Monday, April 27, 2009

Hospital Time Again

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

Sunday, April 26, 2009

From 7/13/2007

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 trash out is hard. I want to organize everything but I no longer have the energy. I used to spend most my free time organizing things - rearranging clothes, sorting through all my belongings and finding a better way to store them. I like doing it, but I don't have the energy to do it. When I try I have to stop because it's just too hard. So I've been reduced to sitting at my computer watching TV all day, and I hate that.

I keep thinking how much easier things were when Darin was staying with me, or when my parents are staying with me and the last thing I want to do is admit that I need someone to live with me to help take care of me. I want to be independent, but I may have to suck it up and admit I can't do it alone.

I always feel really guilty asking people to help me, and this is why I've been out of sorts lately.

I think I'm just going to stay at home tonight and think about what I have to do... whether I admit to my parents that maybe it's time we hire someone to clean once a week (because hell if I can keep up with the dusting and the vacuuming - I can't even take out the fucking trash).

Or if Dad has to come down every other weekend to help me clean up, or if I can work out a schedule of people here who could help me. I don't know.


It's amazing how little things have changed. I still worry about all of this. I still want to be organizing all of my things and making my living space look perfect. I am still afraid my mother will have to come live with me. I'm still afraid to talk about this or ask for help. A lot of good two years has done...

What have I done in two years to make this better other than worrying about it??? Nothing. I just don't know what to do.

Why I Hate The World

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

Friday, April 24, 2009

Email and Calendar

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 smaller purse.

I have dowloaded Mozilla Sunrise or whatever it's called - Sunbird? I don't know - whatever their calendar thingy is. And neither it nor Thunderbird will sync to the iPhone. GAR. But I don't think Google Calander will sync either... Does anyone know this for sure???

I'm so confused!!!

Maybe I should just continue to carry a huge purse, my giant day-planner with all my med and doctor info in it, and one or two notebooks for ideas... because that's what I'm doing now. *Le sigh*

Tuesday, April 21, 2009

Happy Birthday, Baby!!!


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!

Saturday, April 18, 2009

Baby Did A Bad Bad Thing

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....

Things You Probably Don't Know

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 cafe.
"Shit. This walk is longer than I thought. Fuck off, I'm not in mood to deal with you people and your healthy lungs. Fuck you for picking a restaurant that is on the 2nd floor and far away."

6:15 pm: Arrive at cafe
"Shit. I can't breathe. Shit. I'm not hungry."

6:55 pm: Suggestion made that we run to the union to make it to the dance lesson on time.
"Shit. Well, fuck you, I don't run. I barely walk. Fuck you and your healthy lungs."

7:01 pm: Walking down the stairs - two persons complaining about legs being sore from working out.
"Shit. There is no fucking way you are in as much pain as I am and I'm never going to say anything about it. Because that's not what I do. I feel like I've been hit by a truck."

7:10 pm: At Union - showcase for the dance team I got kicked off of last year.
"Shit. I don't want to be here. God Damn It. They still use the donation box I made. I don't want to be here. God Damn It. I can't believe this. I don't want to be here."

7:59 pm: Watching the few attendees of the dance mingle and interact.
"Hahahahahahaha. There is absolutely no one here. Karma's a bitch. I love that the team that kicked me out can't get people to come to their showcase. Schadenfreude, bitches."

8 pm: Standing around doing a lot of useless nothing.
"Shit. They want to take their car and I want to take mine. I hate riding by myself. I feel left out."

...We arrive at the place where we're going to watch the dueling pianos show, and this show is probably one of my favorite things to do EVER. I LOVE it. I know all the songs and sing along and it's a crazy good time. I'm in a much better mood, and yet, I still can't help these thoughts:

11:24 pm We're discussing when we should leave - they want to go, I don't. I call them party poopers, and one of my friends says, "Well some of us don't get to sleep all day."
"Shit. I'm going to cry. Breathe in. Breathe out. Breathe in. Breathe out. I don't think he meant it that way, but FUCK, all I've ever wanted was a career and enough energy to do anything but sleep through a gorgeous day like today. Focus on the music, Carla. No crying. No crying. No crying."

11:35 pm My friends across the table are falling asleep and I want to stay until 2am.
"Shit. The one night I have energy to last the whole time and I want to stay and just be normal, and my friends poop out on me. Are you kidding me? This is my favorite outing, I'm having a fabulous time, and you want to make me leave. Really? You can't let me feel normal for an evening? I'm going to have to give in and be a nice human being and take them home. Shit."

Today I slept all day except for the hour I was at the therapist. I wanted to be outside in the fabulous weather. I finally got out of bed and showered. I made it to dinner out of breath, but I made it. I forced myself to eat. I forced myself to be civil for the hour we were at the dance when I really just wanted to destroy everything. I got to go to the event I truly love - all my favorite music and singing along and it doesn't take a ton of energy.

I'm really glad I found the energy to go, despite how awful I feel. Awful in the every part of my body hurts kind of way, not in the my lungs are so bad I need IVs kind of way.

And apparently, the dialogue in my head really enjoys swearing.

Goodnight.

Daily Photos

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).

Baby Brother

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.

Thursday, April 16, 2009

Photo Art


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?

Wednesday, April 15, 2009

"Rayando el Sol"

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 ManĂ¡ - 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 going to stop trying to make the doctors and nurses understand. I won't let them get away with not treating us the way we deserve to be treated. I won't stop raising money for a cure. I won't stop sending emails to everyone I know and everyone I meet trying to get them to care about my cause, my life.

No matter how hard my fight gets, no matter how much pain I'm in, I don't want to give up. I won't give up hoping that I will get better tomorrow; if I wait long enough I will feel better. And I'm not going to give up hoping that someday they will find a cure for this awful disease.

