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. 

Monday, April 15, 2013

Public Thank Yous and Wedding Summary

First, THANK YOU.  Thank you to everyone who came to our wedding.  Thank you to everyone who was there in spirit and will celebrate with us at our big reception next June when we renew our vows.  Thank you for understanding our reasons for moving up the ceremony.   Thank you for dropping everything and coming to Wisconsin with only 3 weeks’ notice.  I cannot express how much it meant to us for you all to fly in from around the US to spend a whole weekend celebrating our love.   I will admit I put a lot of work in these past three weeks, but I never imagined how spectacular everything would be.   It was beyond wonderful and beyond everything I hoped for.   I can’t stop smiling and laughing and dancing around when I think about this weekend.   

Because of all the love Dan and I have received, I want to publicly acknowledge everyone and give those of you who couldn’t be there in person a little recap.  Thank you for coming to the blog I barely ever use anymore to read this.   These are my personal thoughts and feelings the day after our wedding weekend. 

Mom & Dad Weffenstette
How do I put into words how I feel about my parents?   Thank you for everything you’ve ever given me.  Thank you for raising me the way you did.  I am who I am because of you.  I am this healthy because of you.  I was able to get MARRIED because of you.  As a little kid I loved playing wedding, but as I got older I figured I might not live long enough to get married.  Your love and support has kept me alive and fighting. 

Mom:  When I have been too sick to fight for myself, you have fought for me.  You’ve saved my life many times.  You’ve always been there for me when I was lonely or sad.  You let me call you three, four, five times a day when I needed to.  I owe you so much.   I love you so much.  You’re the first person I made eye contact with when the ceremony ended and the look in your eyes filled my heart with so much love.  Thank you for being an amazing mom.  I love you. 

Dad:  Just like Mom, you’ve always been there for me.  I don’t know where I would be if you and Mom didn’t have the medical knowledge that you do.  I rely on you as a major part of taking care of myself.  Even though I’m married now, I will always be “Daddy’s Little Girl.”  The speech you gave at the dinner was one of the most touching things I’ve ever heard.  The musical tribute was amazing – I get choked up thinking about it.  Dancing with you to “Father and Daughter” is one of the best parts of the weekend.   You singing to me while we danced is one of the best moments of my life. 

I already posted this as the description of a photo of us dancing, but it’s so relevant and exactly how I feel: “As long as one and one is two, there could never be a daughter who loves her father more than I love you.”

Darin: My Little Dar-Dar.  My rock.  The guy who has been a best friend since he was born. The guy who knew how to help me through my panic attacks when they were really bad.  The guy who gave me every reason to keep looking for my special someone when I was most discouraged.  One YouTube link gave me back all the confidence I needed.  Born this way, Baby!  Thanks for being at the bachelorette party – you fit in so well!  Sa-sa-sa-swiper no swiping! 

Thank you for coming to our wedding from Colorado even though you had plans for the same weekend.  I hate living far away from you, but I’m so glad you’re happy where you are.  Thank you for being the coolest, most supportive brother I could ever have.  I’m so glad you came a day early and we got a chance to hang out.  I didn’t get a chance to ask you if you mind that I got married.  It’s not legal for you to get married in most states and a part of me wanted to not get married to stand up for you.  I hope someday you are as happy as I am with your special someone and I get to attend your wedding.  I love you!

Mom & Dad Demp
Officially my In-Laws!  I didn’t gain a second set of parents Saturday – I gained a second set of parents Labor Day weekend 2011.  Since the first time I met you both, you have welcomed me into your family.   I genuinely appreciate that and know how special it is.  I want to thank you for the way you have treated me.  I was Dan’s first girlfriend and still you welcomed me into the family as soon (or even before) you met me.  I don’t know when you learned about my health and whether Dan told you or if I did, but I know you never treated me differently because of it.  I’ve known people who questioned whether their son or daughter should date or marry someone who is sick – and you’ve never done that.   It means a lot to me. 

Wendy: Thank you for your never-ending, unconditional love for Dan and me.  You have a wonderful son – thanks for sharing.  I really feel like a daughter to you and that is special.  I’m excited for to be a part of your life with Barry and have both of you as part of my life with Dan.

