Learning To Live

Hello. This is my first update from this hospital stay. I haven't been in since last August, which is great! I just got admitted today - I wanted to come in, but seeing how low my lung functions were, they didn't really give me an option either. My weekend was busy - Baking all day on Saturday and then UWMBDA. I love my ballroom dancing. I slept all day on Sunday, and noticed a decrease in my lung abilities. Today, I couldn't breathe when I woke up. So I came in. So far - 7 tubes of blood :-) Maybe I'll try and keep a running count - but they sometimes draw in the middle of the night and I don't notice :-) ~Carla

I'm working on trying to get my shit together. I worry about it all the time. I worry about how much energy I have and how much I had last year. I worry about what happens when I get sicker and can't do what I currently can do. I'm combing through all my old emails - and I found this one written to my dad and a couple other people. I have a hard time saying things. I'm much better at writing what's wrong. I'm having a really hard time dealing with whatever is wiping my energy out. I keep thinking that if I can't figure out a way to get everything done my mother may have to come live with me again. And I don't want that, but I do need help. I hate admitting I need help. I used to be able to do everything on my own, and now I can't. I don't shower as often as I should because it takes too much energy. I never do my hair. I only wear makeup for special outings and in general, I feel weak. Laundry is hard. Dishes are hard. Taking the tras...

Dear World, If there is a box in one of my two parking spaces and it has been there for several days, please don't assume that it is to be thrown out. My box was out of the way and it has a purpose. I like my box. Leave my fucking box alone. I don't go into your parking stall and take away all YOUR boxes, why did you put MY box in the recycling bin??? That's right. I DID go and retrieve said box and put it right back where it had been - where I wanted it. I want my box so that I can put other little boxes in it and store them in front of my car or in my storage space - and it's none of your fucking business what I do with my fucking box. LEAVE MY BOX ALONE. Thank You, Carla

Okay, so I know I need to post about more important things than this, but right now I'm stressed about this. I WANT A CALENDAR ON MY COMPUTER. I currently use Mozilla Thunderbird for my email - which probably isn't smart. I should maybe just use Gmail itself, but I'm not sure. I currently have about 4,000 emails in my inbox (yeah, that number is CORRECT), so I'd have to sort them all and open them all and it'd be a disaster to get my gmail back in shape... but I'd have to do the same thing if I switch to Microsoft Outlook... The reason I like Outlook is because of the calendar. I wand a calendar on my computer that is easy to use, has pretty colors for different kinds of events (like UWMBDA is all purple, babysitting blue, doctors are RED, and other is Yellow). Ideally I'd like to be able to sync it with the iPhone, because that's the whole reason I'd get an iPhone - so the internets and my day planner are with me at all times and I can carry a s...

Today is my brother's 20th birthday! 20 years ago today I wanted Apple Juice. That's what I remember. Happy Birthday Kiddo!!! Love you!

Wait for a moment, this is a good one. Today, I, Carla - queen of "I don't want any of your bullshit drama" - created drama. I don't want to talk about it anymore. Because if I pretend it will go away....

Tonight was a fun-filled evening, and I had a pretty good day, but I thought I'd take the opportunity to fill in my thoughts on certain aspects of my Friday. 10:30 am: Wake up "Shit, I have to leave in an hour for my appointment." 10:45 am: Nurse calls "Shit, I don't have time to eat breakfast." 12:15 pm: In with therapist "Shit, I have nothing I want to talk about." 12:30 pm: Complaining about a person I'm not getting along with to therapist "I can't believe he just suggested that I 'teabag' her... but the idea of her receiving random tea bags in the mail everyday is amusing." 1 pm: Arrive home "Shit, breakfast time and then nap." 4:30 pm: Wake up "Shit, I don't think I can get out of bed. Shit. Must take shower, get dressed and be downtown in 1.5 hours. Shit. I really don't think I can get out of bed. Must take Tylenol. Must get out of bed. Ow." 6:10 pm: arrive late, walk from Union to...

