Monday, March 31, 2008

Why I Hate the World

My Mother.

That's all I have to say for this evening. HUGE HUGE HUGE fucking news from the CF Foundation, but this is a long long long story, and I don't want to get into it tonight when I'm not clear-headed.

Why I Hate the World

Emotional pain.

It's so much worse than any physical pain I've ever had to deal with. And believe me, I've been through my share of physical pain - pain so bad it makes me grumpy and want to throw things at people. Pain so bad that the pain the pain medication causes is tolerable compared to the pain I had in the first place. This is serious fucking physical pain I've been through.

Pain so bad that having them stick a 1 inch needle through several layers of breast tissue once a month is nothing, having blood drawn is less than nothing, and checking my blood sugar? You mean I'm supposed to feel that? This is the girl who flips fish sticks and chicken nuggets hot out of the oven with her bare hands because it doesn't hurt. I regularly shower in hot water that turns my skin the color of cooked lobster, and none of this is physical pain.

Physical pain is migraine headaches - but I can sleep through those. Physical pain is all the joints in my body hurting every single day, but that's not bad - I barely even notice that anymore.

The worst physical pain is when my sinuses are full and about to explode - literally - expanding so far that they may rupture the membranes and leak into my brain. That hurts. When that happens I need surgery, and then I'm all better. Post surgery doesn't really hurt at all - it's just such a relief.

Emotional pain sucks ass. Why do I have such a high tolerance for physical pain and am a complete wuss when it comes to emotional pain???

Sunday, March 30, 2008

Rationalizations for Just Having Spent Over $200 on Makeup

That's right. I just spent more than $200 on makeup. Oh. My. God. I need to rationalize this.
Lena invited me to a facial party - and it was fun, although I was sleepy, I was excited and I love being pampered and being made to feel like I too can feel like a human being some days. And my skin can also be ever so soft.

I NEED that travel bag for Europe so I don't have to find another toiletries bag.

I NEED that sunscreen/moisturizer for Europe, and if I didn't buy things the way I did, I wouldn't have gotten the travel bag I need.

I need a new cleanser, since the one I have - well, in the last couple months I've given up on washing my face. Showering every couple days is good enough, right? Right. Wrong. I need to actually wash my face before and after I sleep and mush it in with a pile of drool on my pillows.

The mascara was just TOO fabulous to resist! As was the lip balm and the eye shadow and bronzer and and and...

Dear God don't tell my mother how much money I spent on makeup.

Diet Land

I have joined the land of the dieters, and from this point forward I will always have an unhealthy relationship with food, just like every other US Citizen, or at least the ones they show on TV.
I don't think I'm meaning to starve myself, but my body thinks I am and has started to revolt in
horrible ways. Hunger pains, digestive problems, threatening a coup.

I'm really tired of this fucking diet. I think it backfires. The other night I ate 3/4 of a frozen pizza I was so hungry. I wish I could eat like that and still be skinny the way I used to be - well, not quite that skinny. About 10 pounds lighter than I am now (which is my goal to lose before Italy so I can gain it all back by eating HUGE amounts of food there, because food is generally better in Europe. There is nothing like eating in Eruope. I want to move to Europe and just eat for the rest of my life. Of course, because I am a strange American hybrid and not a European gal by birth, the clothing and shoes don't come in my sizes there. Nix that plan.).

But I'm tired of my diet. I try to eat a light breakfast, little or no lunch, and a little dinner. Seriously, I am trying so fucking hard to lose weight, and you have no idea how strange it is for me. Growing up my mother shoved every fatty food my way. Chips, candy, peanut butter, ice cream, pizza, cheeseburgers - all in large quantities and as much as I could fit in my little tummy. This didn't stop when I was a teenager because I was still underweight, but I also had no appetite. Blame those stimulants I was on.

Only a couple years ago I gained weight. I went on the pill, became diabetic, and sat around eating candy all day everyday one summer. Those are the reasons I gained weight. That, and Zyrtec, my allergy med. I have an un-ending appetite with the Zyrtec. It truly is an evil med. Well, no, it helps my allergies and I became an acceptable weight - the only problem is my appetite hasn't slowed since I passed that acceptable weight.

I can't stop the urge to snack. I try to curb it by not keeping crap in the house, but this leaves me sitting at my computer all day, and about every hour I will get up and go to the kitchen with the intent of eating something and only when I've searched the entire kitchen and found nothing suitable will I return to my computer. At least this hourly walk burns calories and I don't actually eat anything.

I walked to the kitchen to get a snack recently and ended up doing this instead:




At least I returned to my desk completely not hungry.

Midnight Thinklings

*Apparently I can't sleep knowing I might have hurt my brother's feelings with something he hasn't read. Damn my mother and her ability to implant thoughts into my head.

*Thank God my mother doesn't do computers. She'd be all over my ass all the time about this stupid thing, saying I'm too "mean" (which is what she told me today when I told her how I metaphorically or hyperbolically said that in a line up of balls (mainly sports balls), my brother could only pick out his own). Man, she's going to hate me when I get published. She already hates reading my book because she "doesn't get it."

*Why isn't my brother answering his phone at midnight? I should call him one, or five, or thirty more times just to make sure he's alive.

Saturday, March 29, 2008

Evening Thinklings

*Today I went to my fourth funeral since September. It would have been five, but I couldn't make one b/c it was in my former hometown. Four of five said deaths have been to people who shouldn't have died so young.
1. My psychiatrist who was so amazingly brilliant. He was in his early 50s and died during a triathlon. I like to call him my "Psychiatric Med Angel" because here on earth he was one of two who could fix me. The other one is my father, who not only fixes me psychiatrically, but in all ways medical.
2. A classmate from former hometown who (if I remember correctly) was 19 and just collapsed. I used dance as an excuse not to go back to my hometown and see all the people I really wouldn't want to see. Not that I don't love some of them dearly, this kid included, but some of them are the reason I don't lay claim to my hometown very often.
3. A friend/mentor with CF who was 45. Had a double lung transplant, was doing okay with that, and then got cancer. Life blows and then you die.
4. My great aunt. She was 87, and the only one who died at an acceptable age. She had colon cancer in 2000, recovered, but got it again recently and died. She was a ballroom dancer, so she's my Ballroom Dance Angel. Did that happen before I started blogging my entire life? You know I don't even remember.
5. Today's funeral was for a friend with CF who was 31 and gave up. He didn't want to fight anymore, which is an okay decision to make when living with this disease.

*Troy, Buddy, you did a good job planning your funeral. I loved all those photos. Why do you think I take so many photos of myself? Because I don't want to be forgotten. I want people to remember how I looked when I was kinda "healthy" and not the way I will look when I get that sick.

*If anyone so much as mentions Jesus at my funeral - or even worse - says that we'll see each other in Heaven, so long as we believe in Jesus, I will fucking rise from the dead and personally strangle said person. Heaven is not an exclusive club. You don't need a "Members Only" jacket.
* Yes I know I'm going to get shit for this, so if you're the one giving the shit, please refrain. I know you think I'm going to hell, and that's O.K. by me.

* Sometimes, I find out someone's real age, and I go "No Way. That person is NOT older than me." I'm the baby - and that's cool, cuz I act (and sometimes look) older than you.

* On the way home - wait not home - I was on my way to dance from the funeral, I looked at my eyes (mainly to check to make sure I didn't have mascara running down my face), and noticed my pupils were little dots! LITTLE DOTS! I haven't had pupils that small in years! Usually my antibiotics and meds prevent my eyes from working correctly (and I'm diabetic so I figure I'll go blind eventually haha), but they decided to work today. Too bad it wasn't a day my brain was working.

*I was worthless at dance practice today. My brain just wasn't there. I left it at the church...

*Which brings me to the church. Usually, as much as I don't really love organized religion, I love churches. They are big and pretty and sometimes old. They have things like stained glass and pipe organs and really awesome art and architecture and I appreciate them even though I would rather cut off an arm then have to get up early on a Sunday to sit in one. This church was a tool shed with nice furnishings. And it was the same temperature inside as out. And it was one one of those evangelical places where they play the music and sing to God as if he cares about their musical talent. Like he loves them better because they get up early on Sunday and not only do they sing, but they sing loudly. It just didn't have architecture or the art or stained glass - but it did have a really huge wall great for projecting those awesome photos of Troy, so they get credit for that. And they had all the equipment to do it, so I may choose an evangelical church for my funeral - but whoever does the talking Will Under No Circumstances Mention Jesus.

*Go ahead and give me shit about all this if you must... but think twice. I'm like one of those monkeys in a foreign Zoo - I have no reason to refrain from throwing shit back.

Why I Hate The World

Stupid People. I mean tragically stupid people.

I went to the pharmacy this afternoon after I had been to breakfast by myself, a funeral and a dance practice. I arrived and groaned when I realized the pharmacist I can't stand was working. I can't stand her because she is stupid.

Everyone at this pharmacy knows me. I am in there at least once a week. They know me. They know my name from running the 20ish prescriptions I get filled every month. They Just Know Me. End of story.

So I walk up to the counter and the woman, we'll call her Stupid, says , "Be with you in a moment" in her foreign accent. I seriously doubt this woman is a pharmacist trained in the US because her English is THAT poor. Well finally after several moments (and I'm exhausted and want to cry from exhaustion and I just want to sit and I have to keep standing) Stupid asks, "What's the last name?"

