A Day in the Life of an IH Warrior

Thank you to Scott Collins for writing this poem dedicated to all the IH'ers on our first annual IHope Day, June 25, 2013! 

Its 10am, and I'm still in bed
Head's still pounding
Too much pressure in my head
I would get up and try to make it
But my topamax makes it hard to fake it

Its 2pm, and I'm still in bed
Thinking about the words my doctor said
... Can't get no relief even when the icepacks' cold
I just found my last Imitrex, worth its weight in gold

Its 5pm, and now and the edge is off
But feeling down, forgot my Zoloft
If I don't remember no one will
Forgetting if I took every pill.

Its 9pm, and I'm back in bed
Talking to a friend, not believing what she said
Some think that I'm pregnant, some thought I was dead
It hurts that no one from school comes around
To encourage me when I'm feeling so down.

Its 2am and I'm still up
This icepack is cold and I put on my socks
Ringing in my ears, oh how I love you Diamox
My favorite show is on, but I need to sleep
Gotta go to the doctors, cancelled last week.

Its 6am and the headaches back
No one here to get the icepack from the freezer
My body hurts like this only after a seizure
I hope I didn't wake anyone up, in the house all around
I really needed my Gatorade to get this potassium pill down

Its 10am and I'm laying down
Hearing strange voices all around
Everything is bright, but everything is gray
I hate these ER trips, like the one I'm on today
IHope its not my shunt, IHope its not my vision
Just give me my life back, and no more incisions.

What a beautiful tribute and support for all the IH'ers out there.  Thank you again, Scott, for sharing your talent in the name of awareness for IH.

~ Pia

Luke Goss -- Our First Celebrity Contact!

Actor Luke Goss is now following us on Twitter!  Yes, we are totally excited!  You may know Luke from his roles in Hellboy II -- The Golden Army, Death Race 2 and 3, Blade 2, and more.  He is a versatile actor whose dedication to authenticity and depth are evident in the roles he plays.  I especially liked his portrayal of the lead character in Interview with a Hitman; his performance brings forth a sense of compassion for this person so that while you don't like the deeds he does (he's a killer, after all), you certainly understand why he ended up in this life and hope for his conversion.  Plenty of blood and death in this movie, but it's a character story at heart and Luke pulls it off very well.

In addition to being an accomplished actor and musician (he and his brother, Matt Goss had a band called Bros together in the 1980's -- check out their videos on YouTube and be enthralled by Luke's proficiency on the drums!), Luke is our very first celebrity/high profile Twitter follower.  How cool is that?  Raising awareness means getting the attention of as many people as you can, in as many walks of life as you can.  The fact that this actor, as busy as he is (10 projects in the works for this year and next, according to his imdb profile) and with as many people vying for his attention as he undoubtedly has, noticed us and actually took the time to follow our Twitter feed just blows me away!  How big is his heart that he cares this much about our little rare disease community and wants to know more about our fight for awareness?  I'm thinking it is ginormous.  :)

I want to personally encourage you to check out this actor and support his work.  Luke Goss is going places, and we are absolutely grateful that he's invited us along for the ride.  Take a look at his Twitter profile so you can follow his career, get firsthand news about what's coming up, and go see him in action.  What?  Firsthand?  Yes!  Go visit his Facebook page and Like it, and if you do please let him know that we sent you! 

Mr. Goss, if you're reading this, please let us say THANK YOU from the bottom of our hearts for your support and your interest in IH awareness.  You rock!

~ Pia

Petition to make IHope Day an Official National and International Day of Awareness for IH

On July 1st, I went to the Change.org website and started an online petition to have IHope Day officially recognized as a national and international IH awareness day.  It was a whole new experience, and took me a while to figure out that I had to add the email addresses of the people to whom I want the letters from the petition sent (every time someone signs the petition, the online letter is emailed to the person being petitioned).  I'm still learning the process of updating and promoting.  Slowly but steadily, we're gaining a bit of momentum.

To see the petition, click HERE.  If you feel moved to sign it, please do.  We would be immensely grateful.  If you would like to leave a comment on the petition saying why you feel an IH awareness day is important, that would be fantastic, too.

There are some very moving comments on the petition page.  I'll share a few in coming posts.

~ Pia