Saturday, May 31, 2008

Go Ahead and Ask

Sometimes I don't like when people ask me how I am. Not the people who know me really well and know about my CF - they actually care and I feel comfortable saying, "Well I was just in the hospital and I feel really shitty," or "Maybe I'll have to have IVs soon," or my favorite, "Well, I'm alive." It's the casual friends who don't really get my CF that I have a hard time answering that question for. I say, "I'm fine," "I'm okay," or "I'm good." And no matter how I feel I may give you any of those three answers. So usually it doesn't matter when acquaintances ask, because I don't really give a real answer.

But today? Today, you can go ahead and ask because I am Fan-Fucking-Tastic!!!

Today? How was my day? Fucking Fabulous.

I rolled out of bed this morning later than I had hoped, but I got up, and I showered. Those two things don't usually ever happen in the same day - the getting up at a specific time and the showering. But this morning they DID happen. And then I left my house around 9am - something that would usually not happen with those two other events (and my day keeps going on like this... so just keep in mind that in the last several months the getting up and the showering don't usually happen in the same day). I drove to pick up Chris and Kyra and we went to the farmers' market on the square. And we walked from the car to the square... and then we walked ALL THE WAY AROUND THE SQUARE! Stopping and shopping and talking and ...remember that the getting up and the showering thing? Yeah. I did both of those AND I walked around the Square. It's a big square.

THEN. Then we watched Kyra's preschoolers perform in the cutest preschooler performance ever, and then walked around and finally decided to go back to their place for a rest and to chill before going to a barbecue. THAT'S RIGHT... I had MORE things planned.

So I'm sitting on the ridiculously comfy couch in Chris and Kyra's place, and Chris is playing the piano. I sit there, close my eyes and it's so relaxing listening to him play, I think "wow, I should hire him to play for me more often," and the next thing I know it's an hour later and I'm waking up. Apparently Kyra and I had both conked out on the couch within the first five minutes of Chris playing.

Then we went to Holly's for a swim and food. Nice shindig, and we should definitely do it again. I volunteer her place for her at some later date this summer. I never actually got IN the pool, but I stuck my feet in. That was enough water for me, thank you.

Wait for this... after the barbecue - YES THERE'S AN AFTER THAT! This was already more than I had done in any one day - since, well let's just say I don't remember the last time I did this much. We once again returned to Chris and Kyra's and this time I didn't fall asleep. We got ready and went, um... where? Oh yes, DANCING.

I danced more than I have danced all semester. Most of the semester I attended every. single. dance. but there were nights I would go home after dancing only once. I don't even remember the number of dances I did, but I know they felt damn good.

And now, I am finally home at 11pm, having left here at 9am, and I barely remember a recent day in which I was AWAKE for more than 12 hours, let alone GOING for more than 12 hours.

I think that I will be in just perfect shape for Europe, and I couldn't be happier.

So tomorrow, feel free to ask me how I feel because I will tell you, "FABULOUS!!!"

Friday, May 30, 2008

Travel Photos

I have launched another blog (I needed that like I needed a hole in my head) for my travel photos.

It's http://dancing65rosestravel.blogspot.com

Yeah, it's a little long... but I wanted to keep it so I would remember it. Also I wanted a separate blog b/c in the next couple years I plan to travel a lot, hopefully, and I want to keep my mom updated with the photos. This way Mom won't see my original blog - this one - but she will be able to see the photos I upload.

Cheers! And 8 days until lift off!

Carla

Thursday, May 29, 2008

Thank You

Tonight I know my CF is a gift. Because of my CF I have met wonderful people - my CF Family here in town. We were all gathered tonight for our group meeting - and there were so many of us there it was wonderful!!!

I know my CF is a gift because if I didn't have CF I wouldn't have met my wonderful CF family or my social worker Damien, who if basically Obi Won. I'm so excited to work closely with him this summer and learn from him. Working with him will be so much more than earning a degree in social work. It will add to my degree in LIFE.

And that's what I have. A degree in Life.

After tonight's meeting I called my parents and put them both on the line. Dad was worried when I first asked to speak to both of them at the same time, and I said, "Don't worry, nothing is wrong. I just want to talk to you both."

And I thanked them. I see the other CF people who have to work themselves basically to death just to get by - and they have to make decisions on whether or not to cut back on their hours at work and they have to go through so much. I know that when I made my decision to quit college it was basically forced on me because I knew how terribly I was failing. And my health was failing because of it.

I thanked my parents because they have allowed me to live on my own and have the freedom I want. They have allowed me to live in the town I love near the friends I love and the dancing I'm addicted to. I live two hours away from my parents, but they still come down to help me when I need it.

I am so grateful for my parents. Not everyone can afford to give their children opportunities like my parents have given me, and I know that. I know they could have forced me to live with them where I would have been unhappy. I have no idea what I would have done if I lived with them because it's not the life I wanted.

Dropping out of college wasn't the life I wanted, either, but if I could go back, I might drop out sooner. No, I probably wouldn't change anything because I learned a lot from it all. All my experiences - especially my CF have made me the strong, outspoken person I am, and I wouldn't trade that for the world.

I know my mom and I don't always get along, but she is one of the best people in my life. Even when she's mad at me, if I really need her I know she'll be there. She's usually only mad because she worries about me all the time. She worries about me when she can't see me everyday, and that's why I call her everyday. That, and because her voice is reassuring to me.

My parents are probably the best parents a CF kid could have. They have done everything to give me everything and I am grateful.

My mom told me on the phone that the other day she was complaining to my dad about her ankle and how much she is suffering with it, and she said, "I don't know how Carla does it. She suffers with things everyday."

And it made me cry even harder then I already was, because I want my mom to know that this isn't so bad. My whole life isn't suffering. I have days when I'm frustrated, or days when I'm in a lot of pain. And there are the days when breathing is especially hard, but then I just start IVs, do what I have to do and I get better.

It's my life, and maybe I'm just used to it, but it's not so much suffering. It's much more fun and laughter and smiles than suffering. And it's all because of my parents that my life is like that. Without my parents it wouldn't be more smiles than suffering.

I love you Mom and Dad. Thank you.

Another "Are you kidding me?" Post

So I thought I told everyone this was done. I did that, right? The whole bashing me and Toni commenting thing was over. Right? I swear I may have mentioned that once, twice or a million times.

Anyways, she IMed me this today (I am aware some of you advised me to block her, but I always feel really bad about blocking people - some of you may remember the "Blocking Alex" attempt of 2005. I felt so guilty about blocking him on facebook that I un-blocked him and re-friended him. He never even noticed that I had blocked him in the first place. Right. I could have many things to say about the whole Alex thing, but I'll move on and go back to talking about Toni, hopefully for the VERY. LAST. TIME. ...and I'm so fucking serious about that.).

