Saturday, January 31, 2009

Caution: Euphoria

This is what swinging must feel like, but without all that icky STD crap. So many partners, so little time. We don't discriminate, as long as you're willing to jump on the dance floor, aw, shit. Now my metaphor is ruined. Well, I warned you.

I stayed up until the very last few minutes of UWMBDA tonight. Google it, it'll be there. I'm a ballroom nut. Last semester didn't go so well with the endometriosis killing my party. I happily sat at the table and watched everyone else dance, convinced I would never join in again.

But tonight, my friends, I danced and danced and danced. And once again, my feet gave out before my lungs. I gave hugs to so many people - almost all of my favorite people in the world were there - and none of the ones I hate! It was a FABULOUS kick off dance - especially if turn out stays high. I don't know where we'll be dancing - maybe in the streets, but we'll be dancing. But the asphalt is icky for out precious dance shoes... hmmm. But my point is that MY LUNGS didn't disappoint me. I was walking silly because my feet hurt, but my lungs were fine.

The lesson here is, nothing is permanent. That, and don't euphoric and drive? Yeah, I stopped at a green light on the way home. Then I looked up and saw it change to yellow and then red. Oops. At least I didn't run a red? I was too happy to drive ;-)

Let's see how my feet feel after ice skating tomorrow!

Friday, January 30, 2009

Busy Busy Busy!

This week has been crazy. Very busy. And this weekend will be too. But busy in a good way. Busy in the I'm seeing all my friends and spending time with Luca kind of busy.

A couple notes:

You know you've been playing too much Lego Star Wars when you're driving on the highway and think: "If I hit that thing over there with my lightsaber I'll get more coin thingys."

And Chris, I hate your mouse. I can't get used to it. Luca agrees.

Sunday, January 25, 2009

Bad January

I'm not a fan of January.

Maybe it's all this cold weather, or the lack of sunshine, or the fact that it feels like I am living at the north pole, but whatever it is: I. Hate. January.

It is possible my hatred will continue into February and possibly March if the weather doesn't stay above about 20 degrees on a regular basis.

I'm doing well lung-wise, and I'm getting better at doing things around the house. I think I'm having problems emotionally. January does this to me. I become bat-shit crazy somewhere between November and January.

Call it seasonal depression, call it nutty - I don't care what you call it, I just know that I don't feel quite right and I want to fix it. I'd like to fix it before the anger inside me boils over and I go on a screaming rampage. Sadly that anger will probably end up misplaced and directed at someone I really don't want to be mad at if I don't figure this out.

Thanks for listening to this brief announcement,
Your Crazy Cruise Director,

Happy One Year?

So a few days ago I got an email telling me that the little red dots on the side of my blog, the ones that show up on the map of the world, are going to be reset because it's been one year. This reminded me that some time ago, it was my one year anniversary of continual blogging. Um, yay?

I'm not so sure this is a thing to celebrate, because basically this blog is my random rants and thoughts as I try to gather them in a way that will resemble some sort of a book. So the fact that I have been rambling on here for a year and haven't finished my book may, infact, be a bad thing for me.

Oh well, apparently I have many dumb things to say and not so many great thoughts. Maybe I'll say something insightful in 2009.

Happy one year of reading this crap!

Tuesday, January 20, 2009

Sage Advice

I found the following HERE. It's the website of a guy who just got a lung transplant and is a patient of the doctor I am looking to switch to/get to know/meet.

"As we grow we learn that the one person that wasn't suppose to ever let us down, probably will. You will have your heart broken more than once and its harder everytime. You'll break hearts too, so remember how it felt when yours was broken. You'll fight with your best friend...and maybe even fall in love with them. You'll blame a new love for the things an old one did. You'll cry because the time is passing too fast and you'll eventually loose what you once had. So take too many pictures...laugh til it hurts... and love like you've never been hurt. Because every minute you spend mad or upset is 60 seconds of happiness that you will never get back."

I believe everything he said, even though I don't always practice it. Sometimes it's really hard to follow what you preach, but I'm trying.

I already take way too many pictures and love my family and friends more than anyone could ever know. And I laugh a lot. I love laughing :-) I just need to work on not getting so upset.

But there are things worth getting upset about - if you're going to do something about it. Like I am upset about some things at the UW Hospital, but I am working on getting them fixed before I take any drastic steps.


It's FINALLY here!!!

Eight years of waiting for a democratic president are OVER!!! It's been a long eight years, ya'll. Can't wait to see what's going to happen next!

Monday, January 19, 2009

New Things Coming...

So here is a glimpse of what I have planned...

My very. own. website.

...mainly b/c I want to set up a site for the knitting - which I'll probably explain more once everything is set up. But the blog will be linked to the site, info, etc. EXCITING.

