Learning To Live

Great Strides is Today!!! I'll be walking this morning with friends and family. We raised over $5,000 this year. Not bad considering our team is significantly smaller. This is for Eva, Janel, Laura, Lauren and all my other CF angels. This is for Lauren, Talana, Tabitha, Tricia, Angie, and all my CF Friends. This is for all the CFers who are little kids who really need a cure so we can spare them all the pain and suffering we have known. This is for all the CFers who have ever been sick, who are still sick, or who will ever be sick. And this is for me. Because I am on my way to learning to live my life - and I've spent ONE YEAR out of the hospital. And NINE MONTHS without IVs.

Hello everyone. First, I would like to announce that TUESDAY is $5 TUESDAY - meaning we try to get as many $5 donations as possible. You can donate HERE . Or click on the box at the right. 2nd, the last two days have been kind of rough. I've spent most of both days sleeping, except for last night when I couldn't sleep and I spent the night watching "The West Wing." These last couple days I've hated being alone. Even more than usual. I've been in a lot of pain that can't be explained, and I think I really would like some company to keep my mind off of it sometimes. That, and I'd like someone to cook for me since I have lost 10 pounds in the last two weeks. Did I mention that? Well I have now. So this evening I broke down and bought out the Panera so that I can have lots of yummies to eat over the next several days. Lots of yummies with lots of calories. I hate losing weight and I hate trying to gain weight. Both are hard. The Dance Benefit f...

I love selling buttons, and apparently I love buying them, too. It's horrible. I'm an addict, and I found the one that says, "Your smoking hurts my lungs." Too bad I found it on ebay where all the cool vintage buttons hang out. 1960 Kennedy button? CHECK. British Flag button? CHECK. Mounds of Rocky Horror buttons? CHECK and DOUBLE CHECK. Can't wait until my mound of buttons starts arriving at my door. I'll be occupied for like, a whole hour maybe. And you should buy a CF button to support GREAT STRIDES!!!

Tonight was the CF Foundations annual update thingamaggiger. I learned not much new, except who I should call and complain about the adult clinic to. But last week, it was announced that VX-809 is now in phase two clinical trials. Which is cool, but I decided I want some of that shit now. So my plan is to acquire some. Now. I will keep you posted as to how this goes. After the update thingy, Lauren (my beautiful co-team leader for GREAT STRIDES), Erin (our beautiful nurse from the hospital), and I went to Perkins. And since Lauren is the greatest, we convinced our waiter to buy a button. If Sean can buy a button, than YOU CAN TOO!!! :-) Buttons are SUPER fun. I really need to find another one that says, "Your Smoking Makes My Lungs Hurt." I loved that button - but mine broke. I found it at a Flea Market type thing in my hometown, and now, thinking about that table of buttons is making me drool. Some where I have three buttons and each one says "HO." I lov...

I'm selling buttons. :-) Here are photos of the designs (I know the photos say 10 in a pack... those are the only photos we could get of the buttons. I'm selling them individually). $10 per button - all goes to the CF Foundation!!! Let me know if you would like one (or two, or 10 or 30!), and I can mail them to you! Thanks and Love, Carla

This week is going to be INSANE. I have my family and friends letters for Great Strides to mail. I have plans in the evening EVERY night this week. I have 60 businesses to make follow-up calls to to see if any of them are interested in pin-up campaigns or collection jars. I have to make said collection jars, get said pin-ups (if any business is willing to participate. This is a big IF, but hey, it doesn't hurt to try). Tuesday is the Annual CF Update Meeting Thinga Magiger (that IS the official name according to Carla, in case you were wondering). Lauren and I are hoping to sell some buttons. Friday is the CF Benefit Dance hosted by UWMBDA. If you're interested (and you should be, it's a BIG BIG BIG deal), UWMBDA.org has the details. I need to get my car checked. I was driving in snow (I hate March, FYI), and I was at a round about, fishtailed, hit a curb (I thought I hit a flowerpot, but just the curb), and I think my tires are out of line.... there is something w...