I'm also including what I wrote... Maybe I was a little harsh, but I don't think this girl understands how little I even care about what she says. It no longer has meaning to me because she has made a complete fool of herself. Personally I can't even respect someone who would try to convince me that my depression is my fault instead of a chemical imbalance in my brain. Okay, so here's what she wrote (I've added comments in italics... and when this happened I was trying to leave to be on time to my CF group meeting):

gahitstoni: This is not me being mean, it's just a quote you can analyze and apply to yourself: Once you have started seeing the beauty of life, ugliness starts disappearing. If you start looking at life with joy, sadness starts disappearing. You cannot have heaven and hell together, you can have only one. It is your choice.
(She doesn't get how I view life. She has no idea. I view life as wonderful and amazing and full of opportunities and love and greatness. It's how I look at everything. My ranting in my blog may not always reflect that, but that's what I do already. By this point I am just too pissed to even care about her or anything she wants to say to me)

BailarSinLimites: you don't know me. go away.

gahitstoni: you block my comments just because you know they are true
gahitstoni: they wouldnt get at you if they didnt hit home

BailarSinLimites: i block your comment b/c i'm done listening to your bullshit and i have no idea why the hell you keep bothering me

gahitstoni: because you did that! i was going to comment that your new blogs havent been bad. but i figured you would block positive comments as well. theres no point with you
gahitstoni: im just asking you to take a step back and see things the way i see them

BailarSinLimites: i will block comments from you

gahitstoni: and maybe you will understand why i dont believe half the things i do

BailarSinLimites: you don't know me. you don't know how much I DO look at the bright side of life - how much i love life
BailarSinLimites: and i will NEVER believe anything you do

gahitstoni: you never showed it before. its bothersome when you constantly are negative

BailarSinLimites: Well then don't read it.

gahitstoni: you dont get it i dont think
gahitstoni: you have cf
gahitstoni: i care about you simply because of that
gahitstoni: but when you are all down
gahitstoni: i dont like you

BailarSinLimites: that's your problem, not mine

gahitstoni: so then i wont stop reading your blog. i want to know how you are doing. i just think you can go about saying some things in a positive way
gahitstoni: like that day you defended yourself by saying: you dont deal with cf, diabetes, fibromyalgia, ptsd, clinical depression.. yadda yadda
gahitstoni: that is what i call pulling out a serious sympathy card carla

BailarSinLimites: then you write a blog and say things YOUR positive way
BailarSinLimites: FUCK YOU
BailarSinLimites: I'm done.
BailarSinLimites: I have a meeting to go to
BailarSinLimites: a meeting with CF people who don't criticize me

gahitstoni: i am writing a blog actually

BailarSinLimites: good for you.

gahitstoni: they dont criticize you because they dont wnat to think they dislike a girl with cf. poor carla
gahitstoni: no
gahitstoni: i do it because you need to see it the way EVERYONE else sees it, secretly or out in the open

BailarSinLimites: Shut the hell up.
BailarSinLimites: We're done toni.

gahitstoni: whatever

Yes. Whatever is right. If you like, go hunt down Toni's blog and enjoy her Tom Cruise view of the world. I'm sure her blog is going to be Sunshine, Lollipop, Rainbows and Everything.

ADD Kid

My brother is an ADD kid. So am I, but I don't listen to dental floss when I'm not on medication. That's right, I'm on the phone with my mother and she's describing to me how my brother is playing with a piece of recently used dental floss, and my brother's excuse is, "I'm listening to it."

My mother swears she's going to lose her mind if he doesn't go back on his meds soon. My Dad says that Darin has to go back on his meds before Europe because they have to take care of me. That made me laugh.

Wednesday, May 28, 2008

Consequences of OCD Tendencies

I'm done packing.

Yeah, that's right. I have a week and 1/2 to go and I'm done. I have to wash two items of clothing and wear them to the airport and I'm done.

I looked at my suitcase before bed and thought of one thing I wanted to put in it. Then I thought of another. And it snowballed like that until the suitcase was full and I was done packing. Now I just have to get together all the cables I need to take (phone charger, mp3 player & charger, Delta headphones, computer and accessories, camera charger, camera connector to computer cord, and I think that's it...), put my computer in my brother's backpack *this is going to bug me b/c he's going to arrive Saturday night before we leave EARLY Sunday morning....*

I have to throw my toiletries in the suitcase and I'm done. Done packing. Yep.

I also have to get a couple more meds so I don't run out mid trip, and I need a letter from Dr. Cornwell and to put together my medication folder. Well, I have a week and 1/2 to get that stuff done.

And I hope my new purse arrives. Everyday when the mail comes and it's not here I freak out a little more because I'm nervous that it won't get here on time and last minute I'll have to go buy an acceptable traveling purse and then I'll have to return the one I bought online.

Okay... breathe. And now bed.

Note To Self

Dear Carla,

Don't buy anything in June. You are poor.

Thanks,
Carla

I Just Can't Wait to be King

"Everybody Look Left!
Everybody Look Right!
Every where you look
I'm standing spotlight!

Not Yet!"

It's so true. I have so many big plans. Big things I want to see and do!

I want to get my book published, first. Well, I should finish writing it first, but I also think maybe I should have an editor look at what I have before I finish.

Then my next goal is to get parent/child support groups for CF started here in Wisconsin.

Third, I want to help set up adult support groups for CF nation-wide. I know our CF group is working on it slowly but surely, but I want to be the one traveling and meeting people and helping to oversee the start-up of the group. I'd love to see all these cities in the US and help all the people with CF at the same time.

My last goal would be to oversee the start-up of CF support groups for kids and parents nation-wide.

Those are pretty much my life goals.

Right now my OCD tendencies are kicking up really bad. I called my parents crying because I have to see the nurse practitioner in July instead of actually seeing my doctor. And I couldn't stop obsessing about it. That's about the millionth thing I've obsessed about today. I like napping because it stops the obsessing.

Tomorrow will be good - I hope to pick up my jewelry, go to my CF group meeting, and maybe work on the dance team website.

Saturday looks like it will be busy too, which is okay with me. I like busy :-)

Honesty

So for those of you who want to see more happiness in my blog, go ahead and skip right over this one. This is another very honest post. Things I need to admit to. Things I know I need to change. Things I wish were but maybe can't be. Basically, you could consider it complaining if you want to. I don't think of it that way - I see it as being honest with myself.

The past two days have been strange. I don't feel quite right. I've been sleeping too much again and I've been picking. I'm anxious and I don't know what's wrong.

Yes, I talked this over with my father and he thinks it's the tapering off of the steroid. Sure, go ahead and criticize me about speaking with my father for his medical opinion. Because he went to medical school and actually cares about me. That's why I talk to my dad. Anyways, he has told me that I can't stop the steroid. I must continue even though my mood has gone to hell, I'm picking and that makes me feel even worse. We have to take care of my sinuses.

My dad told me to schedule surgery for later this summer. I've decided I don't have time for a surgery. I will wait until I get completely miserable to the point where I can't stay awake because of the pain, and then I might schedule a surgery. Until then I just want to live my life. I'm too busy to have surgery this summer. Maybe next summer.

So I'm freaking out that I won't get packed in time for Europe. I don't know what to do so I'm going to hide in my bed for the rest of the day - watching TV, eating, and ignoring the world. I will try not to think about anything so I won't be stressed about anything.

Once I am off the steroid I hopefully will feel much better and then I will function and clean my place and pack and things will be happy again.

"le sigh*

Tuesday, May 27, 2008

Looking forward

*Today I am looking forward to going to lunch with Carly. She's one of my favorite people to talk to.

*I am looking forward to doing some packing this evening and organizing things on my new bookcase.

*I can't wait to pick up the new jewelry I bought.

*I can't wait until Saturday the 7th, when my Dad and brother will arrive.

*I can't wait until the wee hours of Sunday the 8th, when we get up, pack up the car and drive to MKE to deprat!!!

*I can't wait to arrive in MKE. I love the smell of that airport. So many good memories there.

*I can't wait to be on the plane and be able to write like I want to write. I want to journal and catch up.

*I can't wait to be away from here for awhile and in a fabulous place with just my dad and brother.

I can't wait.

Turmoil

It's amazing how one person can make you doubt yourself. One person you have never met, one person who really knows nothing about you can decide to judge what you write about yourself on the internet and make you doubt yourself.

