It’s not a sprint… It’s a marathon

life-is-a-marathon

I’m not a runner.  At least not in the traditional way my sisters run.  I don’t really run unless I am being chased.  Tried it for a while but the knees and the back weren’t interested.  So the only running I do is from appointment to appointment.

I guess I run- in a metaphorical sense.

This has been a busy week at our house.  In addition to the host of emotions Friday, we spent the earlier part of the week addressing mandatory appointments – as it seems we do with every single vacation.  It’s old I tell you.  It’s old.

Monday was physical therapy, and then additional genetics for me.  THAT will be a follow-up in and of itself.

Tuesday was our Integrative Medicine doctor on Long Island.  The one who listens carefully and THINKS about my child before making a move.  He ordered a slew of tests.  He is concerned that ALL food seems to be bothering her stomach to some degree.  But, he didn’t rush us out to a GI.  He knew we’d get brushed off.  At 5 foot 2, and about 100 pounds, my tall, thin, beautiful girl is hardly the poster child for malabsorption.  But he knows me well enough to know that I am overloading her with nutrient rich foods to compensate.

We had a wonderful, long talk about nutritional cleansing, and how I would have given my eye teeth for products like the ones I use now to have been on the market 9 years ago when I began my journey with Meghan.  He will look, and sample.  We will talk.

But, he no longer blames one food for Meghan’s pain.  He thinks the balance of her gut, from years on edge – needs some help.  He has suggestions.  We will wait for the lab work.  Half done last Thursday – the rest tomorrow.  Then we will talk.  On the phone.  And we will make a plan.  Have I mentioned how nice it is when you have a doctor who is a fully compassionate human?

never give up

And Wednesday there was chaos.  A 9:00 for me at NYU with my oncologist.  She reviewed my MRI to tell me the spleen tumors are growing – slowly.  But, they can stay for a while.  Whew!  And the cysts on my kidney I forgot all about – stable as well.  WIN!

And then there was Sloan for Meghan.  Blood work first.  Then a follow up with the surgeon who cleared her from the thyroid with no need to return again.  Of course even after waiting almost 2 hours for that appointment – the blood wasn’t in.  And our endocrinologist was “otherwise engaged” and unable to see us on a Wednesday.  So rather than come up twice, we opted to have him just review the blood work.

Then we squeezed in a visit to the ENT who took her tonsils out- hoping he could shed some light on 6 months of throat clearing. We left with the assurance that he had no definitive diagnosis, and he doubled her reflux meds and prescribed a new nasal spray, for inflammation in the nose. That he wasn’t sure was allergy related… I have to call in 2 weeks. Anyone picking up a trend?

The call from the PA about the AM lab work came around 4:30 while Meghan was at swim.

“The thyroid numbers are essentially unchanged, so we are going to raise her medication.”

Me: “How could that be?  you raised her dose 6 weeks ago when the TSH was 10.69.” (reference range high is in the 4s)

“Obviously she needs a higher dose.”

“What was the TSH?”

“We are going to raise her dose to 125mcg” (Essentially my dose)

“WHAT WAS THE TSH?”

“The doctor feels this will help get her numbers in range.”

“WHAT WAS THE NUMBER OF THE TSH?!!?!?!?!??!”

Finally…. “10.54”

Me,” Down only .15 in 6 weeks?  What is the problem?  Did you test her T4 and T3?”

“Only the T4 and its normal.”

“Why not the T3?”

“It’s not relevant.”

“REALLY?  Why?…”  After no response I continued,”When you have a patient not responding traditionally I would think that you would run every test to get the greater picture.”

“We don’t believe in T3”  (To which I actually laughed.  It’s not like it’s Santa Claus or the Easter Bunny!)

“What do you mean you don’t believe in it?  Obviously Meghan is not absorbing the synthroid and there has to be a reason.  I think we need to start investigating before she is hypothyroid for too long.”

“Well, Mrs. Ortega I think you and I are saying the same thing.  She needs more medicine.”

“No, I am saying let’s figure out WHY the medicine is not working.  You are saying to continue to raise the dose of what is NOT working without looking at possible reasons why.”

“Well we will see in 6 weeks.”

Yep.  And for 6 more weeks she will drag her exhausted bottom around – so hypothyroid I know I would barely function.  Hopefully by then I will have found us an endocrinologist willing to accept that there is no “box” Meghan will fit it.  There is not rule her body will not defy.  I am appalled that I am supposedly with the best of the best.  Leaves a scary feeling in your heart.

Onward to the doctor search.