I give her my last name and the first two letters, in case she can't sound it out. And she brings up TWO count them ONE, TWO prescriptions. I had called in FOUR yesterday. One two three four. Big difference. I ask her where my other stuff is - my birth control, and the one I can't remember... and she says "I don't think you called any others in." And in my "I will kill you if you don't grow a brain " tone of voice I say, "I did call them in."

So she looks on the computer. Well duh. And she looks back on the shelf, and GEE what does she find? My birth control pills (which she tosses at the counter because, I guess she was upset that I know what the fuck I'm talking about) and my TWELVE bottles of Pancrease. What, the TWELVE bottles with my name on them didn't stick out to her the FIRST time? Because I would like to command my twelve bottles to bite her ass.

Then, as she is writing up something and complaining that two of them were out of refills and the doctor had to fax them back (which is the pharmacy's JOB), I mention, in a nice tone of voice "Those get charged to the credit card on file." And she says, "I don't know."

You don't know what? Now my mean tone of voice is back and I say, "That wasn't a question, it was a statement. They DO get charged to the credit card." And Stupid says, "Let me check to see if you have a card on file."

I DO! Why the fuck would I tell you to charge it to a card that is on file, if there were no card on file? Not to mention this is the MILLIONTH time I have dealt with this woman and EVERY SINGLE FUCKING TIME the meds get charged to the credit card.

She comes back and now I'm just mad that such a stupid woman is allowed to exist, and she says, "Oh yes, there is a card on file." I can't help myself and I say, "Duh. I know what the fuck I'm talking about."

And she says, in all seriousness "I had to look at computer. I don't know anything."

No kidding you don't know anything.

Thursday, March 27, 2008

Note To Self

That was just a reminder of why you need to call the gyno. You're not supposed to spontaneously combust into a pool of blood. Let's figure out why this happens.

Also, call the people from the CF Foundation - that was the same train of thought, I swear.

Oh The Humanity

There is a situation just BEGGING to be blogged about. It's about me. And maybe another person or two. But the main reason I'm keeping my mouth shut is to preserve my own dignity, because clearly the dignity of others CAN and WILL be sacrificed for the sake of my wit.

Seriously, if this wouldn't bump me down several notches on the "what my friends and loved ones think of me scale" I would TOTALLY be ALL OVER writing about it. Not that most of what I've already written hasn't bumped me down a bit with anyone respectable, but this would TOTALLY ruin my street cred.

Do I have street cred? Well if I do, I would lose it all if I blogged about the thing I'm DYING to blog about. Maybe in a couple years (months, weeks, days) I'll get over this "caring about what people think of me" syndrome and then I will write about it... cuz it's good, my friends, oh so fucking good.

Laughs

I needed a few laughs today. So this is what is making me smile today:

Rocky Horror with Bunnies

Spontaneous Musical

David Sedaris - LOVE THIS MAN

I want to BE David Sedaris - a brilliant gay man.

My Favorite Blog (even better than my own).

My favorite blog is MAGICAL - the woman is pure fucking brilliance. I want to be that good someday. I'll get there - I'm still young.

I am sad to admit, but I am working my way forward through ALL the archives on this site - all nearly 300 pages of archives. It's the most I've read in years. I'm more than half done, too - I don't know what I'll do when I get to the beginning (keep up on it daily, obviously), but it will be a bittersweet day.

Aw she's written a book! I'm in LUCK!!! It comes out the end of April, the approximate date of finishing reading her blog!

I'm thinking of blogging a little, reading a little, knitting a little and turning in for bed.

It's Days Like Today

That are hard to deal with. I learned a friend of mine, who had CF passed away yesterday. He was 31 and decided a couple weeks ago he didn't want to fight anymore. That's only 10 years older than me. I really don't know what to say, except at least he isn't suffering anymore.

The friend of mine who called to tell me, informed me that she tried to commit suicide on St. Patrick's day and is now in a partial hospitalization grief counseling program - and all I can say is at least she's feeling better. For her, I hope she deals with not only her grief better, but her outlook on life. There's only so much I can do to help someone see all the things they can still do and how wonderful life can be.

This will be my fourth funeral since September (I knew a fifth person who died, but couldn't make it to my hometown for the service), and each one reminds me how lucky I am to still be able to do the things I love and to be with the people I love.

Life is precious - even when you're sick. Maybe even more so when you're sick. I treasure every single day that I feel well enough to go somewhere or work on a project or just write in my blog. All the little things make me really happy, and overall I am really happy.

I have several other things I want to blog about today - and maybe I'll feel more like it tonight, but right now, this is for Troy. He fought for a really long time, and suffered a lot. He's in a better place now.

Rest in Peace, Buddy. 3.4.77-3.26.08

Morning Thinklings

* Today is ugly. Which means it's a good day to relax in bed and catch up on sleep I missed because of the...

*FOUR HOUR PHONE CALL... It was an Olympic marathon in the phone call world. I have never talked on the phone for that long before - I was talking to one of my teammates and it was fun. Apparently we really both like to talk and fill each other in on everything we know about everyone else. Just call me Gossip Queen. Not malicious gossip - just letting people know the truth about everyone else. It's in my genes - my grandmothers on both sides were gossip queens, and when my mother used to talk to people, she too was a gossip queen.

*It's pretending to snow out - it should just quit and be sunny already.

Wednesday, March 26, 2008

Evening Thinklings

* I deal really well with pressure. The urge to kill and maim people arises when something stressful happens. Don't stress me out.

* This is my little dance related rant - it has nothing to do with the people involved, so don't get all critical on my ass, but the situation BLOWS CHUNKS. We have 12 couples to dance - I set up partners and all was right with the world. Then my captain (I'm Vice-Captain... don't get me started on the "Vice" thing... I'd prefer "Co" or "2nd in command" or "The one with a little less power but a louder voice" or "The Lord High Everything Else" but I got "Vice-Captain") kept looking for NEW people to join the formation AFTER the partners were set to 12 couples and the world was happy. Then, a month to three weeks before we perform these two new people come (and I love them as people), and I don't want them to dance because I don't want to fuck up our little happy (albeit LARGE) group of 12 couples. It's TOO DAMN LATE. If these two new people wanted to dance together and not screw up another couple, then FINE. But I will not screw up another couple to please two people who joined the team WAY TOO LATE.
That's all I have to say for now about that. Thank you.

* Maybe I will burn calories by simply walking to the fridge every hour and screaming into the freezer and/or fridge that I'm "SO FUCKING HUNGRY!" And then I return to my desk to tend to the million emails I've gotten today.

* The million emails. Seriously, knock it off unless you are commenting on the blog or donating to CF - which you should do :-)

* I am FULL of things to say today. Just try and keep these fingers still!!!

Not Just Another day on Mulberry Street.


Today I was on the phone with my best friend in the ENTIRE WORLD. She and I will someday rule this crazy land together and have a cult-like following. She is my other half and has been since Kindergarten - ever since I saw her at that movie theater, and in true Carla style, went over to say "hi" and scared the shit out of her. I, being Carla, assumed she would know who I was because we spent every morning together, and therefore I already considered her my friend.

Then one fateful afternoon I would go to her house, she would give me a tour, play me "The Rainbow Connection" on her record player, and then it was time to go home. But on that day a wonderful friendship became a bonding at the hip, and I learned how cool the record player is.

While I was on the phone with my beloved friend, complaining about boys and dance, I noticed the sound of sirens and cop cars whizzing by my place. I stood in awe. Cop cars, on my street? This never happens. And then a fire truck came. And more cop cars. And more fire trucks. In all, five cop cars and four fire trucks took residence on my street.

People piled out of their houses to see what was going on, and I, being the cool human I am, took pictures.

This is the first truck that arrived on scene. Things were tense. The firemen (no they were not firepeople - they were all men, so I am correct here) were rushing around (okay so they were moving slower than I usually move... but the photo doesn't necessarily tell you that) This is the "Heavy Rescue" truck. Is this different from regular rescue? Do they also have a "Light Rescue" for things like, cats in trees or burnt toast?
Firemen RUSHING to the burning/leaking/exploding condo across the street. We were guessing what the hell happened - and were sooo off. Why would they use cop cars to block both ends of the street and have FOUR fire tucks on hand, if the building wasn't going to explode at any second???
Here we go - what the hell is the "Air-Light Rehab" truck for? What IS "Air-Light Rehab?"
Man frantically putting on coat to go into dangerous situation!!!
Man pulling out hoses at Superman Speed! (not really, this was all painfully slow).

And when the trucks started to pull away, I got the guts to go ask the police officer sitting in his car what had happened.

And TODAY, Not Just Another Day on Mulberry Street, was caused by a sprinkler malfunction in one of the condos. FOUR FUCKING FIRE TRUCKS and FIVE COP CARS and CLOSING OFF THE STREET for a sprinkler malfunction.

What the hell would they do if the building were on the verge of explosion???

The Great Debate

Peanut butter M&Ms or the fantastically amazing gummi bears? Or BOTH AT THE SAME TIME. Life is good.

My Best Friend Karma and Me

My goal in life is to "Live like you were dying" because I am. I have no idea how long these lungs are going to last me, so I live everyday doing things I love (during the time I'm awake), but I don't mind my naps, either. I quite rather enjoy them.