I've decided that Toni is done commenting here. From now on all her comments will be deleted. I have decided not to moderate comments and I no longer want anything to do with her, so I will delete comments as I find them (they are all emailed to me). SO, if you see anything she has written feel free to comment or ignore it, whatever. I will ignore it and then delete it.

The debate whether my mental issues are real or not is OVER. Way more than over. No one else is going to be allowed to doubt me either.

I will shut you down so fast you won't know what happened.

Thanks,
Carla

No Fucking Way.

So here's what Basher sent me in response to my last post:

"I understand why you think it's all real. That's the point. Your dad is a psychiatrist. If my dad was a psychiatrist, he would back up my mental illnesses to let me have a way to express what I was feeling that went along with my CF. Have you ever stopped to think maybe being around him, talking to him, may influence how serious you think your "conditions" are? I'm not saying anything against your dad, I don't know him at all, but in general, if I was able to be in touch with someone every day who could justify all my ailments, I might believe a little too much and tell myself there is more wrong with me than there really is. I'm saying this on here so you don't stop writing your blog. I like reading it, just when you aren't all Debbie Downer is all."

No Fucking Way. She sent me an IM so that I won't stop writing my blog. Great. Like that's good in any way? Like I wouldn't immediately post it here because it's about my blog and attacking me. Who attacks someone because they are getting help for some serious problems they had/have in their life. SERIOUSLY?

As if my father were "justifying all my ailments." Are you fucking kidding me???

I'm glad you "understand why I think it's all real." It's not because I THINK it's all real - it's because it IS real. Some of this went along with my CF, yes - the depression was probably because of my CF, well not because of it, but whatever. My point is that the CF Foundation themselves have recently said that in adults with CF there is a high incidence of depression that should be TREATED. The CF FOUNDATION, rulers of "We don't care about patients or how they feel" Land, has admitted that there is depression in CF patients - a very high rate of it.

I don't just sit here in my own little world. I am very active in the CF community in this town - doctors, patients, social workers, nurses, and the foundation. It's all a no-brainer to us that CF patients are depressed. Duh. And Duh their quality of life improves once treated for their chronic depression.

My PTSD was caused by something completely different, and I was diagnosed by three professionals other than my father before my father even knew what I was going through .

This may be the most times I have used the word fuck in an entry, but FUCK, are you fucking kidding me with this fucking piece of fucking bullshit???

I'm sorry that one girl in PA doesn't believe that mental illness exists. Like I've said before, that is ignorance on her part, and it has nothing to do with me. So I'm hoping this will be the last time I ever have to pay any attention to her, because I'm done stating my case, I'm done justifying how I feel. I'm done. This discussion is now closed.

Monday, May 26, 2008

The Blog

I don't know what to do with my blog. I've been thinking about the complaints I've gotten for the depressing nature of my blog... and yeah, I re-read the whole thing, and I was obviously depressed the entire time I was writing, until it got better. I can tell the week where my meds started to work - I changed and people continued to give me shit.

The one person in particular who was giving me shit is younger than me. She has CF and is going to school and lives with her parents. I don't know her except through a few online conversations and postings in a group's discussion board. I don't know where she thought it would be a good idea to anonymously bash me and everything I said for more than a month, but that's her business.

There are so many things I could say - I could defend my PTSD and my depression because they are real and exist. She "doesn't believe in most psych-illnesses" (yeah, she texted that to ME, the daughter of a PSYCHIATRIST). I have been raised to believe that mental illness is real. People suffer from mental illness just like they suffer from cancer, or here, I'll do it: Cystic Fibrosis.

Saying my PTSD doesn't exist and is all in my mind is like telling me that my CF is all in my head. They are equal. If I weren't on meds for my PTSD or depression I probably would have killed myself by now. My PTSD was that bad - I was suicidal. I was hurting myself daily - I was a picker, which is like cutting, but I used my fingernails on my face, back, chest and pretty much anywhere I could reach. If I made myself ugly, he'd stop stalking me. And then I would cover it up with a shit-ton of makeup, which never really covered anything, anyways.

So do I believe I have made the right choices? Yes. Do I know what I'm talking about? Yes. Do I need the medications for my mental illness just as much as I need the ones for my diabetes and my CF? Yes. Was I really fucking brilliant to finally recognize my depression early before IT made me suicidal like my PTSD did? Yes. Am I super glad a small dose of anti-depressant has me controlled for the moment - controlled enough to where I can take steroids for my sinuses without mood swings? Oh hell yes.

I still have days where I have things that will trigger PTSD moments - and sometimes I still pick - but I'm doing so much better. I started the picking at age 10. I remember the first time I did it. It was right before we went to Europe in the summer of 1996. I finally overcame my picking more than 10 years later - picking that escalated with the PTSD to the point where, well I don't know how to describe it. It was daily and it was severe. To stop, I had to cover all the mirrors, and even then until I was in therapy long enough I would still find ways to pick - I was picking in my sleep it was so bad. Even still, when I'm really stressed I will pick in my sleep.

Because of how I was raised and what I've been through myself, I would never doubt the severity of mental illness. That's just something you don't do. Imagine my hatred for Tom Cruise for what he has said about mental illness. The fact that they let that fool talk on national television has made me cry. I try not to judge other religions, but the way Scientology views mental illness is just unbelievable. Okay, we're not going to go there.

Moving on. I was re-reading my blog. I was conflicted on whether or not to even continue blogging. But I think the ignorance shown by a member of the CF community towards what other CFers might deal with is one of the reasons I should keep writing.

I've met some amazing people online. And sure, you never know what people are really like on the internet, but I have gotten some really good conversations, advice, and support from this blog, so I'm not going to stop writing.

I may not write as frequently until I completely make up my mind about how I want to continue this blog, but I will keep writing.

A Day at the Zoo

So I have finally figured out how to post more than 5 photos in one post... It was easy, but now I know that you have to upload them backwards-ish. So these are totally out of order.

Kyra, Chris and I went to the zoo today. Great Place, the zoo - and I had never been to the one here. Right. Getting on those things I should do now that I've lived here 3 years. Enjoy the Zoo photos :-)


I enjoyed this one, since we thought about taking my wheelchair for a second, but I am healthy enough to walk the zoo! Yay for walking the zoo! Yay for wheelchairs on a steep hill!!
Giraffes!!! Yay!
I'd never been this close to an ostrich before.
OMG... no zoom, the thing was just THIS. CLOSE.

Newlyweds at the Zoo - and look! They match!!!

I'd never been this close to a flamingo before!!!

Black Bear, Black Bear, what do you see???




A Fun Day At The Zoo!!!

Saturday, May 24, 2008

All You Need is Love

What a beautiful day for a wedding!


Not only is the couple beautiful, but it's hard to screw up a photo when the background setting is this awesome!




Dance Girls at the reception!

The Wedding

1 Amazing ceremony, dozens of amazing people, 4oo photos, several angry text messages, one great dance, and load of other stuff later, I'm pooped.

Will write about the wedding and the reason there were angry text msgs later.

Friday, May 23, 2008

Photo Fun -aka Practicing being obnoxious for Italy

Figure on seeing many more photos just like this... but hopefully a better, more Italian background.

Instead of Red Lobster, these photos will be in Italian restaurants.


Italian Flowers, not ones from here.

And artsy stuff from shops in Italy, not one on Monroe St.


And hopefully cute stuff like this:


How many more days until I board that plane? 16... just a little more than a hospital stay. I can do this. I can be patient.

Figuring It Out

I figured it out, and well that sucked.

So I lost a "friend" I met online. We've never met in person and we've never talked on the phone. That's right. She drunk dialed me once, but other than that we don't know each other.

I'll write more about this later. Include some of the direct things she said to me in a Facebook message. I'll be commenting on how she doesn't believe depression exists and that what I've been through isn't bad enough to cause PTSD. Because she's an expert.

