Monday, July 27, 2009

"They Say It's Your Birthday"

"Well it's my birthday, too, yea."

It's my 23rd birthday.

Usually, I don't like my birthday. That's not true. I love my birthday. I love celebrating that I have beaten cystic fibrosis for another year. I love celebrating my life. If it were up to me, I'd have a huge blowout EVERY year. Such as it is, I don't celebrate by birthday ON my birthday in the last few years, because my mother refuses to wish me a happy birthday.

It started when I was 17. She canceled my birthday. She didn't cancel a party or something grand we had in the works to celebrate. She canceled the actual day. She didn't speak to me all day and refused to wish me a happy birthday.

And then the next year, when I turned 18, she did it again.

Last year I thought we were good. My parents came down the weekend before my birthday and we went out for a birthday dinner. I'm pretty sure she wished me happy birthday at the dinner - but before they left, she got into a fight with me (because it's not usually accurate to say that WE got into a fight. "she got into a fight with me" is a much better wording). So she had an excuse not to wish me happy birthday on my actual birthday.

This year, I'm not even waiting by the phone. I don't expect my phone to ring with birthday wishes. I actually plan on sleeping most of the day, because I'm tired. I will be babysitting in the evening, which is something I love to do.

If I am awake, you will find me hanging the lovely birthday gifts I got from my friend Janelle. It means rearranging a little, but some rearranging I've been meaning to do for a long time.

Also, I may take my dying Jade plant to a garden center and say, "Please fix it. I am killing the hearty plant." Then I might watch some of the wonderful crap I have recorded on my DVR. I might watch a movie or two. And then I'll probably need a nap.

Hopefully, this is the last year I will hate my birthday. Hopefully next year I will have the confidence to celebrate on my own, no matter what my mother is doing. Hopefully I will find that inner strength.

The other day I was watching the movie, "Alice," and the Chinese medicine man says, "Freedom is frightening feeling." He's correct. I've got some more freedom now, and I'm not sure what to do with it. I'm not quite ready to celebrate my survival on my own yet.

But when I'm ready, we're going to have one hell of a party.

Friday, July 24, 2009

Thursday, July 23, 2009


Here are a few things I miss about my mom.

•Watching SYTYCD at the same time and calling each other after every dance.

•Calling her while I babysit to tell her all the wonderful things the kids do.

•Telling her all the adorable things Luca does.

•Shaing our joy over good lung functions.

•Having someone to call no matter what I'm happy about - like when I walked to the pharmacy today.

•Being able to talk to someone even when I'm upset about stupid things.

•Hearing about what the dog is doing.

•Her hugs.

I miss my mom.

Tuesday, July 21, 2009

Doin' the Happy Dance

PFTs are UP! What's that you say? My lung function tests are better than two weeks ago and I haven't started the study drug yet? Yes indeed. Damn straight! 94% and 57%!!! Gotta love it!

That's right, I plan to have my PFTs go up the whole time during the study because I plan to exercize more and more - as much as I can. That's right. Workin' hard for my lungs. LOVE it!!!


Waiting game

I hate that ENT is already way behind at 9am. Fuck this shit. I'll come back when I'm sick again. This clinic wastes so much of my time.

-- Post From My iPhone

Monday, July 20, 2009

My Journey With Books

Sorry for the lack of posting lately. I'm on a spiritual journey and it's taking me many places.

My journey started in Italy - a place I have actually been. Then it took me to India and Bali. (that was in "Eat, Pray, Love"). In that book I discovered that I have a soul that I need to look after and I need to actively take care of it or it will wither. And the same goes for my happiness. If I don't actively pursue happiness, it will never find me on its own. I learned many sage lessons from that book.

Next, I went into a world where Medicine and The Law crash into each other. "My Sisters Keeper" was a wonderful story. I related in many ways because of the medical procedures being done, but I couldn't relate at all to being used to save my sibling. I wonder if that's how my brother ever feels. He wasn't conceived to save me, but it was partially (or mostly, depending on who you ask), because I was sick. My mother wanted a healthy baby.