Tonight I stumbled upon this. I clicked a link on my own page, and found the transplant site. Reading it calmed me - and for some reason, I just know that that is where I am headed. I think maybe I'm supposed to get a transplant eventually so that I can continue to fight for CF and organ donation and finally finish that silly book I'm writing.

Sunday, January 18, 2009

Turning My Frown Upside Down

I'm not feeling happy today. There are a myriad of reasons why, and yes, this has to do with why I was typing things to boost my ego last night. Today we try a different "pick-me-up" called the wonderful world of the internet!

These are the things I found amusing today:

*Prostitution Free Zone for the Inauguration. Thanks Dan Savage.

*Just read THIS. (again, Thanks Dan Savage). It's the reason I'm not happy about inauguration day. It's the reason I don't really want to watch it. Seriously, Barack, you couldn't find someone who isn't a homophobe?

*Today I watched a lot of THIS. I love you Tiffany <3 You are my inspiration! I may get there a little differently, but this is my plan. I'm going to keep fighting!

* My GREAT STRIDES PAGE! How many other ways can I ask you to join the walk team, SERIOUSLY - YOU. THE ONE READING THIS. Click, and go REGISTER. You know who you are because I sent you the email. L to the AME. Dad, this means you also... click and register, silly!!!

*This because Lauren and I plan on selling them!!!

*Color Esperanza It's one of my favorite songs.

*Knitting and watching The West Wing... because I'm so excited about the soon to be anounced online store for selling things made by the 65Roses Knitters :-) More to come!

*Buying yarn on eBay. Yay more yarn!

*A really great email from a really great friend.

*The Serenity Prayer:
God Grant me the Serenity to
Accept the things I cannot Change
The Courage to Change the things I can,
And the Wisdom to Know the difference.

It helps a lot. I need to remember it because there are things I can't change. I've been upset because I've found dating so frustrating - since, oh, always. And most of the time I feel that it's not fair to expect someone to deal with all the things I deal with daily.

I feel that it might be different if I only had Cystic Fibrosis, but I also have
Chronic Sinusitis
a debatable diagnosis of Chronic Fatigue Syndrome (my CF could just make me more tired, or the iron deficiency, or etc. etc. etc.)
Chronic Migraines
Restless Legs Syndrome
Post Traumatic Stress Disorder
and probably something I forgot.

This is not my list of complaints - I deal with them all fine. It's just a really long list of things to explain to anyone. I had to sit for quite a while to remember them all.

So thanks to all the things that cheered me up today :-)

Saturday, January 17, 2009

The Good Stuff

I'm making a list. This list is the things I like about me. The good qualities, the things I do well, the things I do. I've mentioned before I have trouble defining myself - and writing this list may help me feel better about that. There are some other issues that I'm also having trouble with, and writing as many positive things as I can right before I go to bed should help... I hope.

*I love kids. Little kids make me really happy. They make me smile.

*I'm a good friend. I'm loyal and helpful and a good listener - even though I'm also a very good talker.

*I give advice that is practical, but positive.

*I am creative. I have decorated my place myself, and often come up with great crafts and projects.

*I'm good at knitting.

*I'm smart - even though I couldn't finish college, my IQ is higher than average and I have that common sense thing going for me.

*I'm dependable. I do what I say I am going to do - unless I forget, which is rare. Or if I'm sick, but that's different.

*I'm upbeat and happy most of the time.

*I like to look at the positive side of things.

*I think every person is equal to every other person.

*I have musical talent and good public speaking skills and I'm a good writer.

*I'm ambitious and self-motivated.

*I'm giving - if you need it and I can give it to you, I will. Especially if it is time or someone to listen to you.

*I love people. I love friends. I love meeting new people.

*I'm strong and resilient.

*I'm a good dancer.

About to Drop

So there is big stuff happening in my land.

It's way past midnight right now, so I'm going to bed... but hopefully I will get around to announcing things later. There will be lots of new things to come in 2009!


Friday, January 16, 2009

One of those nights

It's one of those nights. I can't sleep - or maybe I don't want to sleep yet. Either way, I just have all these things rolling around in my head. I'm thinking of things I wanted - things I still want. I'm thinking of friends who I haven't talked to in a while. I'm thinking of the great friends I spent my evening with. I'm thinking of all the things I want to do for the CF Foundation, all the things I want to do for CF Clinic, all the things I want to do for the CF world.

I think I'll work backwards from that.

I want to help people with CF. When I was very young I wanted to be a Pediatric Pulmonologist - I wrote in my journal in middle school that I wanted to be a CF doctor because I know what it is like to live with CF and I would be able to help them physically and emotionally. I want to help CFers with the emotional side through the CF group. I want to start new CF groups all around the country. I want to structure our CF group a little differently.