And I'm considering blocking all anonymous comments. You will have to leave a name of some sort in order to comment.


On 2nd thought... I won't write more about this later.

Thursday, May 22, 2008

More on this, because it's not old or anything

Someday I'll give up... but now that I think I know who "Anonymous Carla Basher" is, I have a couple more things to say.

1) Thanks to those who defend me :-) It makes my inbox interesting to go through, and uplifting.
2) To Basher, who posted this and other things:

"And if you truly knew who I was, you would realize that even friends see how pitiful you are, and not only enemies. I know ENOUGH about you to back my judgments, so I don't feel bad saying them to you because you honestly do need to grow up and start dealing with your emotions better than you do.

-A former friend a.k.a. Justified Anonymous Carla Basher."

I only have so many friends with CF - most of whom I've met online and have never met in person. Most of whom I don't know. Most of whom don't know me, don't interact with me on a regular basis, and never really know me. There are a couple girls who I've talked to more, and a couple guys. Since three of the four people I'm thinking of have said they love my blog and I've talked to since this, I think I know who you are.

I know some CF people here in my town, but since I've seen all of them recently (at least the ones I care about), and I sincerely doubt that ANY of them would quote Hannah Montana. Seriously. Well, the guy I'm thinking about shouldn't be quoting her either, but whatever floats his boat. I don't know him either. I just met him online and talked to him on the phone.

I don't want to accuse the wrong person, so I won't. But it'd be really great if you would just own up to bashing me and then we can both move on with our lives.

But really - you give me all this to write about, and then you expect me to not provoke you? Are you kidding? This shit is golden. I get more comments on this crap then anything else I write about. You're the glue that holds me to my loyal readers - the ones who don't seem to think I have to fit a mold or be anyone but me.

And P.S. I never claim to represent all CFers - I have links to blogs of other CFers - I believe we all deal with this VERY differently, and I write about what it is honestly like. I don't do it for pity. I do it because what is the point in sugar coating the things that happen to me? There isn't one.

...oh, and if you're the person I think you are, I have some VERY choice words on how you live YOUR life, so don't even go there. Nah, actually I've pretty much ruled out the person I thought it was - so what the hell, WHO ARE YOU!?!?!

Today and Tomorrow and the Next Day

Today I had my sinuses sucked out. It was AWESOME. Of course, the upper sinuses cannot be suctioned in clinic - don't ask me why, I have a high pain tolerance - today didn't even hurt. Dr. ENT said, "Hold on I know this really hurts!" and I was, "Um, is it supposed to?" I thought it felt really good. So there's that.

My other obsession of the day (besides Grey's Anatomy) is the cocaine nasal spray. Wow that felt good, and now I know why people get addicted to drugs. If I knew how to get a hold of cocaine I would make my own nasal spray it helped that much. I was in NO pain. It was sweet. I can't wait to go back in two weeks and have it done again.

I also went to the pharmacy, and I had them order and fill ALL my prescriptions. I can't wait to take photos of the big-ass amount of drugs I haul out of there tomorrow. Photos will be posted.

A little over two weeks until I leave for where? Oh, yeah! Europe! My dad told me the first day we're going to Giti's house for lunch after we arrive. Our plane lands around 8am their time, so after customs and getting the bags and the car it'll be around 11, so we should arrive near Nurnberg around1pm, and Giti said just in time for Mit Tag Essen!!!!

MIT TAG ESSEN!!! So my memories of Europe when I was 10 TOTALLY include the first meal we ate when we arrived at Giti's. I'm sooo excited for that meal that when Dad told me over the phone I nearly cried! KLUSA (let's pretend that's spelled correctly)!!! Aka, BIG FREAKING AWESOME DUMPLINGS. This woman REALLY knows how to cook. Everyone in Europe knows how to cook, except the British, but we're not going to England this time.

Germany Germany Germany!
Italy Italy Italy!

The places where I've had the best food ever!
I'm going to gain so much weight!

It's going to be the best time ever!
Even if I can't walk and get really fat!

Germany Germany Germany!
Italy Italy Italy!

...that's my little Germany/Italy song.

And that's pretty much all that's going to be in my head after Saturday. Until Saturday I am singing the Chris and Kyra are getting Married song!

And I thought this quote totally fit how I feel about their wedding.

"Oh, I get it! My wedding is all about you."
"Right."

Well not really, but before that, in the show Meredith went on and one about how Christina has to get married b/c her getting married will renew Meredith's faith that "people like us" can get married. Totally.

I'm so excited for the wedding :-) Last night hanging out at Chris and Kyra's was fun (Their blog is linked on the left- The best couple ever), and I can't WAIT to see Kyra's finished dress!!! And the bouquets! And the reception! And Oh, I love Weddings!!! :-)

Tonight I'm cooking out with people at someone's house (yesh, I love shpecifics), and then we're going to watch a show. Good times.

MIT TAG ESSEN!!!! (which may actually be one word - you know those Germans)

Wednesday, May 21, 2008

A word about my sinuses

Ow.

(Note, this is not a complaint. I am simply stating that I am currently in a state of pain.)

WARNING: EXTREME AMOUNTS OF SARCASM AHEAD.

Even though the pain is so bad I can barely stay awake, I am still able to run and jump and sing and dance (because, DUH I'm addicted to running and can't stop... I LOVE my lungs and all they do for me!) and I will be doing a marathon soon, so watch for that. I will be DANCING the marathon, and singing the whole way. What do you think, should I sing Hannah Montana??? And High School Musical??? Whadda ya think???

And since the only thing that seems to help the pain are my migraine pills, I will be popping them like candy. I will put them in rolls and eat them like Smarties. Mmmm Migraine Smarties. Never mind the fact that you are never supposed to take more than 2 in a 24 hour period. I need them to stop the pain of the goo oozing into my brain, so I'll eat them like candy.

And maybe it will kill me, so despite the fact that I am smiling in those pictures, I will kill myself like Anonymous Carla Basher predicted. That's right. I'm going to off myself over some sinus pain right before I take my dream trip to Italy. It's a good plan - as long as they plan Hannah Montana at my funeral.

More comments. (Seriously, Aren't you tired of being bashed by my friends by now?)

Some people may not understand why I let the Anonymous Carla Basher keep bashing. Why? Because it's really fun for me. This time, he/she/it quoted.... wait for it.... no keep waiting, this is good.... he/she/it quoted HANNAH MONTANA. Right. See you laughed along with me.

How old is this kid???

"In the words of Hannah Montana: "Life's what you make it."

Lets see how many more conditions you can list... The pity factor is rising and rising. Maybe you should just tell us about dancing and singing and happiness instead of complaints and sadness. You are the one making your life seem so bad. If you would just stop looking at all the negativity and focusing on all of the bad, then it would not be so irritating. "

If I irritate you, stop reading. How many times have I said that??? Quite a few. But now, this amuses me. The online fights with people who don't know me and just judge me by what I write really amuse me.

I'm pretty sure this blog isn't as negative as that person sees it. I'm pretty sure, since I AM the one writing it. I'm pretty sure there is sarcasm behind most of what I write. Pretty sure, because I wrote it. I'm pretty sure the person who picks fights with me online and quotes HANNAH MONTANA - the Queen of 9-year-olds, may just be a 13-year-old with some issues.

Who quotes Hannah Montana and expects to be taken seriously???

I secretly LOVE the anonymous basher, because without him/her/it, what would I have to make fun of several times a day???

Ooo look!

"The way I look at it, she complains allll the time. I have seen 6 year olds deal better with life than she has. It's not impressive. At all."