Next, I took a trip through the lives of twins with cystic fibrosis. "The Power of Two," started slow, but I really ended up enjoying it. I got to read about treatments and procedures that were common before I was born. I also got to read about attending CF Camp. Before the Foundation became Uber strict about cross-contamination rules (mainly over hyped fears - because the reward far outweighs the risk), there were summer camps just for CF kids. When I was really young - about 4 or 5 they kept telling me that as soon as I got old enough I would get to go to CF Camp - and I was so excited. A WHOLE WEEK to be with people just like me!!! And my year finally came. I was old enough to go to camp... and they shut the camps down. Huge dissappointment.

Anyways, I'm working on my spirit and myself not just by reading, but by being in therapy and really thinking about myself first - which sounds terrible - but it's something I usually don't do. I'm usually so worried thinking about and trying to make sure other people are happy, I don't get around to wondering if I am happy. Now that I have no mother, I don't have to worry whether she is happy or not.

But I wish she were happy.

But I can't make her happy - I can only make me happy.

Super Masochistic Bob

Here is a spoof of Supercalifragilistic... I personally LOVE it. I find it truthful, honest and fabulous. Just as a little background, Bob Flanagan wrote a book (and eventually there was a documentary) called Supermasochist. He uses masochism to deal with the pain of his CF. And I feel like, "Hey man, do whatever you gotta do to get through it."

Here's to Bob. He lived to be forty-three in an era where the median age of survival was about 19.

Friday, July 17, 2009

I Wish

I can check my blood sugar anytime I want, but many times I want to check my O2 level. I feel funny and light headed and I'm pretty sure my pulse ox is low, but I have no way of knowing for sure.

-- Post From My iPhone

Wednesday, July 15, 2009

Happy 9 Months!!

I'm a day late, but Happy 9 Months Luca!!!

Hope it's a SCREAM!!!

Love you with all my heart, Mr. Big!!!

Auntie Carla

Sunday, July 12, 2009

Lack of Blog

I can't say it. I don't want it to be true.

So the shit has hit the fan, so to speak, and I don't want to write about it. I can't talk about it - and we know that if I can't talk about it, it must be really awful, because I will talk about anything.

I had a nightmare last night. I only remember small parts, but right now, that nightmare seems a better place to be than my reality.

I want to write all my emotions and get them out - but I don't want to admit they are real just yet.

Basically, I'm a mess.

Saturday, July 11, 2009


Why doesn't Hallmark make an "I'm sorry Mom" card?

The inside would say, "I can't imagine my life without you. I love you. I want us to be friends. We don't have to see eye to eye on everything - we just need to not fight about our differences."

"I'm sorry I can't support myself and at times I really need your help with everything - from dishes to bathing. I'm sorry that you have a sick child. I have no idea what that pain feels like. I only know the pain of being the sick child."

"I'm sorry about Mother's Day and your anniversary. If I could, I would do something like I did for your 25th every year. But I can't afford it and I'm not that creative."

"i want to be happy. I want you to be happy and satisfied with life. I want us to live our lives to the fullest. I wish you could live your life instead of waiting for me to die."

"I love you, Mom."

Why doesn't Hallmark make that card?

-- Post From My iPhone

Monday, July 6, 2009


I am fat. And I am okay with that for now.

I am going through a ton of rough things right now, and I'm okay that I'm eating my pain. My plan is to fix myself emotionally - which is going pretty well. The book, "Eat, Pray, Love" has changed my life. I read it when I really needed help and guidence and it was the perfect thing to read while my world was falling apart.

I'm slowly putting it back together, and hopefully it will be better than ever before.


-- Post From My iPhone

Wednesday, July 1, 2009

Appointment Scheduling

Today I showed up for my 9 am appointment and was told it was actually scheduled for 10 am. I know I wouldn't have done this because I originally had a 10am appointment across campus. And I have an 11 am appointment Hella far away from where this appointment is.

I hate scheduling appointments.

I now will sit in this waiting room freezing my ass off when I really want to be in my bed. Did I mention the waiting room smells like severe BO? Because it does.

I love trying to fix my crazy.

-- Post From My iPhone

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