasons.  But, with this syndrome x2 life seems to be literally swallowed by doctors, and tests and surgeries, with every spare moment trying to shove “normal” into the cracks.  We miss stuff.  A lot.  We miss friends, and gatherings and social events, and celebrations, and ordinary get-togethers.  We are absent more than we are present.  Our friends and extended family are often neglected as immediate family has to occupy any moment that isn’t already full.  I don’t actually remember the last time we had friends for pizza, or a casual summer gathering on the deck by the pool.

And I think about the pure innocence and wisdom of Meghan and Connor, as they finally met.  Two friends from miles apart, with a life altering syndrome in common.  Two bright, funny kids who have seen more than their fair share.  Two kids who get compassion, and understanding, and life.  Two sets of parents, immediately at ease with each other because we understand.  And sometimes that’s all you need.  And if you missed the two articulate, wise beyond their years, kids talking to the local news – click here.

I think about Georgia, a world away in Australia, and how she and Meghan have hit it off in a way only girls who share such a bond ever could.  I think how wonderful it will be one day to get them together too.

And I think about Ashton, older than Meghan, but a girl on a mission all the same.  And I think of all she has to offer the world, as she endures her 14th procedure on a stubborn AV fistula in her brain this week.  I think about all the prayers we say, and all the questions Meghan asks.  And her Mom.  My peer.  A Cowden’s patient too.  A school teacher turned full-time mother later in life.  Because it was meant to be.  I think about the hours spent texting and messaging.  And how I already feel so comfortable…

And I know that the room was full for them too.

I am grateful beyond measure for the ones who understand.  Who don’t give up on us.  Who stand with us, beside us, behind us, or just about wherever we need them to be.

help from my friends

I will resolve to try to reach out more.  I just don’t know how many more hours I can squeeze out of a week.  But I will try.  Because the speed of life is astounding.

Sunday some of my college friends were delayed to the fundraiser.  They were in the hospital with one, as her father was very ill.  Yet, they found the balance.  They stayed with her, and then came to us.

Thursday as I came out of I think my 7th vascular procedure I got the texts on my phone that things weren’t good.  Her Dad passed away Thursday morning.  My heart hurt.  It was ironic really, as I had felt my own Dad ever-present as I got checked in and prepped.  I got to thinking that out of 5 of us from college that I really stay in touch with, three had already lost a father, and one a mother and a brother.  How did we get to this stage?  How did life move so fast?  And although my own recovery will keep me from making it to her side tomorrow, – I know she will feel the love in my heart.

friends uplifts-the-soul

We have to try to slow things down.  Sometimes.

But, I’m not sure when.  Or how.  Because yesterday I sat in the back seat with my heavily bandaged leg, and we made the trek to Cohen’s Children’s Hospital on Long Island.  And we saw an orthopedist about Meghan’s knee.  Her vascular surgeon suggested we go – before the next embolization procedure in her knee.

Her MRI shows some damage to the knee structure.  “Blood is a terrible irritant, even in small quantities…” And I would imagine that this AVM, probably active since birth, has been slowly eroding the knee.  So there is swelling in the bone marrow, and issues with the patella, and all sorts of explanations as to why it keeps hurting.  There is no real solution, but a synnovectomy will get him in the knee.  He can “clean out” some of the scar tissue, and we can pray that gives relief and doesn’t provoke a “hyper healing” Cowden’s type response.  But we have to try.  They have to see.  It’s time to get a real baseline.

So they will present her case next week.  And we will hope that the recommendation is for the vascular surgeon to do his work on the AVM at the same time the orthopedist does his work.  Because the recovery from the embolizations is tough.  This one promises to be outright nasty.  “At least a week on crutches.  Minimum 4-6 week recovery.  PT to build back the strength in the thigh muscle.”  They will fill the knee with saline to get a clear view…

So he asked about her activities, and approved of swimming.  Almost relieved when she told him she had given up soccer and dance because they hurt too much.  He asked what strokes in swimming, almost tentatively, as if he was hoping for the answer he got.

“Butterfly is my favorite!”

keep-calm-and-swim-butterfly

And he looked relieved as he explained to Felix and I that butterfly kick was best on the knees.  Meghan chimed in, “because you kick from your hips!”

We were once again impressed by her instincts and her depth of knowledge of her own body.  She gravitated to a stroke most hate because it probably hurt her the least.  We got the nod to let her continue freestyle and backstroke.  But breaststroke is off-limits.  Probably forever.  Ironically – she never like that one much anyway…

We asked about the timing of the procedure.  He thought before he spoke and told us he wanted to hear what his colleagues had to say.