I got this one, too, and I'm not sure if it's from Anonymous Carla Basher, because Anonymous Carla Basher already commented on this one, but maybe he/she/it was replying to Chris' comment. I'll look into it... because I might go mad from happiness if I have ANOTHER stupid basher... oh man, I don't think I could handle the fun. Seriously. I will type entry after entry of complaints just to see them flip their lids. I'll make complaints up just to see them freak out! Wow.

Also, when was the last time a 6-year-old *yes, please do it correctly,* had to worry about anything other than coloring? Really? Is being a six-year-old that hard? Because I remember being six, and my one goal in life was to sit at the arts and crafts table during centers.

Oh, sadly, I think it's the same person. Anonymous Carla Basher strikes again. Everyone else is great.

Thanks Amanda for the recipe, I'll try it if the doc can't help me tomorrow. :-)

And maybe we should all listen to a little more Hannah Montana and then we can be just like her, and have the Best of Both Worlds!!! YEAH!

Comments

To the CFer who keeps commenting here and stating his/her opinion on how I don't know how to live my life... stop reading my blog.

This was a fun comment:

"I never get post-hospital depression. Usually when I am out of the hospital, I'm a bit overjoyed to be honest. My hospital IS structured. Don't act like your hospital and life are so different from mine. Essentially we are the same people except I know how to deal with life and you don't. "

Yes, I am overjoyed too... and then I'm overwhelmed for a couple days. Fuck you. We are NOT the same people. If you also suffer clinical depression, anxiety, post-traumatic stress disorder, restless legs syndrome, fibromyalgia, and diabetes then you can tell me we are the same.

Also, I don't go around telling people how horrible they are at living their lives.

And this blog is a glimpse into my life. A glimpse on how I deal with my CF and various other bullshit that I deal with. Usually I don't tell you how often I stand in my kitchen and dance and sing at the top of my lungs. I don't tell you about how much I enjoy driving in my car with the sunroof open singing to a mix my brother made. I don't talk about the skipping or all the dancing I do in my own home. I don't talk about how much I really love life. Maybe I should. Maybe you would shut the fuck up, evil CF commenter.

Sinus Trouble

I'm having problems with my sinuses. I was doing so well until the stupid pollens came out. Now I wake up every morning with a terrible headache and I can't go back to sleep.

This will soon be replaced with the constant unbearable pain that will make me want to do nothing but sleep. It will make my face puffy and my eyes puffy and maybe I and my family will be the only ones to notice these changes, but they are there when this happens. This summer will be my third summer in a row needing sinus surgery. BOOurns.

So here is MY plan:

Get them to suck out my sinuses outpatient. This will take some convincing, but I think I can do it. It will be pretty damn painful but will require less recovery time than surgery. This will happen in the next two weeks - Next Tuesday would be a nice date for this to happen. Then I will have a little time to recover and a little time to pack and then I'm off to Europe.

Hopefully, that will hold me all summer and until next summer. This summer I just don't have time for surgery. I want to be dancing and going to concerts on the square and hanging out with friends. I really don't have a surgery in those plans.

My sinuses can make me a miserable blob of nothingness, and I refuse to be a miserable blob in Europe. I might end up being a pain in the ass for other reasons (like making my family stop every two seconds so I can take another picture), but I'm not going to be miserable because of my sinuses. This is my perfect trip, and that's the way it's going to be: perfect.

Yes, I may have to be pushed in the wheelchair because my walking skills aren't so great, but whatever. I can handle that. Being miserable and sleeping in the wheelchair is something I can't and WON'T handle. I refuse to let that happen.

If I have to buy a suction kit and suck out my own sinuses I'll do it. I need them cleaned out so I can function more like a normal human. Normalcy would be good.

Tuesday, May 20, 2008

Nightmare

I had a nightmare. I didn't remember it until later today, but something was bothering me all day.

I woke up and ate breakfast around 8:30, and then went back to sleep because I was tired, and when I woke up the 2nd time all I remembered was trying to name all of Santa's Reindeer. You know Dasher and Dancer and Prancer and Vixen. Comet and Cupid and Donner and Blitzen. And Rudolf. Is that how you spell it? I don't care.

Anyways, this afternoon I was thrown back into the nightmare I had had earlier, and the nightmare is probably what woke me up the first time.

It was one of my PTSD nightmares. The scary ones where I am in class and then running and trying to get him fired but no one will listen to me. I'm demanding to speak with my guidance counselor and she's not around or she's on the phone, so I talk to someone else and no one will listen and I'm being chased and I have that horrible feeling. The horrible feeling I can't get away from.

I don't even know how to describe these nightmares. I have normal nightmares too like everyone else, and these are so different from a normal nightmare and the level of fear is so strong. When I remember the PTSD nightmares, I get stuck in them. I can smell things and feel the way the halls feel and all my senses are there in the nightmare. And all day then I can smell the high school and that fear stays with me all day and then gets worse when it's time for bed.

I don't want to have another nightmare.

When I am having issues with my PTSD or other emotional stuff I tend to pick fights. I like to say things to piss people off so they will say horrible things to me and then I can focus on being mad at them and not on the crazy shit going on in my head. The bad things people say, I don't know what they do to me, but they make me feel worse, and then somehow that makes me feel better. If you can explain that to me, please do - because it makes no sense to me.

So here I will pick a fight in my blog. There's someone I have the urge to pick a fight with because it's easy. It's mean - horribly mean, but easy. And the little thing that is bothering me I could turn into a big deal.

So this Gal who went to the CF Walk with me is dating Dude and someday I'm going to run out of nicknames, and that will suck. Anyways, Dude wanted her to walk the 10K, I told them that he can do what he wants, but I'd like Gal to do the "Carla 5k" where we take the shortcut so I don't die by the end. I wanted her to get to know Sarah Lynn and Emily and Darin. And I just wanted us to be a team. And I felt that Dude did it on purpose. He wasn't even going to come originally, so why would he make it so we all couldn't walk together??? I don't get it, and I guess I don't care if he did it on purpose or not. He doesn't seem to like me much anyways, so it doesn't matter. In fact, I don't think he likes me at all - which is fine with me. There are plenty of people who don't like me. It's called life.

So I guess it's not a huge deal and I don't want to fight about it.

It's over. It's done. And there's nothing to fight about - and yet my brain says FIGHT FIGHT FIGHT, because I am crazy.

I don't want to go to sleep. I hate that sleeping scares me. I hate that two years after I got the bastard fired - six years after the whole thing started - I am still having these nightmares. And I've been told they will probably never go away. Never. I am going to be haunted by high school for the rest of my life. And high school fucking sucked. On a scale of one to 100 it blew way off the charts. Being paranoid and violent tends to make people not want to be your friend, and so I lost my friends because of what was happening to me, and high school sucked. It was no musical, my friends.

And today I was shopping with Ashley during our walking, and we were in a shop that so reminded me of my hometown. It made me miss going downtown with my friends and shopping in all the little shops there. It made me miss it because it's something I can't do anymore. It takes something really special to get me to go back to that town.

All because of my PTSD and that bastard.

Walking

I did walking today. Ashley and I walked. We shopped. Walking was hard. This is making me nervous for Europe. Am I going to see everything from my wheel chair? If I do, is that okay with me? I'm not sure. I guess I'll find out.

Wow... those were some really great short sentences.

I don't know how I feel about all this. I know how excited I am for Europe. I've always wanted to see Italy, and I'm excited to go back to Germany - but what is this trip going to do to my health? I don't really care what it does to my health, because it's my dream trip.

Well, I do care. I still want to be able to dance (which is in jeopardy - I really wish we'd start practice again so I could do something physical that's not as hard as walking. I don't know why dancing is easier, it just is).