I want to change my CF clinic. I want to be able to see my doctor. I want everyone to get the care and respect they deserve. I want doctors to understand why we are so grumpy when we are in the hospital. It's not really our favorite thing to miss two or more weeks of our lives by laying in a hospital bed. It's not really a great privilege to be woken by a doctor at 7am - or even worse, a phlebotomist at 5am. And then we're having problems breathing, sleeping, eating, and basically living. We're in pain and, at least for me, I don't want to take pain meds because my lungs are already bad - I don't want to lessen my ability to breathe. And that's why I'm short with you. That is why I groan when you come in the room. It's not because I don't have respect for you or your profession. It's because I had a shitty night and finally fell asleep less than two hours ago and you wake me up and want me to be perky and smile at you? Not going to happen. Come later in the day and I'll be nicer to you.

I'm excited about all the things I have planned for the Great Strides walk. I'm so excited by how many people are helping my knit items to sell. I'm excited by all the events Lauren and I are setting up. I keep thinking of new things to add and I just am excited.

The friends I spent my evening with are amazing. I'm going to mention that it is -12 degrees out with windchills of about -40 and my friends still came to my house for games night. I had so much fun talking and playing games with them. They are great.

I'm thinking about one friend in particular that I haven't talked to since New Years. I'm worried about her - and maybe we all are. I want her to know that we love her.

I'm thinking about phone calls I need to return and how I want to spend my weekends. I am thinking about people I haven't seen in a while and how much I want to see them.

And lastly, I'm thinking about things I wanted.

I wanted someone to hold my hand or put an arm around me when I'm feeling stressed because I have to try and get the UW to fax my medical records from the last 10 years - yeah, 10 (do you have ANY idea how long it would take to fax all that shit??? A very, very long time for some poor intern). I wanted someone to kiss my forehead and give me a hug when I am frustrated by the care I am getting at my CF center. I want someone who could encourage me to shop around for a new doctor without pissing off the current ones - which I have no idea how to do. The advice my mother has given me scares me and makes me want to cry. I'm just trying to make sure that I am getting the best care I need. Then I am going to try and make sure that every CF adult at this CF center is getting the care he or she needs.

I wanted someone to squeeze my hand to let me know it will be okay when I'm freaking out about how long I have before they put me on the transplant list. I wanted someone to make me laugh despite all this bullshit I am swimming through.

I wanted someone who can make me laugh no matter what. I wanted someone to stand next to me and remind me that I am doing everything I can - that I am doing well, that I am strong enough to go through all of this.

And the more and more I think about it, I realize that no one can fill that role for me. I am the one who has to reassure me because I am the only one going through this. I'm the only one fighting my fight the way I want to fight it and so I will be my own cheerleader.

But it would be nice to have someone tell me to stop typing and to go back to bed because everything will be okay.

And sometimes, I just can't get my brain to realize that everything will be okay.

Wednesday, January 14, 2009


This is one of those nights that I am feeling very thankful.

First, I am very thankful to have somewhere warm to sleep on this incredibly cold night.

I am thankful for family who will take care of me.

I am thankful for friends who will distract me when family drives me nuts. I have the most amazing friends on the planet. I can't think of anything I lack in terms of friends. My friends are diverse and wonderful. I love them with all my heart.

I am thankful for having so many people who care about me. Every year when I raise money for Great Strides it amazes me how generous people are - and how much more generous they are the next year. It's because of ya'll that I can raise money for the Cystic Fibrosis Foundation and hope to see a cure in my lifetime - even if that cure is too late for me.

I am thankful for my internet family. It might be a little internet family, but you people are real - and most of you have CF, and that means you know exactly what I'm going through. You know how hard winter is, and you know how frustrating the government is (Yay for a democratic President-elect and congress!), and how angry your CF center can make you and it's just nice to know that I'm not the only one who feels this way about these things.

I'm thankful for U.S. healthcare. There are many countries around the world that barely have CF centers (if at all). I'm lucky enough to have born in an industrialized nation with good healthcare.

I'm thankful that I am still alive. It's a good life.

Monday, January 12, 2009

My Days

My days in winter are pretty boring. Right now, I'm spending my time knitting, watching The West Wing, and generally not doing much of what I should be doing. I'll write more when I'm inspired by something.

Thursday, January 8, 2009

My New Year

My New Year.

This is my new year and I'm going to everything I can to fight. All I can do is fight. I need to fight and not let my disease consume me.

Thursday, January 1, 2009

You Can Never Get What You Want

I am inspired by songs. I always have been. "You Can't Always Get What You Want" by The Rolling Stones has always played a big part in my life. It's a very important song to my family, especially to me and my father. I think we are the sentimental ones.