We pressed him for early May.  The tail end of the CYO season.  The week after her first play, “Hairspray” at school.  He told us to take it very easy.  And if she doesn’t have another bleed before then, that’s probably a reasonable time frame.

“If… Probably…”

We should be used to all this by now.  But, I think you never get used to watching your child get beat up over and over again.  That’s why we pushed to try to plan… to try to squeeze in all the normal we can.  Because she can’t keep having the fun taken away for the medical.  It’s not ok.  But, we plan very tentatively.

The speed of life can be overwhelming.

Thankfully we have so many of you along for the ride.

Next Saturday, February 28th is World Rare Disease Day.

Next Sunday, March 1st is Meghan’s first championship swim meet.  Silvers.  For the 100 butterfly – naturally.

Speed-of-life-1024x537

Keeping focus

It’s 2015 and the first surgery of the year has been scheduled.  February 18th.  This year it’s my turn to have surgery over the February break.  It seems each year one of us takes a turn.

Calendar

So while my friends are returning to school tomorrow, counting the days to the February week, I am not quite as excited.

It’s only a vein.  A large, painful, varicose vein to be stripped out of my right leg.  Large enough that it requires an operating room.  But it’s far from the first.  My veins are crap.  This is almost certainly connected to the PTEN mutation that caused our Cowden’s Syndrome.   My veins seem to be a generation less severe than my girl’s AVM.

I had the first one stripped in my early 20s.  Before I knew of Cowden’s.  Before there was Meghan.  The next 2 were done in the years that led into my early 30s.  Then 4 years ago I had 5 done through an in office procedure at NYU.  There they were just “closed” and not removed.

Vein_Anatomy_112

Maybe they are sped along by a life that requires so many hours on my feet.  Maybe genetics have sealed their fate already.  Not a single doctor I have seen has ever claimed to know for sure.  And that’s better.  I hate when they guess.

I sometimes wonder when I will run out.  I wonder how many they can close off or take out before…

They just keep telling me the ones they are taking out are already broken.  Backflowing.  Not doing their job anyway.

Doesn’t keep me from wondering why they keep breaking.  At 41 I do wonder how this bodes for the future.  But, it’s one of the things I have consciously chosen not to research too much.  Because I can’t control it.

I have tried compression stockings, and I wear them when the pain and pulsing gets really bad.  But, I hate them.  And a religious stint of wearing them a few years back saved me nothing, and caused me to be very angry.  All the time.

They are not nearly this glamorous.  Trust me.
They are not nearly this glamorous. Trust me.

So for now, it’s the last thing I feel before I close my eyes at night.  It is the first thing I feel when I open them in the morning.  It is the reason I often keep moving, because the resting makes me more aware of them.

The pain, the pulsing, the aching is maddening.  But it certainly reminds you you’re alive.  And, as cliché as it sounds – it reminds you that it could be worse.  Much worse.

Our vascular issues in this house, (although Meghan’s still terrify me,) have been confined to lower extremities.  And I flash to our friends in Australia whose 20-year-old fights vascular malformations in her brain.  Over and over and over, with a resilience in mother and daughter I marvel at.

Perspective.  It’s all about perspective.

perspective

Meghan has 2 appointments coming.  One is a follow-up for her vascular surgery in November.  The other is with her endocrinologist to try to tease out the continuously unbalanced thyroid hormone levels.  I have three in February – before the surgery.

It’ll be a busy winter.

So glad we chose to distract ourselves from ourselves with the “Jeans for Rare Genes” fundraiser.  Always good to keep it focused somewhere else.

https://www.eventbrite.com/e/beating-cowdens-first-annual-jeans-for-rare-genes-fundraiser-tickets-14130024283

Rare Disease Day Fundraiser

Good lessons that I teach my daughter.  Good lessons I will remind myself repeatedly when I am tempted to rant about another stint in the operating room.

Better me than my girl.  And it could always be worse.

Maybe we’ll have a different countdown to the February break.  Maybe we will count down until February 15th – the date we hope to raise enough money to make a difference in some lives.  The rest of the week… we’ll skip that for now.

Vascular Road Maps and other Cowden’s adventures…

I sometimes hate the saying that things work out the way they are supposed to.  Sometimes I just don’t buy it.  But, then there are other times.

I have suffered with varicose veins since I was in my early 20s.  I had 2 stripped surgically before I was 30  I had 5 VNUS closure procedures in 2011.

Over the years I have tried compression stockings, switching to comfortable shoes, losing almost 40 pounds, and the veins just keep on bulging.