I don't really know how I feel, but I'll probably let you know when I figure it out.

The Poem

The poem I posted last night was actually written by Sally Meyer. It was written for her son Dhylan who has autism. It is copywritten, but I received an email from her and she said it is okay for me to use it.

The version I posted came from a forward, so it is a little different than the original.

You can find the original here.

Thanks, Sally. Your poems are beautiful.

Monday, May 19, 2008

My Life, On Life, What I Want in Life.

My friend forwarded this to me. It's a forward that I normally wouldn't pass on (and I didn't), but the poem touched me so that I wanted to post it.

This is pretty much what I want in life.

For My Daughter
*Just for this morning, I am going to step over the laundry,
and pick you up and take you to the park to play.

*Just for this morning, I will leave the dishes in the sink,
and let you teach me how to put that puzzle of yours together.

*Just for this afternoon, I will unplug the telephone and keep the computer off,
and sit with you in the backyard and blow bubbles.

*Just for this afternoon, I will not yell once,
not even a tiny grumble when you scream and whine for the ice cream truck
and I will buy you one if he comes by.

*Just for this afternoon, I won't worry about what you are going to be when you grow up,
or second guess every decision I have made where you are concerned.

*Just for this afternoon, I will let you help me bake cookies,
and I won't stand over you trying to fix them.

*Just for this afternoon, I will take us to McDonald's and buy
us both a Happy Meal so you can have both toys.

*Just for this evening, I will hold you in my arms and tell you
a story about how you were born and how much I love you.

*Just for this evening, I will let you splash in
the tub and not get angry.

*Just for this evening, I will let you stay up late while we sit
on the porch and count all the stars.

*Just for this evening, I will snuggle beside you for hours,
and miss my favorite TV shows.

*Just for this evening when I run my finger through your hair as you pray,
I will simply be grateful that God has given me the greatest gift ever given.

*I will think about the mothers and fathers who are searching for their missing children,
the mothers and fathers who are visiting their children's graves instead of their bedrooms,
and mothers and fathers who are in hospital rooms watching their children suffer senselessly, and screaming inside that they can't handle it anymore.

*And when I kiss you good night I will hold you a little tighter,
a little longer. It is then, that I will thank God for you, and
ask Him for nothing, except one more day...........

I love children so much. I loved this poem and thought it was fabulous until I hit the line about the mothers and fathers visiting their children's graves - it made me think of a girl I was close to who died when I was 14. She was 9. Her family is always in my thoughts.

The line about mothers and fathers in hospital rooms made me cry. I know my parents didn't have to deal with me being in the hospital until I was a teenager - and then for surgeries. It wasn't my lungs until college - but I still know how much it hurts them. It hurts them more than it hurts me. I know I can handle whatever happens to me - but I know that a parent never wants to see their child in any pain. They don't know what I can handle - and don't want to find out what my limits are.

I know that as long as I have my family with me (and a few fabulous friends) I will never have a limit. I may get stir crazy in the hospital, but I will never reach the limit of what I can endure. Well, at least I hope not. I know right now as I look ahead I don't have a limit. Someday I might, but right now I can handle anything as long as I have my family and friends.

I think of the parents of children with CF who are in the hospital all the time. I know they are in pain - more pain then their child, and it breaks my heart.

A lot of what I feel is pain for what my mother has gone through. I know how much she has been hurt by my CF, and it's pretty much the only thing I feel guilty about in my life.

I just want to know how to ease the pain of the parents. Would knowing that the pain isn't so bad - knowing that being in the hospital isn't so bad - knowing that we're okay with the treatments and the pills and the way our lives are help?

It hasn't helped my mother. And the thing I want most in life is to help my mother. I want her to be happy and not be so sad that I have CF, because I know I'll be okay, but she won't be okay. I want my mother to be okay.

I know that if I am a mother some day, I will treasure every moment. I will treasure every time I have to get up in the middle of the night. Every hug and every kiss will be special. Everything my child says will be brilliant. Because for me, the opportunity to be a mother would be the most precious gift life could give me.

The Brother Vol. 1

I love my baby brother.

I had a ton of things to say on the way home, and now I forgot. I guess they'll come back to me later.

The one thing I remember is he better not move far away from me, dammit. Or he better buy a really huge house and I can live in the basement and come upstairs for meals. Or, rather, ride the elevator upstairs for meals. :-D

Living in the Real World

So I was talking to a guy friend online (not Keaton... I have other guy friends) and he was saying that he's not too happy that he graduated because the real world doesn't look too fun. I said, "It's not."

And I continued to explain that I've lived in the "real world" and dealt with "adult decisions" since I was about 12. So if the average person graduates at 22, and then starts living in the "real world," and I've been living there since 12, that would make me about the age of 34.

and he replied, "I don't think you'll ever live in the real world carla. you so cwazy."

And it made me laugh. Because maybe I do live in my own little made up world, but I like it in CarlaLand, and you're welcome to come visit anytime. ;-)

Sunday, May 18, 2008

And one more thing to acknowledge

I need to acknowledge this comment:

"Well, I haven't been in the hospital for the last, (what was it, 12?) days. So, I can't claim post-hospital depression. But I do have a little Post Great Strides blah's going on.

We raised a ton, had mediocre weather, and had a lot of people show up to support us. So why have I been on the verge of tears, if not in tears since we got home?

I guess it's because of all those people, not the cf'ers or the cf families, but all the people who came to show their support and write thier checks. All those people got to go home feeling really good. They helped out a GREAT cause. They had a nice day at the zoo. They get to go to work tomorrow and talk about how nice it was. And they're done. They don't have to think about cf again until next year. We're sentenced to life with it.

Nice attitude, huh? Pardon my momentary self pity. It's nothing a good night's sleep won't cure. I just wanted to let you know that I thought about you at our walk, and that I checked in on you.

Hope tomorrow is better.

Tami"

Thank you Tami. It's true. I will wake up tomorrow feeling better. Sure I'll work through how to get my life back to normal after two weeks in the hospital, but I'll feel better about the walk and how it went.

I read this earlier this afternoon and already felt better - it was before I even got the comment about how I complain too much. I wanted to point out that I get really great comments - comments that I don't have to defend myself because of, and comments that lift my spirits.

Okay, I'm done for tonight.
<3 Carla

A Real Conversation.

Seriously, I didn't make this up. You can't make this up.

Me: So, what's with the man-boobs? All gay men seem to have them. Do all men have them and straight guys wear looser shirts, or is there a gay gene that makes you have bigger man-boobs?

Darin: Carla, they're called pecs.

Me: Right, but that's not my question. How do the man-boobs happen? I don't get it.

Darin: I don't know. They're pecs.

Me: Yeah, but you've never done any sort of work that would make your pecs stand out.

Darin: I know. I'm gorgeous.

Me: Right. Seems to me you have a self-esteem issue.

...thus making Darin cooler than previously thought to be possible.

Proving I am a Happy Person

Great Strides 2008 - aka a day that made me smile.

Bucky Took this one:Idk who took this, but look, I'm happy.
Really happy because there is a small child in my arms:
Happy because these are my people:
And this is Tracy - the best CFF director ever!


There. I'm happy. You satisfied?

Response to Post-Hospital Depression

Because some idiot posted this:

"Jesus christ. Nothing makes you happy, like ever. Suck it up woman. "

The walk did make me happy. I just came home and felt really crappy from all the things I had done today - way too early in the morning - and well, I don't know if you've seen any of the photos, but I AM smiling and HAVING A GOOD TIME. And just for that... my next post will be photos from today to prove I have the ability to smile.