I know because I know I'm 'dying' I see the world differently. I'm not going to have 80 years total. Well maybe I will. There might be a cure or a way to make lung transplants better or something, but I can't count on it. So I do things fast. Really fast. Even when I say I want to slow down, I mean slow down in Carla terms, which is still usually faster than the way other people do things.

For example, when I was sick and living at home in that home town we don't mention anymore, I decided I NEEDED to move back to my city - the city I love. And about two months later I was moved in. It helps that my mother doesn't fool around when making decisions either, but I do my share of pushing things along.

This is all leading up to my clever rant about boys. I guess this is my explanation of why I want things the way I want them.

I go for the "he's old, he might be ready for marriage" type. I think somewhere my brain is convinced that maturity and age are the only things that will help someone deal with my CF.

It's my type, sadly. Because if they are that old and aren't already married, they probably aren't ready for marriage or there is something seriously -and I mean VERY seriously wrong with them. This has proved true several times, and I don't know why I even bother anymore. I have enough problems of my own, let's avoid situations where I am dating a giant problem, thank you.

Also I have recently been very frustrated by the density of men. Are they all void of functioning brain cells? Seriously, I'm only going to ask you out so many times before I give up on "giving you hints" you don't understand.

Then there is this issue. If you don't want to date me, fine, it's your loss and I will except that readily - but just fucking tell me! If you dance (wow, what a pun) around this shit any longer I will get so mad I may destroy your life for FUN. Not because you did anything to me, but just because I CAN.

I'm a big girl. Rejection doesn't hurt me as much as it may seem (especially when you saw me drunk and sobbing at that party - and not sobbing a little, it was the ugly cry. The "I can't stop crying" cry.)

Honestly, I don't cry that much. When my most recent ex ripped out my heart and stomped all over it, did I cry? Yes. Both times you bastard. I cried both times you told me you wanted out after sleeping with me in my bed but before I fell asleep - oh yeah, and that first time was on my
birthday. You should remember. You were there. You were also there when I kicked your ass to the curb in the middle of the night, made you walk the five miles back to town, and then it started raining. Karma's a bitch and me and Karma go way back. But I got over him and his creepy roaming the earth and sleeping with everyone ways, and I'll get over you too.

I am tired of the boys who want to sleep with me but don't want anything else. I am tired of
thinking something is going somewhere only to be told "I don't want a relationship" in my own bed. Maybe I am stupid for not asking upfront if a guy is interested in more than my body. Maybe that will be my new policy. I will create a survey - with questions like "Will you be supportive?" and "Will you do the dishes when I tell you to?"

And if you ask me one more time why we're not sleeping together - physically or metaphorically - I. Will. Hurt you. Physically AND Metaphorically. And watch out, or I'll send my buddy Karma after you, and we all know, she's a bitch.

Ctrl-Z My Life

As noted in the previous post, I am learning to use the Ctrl-Z. It is my new best friend, and I think we're close to getting engaged and setting a date. Lord knows I haven't had success in dating REAL people (well, the real-ness of the people I have dated is debatable, but that is another post altogether), so I might as well date a keyboard function.

I once was in a serious relationship with my chemistry book. That was a good relationship, until I had to drop out of chemistry, and then the book felt abandoned and we had problems.

Anyways, that's not what this post has to do with at all. In this post I'm going to tell you the most outrageous CF story I have heard recently.

I know this mother (we'll call her T, since I don't have permission to talk about her on my blog) and she and I served on the Great Strides committee two years ago. Her son has CF and she raised more than $10,000 for the Foundation (and that's a conservative estimate).

Recently T and her husband had another baby - baby girl. Baby girl's initial newborn screening came back positive for CF - this means that another test (a sweat test) has to be performed at the age of 2 months to confirm the diagnosis. Baby Girl was tested at 2 months and the test was negative. For the sake of keeping this short, I will jump to Baby Girl's conclusion - initially the parents were told she had CF, and it turned out she has ONE mutated gene that probably means she's a carrier. To actually have CF, she'd need TWO mutated genes.

Well all this commotion led to the re-testing of Baby Boy because his initial sweat test had been "inconclusive," and they had sent it to a lab in California for confirmation, and that lab said, yes, your Baby Boy has cystic fibrosis. So for the last, 3 or 4 years Baby Boy has been receiving treatments to prevent deterioration of his lungs, etc. Well they had him retested, and it turns out that he doesn't have CF either. Oops, sorry.

If it were me, I would be suing that lab for all the hardship. I can't even believe this story - how can they screw up that terribly???

At the same time, it'd be nice if someone would come along and tell me that, oh wait, you're completely healthy! Ctrl-Z on my life would be wonderful.

Afternoonish Thinklings

*Ew. What is this gunk on my keyboard? I could guess but you probably don't want to hear my guess. Snot or Mucus. That's my guess. I told you anyways.

*I am redecorating my room (this is a common occurance in my life, the redecorating. Usually it involves moving heavy furniture, but 1. I can no longer move heavy furniture on my own, and 2. I really can't think of a different way to arrange any of the rooms - *tear).

*I LOVE the art I created yesterday. Here are the four pieces I created (from photos I took - isn't it great to take photos of photos you've taken???):

This is my rose teapot glass guy. I'd like to feature him more noticeably, but I don't know where or how, since it is breakable and I am likely to break breakables.
These are the four pieces of art hung on my bedroom wall. Compared to the ugly ass poster that was there before, these are magnificent gems and I love to look at them while curled up in my bed, because I am amazingly talented (haha) and the ugliness is gone!
*I just learned how ctrl-z can save your life... I accidentally deleted the previous picture and was like, "OMG how do I undo?" Then I remembered the MAGICAL ctrl-z, and happiness was found.

*What a great day to not take a nap - let's see if I can make it ALL DAY with no nap. Maybe spend a little time outside reading my book or knitting, I don't know.

*I don't hurt as much as I thought I would. I guess my body is getting used to falling to the ground from high heights.

Tuesday, March 25, 2008

On my Head

I got dropped on my head tonight at dance practice. I also got dropped on Saturday, but at least I was close to the floor, and my partner hasn't dropped me since, so I forgive him. My point is that I was incredibly sore Sunday from it, and tonight's drop was much worse. I got dropped from the point when I started to lean back, and all I can say is that it is going to hurt like hell tomorrow.

And this is the reason I have nothing witty to say this evening.

(Repeat) Great Strides 2008

I'm posting this again. It's important. See big font? Means it's important, so pay attention.


Great Strides 2008

Hello Everyone!

I’d like to invite you to help me raise money for the Cystic Fibrosis Foundation! As you probably know, this cause is very dear to me not only because I have CF, but because I know so many wonderful people who also have CF. This is the montage I made for the 2008 walk:


http://www.youtube.com/watch?v=LlNj_RKhJi8


Cystic fibrosis is a devastating genetic disease that affects children, young adults, and even a few old adults. Advances continue to be made in finding a cure, but your help is needed now - more than ever - to help keep up the momentum of this life-saving research. Too many young lives depend on this vital research to let it go unfunded!


GREAT STRIDES is the Cystic Fibrosis (CF) Foundation's largest and most successful national fund-raising event. This year, I'm walking in the GREAT STRIDES event at the Madison site on May 18th, 2008. Please help me meet my fund-raising goal of $5,000 by sponsoring me. You'll feel confident in knowing that your generous gift is used efficiently and effectively: nearly 90 cents out of every dollar you contribute goes directly toward supporting research and specialized care that improves the quality of life for those with CF. And, it's tax-deductible.


Making a donation is easy and secure! Just click on the link below to make a donation to my fund-raising page where your donation will be credited to my team. Any amount you can donate is greatly appreciated! This year my goal if for everyone to donate at least $5, and if everyone does that we can easily reach our team goal!


Great Strides 2008


Donating to GREAT STRIDES is such a simple and effective way for you to show your support for this important cause. Together, we can make a difference in the lives of those with CF! Once again, thank you for supporting the mission of the CF Foundation!


Thank you very much for you time, and if you’d like more info on how to help me with this year’s walk, feel free to contact me! If you would forward this to the people on your email list, it would be a great help! I’d also love to have you on my team and see you on walk day!!!

Thanks,

Carla

The Great Debate

Do I watch a movie in bed and risk falling asleep, or do I watch a movie on the couch and risk falling asleep?

Monday, March 24, 2008

Things I Can Still Do

Last night I wrote that post with the YouTube videos, and it made me sad. Then I got THIS comment, and it made me happy. I was never saying you shouldn't go ahead with transplant - Hell yes I'm waiting for my new pair of lungs (even though I'm not that sick, I still look ahead and think about transplant).

So today when I went to get my port flushed, I was thinking about all the things I can still do when I'm healthy (and some even when I'm not). So here's my list of Things I Can Still Do:

*Walk without oxygen!

*Sleep without oxygen!

*Walk up a flight of stairs!

*Walk down many flights of stairs!

*Shower on my own!

*Do my home IVs when I need to

*DANCE! (maybe not for huge amounts of time, but I can dance)

*Skip for short distances!

*Do the dishes

*Fold laundry (doing it is hard, but folding not so much)

*Breathe. I don't have to have O2 while I'm sitting. So life is still good.