I am home from California. I loved California - and I don't know if it was California itself, or if it was because I was with my amazing fabulous friends. I owe my friends more than I could ever give them - they carried me around California, through the airports, and made me smile when I was in a bad mood - or freezing to death ;-) So now it's back to fundraising (lots of letters to mail, events to plan, etc.). GREAT STRIDES 2009... Lots of fun, more money raised than ever, and just an all-around good time! Click here to join my team. Click here to make a donation. And I know this will look funny, but it needs to be posted here. This is an amazing montage. Watch it. It's the reason I'm fighting so hard. These little kids with CF make me want to be a better person. They make me want to fight harder, work longer, be a better CFer, and be a role model. I want to suffer through many things so that they don't have to. Better yet, just click on the link so you can ...

This is our 2009 Great Strides promotional photo for the Lucky Ladybugs. I know, we both look like death, but Lauren's in the hospital and I was busy getting ready to leave for California. The day before I left Lauren and I had our Hospital Photo shoot, I packed and did some errands, spent the afternoon with Luca and Kyra, went to dinner with Chris, Kyra and Luca, and made an appearance at games night. I did all of this AFTER I recorded my podcast for CFvoice.com. To record the interview that will end up being several podcasts, I had to go to a professional studio. I sat on a couch with the microphone and mesh screen in front of me. I had a ton of fun doing it and talking candidly about my CF. I enjoyed saying exactly what I wanted to say without having to guess someone's reaction or filter it to prevent someone from the whole truth. I talked about many subjects, but I know the one that could come back to bite me in the ass is talking about my parents and the support syst...

I think lots of thinks. And sometimes my thinks get all kinked and then it's hard for me to think. This is one of my favorite montages ever. It was made by the mother of a little girl with CF. The mom is an amazing person. She and I email regularly and I love the advice and hope she gives me, and I only hope that in seeing me still alive at 22 it gives her some hope for her little girl. I may be sick, but the road for Emily hopefully will have fewer bumps. More treatments to lengthen the life of a sweet little girl. I think that if you are conflicted at all about the Great Strides walk or the need to raise money for Cystic Fibrosis Research, just watch this montage and you will see the pain this disease causes. I wish I could do an entire montage to show you how much pain my parents have been through. I wish I had photos of them when I have been in the hospital, when they are arguing with doctors trying to get me the best care. I wish I had a recording of my favorite teache...

Tonight I am working on things for the GREAT STRIDES walk in May. My team has multiplied and grown so much in the last year it is unbelievable!!! Last year we raised just over $6,000... and THIS year, our goal is $25,000 - and we're right on track to meet that goal!!! If you would like to help us reach our goal you can donate HERE . Thanks, and soon you'll be seeing some things I've been working on for HOURS!!!

Tonight I am sentimental. I am missing a great number of people who have influenced my life. Some are gone and are now angels, and some just live too far away, and some I saw a couple days ago, but I want them to know how much they mean to me. I found this photo, and it made me miss college. It made me miss the days when I lived in the dorm. It made me miss all that energy I used to have. And this photo came from a CF Mom. You have no idea how much I miss my pediatric doctor. This is a photo of a real doctor. A doctor who loves what he does and who loves his patients. I miss that. It takes a village to raise a child, but it also takes a village to help me get through this fight. And tonight, I feel like part of my village is missing. I know my angels are with me, but I wish sometimes I could give them a giant hug. Tonight I am making my montage for 2009 Great Strides. It will be called, "My Village." I am including photos of all the people who have helped me get wher...

So I had an idea just now to put together a panel of CF "experts" (parents, siblings, spouses, best friends, and CFers themselves) and set up a blog or a place where people can ask questions and have them answered. Seriously, ask me anything you want to know. Second part of this idea - use it as a way to raise money for Great Strides... meaning have people donate, and then we'll answer questions... Work in progress, maybe I'll get this done :-) Let me know what you think - or in the meantime, I will be answering questions via this blog. Shoot!

We have to start thinking about GREAT STRIDES 2009!!! It'll be here before you know it!!! So here are some photos from GS 2008 :-) Bucky says, "What?" Me and Bucky! The Camera Trio! Me and Josie - This is me talking to her about her colors. This the the patented "Carla talks to children" face. Me and the best WI Director, Tracy :-)

I had a nightmare. I didn't remember it until later today, but something was bothering me all day. I woke up and ate breakfast around 8:30, and then went back to sleep because I was tired, and when I woke up the 2nd time all I remembered was trying to name all of Santa's Reindeer. You know Dasher and Dancer and Prancer and Vixen. Comet and Cupid and Donner and Blitzen. And Rudolf. Is that how you spell it? I don't care. Anyways, this afternoon I was thrown back into the nightmare I had had earlier, and the nightmare is probably what woke me up the first time. It was one of my PTSD nightmares. The scary ones where I am in class and then running and trying to get him fired but no one will listen to me. I'm demanding to speak with my guidance counselor and she's not around or she's on the phone, so I talk to someone else and no one will listen and I'm being chased and I have that horrible feeling. The horrible feeling I can't get away from. I don...

