Learning To Live

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...

We've got another election coming up... although it's not as big as the Obama/McCain election. I've loved this forever. If you haven't already seen it, take a look!!!

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

I watch a lot of YouTube and other videos, and I've decided to share more of them here. Today, my first official Daily Video, is a short documentary on young people with cystic fibrosis. It's called "Dying Young."

Here are some VERY random photos from California... I want to go back. THE CASTRO (soo much fun!) I really need to update my travel blog. Maybe I'll get there this week, or maybe not. 24 minute parking :-) Gansl is sooo cute! New version of Chest PT? SWEET! M&P on the last night. Priceless :-) Vacations are great!!!

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...

Here. Watch it. It broke my heart. "Fidelity": Don't Divorce... from Courage Campaign on Vimeo .

Join my team because LEWIS BLACK said so.

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...

On Friday I am leaving for San Jose. I'm so excited for my first vacation with just friends and no family - not that I don't love traveling with family, but I've never traveled with just friends. I'm basically done packing, and tomorrow I do my podcast interview, get my Lupron shot, maybe stop by to grab a photo with Lauren, and then rest until dinner and games night. Yes, folks, the website CFvoice.com which is sponsored by Novartis does podcasts, and apparently I am going to be featured one month. There will be 3 or 4 podcasts where I talk about my CF - each will be about 5 minutes long. I don't think it's a huge deal, but I do have to go to a recording studio to do this. I'm excited! While on Vacation I will be posting again on http://dancing65rosestravel.blogspot.com - go check it out! I'm afraid time is short this week and I'm not going to get all the things done I want to get done. I want to visit Lauren and Chris, Kyra and Luca, and get...

Today I love: My Brother. He called me to talk about our game :-) I love when he calls me. My Parents. Because they always support me. My Friends. I've had such a great time this weekend - and we've resolved problems and I feel like we're adults, not adults acting like middle schoolers. Honesty. This is the only way to go. AIM Because I'm a better writer than I am speaker - and we all know how much I can talk, so just multiply that and you get my crazy AIM powers. Should I use them for good or evil? I think I signed onto AIM in 7th grade and haven't logged off since.

I was going through all my old emails and I found this joke my dad sent me on the first day of a hospital stay: How may doctors does it take to screw in a light bulb? It depends: 1. Why do you need your light bulb changed? 2. Are you sure it's burned out? 3. I've never changed one before, know nothing about them, but now I'm in charge of light bulbs. 4. Light bulbs are expensive, this is unnecessary. 5. This is a "difficult" light bulb, it's uncooperative. And finally a nurse or cleaning person just does it, because it needed to be done, or the patient just changes it herself! Because that is how it works at UW. I have been making a list of things I think all doctors should do before they receive their license. Here are a few of them. * Give a patient a sponge bath or a bed bath. This will give the doctor a little insight into what it is like for a nurse. Nurses work really hard and doctors should be nicer to them. * Be bedridden and be given a sponge bath ...

Quite a while ago a friend of mine sent me an online article about Peaches and Coconuts. In this article it talked about two different types of people, Peaches and Coconuts. Here is a description of the coconuts: Coconut Reserved, needs time to warm up with strangers Private and public life are strictly separated Social distance determined by profession, social role and status (Sie) Close, very intimate sharing of experiences with friends I think I can be a crazy hybrid of peach and coconut, but for the most part my friends and I are a bunch of coconuts. Although we keep our secrets to ourselves, if someone finds out, we ALL find out. We sure are a gossipy bunch of coconuts. In the end, we're all a crazy bunch of coconuts and I like it.

I got home tonight and my brother is gone. I know we both left around the same time this morning, but when I got home way past midnight I sort of forgot he wouldn't be here. And I'm scared. This blog has turned into me facing my fears lately, or maybe even me not facing them, but complaining about them instead. I have spent the last week with my brother. Almost every minute was spent with him. I would consider moving wherever my brother ends up because he is that important to me - and we have a much better relationship when we are together in person. When Darin and I are apart and I try and call him he seems annoyed. We don't really email or talk online like I would like to - I want to know everything like I know everything when we're together. This past week has been so much fun and I've gotten so much done, it's really how I want my life to be. Basically, I want to be like Will and Grace. My brother is very good at compartmentalizing things and not get...

So everyone tells me I'm one of the strongest people they know. Okay, so I'm strong, but where does that get me? I have no idea what all this strength does for me. Why do I bother? I could complain and whine and just be miserable, but I'd rather not, so I'm strong. I guess. I don't always see myself as strong. For example, my brother has spent the last week with me, cooking, cleaning, helping me with everything I wanted and needed to get done. Which has made me deliriously happy, and at the same time I am now really sad because I realize how much better I feel when I have someone around to help me all the time. Now I'm terrified that he is leaving. How will my laundry get done? What will I eat? And worst of all - I'll be doing everything, so I'll need more naps, so I'll have less time to get things done, so fewer things will get done and they will pile up until I can't stand it anymore and I finally break down and ask for help. I don...

Today is Wednesday. Lately, Wednesday has meant that I talk to BOTH my parents during my awake time instead of just talking to Mom, because Dad has Wednesdays off. That has been the highlight of Wednesdays. But today! Today I still have the lost energy - I feel a million years younger. I feel like I could get a million things done! And here are the things I'm going to try (and pretty likely succeed): *Shower - not a bath, but a SHOWER, with Standing and everything! This is pretty exciting. Seriously, going to make my day. *Go Ice Skating - another thing that will make my day! And EXERCISE! Good for my lungs! *Go through pile on counter and do that stuff. *Work on bedroom - organizing stuff and packing for Cali. *Work on dining room and random stuff in guest bedroom - organizing, organizing, organizing. *UWMBDA stuff - I'll probably type this up while I watch TV/Movies with Darin this evening. YAY! I can't tell you how proud of myself I am. I love times like this - ...

Dear Luca, Happy 5 months!!! I've been wanting to write you another letter, but I only found my productivity yesterday. I can't believe how big you are! I'm sure we will never stop letting you know that you were so big - a very, very big and very special baby. My favorite nickname for you right now is Mr. Big. It's from a TV show that will probably be forgotten by the time you are old enough to understand this, but in the TV show Mr. Big was a kind of "dream man." He represented all the main character was looking for - and to me, Luca, you are that important. I never dreamed that I would get to help raise a precious child. You bring so much joy to my life. It's hard to express in words how much you mean to me, kiddo. I can never spend enough time with you. I like to give your parents enough family time, but if I could have my way I'd have your parents move upstairs so I could see you everyday. I love watching you grow! Every time I see you ...

Today I found productivity. Today I found me. I had been hiding - somewhere deep inside because the depression had taken over. It takes a lot of energy to fight the depression (and medication doesn't hurt). Finally I feel like a person again. I feel like I am back and enjoying things and I have goals and desires and normal worries. I don't have the all-encompassing self-doubt and worry and worthlessness. I no longer feel like nothing I do will get me anywhere. I feel like I can move the world - and that's how I like to be. Today I re-started my quest to make a big impact on the world. I became productive again. Today I set out on a quest I started last summer or fall. I had a bag (think kitchen trash bag) full of papers that needed to be sorted. I sorted them all and threw away most of it, and organized the rest into piles and then put them away. I finally put my decoupage magazine holders to use - I use one for papers and notes I have on things to write about fo...