It gets to the point that the throbbing in my legs is the last thing I feel before I close my eyes, and the first thing I feel when I wake up in the morning.  During the day I get distracted.  And when I get home at night to take off my shoes and switch to pajamas, the size of my legs is noticeably larger.  The swelling is evident.  The blue veins bulge.

Although this is far more than a cosmetic issue, the ugliness and the irony doesn’t help.  Last summer I bought shorts.  In a size 2.

 

This is not my leg - but a close comparison...
This is not my leg – but a close comparison…

This summer I barely ever wore a pair, and despite having a pool at home, I never put a bathing suit on.

As Meghan has battled with her AVM (Arteriovenous Malformation) in her right knee since around 2009, I have learned more about the vascular malformations that can be associated with the PTEN mutation that causes Cowden’s Syndrome.  It seems the connection is documented, but small sample sizes make it hard to study the specifics of this rare disease and all its variations in detail.  See there are differences even within the PTEN mutations that link us all.  Some are germline mutations, some are frameshift, some are missense, others nonsense.  AND, there are further specific differences too complicated for me to process.  It seems, in layman’s terms, that each mutation manifests slightly differently, although there are major criteria that link us together.

And, it seems that the frameshift mutation Meghan inherited from me, is likely at the root of our vascular problems.

Another symptom I have dealt with for years, explained, but not gone after this PTEN diagnosis.

I had an appointment with a highly recommended vascular surgeon on Tuesday. I expected what I have come to expect.

There was the sonogram.  The attempt at settling out the roadmap of veins, so many of which have already been treated. It is no easy task, and I leave them at a disadvantage because I have had my vascular work done in several different facilities.  (You can read that as difficult to please.)  Though for the first time I was told that the deep veins in my left calf are so dilated that they are at great risk for blood clotting.  The blood sits stagnant there.  That apparently is not the most intense of my issues.

winding-road-4849145

Then there was the visit with the doctor.  A young, bright eyed, refreshingly competent doctor who was very interested in my Cowden’s Syndrome, and my previous abdominal surgeries.

He asked if things got worse with the vein in my leg after the tubal ligation in 2011.

“You mean the hysterectomy?”

“No, that was the following year.”  He was reading from a sheet I had given him.  He was right.

I guess somehow I had blocked the tubal ligation which had become unnecessary less than 12 months later when Cowden’s and a uterine polyp (post breast cancer) necessitated a full hysterectomy.

“I’m not sure, why?”

“I am wondering what is causing these veins to turn.  And I have to look at every possibility.”  As he places his hand on my abdomen.

“How long had that pulsing been there?”

“Um… I don’t know.  (Feeling incredibly dumb for ignoring my body) Why?”

“Well, I won’t even consider surgery without some major tests.  First I want a full abdominal CT to check for vascular malformations.”

Now truth be told I wasn’t shocked to hear this.  I had a nagging, behind the ear voice telling me to get that pulsing checked out.  But I had met with a vascular surgeon in July and that turned train wreck.  So I was a bit delayed.  I also I guess didn’t really like the fact that he could feel the pulsing too.  I thought, well I thought that was just mine….

So I left with a script for the CT, waiting for authorization, and a script for blood to assess my kidney’s capability to handle the CT dye.

And as I tried to process that, I thought of everything.  I ran the gamut from aneurysm to AVM.

As I washed my hair the next morning (I do my best thinking in the shower) I had one more thought.

MY SPLEEN!

respectthespleen

I had never mentioned my spleen.  The hamartomas/lymphangiomas/masses on my spleen, the largest of which are 4 cm round.  I was told they are vascular.  I have been watching them with periodic MRIs and I was told as long as they stayed stable I could keep my spleen.

I really hope they aren’t misbehaving.

I like my spleen.

spleen

I also like that this doctor cares enough to check everything out first.

Pain in the butt?  Absolutely.  Life-changing?  Maybe.

The other doctor was ready to take the vein out in the office with no prior testing.  This guy told me I need an ER and tons of pretesting.  You know what?  At least he takes things seriously.

So now I wait.  For authorization.  For testing.  For a whole host of inconvenient to schedules to processes.

And fortunately there isn’t much time to waste on worry.

Life is busy.  We squeeze what we need to into the crevices.

We can’t let Cowden’s Syndrome distract us from this life that needs living.

This one is a favorite of a dear internet friend :-)
This one is a favorite of a dear internet friend 🙂

 

Future Doctor, Meghan

If they would just listen to Meghan.

I mean really listen, and stop dismissing her.