Things that are in my trunk

In case of emergency I have:

1 shovel

1 windbreaker

2 books on Pierce Brosnen

1 Blender

1 Tennis racket

1 Witch hat

1 Bike pump

1 Pile of used wrapping paper

1 Copy of the What Women Want soundtrack

1 Copy of The Best of the Monkeys

As you can see, I am very well prepared for the end of the world. God forbid the world end and the only CDs I'm left with are those. I might die.

Nightmare

While napping today I had a nightmare. I hate nightmares more than anything. They usually affect me for hours or days after, and prevent me from sleeping.

My nightmares are not normal nightmares. I am reliving horrible parts in my life - usually high school - and it's not pretty. I wake up shaking or crying and I just can't stop thinking about it.

Today I was dreaming, and the dream started out where a strange person was putting notes under the front door, and by the time I would get to the door the person would be gone. I had to go driving around to try and find this person. It was awful - but the worst part was I was driving around and had to lie about things that happened in high school - someone was making it my fault, and I woke up thinking it was my fault, and that is still bothering me.

And now I've found a YouTube video that is so sad. This girl lost her battle with CF at 19... in September 2007. And then I am reminded how precious my life is - I'm almost 22, and sometimes I have no idea how I've made it this far. The PTSD alone still gives me problems, what the hell am I still doing here with my CF???

And THIS is hard to watch... I hate that shot of the cup... But that's just me.
I have that same vest. And a lung transplant isn't a cure - it's a treatment. Trading one problem for another. Eventually we will die.

And thinking about that makes my nightmare seem insignificant.

List: Things I Need or Want

* Wheel Chair for Italy (should arrive this week)

* Purse for Italy.

* Photo scanner. I'd like to do some digital scrapbooking, more montaging, etc. (Montaging is a word???)

* Seasons 4 & 5 of The L Word on DVD

* I need to put TV from Compy on DVDs

* A publisher for my book/editor for my book/someone with any interest in my book (besides me)

* More traffic for the blog??? I want this thing to be bigger, but I don't know if I have the talent.

* Money. haha.

* To be a little kid - little kids are much better to pull at heart strings for fund raising. *le sigh*

* To find a normal sleep pattern so I don't stay up until 2 am writing lists.

Sunday, March 23, 2008

Great Balls of Fire (teehee, Balls.)

Why does my mom insist on telling me everything about all the sports she's watching. Does she not notice that I'm allergic to sports? I played that one season of basketball in eighth grade, and when I say "played" I mean "sat on the bench," and I only joined the team because my two best friends did. I sat out and sucked my inhaler the entire season.

I just don't get how she hasn't caught on yet. I'm not a sports gal, Mom. You got two girly girls for children. My brother and I just aren't sports people. I can recognize a basketball in a lineup of other balls, but the only balls Darin could pick out are his own. I'm pretty sure he knows them pretty well.

My brother is the funniest human alive. We were at Home Depot last night (after a successful snarf-fest at Red Lobster mmmm....) and we walked around the store talking like this:

C: "So this guy I know, we've in the past dated, well I wouldn't say dated as much as I would say watched movies and fooled around, but that doesn't matter. This guy, he exists, and we talk online. He can't get over the fact that I find dates more easily than he does. I'd like to think it's my winning personality but honestly, I'm pretty sure it's my boobs. Guys go: 'Oooo look. That one has boobs! I'd do her!.' Wait, let me correct that. Guys don't even need to know she has boobs, they just need to know she exists to want to do her. Girls just don't think like that. They think about warm and fuzzy things like personalities, smiles, eyes, etc. Guys are pigs."
(At this point we pass a store employee who clearly checks me out right next to the WIRE FENCING. Me, talking about why I get dates easily because of my boobs proves said point.)
D: "Yeah, I'm like that, I see a guy and I think, "I'd do him.""

Then at Hobby Lobby we were looking for blank photo frames. We found ONE. Only one. I couldn't believe Hobby Lobby only had ONE blank wooden frame in the acceptable 12x12 size I needed. Anyways, my brother and I are browsing the aisles, and in the sticker aisle, our conversation goes something like this:

D: "Ooo I should get this for Mike."
C: "Mike your roommate? Why does he like Superman or something?"
D: "Ya, it's his Facebook picture."
C: "Oh, I wouldn't know. I'm not his Facebook friend. But Brian friended me. He thinks I'm hot."
D: "Duh, I know."
C: "You know that he friended me, or that he thinks I'm hot, cuz I was being vain."
D: "Both."
C: "Oh, he's a little young, but a nice kid."
D: "I know, and he doesn't mind too much when I hit on him."
C: "Haha, does he realize you're hitting on him?"
D: "Duh, I asked him to take a shower with me in Chinese."
C: "Did he understand? How do you take a shower in Chinese? What did he say?"
D: "He said no."
C: "Good call."

Then Darin and I skipped all the way from Hobby Lobby to the ShopKo because we could. This is why my Dar-Dar is my favorite person.

D: Say something Lesbionic.
C: Home Depot.
D: Oh my God, You are a lesbian!

Thank you, Will and Grace for fueling whole conversations between my brother and I.

Evening Thinklings

*I will go back and label my posts by relevance, since that's the cool way to blog.

* Why is it just so much easier NOT to shower??? I don't have many things in my life to occupy my time, and I STILL manage to find things to do other than showering.

* Retail therapy - it really works. Every time I get hurt, I buy a new purse. See my closet FULL of purses.

* This year's Spring Break: Spring break. My friends worked their way though it - definitely not cool enough to sit somewhere with a margarita in one hand and Jimmy Buffet playing in the background. My friends might be cool enough to listen to Jimmy Buffet while they work, but I doubt it, since several of them didn't know why the "Cheeseburger in Paradise" restaurant was called that. I don't care. You should at least know OF Jimmy Buffet and refer to him every time you are in a Chinese Buffet or and Old Country Buffet if you were raised in this country. Don't even get me started on all the references you should be able to make with Warren Buffet.

* I will finish my God Damned book if it kills me. Yes, I have said this before - and when I say this, I usually get much closer to finishing. Maybe if I declare this enough, someday it will be done. And then I will spend 10 years getting it published, and by then I will have to explain to people that it was "written over time" and "it was a process."

*What if it takes several weeks of me not eating to clear out my bloated stomach? Because, that's what seems to be happening. I shouldn't be pooping this much. Or maybe I shouldn't be eating this little. I don't know which.

* Why, when I can flirt with almost any guy (or girl, sometimes) and end up with them, do I choose to flirt with and chase after the one person with no flirting radar? Seriously, this kid would miss a flirt if it hit him in the head - cuz I did.

* Why is dancing so much more fun when you can get down with your silly self?

* My children are going to think the "boogey man" is the man who comes and dances you to sleep, cuz I'm that cool. And every night I'll tell them, "Goodnight, I love you. I'll see you in the morning, now Boogie Down, Boogey Man!" If you could only see the AWESOME gesture.

Saturday, March 22, 2008

2am Rant

Let's see if I'm more or less clever at 2am. I went to bed at 9pm hoping to get a good night of sleep before a huge day of dancing tomorrow. May not be quite as huge if one of the kids in our two-step routine can't make it back because of the snow. Then I might hit my head against the wall because we are going to suck. Less than a month until showcase. Are you kidding me???

****

I got my mystery rash again today. I woke up and it was SNOWING - and I had a cute, adorable, irresistible spring outfit planned out. Man, was I bummed when it was snowing. I ate breakfast, got said mystery rash, and went back to bed.

My brother got into a car wreck because of the snow, so I was upset because I had asked for help, and now since my brother wasn't going to be able to come down, my parents were ignoring me. My mother yells at me because doing my laundry is hard. I'm sorry I get worn out when I do laundry, but I do. That's just the way it is.

I started my laundry today but failed miserably, and finally convinced my dad and brother to come down tomorrow, but not before all three of my family members had made it seem like there's something horrible about me because my laundry is hard.

I don't know many - if any CF patients who live alone. And over my dead body am I moving away from my town.

****

I don't know if this is why I can't sleep, but I hurt something awful. I feel like I've been run over by a truck, who then called the steamroller to finish me off. If I'm getting a cold/virus/flu, someone's going to die. I'm not supposed to get sick. I already have mystery rash, mystery bleeding, and sinuses that have decided to hate me. I'd really rather not add things to this list, thank you very much. Make the pain go away or someone is going to feel some serious pain.

****

Why is it that I only notice said pain from my fibromyalgia in the middle of the night. It's usually there all the time, but I think it's worse at night. Maybe that's why I don't sleep well. I don't think I will ever find a comfortable position to sleep in.

****

I got groceries today, in the snow storm, because I needed food to eat. I did not need all the sugar products I bought, but what the fuck, it's Easter. I'm supposed to gorge myself on candy, right?

Said grocery shopping made the laundry that much harder because I was that much more exhausted.

****

I had a new nurse today. Very good looking. He said he's married and has a sixteen-year-old daughter, but I think he is a deeply closeted gay man. Like that character on that show "The Class" (which I don't think is on anymore because I was the only person watching it).

****

Why can't I fall asleep. Again, I think it has to do with the shooting pain in my back. Maybe Tylenol will help.

****

I had three family members (note: my ONLY family members) tell me to suck it up and do my own laundry - and I tried, and coughed so hard I couldn't breathe. Then I had three friends tell me no when I asked if they could come help me. I had two friends give no response, and the two I know would rush to my side and help me? They are on spring break vacations very, very far away.

