Sunday, May 19, 2013

Great Strides 2013

Today is Great Strides.  I am not going.

This has been a long and agonizing decision for me.  Ultimately I am doing what I can emotionally and physically and I shouldn’t beat myself up for this.  But I will probably continue to do so anyways. 

I started a Great Strides team in 2006.  Four people walked with me that year: Darin, Sarah, Callie and Carly.  Each year since my team has grown and evolved.  In 2009 my best CF buddy Lauren and I combined forces to create “The Lucky Ladybugs: Flying Towards a Cure.”  2009 was the year we raised the most money - $20,000.  Since then I have done an annual letter to family and friends.   This year I wasn’t up to doing the letter because of all the craziness with our sudden wedding. 

The Lucky Ladybugs has been really special to me – Lauren and I got the name because we both have Ladybug tattoos on our right wrist.  We worked really hard to build our team and to make a difference.  Sadly, Lauren passed away in September of 2011, but I continued with The Lucky Ladybugs in her memory and to keep fighting.  And I will never forget and never stop fighting.  This year I needed to do things a different way. 

I view Great Strides not only as a fundraiser for the Cystic Fibrosis Foundation, but also as a coping mechanism for living with or near this disease.   I know every dollar I have raised has been therapeutic – it’s me kicking CF instead of the other way around.  Every donation I have gotten makes me feel like everyone has my back in this fight – and Great Strides makes me feel really good when everyone shows up to walk with me.  I’ve always looked at it as one special day where I get to feel all that love and support at once.  Seeing how many people show up to fight CF with me I get to feel a little more normal and that living with this disease might not be so awful – and it might get better. 

I am giving all that up this year because of my differences with the CF Foundation. 

Every dollar I have ever raised has gone to a wonderful foundation.  I have my differences with the CFF – and I’ll get to those later – but all in all, I wouldn’t be here without the CFF.  They have provided the funding for the drugs that keep me healthy.  They have provided the funding for the research for Kalydeco and the 809, which hopefully I will be starting that trial soon.  I will never bash the CFF for the good they have done for the CF community as a whole.  We have these medications we otherwise wouldn’t have.   I just wish (and maybe it’s a wish I’m going to give up on) the CF Foundation would do more for the individual with CF.  

I wish there were support for people with CF from people with CF.  It makes a big difference.  I believe there should be Foundation sponsored communication.  We should be ENCOURAGED to find support in one another, not discouraged.  There should be Foundation programs to help people who can’t afford health insurance or copays or food.  No one should have to choose between medication and food.  What good is a cure if there is no one left to cure?  Shouldn’t a foundation work to keep the lives of people with CF as good and healthy as possible UNTIL there is a cure? 

With that said, the CF Foundation is making some (hopefully) big changes.  I have been involved in a few conference calls discussing what should change at the Foundation.   I don’t think what is proposed is enough, but it might be helpful.  All I can do now is tell you what I believe and what I’m going to do about it. 

I believe the new “infection control” policies are mostly to cover their ass from being sued if someone catches something at a CFF event.   I don’t believe they actually “get it.”  The Foundation heads don’t understand how isolating this disease is.  They don’t get how a CF adult might not want to draw attention to their disease by publically wearing a lei to let everyone at the CFF event know, “Hey! I Have CF!”  They don’t understand what it’s like to be bullied because you cough.  I get stares wherever I go.  I get offered cough drops and peppermints when I fly so that I’ll shut the hell up.  People think I am carrying the plague.  That is isolating and emotionally difficult.  The Foundation doesn’t understand that when I would go to a CF event it was comforting to be able to cough and not stick completely out.  I’ve lost that due to new infection control policies. 

I’m supposed to stay at least six feet away from any other person with CF.   No two people with CF shall attend the same indoor event.  Because of this we can no longer attend galas, or CF education nights or the CF conferences.  Those are education opportunities the community is losing.  The Foundation needs to educate their own patients on issues like nutrition, the importance of adherence, and exercise.  They now need to start over and figure out how to get the information to the patients.  I think the Foundation should have thought harder before leaping into new infection control policies.  I think having CF patients/parents signing a waiver with known risks of attending a CF event – including running into another person with CF and possibly catching something.   They are known risks.  Risks happen.  Sometimes it’s beneficial to take risks.  That’s why it’s a RISK. 

I am starting to believe the Foundation doesn’t understand much about living with cystic fibrosis.  It’s not just the social isolation they don’t understand.  They don’t know what it’s like to go up against a health care team that doesn’t care about you.  They don’t know what it’s like trying to advocate for yourself and to try and get all these medications ordered and paid for and organized.  They do not understand what it feels like to be completely drained and to want to give up living because of your disease.  I do.  I have been there and know others who have been there as well.   It’s not fun and I believe it could be so much better with a little more individual help from the Cystic Fibrosis Foundation.

Those are the main reasons I decided not to fundraise this year and the reason I decided not to go to Great Strides.  I decided to stand up and tell people what I think.  I feel really sad I missed out seeing people I only usually see at Great Strides.   I’m sad I didn’t get all the really sweet letters I get back with checks to the CF Foundation when I send my annual letter.  Most of all, I’m sad I couldn’t do more to fight the Foundation to get more help for my fellow cystic fibrosis patients. 

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