Barry:  I really respect you and look up to you.  The career you have built from the ground up is awesome and inspiring.  Thank you for your wisdom, kindness and love.  I also really enjoy your silly side.  It comes out at random times and always makes me smile.  Dan is like you in a lot of ways – especially his willingness to share his emotions and affection.  I see how much you love Wendy and how you still show her how much you love her and I am encouraged.  I can’t wait to soak up all the love I can from Dan!

Rachel:  My new sister!!!  Thanks for coming from Philly.  I know we cut into your work at a critical time.  Also, the photos you took are priceless. Thanks for being an awesome shutterbug!  We had a conversation in the car about how many of the people you are close to have major health issues (Jen, Lesley, me, etc).  I want you to know that it takes a brave and strong person to stay close to people with major health issues.  It’s easiest to distance yourself so you don’t get hurt.  I really love and respect you for the way you treat us all as people.  You inspire me to work hard and try new things.  I can’t wait to see what kind of career you’re going to have – you’re going to rock it, whatever it is.  I’m always here for you even though we live far apart!

Pop-pop:  I love you Pop-Pop!  I know you couldn’t be with us in person on Saturday, but you were with us in spirit.  I’m excited to have you at our vow renewal and reception!  You’re the only grandparent Dan and I have left.  Not only are you a grandpa to me, you’re one of my favorite people.  I know all you’ve been through in your life and you inspire me.  Dan is like you in ways he is like Barry – most importantly his willingness to show love and emotion.  The Demp men really know how to treat women right.   Thanks for passing that down.  I owe you a lot.  You and Bubby showed Dan what true love is like and inspired him to keep looking for someone to share his life with.   Along with my grandparents, you showed me what I want my marriage to be in 60 or 70 years.  I have some amazing role models – you included. 


Maid of Honor
Sarah: I love you my little Elfküm!  Thank you for sharing my special day with me.  I hope it was wonderful for you – your wedding is right up there among the best days of my life.  You did so much to help me – getting the flowers, making cake pops, getting a sheet cake, giving an amazing speech at dinner.  Thank you for those things, but mostly thank you for standing next to me as I married Dan.  I could never have gotten married without you.  You’re so special to me – I already gave a whole speech at your wedding to tell you how much I love you, so I’ll try to keep this brief.  The way you’ve helped me with my health over the years is indescribable.   We’ve been to Europe together twice.  We’ve had countless sleepovers and play dates and school lunches.  We have millions of inside jokes and understand each other in ways others can’t.  Thank you for being my best friend since kindergarten and my sister. 

Kyra: My sweet Kyra.  I love you to bits and pieces.  Ever since I met you you’ve been an amazing support system.  You made me part of your family when I was grasping for a place where I belonged.  Thank you for sharing your life with me.  I loved being at your wedding and seeing how much you and Chris love each other.  It gave me hope.  I love seeing how much you still love each other.  Thank you for sharing your son with me.  I look up to you as a role model for the kind of mother I want to be some day.  I love you like a sister. (Oh, and never give up on telling us silly puns – I secretly love them all). 

LP: I’ve now been working on this thank you thing for more than 2 hours and it makes me wonder how you write every day.  How do you not just sit around playing video games?  What I’m trying to say is you amaze me.  Your writing skills and self-discipline are awesome.  I can’t wait to read your next book.  But seriously, you are an awesome human being.  I love you so much.   I love our LANs and our wonderfully long conversations.  Laughing with you and Sarah on the futon at the bachelorette party is a memory I’ll always cherish.    Thank you for being an amazing best friend and sister.  

Jen:  I felt a strong connection to you even before we met in person.  We’ve bonded over medical drama, but besides that I look up to you and love you.  I look up to you as a mother, friend, sister, and human being.  You have a way of making everything a positive experience and that is so encouraging.  You’re one of the strongest women I know and I’m honored to call you my friend/cousin/sister.  Keep smiling! (You taught me that!)  Also, thank you for the journal.  I can’t express how excited I am to keep a journal of my life with Dan.  It’s going to be a great thing to look back on and give to our children someday.   No matter what, I’m always here for you and love you. 