I offered to feed people and still got nos. I was so desperate I was ready to start offering sexual favors, but by that time I was convinced NO ONE loved me because even my family complained that I was even asking.

Let's just say I wasn't the happiest camper this evening.
I felt all alone in the world - which is my biggest fear. My biggest fear is that I will be sick and no one will come help me - which keeps happening, for some odd reason. The "odd reason" is called my mother. She gets angry when I get sick, and then won't let my father come help me, and my friends don't really understand and I'm up shit creek without a paddle.

****

I'm having trouble forming words - a good sign. Maybe I'll fall asleep and STAY asleep now.

Wish me luck!

Thursday, March 20, 2008

Hey, I know her!

I found this, and said, "Hey, I know her!!!"

Yay for more media attention on CF!!!

Read it!!!

Evening Thinklings

I got that rash again today, but it was weirder because I didn't cough up anything hugely noticeable, like the other two times. I was coughing, and I did get dressed before noon, but other than that everything else was different.

Will someone just tell me what the hell is wrong with me so I can take a pill and get on with my life??? This having to take Benadryl shit is getting old. Benadryl makes me sooo sleepy (as if I don't already have problems staying awake).

I fell asleep today while waiting for my nurse, while watching Mr. Magorium's Magic Emporium, while waiting for my friend to arrive, and about a million other times I can't remember. I suck at staying awake - a thing I'm trying to get over, and the Benadryl doesn't help in any way, shape or form.

****

When a girl who is much cooler than you wants to date your nerdy ass, you are not supposed to say, "But I have to do math." You are supposed to bow at her feet and do whatever she will let you do.

****

You know you need to clean your desk when looking for a nail file, all hell breaks loose.

****

Those are my thoughts for this evening. It's now time for bed. Goodnight.

Wednesday, March 19, 2008

Allergic to Daylight

Today, I woke up around 10:30am to the sound of my alarm. I rolled over, looked at the clock and wondered why my phone was making such a horrible noise at such an un-Godly hour of the morning. Then I remembered I had an appointment at the CF Foundation at 11:30, so I rolled my ass out of bed, begrudgingly, and threw on some clothes - probably the same outfit I wore to dance last night, but maybe with a different sweater. I can wear the same pants and bra 14 days in a row, but GOD FORBID I wear the same sweater two days in a row. Someone might notice that and make me move back to my parents because I am unable to do my own laundry at appropriate intervals.

After throwing clothing on my tired body, I made my famous Eggo waffles, smothered them in syrup and sat at my computer to check my email and catch up on my morning blogs. I have the need to see who has done what in the last 12 hours while I have been in my bed.

Nothing exciting, except Tracy emailed me to say that she had me down for NEXT Wednesday, not today. I swear the same thing happened last week, but that's how the CF Foundation around here works, so I wasn't surprised. Then I realized I had gotten out of bed so early for nothing. And I was already dressed. Had I gotten to the point of brushing my hair, my teeth and throwing makeup at my face, I would have been really upset that I had put forth so much effort only for my meeting to be canceled. But since I had only gotten dressed, I finished my waffles and crawled back into bed.

Once in bed my lungs felt the urge to hurl up a big ol' wad of crud. I can tell how gross it is going to be by the way it comes up, and the texture in my mouth. I was savoring the flavor of syrup, I really didn't want that wad of crud to come up and leave a bad taste in my mouth, but it did, and it was nasty.

Now, here I must inject that two weeks ago I was getting ready to go help clean out my Great Aunt's apartment, and I got a mysterious rash after 1)getting dressed before noon and 2)coughing up a big gob o' junk, very similar to the crud I hacked up this morning. The rash started in a stripe on my face, then spread to my neck, arms, chest and back before I took a Benadryl to stop it.

So this morning, I am sitting in bed knitting after coughing up my huge wad of junk, and my face starts to feel warm. I ignore it. Then, my neck starts to itch and finally it spreads to my chest before I decide that I should get out of bed and go look in the mirror. What do you know? I'm rashy. I take a Benadryl and call my father - the most brilliant of all doctors. If he doesn't know why this rash is happening, no one will.

We decided that I'm allergic to getting up and dressed before noon and then coughing up stuff.
I've decided it's definitely getting up before noon, and has nothing to do with me coughing up nasty gobs of stuff. I'm probably allergic to daylight.

Tuesday, March 18, 2008

Metaphorical Sex

So while talking to a guy friend online last night, the conversation ended up where he sent me this sequence of messages:

"so
why are we not having sex
right now
:-P
not in the literal sense
but metaphorically"

And my question is, "How do you metaphorically have sex?"

Seriously, is that possible? I would like to open up a discussion about this, because I am curious.

Monday, March 17, 2008

She is the very model of a patient in the hospital

I found THIS at http://cfhusband.blogspot.com, who found it:

I found this at Breathing Deeply: My Life With Cystic Fibrosis. You may not fully enjoy/understand this unless you're a CFer or family/caregiver.

I Am the Very Model of a Patient in the Hospital (to the tune of Modern Major General, from Pirates of Penzance)
~ lyrics by Lauren and Brad Beyenhof

I am the very model of a patient in the hospital
I swallow every pill, if it is vitamin or mineral
I know my medications and their purpose gastronomical
From AquADEKs to Zithromax, in order pharmaceutical

I'm very well acquainted, too, with matters anatomical
I understand my PFTs; my lungs, my lobes, my bronchioles
About my sinus polyps, I am teeming with a lot of news
With many awful facts about the cultures from my airway tubes

With many awful facts about the cultures from her airway tubes
With many awful facts about the cultures from her airway tubes
With many awful facts about the cultures from her airway airway tubes


I'm very good at coughing up a sample to be analyzed
I know the scientific terms; the doctors' words do not surprise
In short, in matters of my body, viral and bacterial
I am the very model of a patient in the hospital

In short, in matters of her body, viral and bacterial
She is the very model of a patient in the hospital



I know my patient history, my surgeries and tune-ups past
My allergies, my FEV, and symptoms of a glucose fast
I follow doctors' orders for all testing that is annual
The DEXA scan, OGTT, a panel metabolical

I can tell exacerbation from a chest cold or the Asian flu
I know when intravenous meds and nothing else will really do
Then I take needed time off work to get a bit of decent rest
And do my nebs three times a day, while wearing my vibrating vest

And do her nebs three times a day, while wearing her vibrating vest
And do her nebs three times a day, while wearing her vibrating vest
And do her nebs three times a day, while wearing her vibratingating vest


When airway clearance works, and so do medications in my veins,
Then I can go back to my job and exercise my itching brain
In short, in matters of my body, viral and bacterial
I am the very model of a patient in the hospital

In short, in matters of her body, viral and bacterial
She is the very model of a patient in the hospital



I know I need a lot of food with proteins, fats, and calories
To combat undernourishment and other harmful maladies
The salt shaker and butter dish are staples for my every meal
Unless I take my enzymes first, a tummy-ache I'm sure to feel

My appetite is huge and I eat many meals throughout the day
I feast on roast beef, Chinese food, and pretzels made by Frito-Lay
When I have gained some weight, my progress seems to be so positive
I'm sure that all these foods and supplements will truly help me live

She's sure that all these foods and supplements will truly help her live
She's sure that all these foods and supplements will truly help her live
She's sure that all these foods and supplements will truly help her help her live


My family is supportive, and because of them I am so blessed
My doctors and my nurses want to help me be my very best
But still, in matters of my body, viral and bacterial
I am the very model of a patient in the hospital

But still, in matters of her body, viral and bacterial
She is the very model of a patient in the hospital

I LOVE PIRATES OF PENZANCE! And I love the original version of this song, and the CF spoof. How very, very me of them haha. Us CFers, we think alike.

Breasts Of DOOM

My breasts are plotting to take over the world. This also means, they are plotting against me. They are growing in size, despite my recent weight loss, and are completely out of control. I can't find things that fit me because of the breastage. Even my parents complain that the breasts tend to hang out, and they are supposed to love me despite the fact that my boobs don't fit into my tops.

For example, note what happens to them when I get drunk.

This is me sober:

Yes, there is cleavage, but I am aware of it, and in control.

And this is me drunk:
The breasts are taking over. They are planning to jump out of that shirt at any moment, and I'm very surprised they didn't take advantage of my inebriated state and make a run for it.

Actually, I think they are waiting until they gain a little more in size, and then will make a run for it so they can take over the world. It'll be like in that movie, with the giant BOOB - anyone have ANY idea what I'm talking about? I have a suspicion that it's Monty Python, but I don't know.

Anyways, I can't wait for THAT day! The day when my breasts make their final leap and leave me forever. These breasts are in my way and getting more annoying by the second!

If you're going to be like this, I will turn the comments off

This is what some jerk left for me to find:

"you think i don't have cf? you think i don't deal with this every single day? why would i read your blog if i was not someone with cf... i deal with exactly what you do. we are nearly the same age, and maybe i am more able to say things to you because i don't know you, but i'm serious when i say you complain entirely too much. every day for you is a shitfest. it shouldn't be like that. i don't cry everytime my cf gets hard. i'm not saying i dont get upset sometimes but how in the world can someone complain about their life every day. there are people out there that have it far worse than us, and you need to learn to deal a little bit better."