Since before she could talk we have been working to help this kid become more aware of her body.    She can troubleshoot what works for her.  She can tell me what foods and medicines help her or hurt her.  Every day she becomes more keenly in tune with herself.  Its necessary.  That is how we keep her healthy.

My heart always gets heavy for my friends whose children, despite everyone’s best efforts can not articulate their needs, pains, desires, or emotions.  Those are the situations where doctors might miss something- even if they are trying.  Those poor children might suffer needlessly if no one can determine the source of their discomfort.

But not Meghan.  If you will listen.  She will tell you.  If you pay attention.  You will understand.

If she hurts- the whole world might know.  If she doesn’t hurt anymore, even 5 minutes later, its like it never happened.

That’s it.  Plain and simple.

So when she hurt her hand June 4th, I kept waiting for it to get better.

I played tough for a few days, but it still hurt.

Then we tried ice, heat, brace, no brace, different brace – but the pain persisted.

Dr. Jill, our Physical Therapist kept saying, “I think it’s vascular.”

Meghan kept saying, “It pulses like my AVM.”

And on we went – to the vascular surgeon, for the MRI/MRA, to the orthopedist, to the local hand surgeon.  Each one finding a reason to dismiss her, and this pain that persisted.

Pain doesn’t persist.  Not like this.  Not with her.

And, when you have Cowden’s Syndrome, any pain that persists more than 10 days consistently really should be evaluated.  You never know where those tumors may grow.

But the MRI, the three hour MRI with 4,000 images was negative. (Although I still have my doubts.)

And, Meghan calmly told the vascular surgeon she thought it was an AVM.  He said no.

As the pain mounted over the weeks that followed, and we bounced through other routine follow ups that seemed to swallow up our summer, Meghan took solace in Dr. Jill.

You can’t put anything over on Dr. Jill, but she knows kids, and she knows Meghan.

“Look at this,” she said to me.  “It has its own blood supply.  That’s why it stops hurting when she puts pressure on that mass.  She is cutting off the blood supply.”

watch me

Meghan would smile, knowing she was understood – at least by someone.

“Vascular pain goes up the arm, orthopedic pain doesn’t,” she would almost  mutter to herself.

And I knew if they were BOTH sure, then I was sure they were right.

I emailed her oncologist, and her genetecist.  I sent them pictures.  “Biopsy those,” I was told in no uncertain terms.

So Dr. Jill wrote a detailed professional letter to a local orthopedist.  I am still not sure he understood all the words.

Then there was the local hand surgeon, who read the letter, and just spent the visit looking perplexed and bothered.  The MRI report was negative, his Xray was negative, and there was this bump below her middle finger.  He sent us away – apologizing for not helping, but convinced there was no need for surgery.

That was the day Meghan coined the phrase “Donkey Butts!”  And I couldn’t blame her.

donkey-butt 2

I went right home from that visit and sent a desperate EMail to the oncologist again.  This time I asked for a referral.

She is a woman of few words.  Her reply was a link, and the words “Go here.”

hand 2

So, I called and made an appointment.  They took our out of network benefits.  We got in the day before vacation.

He looked at Meghan.  He talked to her.  He sent her for more Xrays.  They were negative.  Then he looked at her hand again.  He told her that he knows all about kids and how well they know their bodies.  He told us he treats a few boys who grow bone instead of soft tissue tumors.  He told her that the boys ALWAYS know where the problems are.  She brightened.

Then he drew a very logical picture of the hand, and traced out the main ligament and tendon.  He showed the connection from the soft tissue tumor to the painful wrist spot.  He let her feel it, and he told her she made sense.  She smiled a huge smile.

Finally a doctor who DIDN'T remind me of this one!
Finally a doctor who DIDN’T remind me of this one!

The he said to us that even though the Xray is negative, sometimes surgeons have to use their heads.  Clearly the tumor on her hand was causing trouble.  Clearly it had to come out.  Exactly what that would mean once he got in there would have to remain to be seen.  Relaxed and encouraged that someone was using their head, we scheduled the procedure and left for Disney.

Disney had its ups and downs, and one of the struggles was the frequent hand and wrist pain. Meghan is in pain so often, she can differentiate between the chronic pain, like her hips and knees, and the pain that she can’t stand, like her wrist and hand.  Chronic pain is absolutely exhausting.

Today was the surgery.

20130820-090603.jpg

We went to a LOVELY outpatient facility on 42nd Street.  The place was clean, the reception was smooth and effortless.

The nurses were darling, every one of them.

The anesthesiologist instilled comfort, and the surgeon, Dr. R was warm and calming.

