World Rare Disease Day – Advocacy and Awareness

World Rare Disease Day is February 28th.  Although the actual day is February 29th (the rarest day…)

Screen-Shot-2015-02-10-at-11.15.15-PM

It is a day of raising awareness across the globe about the 7,000 rare diseases that plague 1 in 10 people.

Our fundraiser has ended for the year.  Our checks have been sent.  All that’s left for tomorrow is our denim ribbons and our shirts.  This day is right up Meghan’s alley.  Meghan, whose entire platform has become raising funds and awareness, relishes a day set aside for just that.

Although some days I suspect it would be easier to be an advocate, rather than a patient AND advocate, I suspect   am sure that we are more effective advocates BECAUSE we are patients too.

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I get that not all diseases, ailments, or medical issues are “RARE.”  I also fully understand that that doesn’t make one more important than the other.  It’s just that when you have a chronic illness, life is really challenging.  When you have a chronic illness BECAUSE of a RARE disease, that really has NO treatment, and definitely NO cure, some days the hill seems insurmountable.

I love someone rare

I texted my husband yesterday afternoon to let him know I was going grocery shopping.  He told me I was nuts.  A week post-op from vascular surgery that put 25 incisions in my right leg, he might have been right.  Except he didn’t argue.  Timing would not allow him to go.

Grocery shopping in my house is an endeavor.  I cross a bridge, and hit not one, but two stores – miles apart before returning home after about a 4 hour round trip.  It’s one of the few things easier in the winter – as I don’t have to pack ice!

Why such a journey?  Meghan.

Among other things I have learned from my daughter, she has inadvertently schooled her parents on the value of nutrition.  Meghan has had food “issues” since birth.  Slowly we have played and peeled away and adjusted her diet to be free of Gluten, Casein, and Soy, as well as most dyes and preservatives, and highly acidic foods.  She takes digestive enzymes with every meal, and a host of nutritional supplements.

She went from grossly behind in speech/ language to miles ahead.  She surpassed extensive sensory issues.

I don’t cook.  Ever.  But, I shop.  And it’s my job to make sure the tools are in place to whip up tasty meals for Meghan, and all of us.  My husband never disappoints.  He is creative, tasty, almost passionate about Meghan having a culinary experience she will enjoy.  He is fantastic.

I shop at Wegmans.  And at Whole Foods.  Most things Meghan eats are organic, and  by default a lot of ours is too.   My grocery bill is usually about half a mortgage payment every 3 weeks by the time I feed the dogs too.  It is the sole reason we don’t settle all out debt.  And it is worth every penny. Nutrition is without a doubt the best investment I have made into the health of my child.

The game changer was the addition of a nutritional cleansing program I have come to trust into her diet.  Felix has been using it for almost three years.  Meghan and I for about 18 months.

Felix needed to lose weight.  But almost as an after effect, after losing 50 pounds, he noticed he felt great.  I cautiously introduced the product to Meghan in slow, low doses.  Once I was clear she had no reaction, I went all in.  For well over a year now she has had a protein shake for breakfast every morning, and since starting school she takes a meal bar for lunch on school days.  Over 40 grams of healthy, well-digested protein a day, and this child has done nothing but grow!

Growth spurt?  Maybe.  But the hair, the skin, the nails, the teeth.  She glows of good health.  She missed her shake for 2 days a month ago.  She had a tough swim and felt awful.  Coincidence?  Maybe.  But she’s not even taking chances any more.

In my house we have a protein shake every morning, and Meghan has some organic, home-made waffles too.  We don’t just trust any protein shake.  Ours is high in whey protein from “happy cows” in New Zealand.  And my girl who can have no dairy at all without severe pain – tolerates these like nothing.

isagenix shake

Leaves a mom to wonder- maybe it’s not a “dairy” allergy, as much as a “what’s fed to the cows” allergy?

I could debate processed vs. natural vs. organic all day.  What I have here is results.

When you are fighting a rare disease, you need to have the best food in you as possible so you can battle like a champion.

Meghan got out of swim practice tonight.  She never gets out of the pool.  Her coaches know that.  I know that.

“It hurts Mom.”

Dropping stomach, smiling face…

She knows.  All of it.  Whether I say it or not.  She misses nothing the doctors say, and despite my wishes they ALL talk right in front of her.

She has earned the right to sit out.  Her coaches know how hard she works.  She waited for starts – to get a few in before Sunday’s Silver Championship meet.

On the way to the car she told me she wasn’t sure the knee would hold till May.

strength

I am still waiting for a call back from the orthopedist from last week.  Apparently her notes are being typed.  He can’t possibly speak to her case without them.  He saw 65 patients the day we were there.

The knee is swollen.  We will try ice.  Hopefully that’s it.

“What if it’s blood?”

“What if it’s not?”

That’s kind of how the conversation went.

Truth is, neither of us know.  So we will press on.  We have the main plan – the one that lasts till May.  And we have the back up.  The one where we just yell “plot twist!”  and go with whatever happens.

Why did I go grocery shopping last night?  For Meghan.  For her food.  And so she sees me press on.  Despite being hurt.  Because if I don’t press on through tough times, how can I ask the same of her?

My Mom may not have a “rare disease,” but I learned stubbornness, stamina and work ethic from her.

Rare Disease Day 2015.  It’s not so much about “celebrating” as it is about advocacy and awareness.

Because the under diagnosed, the underfunded, and the often ignored – matter.  Very much.

We are BEATINGCOWDENS… One day at a time…

Global Genes hit this one spot on!

Global Genes hit this one spot on!

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