Honestly... Fuck you. I replied:

"Maybe you don't get this, but most of what I say is SARCASTIC. If you don't like it - don't read my blog. There are plenty of "I don't hate this disease" CF blogs... go read them.

Don't tell me how I need to deal with my CF. Writing makes me feel better, and then in my real life, I don't complain.

I don't cry every time it gets hard either. I'm in the hospital every three months or more often. Some awful shit has happened to me recently, and that's what has made me cry.

Again FUCK YOU. Go read someone else's blog."

A GIANT FUCK YOU, and please stop reading my blog, because I really don't like having to make these kinds of posts.

I feel that I am a generally happy person. My psychiatrist is amazed at how well I deal with my CF because she has seen other patients who don't deal with it well or at all. My CF is something that is hard, yes, and I write about the hard, obnoxious things because who wants to read that "Today, I sat around watching movies, and then took a nap." or, the ever popular "Today I took a nap, and then watched movies." The only variation is, "Today, I saw the doctor, took a nap and watched movies."

Who wants to read that?
NO ONE.

So I exaggerate the bad and make it sound worse for dramatic effect. It is my creative license and I will use it however I please. Thank you bye.

Morning Thoughts

It is not sunny today. That means I should sleep all day.

FINALLY I have lost some weight. Those anorexics are onto something - not eating really works.

My stomach really hurts (and before you say it, NO, it's not because I haven't been eating. I have been eating.) My CF is giving me abdominal problems. And I'd really just like to have my digestive organs removed. Thanks. Digestive organ-ectomy. It's a good plan.

I hate Mondays. I never know what to do with my Mondays.

Maybe I have the flu. I feel really sick. Owwwww... wow. I haven't had this much stomach pain in... omg I don't remember the last time I had this many digestive problems.

My sinuses have died.

Going back to bed seems like my best and my worst option.

I have nothing creative to say. I'm going back to bed.

Sunday, March 16, 2008

Answers to my Curiosity

Note to self: Don't ever do that again. Waking up hours later because you think you heard the phone ring, and then realizing you did, and then realizing that your blood sugar has plummeted to an unusually safe and bad level is not fun.

But I did satisfy my curiosity and found out what would happen. My sleep was indeed dreamless and I woke up not crying, which is an improvement. I was also able to eat dinner without crying, so I'm up to a whole 20 minutes of awake time with no crying. Have I moved out of the "Pile of Mush" stage, right past "Angry Bitch" and into "Meh, the World Sucks, I Guess I'll Just Deal???"

I don't know. My brother yelled at me on the phone for drinking the Mountain Dews - yes I called him. I was trying to fall asleep and every other best friend I can call crying is on Spring Break. I called my brother. Crying. I'm sure he's sick of me and my crying by now, but up until now the tears wouldn't stop.

It was a crazy phenomenon. I just couldn't stop the tears. I was crying for completely unrelated reasons to last night. Crying because of the things I have to do everyday. Crying because I don't always do those things. Crying because I have bad genes, and not freshly clean sheets, and because I had nothing else to cry about. Can you say hormonal? Maybe I'm carrying the next Son of God or something because these hormones are supposed to be controlled by that pill I take every night. Although it doesn't seem to do its job - I bleed ALL THE FUCKING TIME.

Seriously. Two days ago I stopped bleeding, and I thought I should throw a party it was such a monumental event. Today I started bleeding again and I cried. Because that was the action of the day. "Let's not do anything about anything, let's just cry about it and then do really - I mean REALLY - stupid things for our health." My kidneys hurt from processing all that excess sugar. And I think I have actually convinced myself that my kidneys really do hurt - maybe I should go cry about it.

Instead I think I will pop some Tylenol and go make that phone call.

Comments

My response to a comment I got for being so negative about my CF:

"Fuck you. I'm tired of trying to be so positive all the time. I am real. Do you think other CFers don't think this stuff? I'm the only one with the guts to write it all down.

It's my blog and I'll do whatever I want with it. If you're going to criticize me, at least have the guts to let me know who you are."


Seriously. I am having a hard time dealing with my CF right now, and it is my right to express it. "Think of the positive, Life will be better." Yeah, I've done that. And I'm tired of it. Right now. Things suck, and that's how I feel. In a few days I'll probably go back to being happy and "looking at the positive," but right now I just want to tell you how much my CF sucks. Because it does.

So there.

Forbidden Love

Forget forbidden love, CFers have forbidden friendships too. We're not supposed to be within three feet of each other. And all we want is to talk to someone who knows what this is like. Who knows what it's like to want to be NORMAL.

One time I was talking about my Dad about CF, and I referred to non-CFers as "Real Humans," and he replied, "You're a real human too." But it doesn't feel like it. My friend Brittany sent me this article that appeared in the Times today. It's brilliant, and if it had a little more sarcasm, you would think I had written it myself. Except I don't know anyone named Thomas.

Forbidden Love.

Curious

I started my counter today. I'm curious about how many visitors I get.

I'm also curious what several cans of mountain dew do to a diabetic. Better than alcohol - I'll pass out in a Mountain Dew coma. yesssss. Maybe I won't dream, which would be the best present to me ever.

I still can't believe how much I drank last night and how little I felt it. I only got a 1/2 hour or so of being silly and not knowing what was going on. And during that time, what did I do? Played Chinese checkers. L to the AME. Lame. Not that it had anything to do with Lena or her party (the food was BEYOND fabulous. I ate way too much - maybe that's why I didn't get more drunk.) For the little time I was drunk, it never occured to me that I'm still diabetic. I was sleepy, and thanks to Chad, I was able to remember I need to check my blood sugar.

He asked, "Isn't there some way you can test your blood sugar?" After I asked how many carbs are in alcohol (this seems to be my only concern when I get drunk - "How many carbs are in an alcohol?" As if I have any idea how much I've had to drink, or I have the math skills to calculate how much insulin to take.) Chad's suggestion hit me like a ton of bricks. "You mean, I can check to see if I need to take insulin? I can prick my finger and see what the sugar content of my blood is? NO WAY!!!" Way to be smart, Carla.

While drunk, I am still able to explain why my system needs insulin to take care of the alcohol and I'm also able to soot up the insulin. Go me. I have no idea whether or not I gave the correct amount of insulin, but I gave myself insulin, and I guess that's all that matters.

It was really disappointing how long the drunk lasted. An hour, tops, maybe. If that. By the time I gave myself the insulin I was starting to not be so drunk anymore. And you know, maybe I didn't get more drunk because of those damn alcoholic genes in me. DAMN YOU RELATIVES FOR NOT LETTING ME ENJOY ALCOHOL.

I've heard that you're supposed to enjoy it more if you have the alcoholic gene. It may take more to get you drunk, but you're supposed to like it more. I don't like it very much. Maybe I didn't get the gene - maybe my system views alcohol as a vacation. What's this? Something poisonous? "Yipee! At least it's not those damn antibiotics again," my already calcified liver cheers. My poor little kidneys chime in, "This shit is nothing compared to that stuff she shoots up!"

Wow, my system must really enjoy the hour or two I have alcohol in my system. It's a short break from the five weeks of dangerous antibiotics being shot straight to my heart. I never really thought of drinking that way. I should drink more often to give my system longer breaks.

Lena told me last night not to do anything stupid. Too late. I'm going to pass out in a diabetic Mountain Dew coma. Since I'm not fully diabetic, my blood sugar shouldn't get higher then 300 (only on prednisone did it ever get over 300- and the bastards thought I was "over reacting") so it shouldn't be dangerous. Wise? No. Dangerous? Probably not. If I die in my sleep, well at least we can say the CF didn't get me - it was the Mountain Dew.

If I die in my sleep from this, please, please write on my tombstone "At least the CF didn't get her, it was the Mountain Dew." That will make me laugh for years in heaven. Every time I think about my death I will giggle. Maybe this IS how I want to die.

I wonder how many Mountain Dews I have left in the fridge... I'm only curious.

Weather

So I thought we had agreed that the temperature would not drop below 30 anymore. Fuck you, weather, and your stupid cold.

Pile of Mush

Hi, My name is Carla and I am nothing but a giant ball of mush. I don't know what to feel -I just kind of feel empty this morning. But I have a sneaking suspicion that empty doesn't actually hurt. So maybe Mush on the Verge of Tears is more what I am.

At three am last night I called my brother. I couldn't handle being by myself, so I called Darin. I told him what happened and why what happened made me so upset (something I'm not ready to actually type out yet because... oh, wait... yes. There is a tear just thinking about it), and I made him stay on the phone with me until I fell asleep. That's right. I vaguely remember the sound of him brushing his teeth, and I started singing "When you wake up in the morning, it's a quarter to one and you want to have a little fun, you brush your teeth. Ch ch ch ch ch ch ch ch ch. You brush your teeth." Thank you Raffi. Even when I'm half asleep, I can still sing your songs in the middle of the night.

I think kicking people would be cathartic, but I've heard that's usually not the smartest of ideas.

I feel like part of me is missing, and without it I don't know what to do - without it I just want to sit and throw up for hours. I have this sneaking feeling that throwing up for hours would not be as fun or as soothing as it sounds right now. I'm not sure what kind of healing I could accomplish from hugging a toilet for hours on end. Plus, I haven't eaten anything yet, so I doubt there's anything to throw up.

