Representing IH, Learning from Mentors, and Networking with Other Rare Advocates

In exactly one month, Kathi and I will be attending the Global Genes Project's 2013 "Tribute to Champions of Hope" Gala.  It's the day after the 2013 Rare Patient Advocacy Summit, also hosted by the awesome people of Global Genes.  Last year, Kathi and I attended just the summit and it was fantastic -- so eye-opening and inspiring that Kathi decided that she wanted to do what all these wonderful advocates were doing: raise awareness for the rare diseases that affect their lives.  We talked and we talked to other people, to mentors, to each other; and that very day her foundation was born.  We've come a long way in a year.  Still a long way to go, but we're working hard and are excited about the direction this foundation is taking.

This year, we're attending the Summit with two of our friends (Kendall and her mom, Karen) who are active in the work of The IHope Foundation.  We have never actually met them in person, but we feel like we've known them forever!  We're looking forward to seeing them and talking with them, and learning more with them about how best to advocate for IH'ers and raise more awareness of IH across the globe.  

And about the gala..... Kathi and I have never been to a fancy event before.  We're excited and a little nervous!  We're so blessed to have the opportunity to attend and to represent IH.  We're very grateful to Carrie and the Global Genes team for welcoming us with open arms.  We're determined to find just the right dresses to wear so we don't stick out like sore thumbs!  :)

~ Pia

Guest Post: The Best Lesson that IH Taught Me

So I started writing my story about how I got diagnosed and what my life has been like having IH. I have to say that I really kind of depressed myself; it’s not something I want to read about (I wanted to find some Hemlock). I know what it’s like having IH and I am sure that the people that have IH know what it’s like to have IH. I do not see that point of writing what has been written before. Having IH has taught me many things about myself as a person. It has taught me to laugh more and when I laugh to use a real laugh. When I used to laugh before, I used to be embarrassed about how people used to perceive me. Now I laugh using my real donkey laugh, because laughs are hard to come by. When you live in pain you come to realize that any moment you have of joy is an awesome moment. 

When people used to say things like, “life is short” and “YOLO” (okay I still cannot stand YOLO, what is that?), I used to smirk and think, “What fools.  That is so cliché.” However now I realize life is short. Especially when you have something like IH. I want to do things now because there is a chance that I may go blind. Since I got diagnosed with IH, I have done things that I thought I would never be brave enough to do. I started writing a book (I am on page 1), I dressed up as a zombie for Comic-Con (I was a beautiful zombie), and I traveled around the United States. The bravest thing that I have done was quit my job. This was very brave for me because I am a Type A personality, I like my schedule and I like having everything set. Having to admit that I needed to quit my job because of my illness was very humbling for me, because I am a very independent person. It took me a very long time to come to terms that I was never going to return to my position at work. I also did not want to let IH win, but like John Lennon says, “Life is what happens to you while you are busy making other plans.” I was making plans and I had not realized that I was living.

To me, the most important thing to remember is not to give up the fundamentals of who you are. Sometimes it is hard to hold on to your fundamentals when you have a chronic disease. Sometimes I really wanted and want to give up. Living in pain is not fun (no duh). Sometimes I just want God to take me away (like Calgon). However, I remember that I have so much love in my life and happiness. Each night that I go to sleep I always have hope that tomorrow will be better, that tomorrow will be pain free. I never give up hope. It is the eternal candle that I have lit in my heart that will never extinguish. No matter what obstacle comes along, I always believe that the next one will be easier to overcome because I have hope. I guess that is the best lesson IH has taught me: to become a perpetual optimist.  

~ By Cynthia Rodriguez

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

A Young IH'er Celebrates IHope Day... with a PowerPoint Presentation!

This is Ignacio.  He has IH.  He is so passionate about raising awareness that he made a PowerPoint presentation to share with his classmates.  Want to see it?  CLICK HERE.

To celebrate IHope Day, he and his mom also made a huge mound of IH ribbons and gave them out at his school for everyone to wear.  Oh, and they wore their IHope Foundation t-shirts, too!

Way to go, Ignacio!  Great job spreading HOPE and raising awareness!

~ Pia

This Warrior Mom is Moving Mountains -- and Clinging to HOPE in the Battle

 

 Be prepared for an over-share folks. Look away if that works best for you. :-)

Life has been really tough for a while now. Between trying to walk through the process of our eldest child (for which I remain grateful and so proud of the many life lessons, he now has under his proverbial belt!), the many diagnosis of the patient (we're working to get him to agree to a group home situation - Oliver and I have to accept there's only so much we can do, especially when the patient isn't capable of getting out of his own way) and then Sutton's illness and subsequent diagnosis. Everything is a push.

A new friend shared this article. It left me in a puddle. Breakdown is good though. It's how we increase our ability to improve. While reading, I had an epiphany. Yes, I am that parent. Yes, I am that person. I was raised to PUSH. I've always pushed! When mom became ill - I fought every doctor through misdiagnosis and for her to receive the best care. I pushed and ran a business, worked an additional job (30 hours a week), was pregnant through this and had our first child with very little support (he was born five weeks after mom passed), dealt with the patient (he was a challenge, even then) and took on my dad's challenges. When she passed and we inherited all the responsibility of my dad, I fought for and with him and his many issues. When our eldest child entered the first grade, the required push increased. I fought for him, loudly and with unwavering tenacity. When diagnosed with a laundry list of challenges two years later, I fought louder and harder. I never stepped down during any of this. When dad passed away, there was a relief I'd have to fight, less. A couple of years later, when another child was diagnosed as being on the spectrum, I fought again. I didn't like being in my own skin, as every moment of life, felt like an argument. Then, I found a way to stop most of the fighting. We removed all of our children from conventional classrooms and began to educate them at home.

Gone were the arguments, confrontations and feelings of hopelessness. No one would challenge food allergies that obviously impacted some of our children. No one would ever say again (at least with any authority!), that our child was the result of our not being spankers/punishers. No one would mock our method of discussion per consequences and personal integrity. No one would challenge the need for specific structure in some areas, as well as the need for lack of structure in others. No one would limit what our children wished to learn, the rate of learning, etc. I read and researched and read some more! I sought out those with far more experience than myself. I listened and learned! I pushed, but in a positive way! The buck now stopped HERE.

But now, we're tossed back into the same situation of having to push and fight. Ya'll were with us through the nightmare of ER visits and medical neglect. We owe Sutton's life to the Ponzini-Chungs - without them, who knows to what greater damage, Sutton may have been subjected. I am now back in PUSH/FIGHT mode and it's conjuring so many emotions. Pushing is necessary. Pushing is required. Somehow, I have to call on my previous warrior spirit and remember how to be the whole of who, once upon a time, I had to be. The problem is, I didn't like her. Now, I have to find a way to be a better version of who she was. She moved mountains! Certainly there must be a way to balance it all and not feel like I'm gloved and ready to pulverize the world.

Please continue to keep all of us in your positive thoughts and prayers, as we navigate life.

~ Contributed by Rachel S.