The procedure lasted longer than I expected – almost an hour and a half.

time-warp

I wasn’t surprised to hear the words that have become normal. “It wasn’t exactly what I imagined, but I am pretty sure I got it all.”

A soft tissue tumor, with roots, AND an AVM (arteriovenous malformation) with its very own blood supply!

So many thoughts went through my mind – including, “SHE KNEW IT ALL ALONG!,”  and “THANK GOD FOR DR. JILL!”

I was grateful for Dr. R, his patience, his trust in Meghan, and his ability to get it done.  I was also instantly tossed into a new level of worry.  See, all along they have been insisting the AVM in the knee was an isolated incident.  I shouldn’t worry about more cropping up.  Well one just cropped up.  Game changer.

I was thinking about the rock wall she climbed June 4th, and even after all this turmoil, I am still glad she did it.  Although we now almost undoubtedly know that the AVM was under the surface all along, and the bruising her hands took caused her body to “hyper heal,” and likely led to more blood being pushed towards the AVM.  The soft tissue tumor erupted some time later.

While the exact sequence of events doesn’t matter, a few things do.

Meghan and Dr. Jill are really intuitive.

AVMs can take place in multiple spots.

Dr. R had to scrape the scar tissue off the ligament, and tendon and nerve in the hand.

Meghan will need quite a bit of therapy (after 9 days of keeping the hand wrapped) to get her mobility back.

I absolutely can not wait to get the pathology report and share it with a few doctors who blew off my girl.

And, most importantly – NEVER DOUBT MEGHAN!

meg doctor kid

Extra Parts

We got the car back – with a few extra parts.

extra parts

 

And this morning for an added surprise a screwdriver left on the driver’s seat poked me in the bottom!

The car isn’t fixed.

We had to take it back to wait for the “Field Tech” to have a look.

Apparently the “Tech Line” suggestions weren’t helpful, so in their infinite wisdom, they one by one took out parts, swapped them with new ones, then put the old ones back in when the problem wasn’t fixed.

10 days in service and I left with the same broken car, with the same parts as when I dropped it off.

Except that a few “extra” parts were left on my seat and my console.

extra parts2

While we will make an appointment some time next week to leave the car for the “Field Tech,”  I had to laugh in spite of myself at the irony of the whole thing.

We have spent the summer at doctors.  Some doctors were routine, some were tests and follow ups for things that were not “ok.”  While there are  many things that will leave me unsettled long after the summer has passed, the most disconcerting right now is the pain in the wrist and the hand.

A three hour MRI, a phone consult with the vascular surgeon, a phone consult with the rheumatologist, a local orthopedist, and a local hand surgeon – NONE of whom have a clue WHY after 8 WEEKS there is significant pain flexing the wrist, or holding a pencil, or performing any number of basic tasks.

Tomorrow we will head to the hand surgeon in Manhattan, with hopes that he can process the “extra” bump on the palm of her hand, and understand its relationship to the pain, and offer us a viable solution.

hand 2

Too hopeful?  Maybe.  But, if I give up hope, where will we end up?

Raw with fatigue.  Frustrated by “extra parts” and the people who don’t seem to know what to do with them…

Which ones do we put in?  Which ones do we take out?

The similarities are almost uncanny.  What are the odds that my child and my car would both have problems where the only hope of an answer lies in the “super specialist?”

 

Normal?

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Really?

Normal.

That’s it?

Normal MRI.

Three hours, two different magnets, three doses of contrast dye.

Six days of agonizing waiting.

The vascular surgeon called this morning.

questions

I want to be happy.

I want to be relived.

I want to be sure I believe he pored over the images on the disk and didn’t just read the report.

Unfortunately I can not be happy, or relieved, because there is pain.  Lots of pain.

When I told Meghan about the conversation she got angry.

I cried.

I don’t know how to help  her except to keep pressing and pressing for answers.

At least she knows I believe her.  I suppose that’s more than some kids in her boat have.

But still its hard.

There is no diagnosis.

There is pain.

She has work to do.

Writing is agonizing.

Swim practice certainly doesn’t help.

What do you do?

charliebrown-football

I can’t take away everything she loves.

I can’t absolve her of responsibilities – even when I know they cause pain.

I called the rheumatologist.  For a small fee I sent her the CD too.  It’s only money.

Maybe she will look harder.

I feel like I have been beaten up.

I spent the afternoon writing a letter to the corporate office about chronic inconvenient car problems.

Really I am tired of all this fighting.

Can’t we all just get along and do the right thing?

No words of wisdom today.  Today we do it Dory’s way…

keep swimming