50,000!

Unwinding from another wild week I checked in here to find that at some point very soon this “Beating Cowden’s” blog will clear 50,000 views.  The number is almost incomprehensible to me.   I am humbled by the support, and the ability to raise awareness of ours and other rare diseases.

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This week Meghan endured ANOTHER MRI.  This time her head was firmly fixed in a cage as she had her brain scanned on every level. while receiving 8ccs of the gadolinium contrast dye that I suspect has been helping cause the headaches to being with.  Irony.  Exasperation.

The bright spot came in the words, “There is no tumor.  There is no AVM.”

Sweet relief and agonizing frustration simultaneously.

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Grateful beyond measure that there is no need for brain surgery.  Relieved to my core that there is no evidence of any suspicious mass or vascular malformation.

Distressed, worried, disturbed, and sad about the diagnosis of chronic migraines.  Please spare me “It could be worse.”  I know.  So does she.  But I have to tell you about 3 hours after starting a migraine I am done.  She has been at it 2 months.  She has not missed a day of school, managed an almost perfect report card, and made it to some swim practices.  She just keeps plugging.

So, we doubled the medicine – striving for the day the pain scale hits 0 again, and hoping it’s soon.

Lots of kids without Cowden’s get migraines – but somehow as the detective in me uncovers her triggers I suspect they will be linked.

And one day soon she will feel strong enough to get back into the pool for swim practice.  Her health has allowed her only about one practice every 2 weeks.  Her goals are much higher.  Patience.

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Working on ways to safely rid her body of gadolinium and other toxins not proven to cause, but clearly not helping the headache situation.  We will figure it out.  The stakes are too high to give up.

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The rest of the stuff.  The worries that are just real life worries, and not Cowden’s worries at all.  The ones I can’t blog about.  They are the ones keeping my heart extra heavy.

Wishes 1

Thanks for tagging along on our journey!

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