Moving at our OWN pace

Two weeks ago today we left for the last day of school.  Seems like an eternity, although not a restful one.

Today was the first day I woke up with nowhere to be, and nothing to do.  Our first mandatory stop is swim practice at 5:30 PM.  So I sit, nursing a cup of green tea, and trying to convince myself, on my health quest, that it is just as good as the caffeinated hot cocoa I have been drinking for years.

snooze-and-lose

This morning I woke when my body told me it was time – somewhere around 8:15.  What a blessing to open your eyes because you are ready.

I tended to the garden.  I watered my tomatoes, peppers, eggplant, cucumbers, and I even picked a ripe zucchini.  I watered the flowers on my deck and I marveled at the calm beauty of the neighborhood at 8:15 on a Wednesday morning.

Not my plant - but you get the idea!

Not my plant – but you get the idea!

Now, to all you teacher critics out there- I recognize ten weeks of unscheduled time is a gift.  I understand its not “the norm,” and I AM grateful.  But to all you who are realists, I try not to be much of a complainer, but this schedule we are keeping is far from a walk in the park.

Even as I reflect just on yesterday, and then the last week, I can easily find myself overwhelmed.

schedule

The rhuematologist confirmed that the Celebrex is necessary.  On the up side she said, at least the liver seems to be handling it well.  Yep, on the up side I need to worry about my almost 10 year-old’s liver?  So we have about a 50/50 split, and that’s just the doctors we like – touting the pros and cons of Celebrex.  Take her off.  Leave her on.

celebrex100mg

I love them all, but ultimately the pain decides for us.  This child is accustomed to pain so deep that the 20 laps of butterfly she swam Monday – when I expected her to be barely able to lift her arms Tuesday – caused her to need only “an extra stretch.” But the pain in her wrist right now – that can knock her to her knees.  Celebrex it is.

So I read articles from the oncologist last week about “angiogenesis” http://childrenshospital.org/newsroom/Site1339/mainpageS1339P356.html

I try to absorb medical jargon about why the Celebrex helps the pain – but doesn’t cure it.  And why it may even help prevent the Arteriovenous Malformations (AVM) from flourishing.

I read an article she gave me on “prophylactic thyroidectomy” and its benefits in Cowden’s Syndrome patients.

I read about “Long Chain Fatty Acid deficiency” and heard about the possible need for a muscle biopsy to assess carnitine levels.

worried mom - FBI

I am an educated woman, but I sometimes wonder why I seem to spend more time in medical journals than educational ones.  Did I miss my calling somewhere along the line?  Probably not, but “necessity is the mother of invention.”

And yesterday as she was examined by the rheumatologist there came the confirmation that the right wrist is “thicker” than the left.  A month and 3 days after what we thought was the “injury” to the wrist, it isn’t better.  Not really at all.  So she said, definitely get an MRI.

We are on it.  11AM Saturday.  We already cancelled the birthday party we were going to.

She wants a copy of the report – ASAP.  She expects they will find something.  I went to make my six month appointment, and she told me to hold off until after the test results.

I look at the piles on my desk.  Better since the shredding is over.  I glance at the order confirmation for my new driver’s license, and can’t help but wonder where the old one ended up.  I look at a beautiful collage Meghan sent to the printer last night as I was working – just to make me smile.  I look at the books for the “Teacher Effectiveness Training” I will be attending tomorrow, and the flyer with the itinerary for the Disney trip.  Its right alongside the Costco list, and the original copy of the Myriad genetics report that I don’t have BRCA 1 or2.  Obviously I still have a little more work to do down here.

Monday I went for my MRI.  The one that checks my spleen.  Next Tuesday I have the appointment to find out if I can keep it.  Already covered the endocrine surgeon, the gyn oncologist,  the I just need the breast surgeon and the plastic surgeon, and my oncologist to have their visits.  It’s easy to forget that I am even part of this Cowden’s Syndrome mess.

Lessons Learned from my daughter

Lessons Learned from my daughter

My focus is on the beautiful one with the curly hair, who gives the best hugs in the world.  It will be a long week – again.  So for today, I will try to slow it down.  The sun is shining.  It’s July.  And we don’t have to go to work OR the doctor today!

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