So I'm a pile of mush who is trying not to feel anything. I've gone through the stages of grief before - this one comes right after "bawl your mother fucking eyes out." It is officially called the "pile of mush" stage, although some might refer to it as "a bit of denial." Pile of mush comes after the bawling but before the "Raging Bitch" stage. I'm not ready for Raging Bitch yet. I thought I might be last night when I was threatening people in my mind, but this morning, I have reverted back to "Pile of Mush." I don't know who to threaten, or why, so I'll just stay here in Pile of Mush today, I think. Maybe I'll be in Pile of Mush for the rest of my life. Feelings are overrated anyways. Denial is the way to go. I'm pretty sure I'm right about this.

Pile of Mush is a hard stage to leave. It takes self-confidence, a bit of anger, and the strength I seem to have misplaced at that party last night. It probably ended up in that cup of daiquiri I drank, or maybe in one of the other cups full of liquor that I consumed. Daiquiri is just the last place I remember having my confidence, so I'd look there first. Drinking is NO FUN. None. I was sober way too soon, and then I had to feel emotions in a non-drunken state. I didn't even have the excuse that I was drunk to explain the crying uncontrollably. It was just that I felt THAT BAD.

If you find the part of me that makes me non-mushy, please give it back to me. I'd like to be able to come up with something better to do then throwing up for hours. My next bet is to watch The Sound of Music and fall asleep. Maybe I'll take door number two. That confidence song might actually help. Maybe. Maybe I'm not ready to build my confidence again. I'd just reached the "you can't mess with me because I'm awesome" stage, and now here I am, back to Pile of mush.

The Ides of March

This is all because the Ides of March. E tu, Brutus?

I want to curl up and die. Yep. Yep, I do.

I'm in so much pain. Emotional pain mostly, although my sinuses are going to hurt like fucking hell because of all the crying. Well, when I need sinus surgery, I'll know who to blame. Bastard.

I'm in so much emotional pain because of my CF - why do I have to go through all this other bullshit too? It'd be so much easier to curl up and die.

I just wanted something to help me forget the pain for a little while, and I end up sobbing uncontrollably.

I'm done with guys. DONE. D. O. N. E. DONE. I just. I. There. Words. NO. aRE. none.

I may or may not continue speaking to a select few whom I deem worthy, but other than that I will not be speaking to or associating with anything male.

All I wanted was the pain to ease up a little. Now I'm in more pain and I can't stop crying.

Saturday, March 15, 2008

Question

Does anyone want to help change my sheets? And by help I mean do it yourself? And wash them? And fold them? Thanks.

Yeah... I don't know when my parents are coming down next, and I'd really like to put my spring sheets on my bed. (Must find boy who knows how to make a bed - note to self.) I just don't have the energy to change the bed. That makes me sad. REALLY sad.

Things To Write About

I have too many things to write about, so here is a list of the things I will eventually, maybe want to talk about:

1. I don't care how well-traveled you are, you are still a douche bag who clearly doesn't get that I'm stranger-phobic. Also especially tie-me-up-and-rape-and-maim-me-in-a-foreign-country-phobic.

2. I don't care who you are, there are just some songs that you should know if you were raised in this country.

3. I enjoy when you know the country song playing in the bar. I thought I was the only one who would recognize it.

4. There's a big difference between recommending places to see in a foreign country and a way to see a foreign country. Do the first, not the second, Thanks.

5. I am aware that my cleavage is distracting you. It will always be there, I can't help it, and you don't have to point it out to me every 10 minutes. It's always in MY way and I have adjusted to it being there, you can too.

6. My pants are staying on, no matter how hard you try to take them off with your eyes.

7. If you've asked me out a million times before and I've never made out with you yet, do you really think I'm going to take you up on your offer this time???

8. Am I really going to be this lame about pouring my meds? I should just do it and be done with it. wow.

Thursday, March 13, 2008

Too Many Big Spoons

I have too many big spoons. They overflow in the drawer and it bothers me. They take up more space then alloted, and that's just not fair to the rest of the silverware in the drawer.

That's not what this post is about. This post is about me getting out my frustrations with the world and my disease so I can go to bed and rest peacefully. I don't want to cry myself to sleep, so I will cry my way through writing this post and be done with it.

I'm scared to go to Italy. This is the first I have had that feeling. I'm scared about my energy and my ability to walk and that I'm probably going to see most of Italy from a seated position - in a wheelchair. At least I'm not on oxygen.

Here I go: I am going to complain about the dishes. It is a huge issue. There are so many things I am already supposed to do everyday (and boy, if I get them all in, it's a miracle), so how am I supposed to fit in filling the dishwasher? I only have so much energy, and I like to spend most of it being happy and doing fun things because, honestly, the treatments and the pouring meds and the etc. suck. They just suck .

Shit! I need to count how many weeks it has been since my port was last flushed. Okay, good. It's not THIS week, it's NEXT week that it needs to be flushed. *sigh*

I have doctors and treatments and trips to the pharmacy and I have to rinse my nose. THAT I will talk about. I guess I'm supposed to do it daily, but my cough gets worse when I do, so I don't. I do it when my sinuses start to bother me - or when I think they might be starting to bother me. I've had several ways to rinse my nose over the years - the nettie pot where I burst my eardrum once (that hurt like hell), the water pick that blew snot all over the walls (while entertaining, it also hurt like hell when the water is POUNDING MY BRAIN AGAINST MY SKULL), and now the squeeze bottle. I almost enjoy the squeeze bottle.

Almost. Of the three ways I have had to rinse my nose, it is the least horrible. And it doesn't hurt. It's almost soothing. Almost. I still have to squeeze a great deal of salt water into cavities that were not meant to hold water - or EVER have water blown into them. And then I watch the water run out the OTHER side of my nose and see the river of snot. At least the snot is no longer in my head. And then when I stop squeezing all the water rushes out both sides of my nose at the same time and I usually do a sneeze-like thing and snot gets all over the bathroom counter. God this is fun. We should make this a mandatory recess activity for children - it is THAT fun. Water parks should include the "nasal rinse" in their water rides and Disney should dedicate a whole park to nasal rinsing and the joy of SNOT.

But back to the dishes. After I have a little fun and get all my medical stuff done, there is little time left for the dishes - or the laundry. I do take the trash out when it smells, and do the dishes when they smell (if I can find enough energy that day - if not, then they sit there a few days until I find a day where I am bored and have energy - not always so easy to do). IS IT SO MUCH TO ASK FOR ME TO HAVE SOMEONE HERE AT THE END OF THE DAY TO LOAD THE DISHWASHER AND HOLD ME AND TELL ME THAT EVERYTHING WILL BE OKAY??? AND IF HE HAPPENS TO DO A LOAD OR TWO OF LAUNDRY, THAT WOULD BE GREAT - AND A LOVE OF COOKING WOULD BE WONDERFUL, BUT NOT NECESSARY - JUST THE HOLDING ME AND TELLING ME THE WORLD DOESN'T HATE ME AND THE DISHES. HE MUST DO DISHES.

I don't think I'll let another guy near me until I have confirmation that he will not only love me, but also do my dishes - even if we don't live together.

IS THAT SOOOO MUCH TO ASK FOR???

I just want someone to do the dishes. Maybe then my silverware drawer will look more balanced -if the regular spoons aren't all sitting dirty in the sink, maybe it won't look like the big spoons are hogging the drawer.

TWIZZLERS

I. WANT. TWIZZLERS. RED TWIZZLERS. STRAWBERRY TWIZZLERS. I'm going into withdrawal.

I haven't had a Twizzler in over a week and I am now in withdrawal. That's all I have to say about today.

This weekend is going to be CRAZY busy, but I have some energy again, even if it is in the form of a pill.

Oh, and today I took a folding chair and went and knit on the sidewalk. It was nice out and I wanted my hair to dry in the sun. So there I was, knitting and listening to my non-ipod (not brand name, duh), surrounded by snow. People walked by and I kept knitting. Cars drove by and the people inside looked and pointed saying "look at that girl who has obviously gone nuts because she is knitting on the sidewalk in a folding chair."

Sometime, I think I do these things only so I can write about them later. And sometimes I know it's because it's just so damn fun.

And at least I'm not as crazy as my mother who went around destroying things the past several days.

Wait I think I see a Twizzler. GOOOOOO. GEEEEEET IIIIIIIITTTTTTTT!!!!!!

Wednesday, March 12, 2008

Tired

I'm tired.

I'm tired of days like today. Days where I wake up at 11am (after 12 hours of sleep), take my pills that are supposed to help me stay awake (narcolepsy pill in small doses), and then I even take my second dose at 1pm (which I usually forget), and I still feel like I could crawl into bed and sleep for days.

I'm tired of having so much energy for two or three days in a row and then it's over. In those two or three days I plan a lifetime of activities I want to do - I want to make picture frames and change all the artwork in my house - and now I don't know when my next good days will be.

I danced a lot last night and did a great deal yesterday and even more the day before - and even more on Sunday, so I guess being tired today shouldn't be unexpected. I'd just like to have more energy. Oh the things I could do with more energy!

I think I need to update my CF page (it's TEAM WEEK afterall, and I will forget if I don't do it now) and then take a nap. Napping this late in the day can screw with my sleep schedule, but do I really need a schedule? I only have to be up for the 1/2 hour my nurse is here - no one really cares what I do with the rest of my time. As long as I make it to the doctor and to dance practice, no one will notice that I sleep the rest of the time.