For your enjoyment, more than one daily photo because I couldn't resist!!! Yesterday Kyra and I took Luca to the park :-) Grass! It's new and fascinating! Mr. Big This is possibly one of my favorite photos ever. My car hit 25,000 miles as I pulled into the garage tonight! Ah, Spumie, you're getting old. (Yes, my car's nickname is Spumie - full name La Espuma, which means Seafoam).

I love my baby brother with all my heart. He's one of my favorite people on the planet. He knows how to make me laugh, make me stop crying, and just what to say when I really need him. He's *FABULOUS*! Just to prove it, here's an excerpt from the conversation we had online tonight at 1am: Carla: cuz you better not be smoking... I plan on taking one of your lungs someday Darin: no of course not Darin: take it away Carla: i can have your lung? Darin: maybr well see Carla: part of a lung? Darin: sure why not I had a hard evening tonight, and it was just what I needed to hear.

Wouldn't you think this was some awesome piece of modern art? I'd frame this photo and hang it on my wall. It's actually THIS . Maybe I shouldn't put one on the mantel?

I am reaching for something that isn't there. I'm grasping at straws. Climbing a never ending stairway. "Rayando el Sol." "Rayando el Sol" is the title of my favorite song by Maná - my favorite of all the Hispanic/Latin music, and right up there in my favorite bands of all time. If I didn't love so many songs, I could say with more certainty that "Rayando el Sol" is my favorite song. Translated it means something like reaching or scratching for the sun. I've been meaning to write this post for a long time, but I haven't had the words. I still don't know if I have the right words, but I'm going to try. So grab yourself a candybar, sit back, and get comfy because this is going to be a long post. It's one of those posts that means a lot to me - whether or not anyone ever reads it. I'm not going to give up. I'm not going to stop hoping that someday people who don't have CF will understand me. I'm not goi...

So I'm having difficulties uploading video to blogger. YUCK. So that will be up whenever I get it to work.

Mr. Big - son of my friends Chris and Kyra :-)

I looked for one button on eBay - the one that said, "Your Smoking Hurts My Lungs," because I missed it so much. Now, a week later, I have more buttons/pins that I would ever know what to do with. I overdid it a little. I overdo most things. That is the story of my life, in buttons.

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...

Dear Appetite, Please come back. It's weird being up for five hours and to still not have eaten anything. I have lost enough weight recently, thank you very much. I have also been more active since returning from California, so I would assume that I should be eating fine. Where ever you went, Appetite, please come home. CF girls like me need to eat lots so we don't lose weight, and it's hard to eat lots without you. Thank You, Carla

I fail at life less now that it is later in the week. Still no bread or milk. Hoping to change that today. Finished one load of laundry - been a long time since I've been well enough to do that, but now I feel like I need a nap before my shower. BOO. Tonight is the CF Benefit dance, and if all goes according to plan, I have just enough energy to get me through and I will crash tonight and sleep through tomorrow.

Uber Fail. I don't know why I even attempt anymore. Every time I try I get outsmarted and fail. I hate laundry. Yes, my laundry outsmarts me. Shut up. I started a load of laundry on Tuesday morning because I was feeling really good. I had done the dishes and thought "Hell yes! I can do some laundry!" And tonight - as of 11:40 pm on Wednesday, the laundry is still in the washing machine. Fuck. I will probably move the whole load to a laundry basket before I go to bed, but I'm pretty sure the whole load needs to be re-washed. And I get winded putting the laundry in the washing machine. Oh, and I'm out of Bread AND Milk. Uber Life Fail. ...Let me know if you love laundry, or me, or both - both would be good. Then you could come do my laundry and tell me I'm not a failure at the same time. Or tell me I'm not a failure while I take an Uber long nap. And tell me again that I'm not a failure when I wake up four hours after I meant to wake up. And ...

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!!!

I hate that the snail mail only comes once a day. I have mailed more than 140 letters in the last 2 weeks, and 24 hours is just way too long to wait to see if I have new mail! I get new email every other hour - why not new snail mail?