I loved being with the people who love me. I loved walking with them and joking with them. They are great people. And any time I get to spend with Sarah Lynn is a good time. I'm going to build a boat, and take Darin and Sarah Lynn hostage and move them to a desert island. Because sometimes, they are the only people in the world I want to spend time with.

Sometimes, but not today. Today I got to spend time with little kids - and hold Josie and make her giggle. "Is Josie going to ride the bus" "Yes!" "Is Momma going to ride the bus?" "Momma's too big!" I LOVE children. And I know when I do more babysitting this summer it's going to help me.

I in no way have to defend myself, but I am choosing to because I can. Now, since this person decided not to identify him or herself, there are several ways I could take this. Since I get both CF and non-CF readers, I have a response for both.

To the non-CF readers - you have no idea what it's like to be in the hospital for two weeks - to completely stop your life because you are sick again, and then when you get out you're expected to go full speed ahead right away. At least I expect myself to go full speed ahead right away. First of all, I just spent 2 weeks in a hospital bed, so my muscles ain't quite up to what they should be. That's the first issue. The next issue is I am confused as to how to fill my time because the hospital is so structured and there I need all the extra time to sleep because the quality of sleep is so poor, and I rarely fall asleep before midnight. Here, I can fall asleep whenever I want to because my bed is heavenly, and I don't need as much sleep and I am overwhelmed with how to fill my days. And now that Great Strides is over - something I work on heavily from October to May, I have this empty space - and I have lots of empty space already, and I don't know what to do about it.

For the CFers, maybe your hospital stays are different. I'm sure they are. When I'm in the hospital everything is very organized and my time is committed to the minute. And I love that structure. For some reason I feel like I have control over my disease when I am there. I push around docs and correct nurses that need to be corrected, and while it can be stressful, I feel like I am in control. I don't have that at home. I have way too much free time and it's for reasons I don't have to explain to anyone. I made some personal choices about my health and school a few years ago, and I will never defend those choices because they have been the right ones for me. Do I ever miss school? You fucking bet. Do I want the stress that makes my health decline faster? No fucking way.

And this weekend - well the past couple weeks - have been pretty hard for me seeing most of my friends and classmates graduate. They graduated from the school I wanted to attend before I entered elementary school. Before kindergarten - even before I knew my Sarah Lynn - I knew that I wanted to go to Madison.

Tonight I lost it when I saw a photo of grads singing "Varsity," because I have been ignoring how much I really wanted to graduate from here - with a degree in anything. I'd do underwater basket weaving, despite my fear of water, to get that red diploma holder.

But at the same time, this school made it nearly impossible for me to succeed. This school is the reason I failed. I could have done it with my disease had I gotten a little support from the school. But to them, I was just a number. And they didn't care whether I graduated or not, so I was forced to drop out. And it wasn't for lack of trying. I had never tried harder at anything in my life than college. And I still have big issues that something I tried so hard at turned out so terribly wrong.

Post-Hospital Depression

So I have this post-hospital depression thing going on. It doesn't kick in until I realize that I'm going to be all alone again, and well, I hate that.

Today was Great Strides. We raised a ton of money, but it was so cold it wasn't very fun. Plus all that walking sucked. Royally sucked. I don't know what to do about Italy - I guess I have to practice walking???

This was the first year at the walk my whole team didn't stay together and I guess it bothered me.
I'm going back to my room to watch more TV (yeah, like a lot has changed since the hospital - still spending time in bed watching TV... except now I can't order my food - I have to get up and get it).

Blah.

Saturday, May 17, 2008

My First Day Home

I spent the first half of the day sleeping.

The next half was spent with my brother, a friend, my brother, and oh yeah, my brother. Lots of quality time with Dar-Dar. He's the greatest.

We went to Red Lobster and fought over the waiter the whole time. "He's looking at me!" "No he's looking at me!"

I kept saying, you know I'm going to blog this.

I almost died when my brother ate a tomato. I had to take a photo.

On the way home I realized I forgot to take a picture of me leaving my number for the waiter, and Darin said we could just re-create the scene when we got home so I could put it on my blog.

It would be "Here is the recreation of me putting my phone number on the check" and then a lame photo taken in my dining room. Remember that.

Darin and Brian (his soon to be roommate) made an awesome CD - a CD with more than one Celine Dion song, a song by Cher, and multiple songs from musical theater. There's also techno and very girlie songs. I said, "This is possibly the gayest mix ever to be born." And Darin said, "Yep." I said, "Make me a copy, please."

I love my little brother. He's a great kid.

HOME

I'm HOME! And I took a shower and it didn't smell like dirty gerbil cage! And I slept in my own bed for hours and hours straight! And I'm home and feel great!

And now tomorrow is Great Strides :-)

And then Chris and Kyra's Wedding next weekend

And Packing for Italy

and then ITALY!!! :-)

So I'm excited!

Thursday, May 15, 2008

Current Favorite Quotes

"Kirk: Are you ignoring me?
Miss Patty: Since you were old enough to walk, Kirk." -Gilmore Girls

"Lorelai: Michel - the phone!
Michel: Yes. It rings.
Lorelai: Can you answer it?
Michel: No. People are particularly stupid today. I can't talk to any more of them." - Gilmore Girls

"I'm dating and it comes with snacks!" - Grey's

"I know you think you're scary and damaged and it makes you feel like you don't deserve good things, but you do." - Grey's

"Nurse: Do you have any medical conditions?
Bartlet: Well, I've been shot." - The West Wing

From my favorite episode of West Wing EVER:
"Leo: Andrew Jackson, in the main foyer of the White House, had a two-ton block of cheese.
Josh: And a Wheat Thin the size of Lake Tahoe." - The West Wing

"Lorelai: I'm going to go make out in the coat room. Don't eat my chicken.
Rory: That's going on your tombstone." - Gilmore Girls

This is a favorite moment of mine, not just because The West Wing is so well-written, but also because this pretty much sums up my views of religion and why people shouldn't take the Bible so literally:

"Bartlet: I like your show. I like how you call homosexuality an abomination.
Dr. Jenna Jacobs
: I don't say homosexuality is an abomination, Mr. President. The Bible does.
President Josiah Bartlet
: Yes it does. Leviticus.
Dr. Jenna Jacobs
: 18:22.
President Josiah Bartlet
: Chapter and verse. I wanted to ask you a couple of questions while I have you here. I'm interested in selling my youngest daughter into slavery as sanctioned in Exodus 21:7. She's a Georgetown sophomore, speaks fluent Italian, always cleared the table when it was her turn. What would a good price for her be? While thinking about that, can I ask another? My Chief of Staff Leo McGarry insists on working on the Sabbath. Exodus 35:2 clearly says he should be put to death. Am I morally obligated to kill him myself or is it okay to call the police? Here's one that's really important because we've got a lot of sports fans in this town: touching the skin of a dead pig makes one unclean. Leviticus 11:7. If they promise to wear gloves, can the Washington Redskins still play football? Can Notre Dame? Can West Point? Does the whole town really have to be together to stone my brother John for planting different crops side by side? Can I burn my mother in a small family gathering for wearing garments made from two different threads? Think about those questions, would you? One last thing: while you may be mistaking this for your monthly meeting of the Ignorant Tight-Ass Club, in this building, when the President stands, nobody sits." - The West Wing

I fucking love it.

I'm Going Home!

Did I mention I'm GOING HOME TOMORROW?!?!?!

I LOVE that I'm going home tomorrow!!!

Today, Hospital Day 13

I GO HOME TOMORROW!!! I GET OUT OF HERE AND GET TO SLEEP IN MY OWN BED!!!

