Tuesday, March 31, 2009

CF Update

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 love buttons.

If you ever find one that says, "Your Smoking Makes My Lungs Hurt," I will pay you top dollar for it!!!

<3 Carla.

I think I'm going to go run around the block to burn off this extra energy. That, or I'll store it and harrass more businesses from my hometown tomorrow. I KNOW I can get more people to say yes if I'm persistent. And what harm does persistence do? NONE.

P.S. Lauren, You're my favorite and we need to hang out more because you crack me up.

You Can Vote

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!!!

Monday, March 30, 2009

Button, Button, Who wants a button!?!

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,

Daily Video

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."

Sunday, March 29, 2009

Photo, Photo, Photo :-)

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!!!

Busy Week

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 wrong with them. *Le sigh.*

I may have to skip something social - like MST3K night or Games night, mainly because I'm going to need sometime to rest before the benefit dance.

This year the decorations are taken care of, but I still need to see if I can get a CF banner, and I need to get the gift certificates to raffle off - and re-do the raffle boxes.

BRING IT ON. I love busy weeks (even if I have to take lots of naps to get through them)!

Saturday, March 28, 2009

Broken Heart

Here. Watch it. It broke my heart.

"Fidelity": Don't Divorce... from Courage Campaign on Vimeo.

Wednesday, March 25, 2009


Join my team because LEWIS BLACK said so.

Monday, March 23, 2009

Welcome Home

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 see it properly. It's dumb here.

Emily's Future.

Saturday, March 14, 2009

Lauren and Carla... some pretty Lucky Ladybugs

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 system they have. I had outlined the entire support system I have in place, and got asked the question, "Do your parents have a similar support system?" And I laughed and then said, "No." Hopefully the laugh won't be on there - and it will be edited in the way where I say that I wish my parents could find some better support. Because I said it, and I mean it.

Currently I am in San Jose, California with friends and having a blast. After re-telling what I did Thursday, I am surprised that I haven't collapsed from exhaustion. Yet. Well, there is always Monday.

Hop on over to My Travel Blog to read more!

Things here may be a little light until I get back from California.

Wednesday, March 11, 2009

Do You Know The Way?

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 my letters to businesses out, but it might all have to wait until I come back. Oh well.

At least I have a new PRINTER that works!!!

Sunday, March 8, 2009

Today, I love.

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.

Doctor, Doctor

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 or a bed bath. This will hammer in how humiliating it can be to be a patient. They will see that the patient feels helpless, trapped, and weirded out because some stranger is bathing them. Because I really love it when I feel like crap and a stranger is wiping my ass.

*Apply for Social Security Disability. And then receive the denial letter, and file the appeal. Repeat several times until you get accepted. This shit is HARD. Even for someone who graduated at the top of her high school class it's confusing. Try imagine doing it if you have a mental disability or just an IQ lower than 130.

*Pretend you are on SSI and based on what you would be given, try and live off of that money for a month. And then realize you don't have co-pays either.

*Have someone try and start an IV on you and fail 12 times and see how happy you are when they want to try a 13th time. Because this happened to me.

*Spend the night in the hospital. You have finally fallen asleep in the hospital bed, and then two hours later have a staff member come in, turn on all the lights and ask complicated questions. Extra points if they draw your blood at 5:30am. My point is to show you I'm not "difficult," I'm tired and grumpy because YOU woke me up.


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:

        • 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 getting too upset. He mentioned that he learned to do it when I was in the hospital so much while he was in high school. But sometimes I wish he would call me a little more often, or we could talk while he's at school and not just during our marathons of fun during his breaks.

I wish my brother were always on break so he could take care of me full time.

Things are hard, and right now I'm angry about it. So upset in fact, that I have been picking (in case you aren't up-to-date, I am a picker. It's like a cutter, but I use my fingernails to harm myself. And no, cutting them doesn't help. No, covering the mirrors doesn't help. I will do it in my sleep and I get so desperate to cause myself physical pain that I will use other instruments and rip down the sheets that cover the mirrors - I'm in therapy for this. Have been for nearly three years now). So those big giant wounds that are poorly covered with makeup in a vain attempt to not look like some crazy freak? Yeah, I did those to myself. I'm stressed out.

So, my brother is gone. And I'm scared how I will feel this week all by myself. But I've only got 6 days until I leave for California - and I have a HUGE packing crisis!!! I have to pack for all-weather, AND take a towel. Let's spell this out. S-T-R-E-S-S-F-U-L.

Darin helped me pack most of my stuff, but it's going to be a crazy whirlwind week - I've got an interview (more about that later), and I want to do lots for my fundraising, and then I'm going on VayCay.

Vacation with friends. It's the first time I'm going without a parent or someone who really deeply understands my health needs - and I'm FREAKING out. I can barely sleep because I am worried that we are not well planned, that my friends don't know what they've signed up for, and that I'm going to get left behind in the airport or on some street in San Francisco because pushing me uphill is just too much work.

I'm excited, and terrified, but mostly excited.

I wish my brain would stop spinning, and I wish I had more confidence that I can go back to living without my brother being here. I'm still in shock that he's gone.

Saturday, March 7, 2009

Surreal Strength

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't like asking for help from people other than family members - and even with my immediate family I wait until I'm pretty desperate. Maybe I don't want anyone to think I'm weak in any way.

But really, I am. I'm weak.

Wednesday, March 4, 2009

Just another Wednesday

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.


I can't tell you how proud of myself I am. I love times like this - when I am motivated and have energy - the two combined are very rare. :-)

Mr. Big

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 do something new it brings joy to my heart. I can't believe you are already sitting up!

I really want you to know how fabulous your parents are. They love you very much! And I love them very much - and they are the best friends anyone could ever hope for. Your parents are VERY special people. I love seeing you light up when your mom or dad return home after they've been gone. I'm also very glad that you are sleeping better - for awhile there I thought your parents might just fall over from exhaustion! But I know they don't mind being tired too much because it means they are spending more time with you.

Your mom and I have discussed so many things we will get to do when Spring finally arrives. We'll take you for walks in the stroller and go to the Farmer's market. And this summer we'll go to Concerts on the Square and go swimming - all new things for you!

I love you so much, Mr. Big. I am truly blessed to have you in my life.

Auntie Carla

P.S. Here is a video of what I like to call "Luca's Party Trick."

Tuesday, March 3, 2009

Finding Me

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 for my book or the blog. There are so many I think I'm going to try and take one daily and expand on it or just write the crazy thing I jotted down that I now have no memory of.

My desk is clean. I made the bed in the den. It nearly killed me but I did it. I cleaned the secretary off (so it closes again), and the living room is very nearly back to looking nice. It's going to take a little more work, but it's almost there. The den needs a little work too, but not much.

I need to put away my IV stuff, but that isn't too hard.

Last night I poured meds and filled out a survey for a study I'm in - things I've been wanting to do for WEEKS.

I can't believe I found the productive me - I thought maybe I was lost forever. That's the way I feel anytime I'm having problems mentally. The mental problems are the worst - on a really bad CF day I can get out of bed and do something like watch TV, but on a really bad depression day I can't get out of bed and I can't watch TV, all I can do is sleep.

I have a headache, but I think it's because my brain isn't used to this much activity. That, or my sinuses hate to work and the mucus is in there rebelling. From the pain, my guess is they've got a riot going on and someone set off some teargas and it's all chaos. I just hope the police arrests the motherfucking mucus and sends it on its way out.

I'm going to go back to rolling yarn into balls now - something I've finally gotten around to.

Baby, I'm BACK.

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