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