Great Strides 2008 - aka a day that made me smile. Bucky Took this one: Idk who took this, but look, I'm happy. Really happy because there is a small child in my arms: Happy because these are my people: And this is Tracy - the best CFF director ever! There. I'm happy. You satisfied?

Because some idiot posted this: "Jesus christ. Nothing makes you happy, like ever. Suck it up woman. " The walk did make me happy. I just came home and felt really crappy from all the things I had done today - way too early in the morning - and well, I don't know if you've seen any of the photos, but I AM smiling and HAVING A GOOD TIME. And just for that... my next post will be photos from today to prove I have the ability to smile. I loved being with the people who love me. I loved walking with them and joking with them. They are great people. And any time I get to spend with Sarah Lynn is a good time. I'm going to build a boat, and take Darin and Sarah Lynn hostage and move them to a desert island. Because sometimes, they are the only people in the world I want to spend time with. Sometimes, but not today. Today I got to spend time with little kids - and hold Josie and make her giggle. "Is Josie going to ride the bus" "Yes!" "Is...

Last night was the Dance Benefit for my Great Strides Team - it was so amazing. I didn't feel amazing, but it was amazing. We raised more than I had hoped - well, honestly I had no idea how much something like this would raise - but it was awesome. I got ready early in the afternoon and used all the energy I had. Every ounce of energy I had left was spent on last night - getting ready for it and being there. I wore a pretty dress and pearls. My hair took longer than I wanted, but it was good. My makeup looked surprisingly good - I usually don't wear that much makeup, except for Showcase. But this was special and I wanted to look good in the photos - especially since I plan to put together a montage of them. I only got to dance 4 dances - two were the samba line dance, which is always fun. I danced the foxtrot with Brent, and a little merengue with Lin. Thanks for helping me dance when I really didn't feel like I could do it. Thank you so much to everyone involved. ...

Today someone else donated to my Great Strides campaign. Thank you. I don't yet know who it is, but thank you. My personal goal is $2,000, and I currently need about $700 more to reach that goal. Our team has passed $3,000 (which was our goal for last year), but our goal for this year is $5,000. Every little donation helps. "Money buys science and science buys life." To help buy my life, click here .

So here's the website for the CF Benefit dance. Here's the site to donate or to join my team. (It's not too late to join and to do some fund raising of your own! It's easy - ask neighbors, people at work, friends - send out an email - it's great!) I'm really psyched that it looks like we might make my team goal of $5,000 this year, which would be amazing!!! I'm so excited to see other people excited about the walk - this winter has been really hard for me health-wise. I was sick from November to February and then FINALLY felt better and my depression escalated to the point where I could no longer do anything or care about anything - so to see other people stepping up to help me meet my Great Strides goal in ways they never have before is brilliant!!! And yes, I have some level of skepticism about the new drugs coming out (VX-809 - Carla's Drug) because they are still in very early stages. But hopefully the money raised will help make sure those dru...

So this Great Strides thing always picks me up every year - it reminds me that people care, blah blah blah, but THIS year. THIS year I feel LOVED. Very very loved by my dance family. My dance family - they are family to me, the people I am closest to and see most often in this town. So, one of the members of this dance family convinced the UWMBDA council (which I'm a member of, I just can't make the meetings b/c they are scheduled on Sundays between 2-4 and my nurse comes then) to hold a benefit for CF. They did this without me knowing and yesterday Brent surprised me. It's honestly the nicest thing anyone has ever done for me. It's not that hard since we have weekly dances anyways, and they just decided to donate the proceeds from one of the dances to CF - and now I'm working on getting things to raffle off. Gift certificates and the like. It's that someone thought to do this for me... I feel so loved. I found this out, and then right away had to leave ...