When I was a senior in high school I had to choose a quote to put under my picture in the yearbook. Out of all the songs I knew, for what I was going through at the time the lyrics to "You Can't Always Get What You Want" seemed most appropriate. I couldn't fit all I wanted, so I chose, "But if you try sometime, you might just find You get what you need." I think of that quote a lot - especially when I am sad or have a bad day. I try and think if I have what I need. If I do, then I try and let the things I want go. I try and focus on what I really need - my family, my friends, and my lungs. I try and tell myself that when I lose one of those things then it is time to worry. But sometimes you really just want what you want.

I've been fighting to keep my mouth shut. I've been bothered recently by some of my friends. I've been bothered by immaturity and ill handling of some situations, but I try to tell myself that in the end, my friends are wonderful people and I will forgive them - because I need them. I have what I need.

Tonight I dealt with several upsetting situations, but one bothers me more than the others. Tonight was New Year's Eve. I had the choice of two parties - and I couldn't see myself having very much fun at either because of certain people who would be at one and certain people who would be at the other. I knew which one I would have more fun at - and which one most of my best friends would be at, and unfortunately they were not the same party. I chose to spend some time at the party better suited to my personality, and left before persons I don't like to be around arrived. I went to the party where most of my best friends would be and suddenly found myself surrounded by situations I didn't want to deal with and people I wanted to punch.

So I did the only logical thing. I drank. Heavily.

I held myself together by making comments to make my friends laugh at the silly situation. I did okay - pretty well, despite feeling like I was at Guantanamo, but with more torture. Then it was midnight and time for the infamous toasts.

Toast one was made by a very close friend. I love her so much, but my brain is having trouble not being a bitch. My friend toasted her grandmother who had a stroke on Saturday. I felt for her. It must be scary to lose your grandmother. But she didn't lose her grandmother. Her grandmother lived. Her grandmother is in rehab and doing very well. So I wanted to punch her. I realize that it's scary. It's not something you want. But it's something that happens, and you focus on how well the person is doing and the extra days they get to spend on this earth. You realize that you get another chance to appreciate them. You get another chance to say, "I love you."

In 2008 I had four friends die from cystic fibrosis. The same disease that throws me spiraling towards my very own death. The most recent friend who died was turned town for transplant for having a history of depression and suicide attempts and not following up with her mental health professionals. She got the 2nd letter confirming that because she hadn't followed up with her mental health professionals she would not be able to receive a transplant. This is when we guess she gave up - she lost hope and stopped doing her treatments. She allowed herself to die.

I didn't ask for this disease, but I try to handle it the best I can. I try to live with hope for better treatments. When my hope for better treatments dwindles, I hope for a double lung transplant. It is in no way a cure - it is trading one set of problems for another. It is in no way what I want. But someday, a lung transplant may be what I need. I can't get out of my head what I would do if I were turned down for transplant. I don't know what I would do. Even being on the list waiting for new lungs and dying from being too sick would be better than not having the hope of ever getting a new set of lungs.

I didn't want CF. I didn't want friends with CF - but they are how I learn to live with my disease. I learn from watching them and either following their example or trying to improve upon it. I need friends with CF, but I didn't want them to die. I certainly didn't need them to die. Did I? Maybe I did. Maybe I will learn from their deaths how important every single day is.

My friend's grandmother is old. She's 80. That's very many days. And she's still alive; she's able to say her goodbyes. Three of my four friends who died from CF in 2008 were younger than 30. That's not so very many days. They deserved more days. They deserved more life. I know they wanted more life - I know some of them needed more life. I needed them to have a little more life so I could say goodbye.

Tonight, after my friend toasted her very strong grandmother (and I don't doubt the strength of her grandmother or the seriousness of a stroke, I just had a hard time dealing with my friend who just kept emphasizing what a big deal it is), someone else toasted to life. And I lost it. I didn't want to be there. I didn't want to be there with the couple sort of kind of trying to hide their very obvious relationship and the awkward pair that made the whole night full of tension or the asshole who just wouldn't leave me alone. If I give you several million looks of death and I seem like I might jump across the room and rip your throat out, why won't you stop talking to me?!?!

So I lost it. I cried the ugly cry. I was done. I am done. I'm not going to deal with bullshit (and I mean it! I'm drunk and belligerent! Well, I'm slightly tipsy with a wish to be so drunk I could forget about all of this). I'm going to ...well, I don't know what I'm going to do. I guess, first, I'm going to bed. And then, I will wake up and try to figure out how to deal with the shit storm of things that exploded in my brain.

Eventually, I will pick myself up with a song. Maybe it will be, "The Luckiest," or "Seasons of Love," or maybe even something silly like, "I Don't Want to Live on the Moon." But most likely it will be, "You Can't Always Get What You Want." And maybe I'll change the lyrics in my mind, at least for tonight. I might say that maybe I will never get what I want, "But if you try sometime, you might just find, you get what you need." And maybe all of this is what I need.

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