Best Man
Bill:  So Bill, I guess I don’t have to hunt you down and hurt you.  Dan wasn’t too hung over on our wedding day.   In all seriousness, thank you.   Thank you for volunteering to drive all around town to do last-minute things, to pick up people at the airport, to drive Dan and me around, and to make sure all our crap got back to our house after the reception.  Are you available on June 14, 2014?  Because I’m sure I’ll think of more things for you to do.   I’ve liked you since we first met.  You’re cool, you’re nerdy, you’re fun.  But most of all you’re a great friend to Dan.   So I liked you, but I had no idea what your opinion of me was.  Thank you for your speech at dinner.  You said really kind things about me and I’m really glad you like me.  I’m excited to hang out with you more.  (And I hear Ethan is available as a wingman if you’re looking for one). 

Dag:  I never imagined you would come to our wedding with three weeks’ notice.   I was shocked when Dan told me you were coming.  It showed me how much you care about Dan.  I know he thinks of you like a brother.  I loved getting to know you a little better and can’t wait to hang out with you in the future!  You and Rachel are some of the sweetest people I’ve ever met. 

Chris S.:  My big brother.  Like I told Kyra, thank you for sharing your life and your son with me.  You and Kyra showed me what I wanted in a life partner.  You helped pick me up and put me back together when I was so discouraged with dating.  Your friendship means so much to me.  There was a time when I was so lonely I didn’t know what to do, but you included me in your family and gave me reasons to get out of bed in the morning.  It’s so cliché, but it’s true.  Also, thank you for the roses.  I love them.  Hopefully there will be a cure before you get to 65. 

Nick:  Watching you interact with Luca and Ethan was one of the highlights of the weekend.  You’re fabulous with them.  I can’t wait until you are a dad.  You’re also a fabulous friend.   You gave me hope that I could find a nice, nerdy guy who worked at Epic.   And I did.  Thanks for all the Doritos when I was sad and lonely (and the wine).  You are part of my amazing support system.  Thanks for all the giant hugs. 

Ring Bearers
Luca:  Luca-Bug.  I love you so much.  I’ve loved you since before you were born.  Thank you for being part of my wedding.  Thank you for handing me Dan’s ring during the ceremony.  That perfectly timed yawn was also adorable.  I loved watching you play with Ethan.  You were really well behaved and even smiled for a few photos.   I am excited to watch you continue to grow and to be part of your life.   Remember, I’m a cool Auntie.  I’m always here for you.

Ethan:  You are cute as a button and I love you.  Thank you for handing Dan my ring during the ceremony.  You did a great job!  You were also well behaved this weekend.  I loved watching you play with Luca.  Everyone was really impressed with how smart you are.  I’m excited to be part of your life as an Auntie.  I love you!

Rachel C.: Thank you for coming!!!  Thank you for attending the bachelorette party and for the wonderful gifts; it was like you were inside my head.  I’m going to be honest and tell you I was a little nervous about hanging out with you.  We’re very different and I was afraid of offending you.  But I had a wonderful time getting to know you!  I had so much fun and can’t wait to hang out with you and Dag more.   Both you and Dag are so genuinely nice.  Also, you’re such a firecracker!  Who knew Dora could spit out those wonderful zingers! 

Kevin L.:  Thanks for coming!  I know you being here this weekend was helpful for Jen.  I enjoyed finally meeting you!  I hope you had a good time and I look forward to getting to know you better.  I approve of anyone who keeps Jen smiling J. 

Chris B.: Thank you for coming!  I know it must have been awkward meeting all these people, but you handled it very well.   I love hanging out with you; you and Sarah should come down more often.  We have two guest rooms!   Dan and I will try and make it to Milwaukee more often as well.   And as a side note:  You should finish your masters and then come work at Epic.  And move in next door. 

Meagan D.: Thank you so much for videotaping our ceremony.  We know that Dan’s grandfather will be able to see it even though he was in the hospital the day of our ceremony.   To be able to have him watch it is priceless.   So is having it on tape.   Thank you!           
Brent D.:  Thank you so much for doing the sound at our ceremony.  You’ve always been a great friend to me, and it’s a giant bonus that you know how to hook up and have access to sound equipment.  We really needed the lapel mics and the big speakers.   You faded the music out perfectly and just a GIANT thank you.   We couldn’t have had the music the way I wanted it without you!  Can’t wait for you to do our vow renewal and our DJ our big reception!  Hope to see you dancing around soon! 

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