I don't like when people complain about little things because I don't complain about little things. I don't like when people give up because I don't understand how anyone could give up so easily when I'm fighting for my life. And I don't like when people can't see a situation from someone else's perspective because all I have is perspective. I don't know what it's like to be normal.

Tonight I watched the final episode of "ER." Just like the show began, it ended brilliantly. It was sad. A lot of death, which meant a lot of me crying. The saddest for me was the death of an elderly man's wife. They had known each other 72 years and the daughter explained to a nurse how she never got along with her mother and that she had been mean but she had cried on the way to the hospital because, "What does it really matter now?" My grandmother turns 90 this year, and she and my grandfather will have been married 70 years in September. I can't even imagine 70 years, let alone being with someone that long. I've known since I was very young that 70 is a number I'm not going to see. But somewhere in the back of my mind I still have hope that I will live to be the crazy craft lady in the nursing home. Daring my friends to join me in wheelchair races and sneaking candy that I, a diabetic, shouldn't eat.

The situation in the show reminded me so much of my family. The grandparents' age, the sick grandmother and the crazy mother - somehow it hit home. There were other things in the episode, too, like the return of Dr. Greene's daughter. But mainly, I was crying because I know my mother has given up hope.

I think my mother gave up hoping a long time ago, but it has hit me harder recently. Sure, she cancelled my 17th AND 18th birthdays and refused to wish me happy birthday either year, but I thought maybe she's just weird. I could say outloud that I knew she did it because she didn't want me to get older because each year older is closer to death. I know she has always been skeptical about the CF Foundation because in 1989 they promised a cure within 5 years and now it's 20 years later and they are saying "we're really close." So I understand her hesitance to believe them - but to give up all hope? This time the foundation has graphs and charts and I really want to believe them that this is going to help, that it's going to make us better and prevent the kids from getting sick.

My mother has given up all hope. And recently she's not afraid to tell me. First she told me that fundraising is useless because they will never find a cure. She's said that before, so I just tried to ignore it. She said that she won't donate this year because it's no longer her responsibility; it's the responsibility of "the new parents." Every year she says she won't donate, and every year she does. But telling me it's no longer her "responsibility" really stung because I feel that she doesn't care anymore. She thinks I'm going to die and that is that. When I die will she donate in my memory?

A couple weeks ago my mother said something that convinced me that she has absolutely no hope at all. She thinks I'm going to die soon. She and my dad were on vacation in New Mexico and Mom decided that it'd be a nice place to retire. She told me this, and I asked, "What about me?" because I really like where I live and I depend on my parents for a lot of support (and they do my laundry, too). I was shocked that she would think of moving so far away since she worries if I don't call every day. Her response was, "Well, if you're still alive I GUESS you can come with us."

Immediately the waterworks flowed from my eyes and I couldn't make it stop. It hurt so deeply I didn't know what to do. I quickly ended the conversation with my mom and still sobbing, called my little brother. I tried to take his sage advice. He told me to ignore her. I find it hard to ignore the person who is supposed to be my biggest support and how she has already decided I'm going to die.

My brother's other wisdom came out, "Well, I'm off to play "whose mother is crazier" with my friends because I like winning." So I've played the game with my friends, and it doesn't do much for me.

Is my mother right to doubt the CF Foundation and the researchers? Am I a fool for being so hopeful and working so hard because I really want those medications before I need a lung transplant? I want the graphs and promising studies to be the truth; does that make me stupid? Am I silly to want something that might never happen? Is it awful that I have my own belief system so that I can pray for a treatment to keep me healthy enough so that I won't need a lung transplant? Does hoping hurt more than accepting my own fate?

But what would I be without hope? I would be sad and angry. I wouldn't have a purpose for living. My purpose for living is fighting - on my own against my own cystic fibrosis and with the Foundation for others living with cystic fibrosis.

The question is to hope or not to hope? I choose to hope. I may just be "Rayando el Sol," but at least I have something to live for.

Tuesday, April 14, 2009

Blogger

So I'm having difficulties uploading video to blogger. YUCK.

So that will be up whenever I get it to work.

Videos of the Day

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

Thursday, April 9, 2009

My Life, In Buttons

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.

Sunday, April 5, 2009

Pity, Party of One

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 for The CFF went well - we raised nearly $1,000 (that will be next year's goal!)! We probably could have passed $1,000 had I been feeling better and had I been able to work the table. Not that my friends didn't do a fabulous job. I am so grateful that I have such wonderful friends who are willing to help me out when I feel crappy. Because I felt really crappy. I had to go to a lounge and take a nap. Boo.

Let's see. I know I have other things to complain about. Well, I have lots of things to complain about in regards to the UW Hospital - the gossip, how the NP doesn't like me, how they think I'm over-opinionated (I'm only have strong opinions about the things I'm right about... like the Vest). The Vest doesn't work for me. I did it for nearly 2 years and my PFTs plummeted. I don't care if others use the vest, I just personally don't like it. I use it in addition to my manual chest pt - but I can't use it alone.

Plus there was a hullaballoo about the disabled parking tag - and I need to get mine renewed. *Phooee*. And there's some emotional stuff going on - at the hospital I feel like they don't care about us and don't see CF patients as people (see the upcoming "My CF BFF" - there will be more details about all of this in that post). And my mother is making plans to move to NM when I die.

It's been a fun few days.

And that was my little Pity Party. I'm done now and READY FOR $5 TUESDAY!!!

Friday, April 3, 2009

Appetite

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

Failure update

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.

Wednesday, April 1, 2009

FAIL.

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 then maybe you should remind me again why I'm not a failure. And maybe you'll also pick up the rest of my crap and do the 2nd load of laundry. I would love you forever.

Button Update

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!!!

Things that Annoy Me

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?

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