Oh well. Today is a complaining day. I'm not really upset or in a complaining mood (I tend to type in all caps if I'm really going to complain), I just miss the energy I had the last couple days.

Again, I wish I had the energy to do the dishes - why is this such a problem for me??? I've pretty much given up completely on doing laundry - but I'd like to still do the dishes. I managed for a couple weeks. Maybe I can do them after my nap.

That is all for now.

<3 Carla

Tuesday, March 11, 2008

The Answers To My Life As a Musical

I figured I should post the answers eventually. I had a couple people actually guess, which was fun!!!

1) Singin' In the Rain

2) The Sound of Music

3) Funny Face (awesome Sarah that you got this one!!!)

4) Avenue Q

5) RENT

6) Singin' in the Rain

7) Mary Poppins

8) My Fair Lady

9) Beauty and the Beast

10) Grease

11) Mary Poppins

12) RENT

13) RENT

14) RENT (I'm a big fan of RENT... can you tell? I really connect with it.)

15) RENT

16) Avenue Q

17) RENT

18) The Sound of Music

19) Fiddler on the Roof

20) The Lion King

21) The Muppet Movie (The Rainbow Connection is an epic song for me... I'm thinking I might want those words on my grave marker - which has nothing to do with the fact that it's a very special song for my best friend and me.)

So this is how I'll end it:

"Someday we'll find it, the rainbow connection.
The lovers, the dreamers and me."

I <3

I <3 Dance!
I <3 Knitting!
I <3 My friends!
I <3 My family!
I <3 Good Food!
I <3 Good Movies!
I <3 Fund raising!
I <3 Being able to breathe now that it's warmer out!
I <3 Living!

Greedy, Greedy, Me.

I want things. I try not to, but there are just things I want so badly it hurts. Honestly, try to ignore the thing you want most in the world and it will come back to bite you in the ass. Some days I just cry and cry because I can't have what I want. I am an eternal toddler and I want to throw my very own temper tantrum.

The other night (in a crazed state of sleep deprivation and lack of psych meds) I wrote this before bed:
"Eats me alive that I'm 'dying' and I want to be loved -no one will b/c - and I feel I don't have time."

Obviously it's not completely coherent, but when I woke up the next morning to find tear stains on my pillow and I wondered why the hell I had been upset the night before, I found that guy on my yellow notepad. And I know what I meant.

I meant that I was upset - and it hurts - that I'm 'dying' and I don't have anyone to marry me. (that's such a loose term.... 'dying'. I can go 3-5 months without the hospital or home IVs, and really, how sick am I? I can dance... I'm not THAT sick, but I'm legally disabled. Yeah, it fucks with my brain too.)

That is one of the things I want - a marriage. If you would like to apply for the position of 'husband to a woman with CF' please leave a comment and I will send you the application. I'm serious; if I get any comments I will actually make an application and you will have to take blood tests.

I've had a couple relationships that you might be able to call "supportive." But the support turned ugly and things were bad and let's not think about those things.

The other thing I want more than anything in the world is a baby. A baby girl. I could handle a boy, I suppose, but I want a girl.

I want to experience all the Mommy things - and I want to give birth to her.

I know how unrealistic the marriage/pregnancy thing is for me, but this is what I want:

First, my husband will have a really good job so he can support me and said baby. He will have really good health insurance with said job, and then we can be legally married. He will get me pregnant - after we make sure he's not a CF carrier. If he is, there's a 50/50 chance that the baby will have CF, and I don't want a baby with CF. He will have enough money to hire a housekeeper and a nanny, even though I will be a stay at home mom. This will be so I can spend most of my time with the baby, but also do my treatments and sleep, etc. I will also still have the time and energy to keep fund raising for CF and keep dancing. Baby will come with me to dance and she will be loved by all.

(all of this would be good... well, now would be good - if I wait much longer my lung functions will be too low to carry a baby - so if you'd like to impregnate me soon, let me know).

I love my life currently, but it could be a little more perfect - and this is how.

I'm not asking for much, am I?

Why I Walk

This year will be my third year walking Great Strides in Madison. I have walked every year since I moved here. It is easy to raise money for myself, but the real reason I walk if for the little kids.

I love children, and it hurts to see little kids with feeding tubes, little kids in the hospital, and little kids doing the vest. They shouldn't have to. They should get to live like normal little kids.

I know I had treatments when I was little and I have never known anything different, and the little kids are the same - but I know how horrible CF is, and no one else should have to go through it.

Last year I made my first montage for fundraising, and it was because I saw the montage Emily's mom Tami had made. They are a family who live near my original hometown. Emily's montage was so well done I cried the whole way through. This year, her Mom made an even better one, and again I cried. Click and watch it.

Emily.

Little kids are our Sunshine, and it's not fair that something like CF can take them away.

I've already had 21 great years, and I want kids like Emily to have at least that many!
So please, if you don't donate for me - donate for the little kids like Emily.

Again, my site is:

Carla's Site

Thursday, March 6, 2008

Great Strides 2008

Hello Everyone!

I’d like to invite you to help me raise money for the Cystic Fibrosis Foundation! As you probably know, this cause is very dear to me not only because I have CF, but because I know so many wonderful people who also have CF. This is the montage I made for the 2008 walk:


http://www.youtube.com/watch?v=LlNj_RKhJi8


Cystic fibrosis is a devastating genetic disease that affects children, young adults, and even a few old adults. Advances continue to be made in finding a cure, but your help is needed now - more than ever - to help keep up the momentum of this life-saving research. Too many young lives depend on this vital research to let it go unfunded!


GREAT STRIDES is the Cystic Fibrosis (CF) Foundation's largest and most successful national fund-raising event. This year, I'm walking in the GREAT STRIDES event at the Madison site on May 18th, 2008. Please help me meet my fund-raising goal of $5,000 by sponsoring me. You'll feel confident in knowing that your generous gift is used efficiently and effectively: nearly 90 cents out of every dollar you contribute goes directly toward supporting research and specialized care that improves the quality of life for those with CF. And, it's tax-deductible.


Making a donation is easy and secure! Just click on the link below to make a donation to my fund-raising page where your donation will be credited to my team. Any amount you can donate is greatly appreciated! This year my goal if for everyone to donate at least $5, and if everyone does that we can easily reach our team goal!


Great Strides 2008


Donating to GREAT STRIDES is such a simple and effective way for you to show your support for this important cause. Together, we can make a difference in the lives of those with CF! Once again, thank you for supporting the mission of the CF Foundation!


Thank you very much for you time, and if you’d like more info on how to help me with this year’s walk, feel free to contact me! If you would forward this to the people on your email list, it would be a great help! I’d also love to have you on my team and see you on walk day!!!

Thanks,

Carla

Monday, March 3, 2008

"It's really weird when you're not leading me"

It's true. I tend to lead no matter what I'm doing. What can I say, I'm a control freak!!!

I had the most amazing weekend. Friday I practiced the two-step with my partner, and then went to hang out with friends and eat donuts. We also watched an episode of Firefly. Good times.

Saturday I went to dance practice and left early to go to Milwaukee! We ate dinner at Buca's - most amazing food I have had in a REALLY long time - possibly ever. They serve it family style, which makes it more fun! I loved sitting around a round table with ten people - and we can all talk to each other! No silly long table; it's fantastic!!!

Dinner. Amazing. Fabulous. Fantastic. Incredible. Yummy.
Salmon with pesto was the highlight for me - also ate Margherita pizza, ravioli al pomodoro and some had the lemon chicken. I loved the appetizers - garlic bread w/ and w/out cheese, and bruschetta. Haha. Reminded me of Sarah and my birthday party. Funny, Funny, Funny. Bruschetta is not Bree. Bree is a cheese, bruschetta is tomatoes and shit on bread.

Dessert. Also incredibly Yummy! We all shared a tiramisu (this is family style, this stuff is HUGE). two pieces of cheesecake, and a brownie sundae kinda thing.

After dinner we walked to the PAC - about 6 blocks, and my lungs were burning. A friend of mine stayed with me, but I fell about two blocks behind everyone else. Seriously, how can anyone walk that fast??? I used to be a fast walker, I think, but now I'm just super slow.

We met Darin and his friend at the PAC, and saw AVENUE Q - I could talk for hours about the relationship between Avenue Q and Sesame Street and the symbols and the jokes and just how incredible the show was!!!

On the way to the show, my brother and I took the elevator because our seats were on the fourth floor. Remember, my lungs were burning and I couldn't breathe. In the elevator, people got on at the third floor and were going to the fourth floor. Darin said, "Since when are the stairs broken?" And the guy turns around, has a drink in his hand, and says "The stairs are broken since I started drinking." Darin says, "Touché." HILARIOUS. Just like Avenue Q.

After the show Darin walked back to my car and picked me up... I have the world's best brother. Darin and I should live together and be Will and Grace. LOVE that kid.

I had an amazing weekend. The drive was tiring on me, as was the walking... so Sunday I slept. And today I slept, except for my evening dance lesson, which went very well!!!

This is a busy week - hopefully I'll be able to balance rest, treatments, dance, and the other stuff I have to do.

<3 Carla

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