The mail arrived this morning, as we were headed to the orthodontist.  There was a script for Meghan’s next thyroid test.  There was no copy of the labs.  They HATE it when I ask for the labs.  So I called and insisted they be EMailed to me.  It was quickly clear why they didn’t send it, as another test was disconcertingly out of range.  A quick forward to my LI doctor… and we wait.

mc-alex-and-ani-its-not-a-sprint

As we headed out to the orthodontist the mood was light.  Meghan was ready to take impressions for the plan to remove the braces next month.  And when they called me o the back to tell me her bite had “over-corrected” and it would take some time to fix – I just about took the deep breath I needed to speak quietly.

Basically I was being told that because my daughter did EVERYTHING she was told to do religiously she had done TOO good of a job.  Now her overbite had been corrected into teeth that meet to closely.  She stared at me.  I attacked a bit.  I asked why they thought it was OK to month after month make promises that were not to be fulfilled.  Perhaps it was ok for her to get defensive.  Maybe I was attacking.  But, I don’t understand why you say so much to a child.  From the beginning she was flat-out promised her teeth would be ready before her 5th grade graduation.  Now she is getting a MAYBE for September?  Don’t misunderstand me.  I want them on until they are done.  But my issue is that SHE sees the doctor and his staff alone.  THEY say whatever without me being there.  It is NOT ok for you to INTEND to be ready for impressions, and then have things go so wrong in 5 weeks that we appear to be set back 3 months!

The doctor obviously got the message I had had enough.  I like him.  I really do.  And he came out to say to me he …wait for it… had NEVER seen anything like this.  How UNUSUAL it was.  And how 99% of the time things run according to plan.  He apologized.  I reminded him that I had already told him several times to be careful with my girl – she’s not a “typical” case of anything.  I asked them all to watch what they said moving forward.  But it was too late.

To Meghan the message was clear.  She was once again the “unusual” case, and once again.  And to make matters worse this time her GOOD behavior may have contributed.  What a tough message for any kid.

This is the part where I caution you – friends and family alike to withhold any comments about how it could be worse.  Or how its good the teeth are set right before the braces come off.  Or your friend/cousin/brother/kid had their braces on for 5 or 6 or 7 or 8  years and she should be happy it will only be 2.  Because really, at some point something should go her way.  At some point when the orthodontist (who mind you she has been working with on appliances since just after she turned 7 (4 years in August)) says 18 months for the braces, that it should just be 18 months.  Because that’s what happens to the “normal” kids.

We have not lost our grip on reality.  I promise.  We get it. But  some days… some days I have to wonder where the limit is.

Some days when she complains that she just wants to be “normal,” and I try to assure her she is.  I remember days like this at the orthodontist.  Or the 2 days it took her to recover from a 3 hour outdoor play date earlier this week.  Or the “fake spring break” that had more trips to doctors than anything else – again.  And the follow ups that will continue in the weeks ahead.

I cried when we left the orthodontist office.  I cried because I sometimes am just so frustrated at how much she is asked to endure.  And she sat.  Quietly.  Until we got home.  And she screamed a loud piercing scream.  And we hugged.  Because we know we are in this together.  And we know no matter how bad it gets, not matter how tough it is – we have to keep on keeping on.

Tonight I stopped at the mall and bought these.

alex-and-ani-its-not-a-sprint-its-a-marathon-expandable-wire-bangle-russian-gold

 

One for each of us.  A reminder about the meaning behind all that metaphorical running.

The car got towed today.  The old one.  I think its dead.  Permanently.  We have an appointment to get the oil changed on the new one at 8 am.  We’ll talk to the mechanic then.

Then there is that fasting blood test at 10:15.

The whole identity theft thing seems almost ages ago.

No wonder I don’t run for fun.  Too busy running as a way of life.

running-a-marathon-all-your

No worries – We are BEATINGCOWDENS!

 

 

3 thoughts on “It’s not a sprint… It’s a marathon

  1. Thank you xxx and yes, there is always people going through worse, but when you are having a tough phone call with uncooperative medical staff or having a bad news, well, it hard to deal with it at that point and thinking about people going through worse just doesn’t help. It’s good to be able to feel the frustration, express it, and then continue your journey. Big hugs to you both xx

  2. I’m STUNNED. STUNNED reading this post. HER TSH was 10! I cannot believe that. I am just floored. You know, I find it more than amusing (NOT) that West Coast and East Coast doctors “don’t believe” in T3. I CANNOT get my endo. to test that without pulling out my hair or some such thing. Not to add fuel to the fire (I pray not) but have they looked at her parathyroids at all? I know that doesn’t directly affect TSH (I think) but I’m wondering if that could be part of an issue? i had secondary hyperparathyroidism for a while….before surgery. Or how are her Vitamin D levels?

    No platitudes from me. No “Oh you’re so strong”, because when this is all we have, this is what we do. I want to thank you for choosing to share your story on here. Because when I’m feeling down, it helps me to remember that I’m not alone.

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