And I got exciting news from Chris and Kyra - but I'm not sure if I'm allowed to share it here yet.

What I know now is I'm exhausted and just want to sleep for the rest of my life. But not really - I am excited for the CF walk! :-)!

It's on SUNDAY!!!

That's all I have to say for now. I'm too sleepy to be very clever.

Bringing Home Baby

So I follow the blog of Nate and Tricia Lawrenson, well it's Nate's blog, but Tricia has CF and recently had her double lung transplant. Today they got to bring their baby girl home. She was born 15+ weeks early, and it's amazing how well she's doing. It's amazing how well they are all doing.

Here is a photo session of them. Scroll down to see the photos and the slideshow of photos. They are brilliant.

My recent obsession with photography makes me want to be able to take photos like that.

I'm really excited for Nate and Tricia and Gwyneth.

Wednesday, May 14, 2008

It WORKS! & Thinklings

Twitter Works!!! But tonight I have too many thoughts to Twitter them all. I still have to try texting to Twitter to see if it works - that's my plan for Italy - to Twitter more things than do big posts. Hopefully I will post a photo a day, though. We'll see.

Thinklings:

* Why do they let the IV pole for the guy next door beep for an hour, and then when they find him say things like "This is why we have to restrain you at night!" and "We need to clean up all this blood"??? This indicates to me that he pulled out his line and was sitting there bleeding for an hour. Did no one notice that his pole was beeping??? My nurse was here TWICE and his door was open because I could hear the pole beeping!!! What is wrong with this place???

* "He would have been a really good boyfriend had he not been so depressed and had he not been so weird." Said by me about an ex. Ranting with Rachel is the best thing ever.

* Let's hope for sleep ;-)

Starting Twitter

I'm going to start using Twitter to update with just little phrases. Maybe this will take the place of some of those thinklings I post. Or not.

Hopefully it will be in the right hand column under the "about me." Hopefully being the key word. It's currently slow-going.

While editing a photo to make my Twitter photo, I accidentally deleted the original. The second I did it I was like DUH! Oh well. I have the original on my other computer, and I'll be back home FRIDAY!!! FRIDAY!!! Like the day after tomorrow!!! YAY!!!

When I get it up and running, my first Twitter will read: I can't believe I was stupid enough to delete the original copy of that photo. Thank God for Memory Cards.

It's Just Like Gonin' Fishin'

A couple years ago my dad made me a sign for my birthday. It has a postcard of a golden retriever and the words "As long as one and one are two, there could never be another father who loves his daughter as much as I love you."

It's the best present I've ever gotten. It sits on a shelf above my bed where I keep my collection of angels. It's on my angel shelf. Dad made it because of a Paul Simon's song "Father and Daughter." Everyone knows Paul Simon is my favorite, and this song is special for me and Dad.

The lyrics are:

"I'm gonna stand guard
Like the postcard of a golden retriever
and never leave until I leave you
With a sweet dream in your head

I'm gonna watch you shine
Gonna watch you grow
Gonna paint a sign
So you'll always know

As long as one and one is two
There could never be a father
Who loved his daughter more
Than I loved you

Trust your intuition
It's just like goin' fishin'
You cast your line and
Hope you get a bite."

That's my favorite part of the song, and the part my dad made the sign from. It's our song. And when I heard it today, it reminded me of putting my head on Dad's shoulder at the Paul Simon concert a couple summers ago, and that is just one of my favorite moments ever.

Hospital Day 12

Today I got to page 1 of Dooce.com

Yay for me. Now I plan on composing a well-written email to Heather Armstrong about blogging and writing a book and how she did it. My problem is I'm on a very small income - focus on VERY small and the government doesn't allow me to work to earn more. Long story, something I won't blog about in detail.

But anyways, I need to figure out how to get my message to more people. To get the numbers on this site higher. To get published. To write a column or help edit things or do something else I'm wildly unqualified for.

Today the girl across the hall came in (and I think she'll be back, but I'm going to have company, so she should avoid me, which will be good). Anyways, she came in and every time she comes in I tell her she needs to be on oxygen. There are many reasons I see this. Many reasons I keep telling her. She is confused and her speech slurred and gasping for breath and she's clumsy - and those are signs of needing oxygen. I told her nurse this, and I guess her nurse has been telling her this for awhile. So I'm not the only one with a brain around here.

Is there some reason the docs won't listen to the nurses??? Because in this instance, I believe they should. Well, in almost every single case I think the doctors should listen to the people who have contact with the patient throughout the day. And they don't because that would make too much sense.

Now here is where I rant about dating again.

All my best friends are coupled. Wait... no, all but one and she doesn't really have any interest in dating - she's complicated, but I love her anyways. But my point is, everyone is dating. Great. So one of my friends is setting up a double date for someone else we know and I want to go, but guess what? I can't. I'm the odd-numbered wheel.

I can't wait for Rachel to get here. She's bringing Jon, but he'll just have to endure the girl talk because it WILL happen.

I have this feeling that I really want to be dating someone, but as long as it isn't complicated or hard work or confusing, and as long as he's not dumb. And from what I've observed with my friends, boys are dumb. Maybe I'm better off on my own. I will be the odd-numbered wheel who is ambitious and going to get her message out to the world.

I'm too strong and independent to be in a co-dependent situation, maybe.

Hospital Rant Day 11

Well I guess it's technically day 12 - it's past midnight.

I can't sleep. I can't sleep. I hate it here. This is me ranting cuz I'm pissy and I NEED some sleep, damnit. I'm not comfortable here anymore. My back hurts. They are admitting someone next door and it is noisy. I can't sleep and I don't know what to do, so I've ordered saltines and apple juice. Apple juice puts me to sleep especially when I don't take insulin with it.

Nothing like a sugar coma.

I can't wait until I can sleep in my own bed.

RAR. I just want to sleep so I don't have to spend the entire day sleeping tomorrow. DAMNIT. I just want to sleep. ARG. ARG. ARG.

Well, I'm going to eat my crackers and juice and try and sleep some more.

I hope you have a goodnight.

Tuesday, May 13, 2008

Why People Come Here

I think people come to the hospital in case they code. They call blue codes from the most random places here.

This afternoon I heard the familiar and disturbingly annoying sound that means someone is about to die if you don't hurry your ass and respond to the code. The announcer said, "Adult blue cart to the American Family Children's Hospital lobby by the elevator near the information desk." They must repeat this information about four or five times in case you forgot to listen the first three.

About ten minutes later the code tone sounds again and the guy says, "Adult medical response team to American Family Children's Hospital elevator lobby." Over and over. And I had to wonder, they got a blue cart, did the response team not show up with the cart? Did they drop off the cart and leave? Did they say, "here, you guys are pediatric docs, but you should be able to figure this out. I'm gonna go get a cup of coffee"???

I have heard codes called in the surgical waiting area, the cafeteria, the information desk in the clinics lobby. This evening they called a code to "The 2nd floor near the ENT clinic." Hope they all know where ENT is. I do, but that doesn't mean the staff does.

Some of my favorite places people have decided to fall over and have their heart stop beating include the clinics lobby, the Java Hut in the clinics lobby, any of the many elevators, and of course, the parking garage. The other day, "Adult blue cart to the hospital entrance between the building and the parking garage, sort of by that column over there... no that's too far, closer to the rock bed than to the valet parking. There you go!"

So maybe I'm exaggerating the extent of the description for that one, but I swear it was that long. And people code in the parking garage and between there and the hospital entrance all the time.

Now if people falling over near death were funny, this would be the exact situation in which to laugh. Geeze, this is a hospital. Can't you die somewhere else where it doesn't interrupt my nap?

On Life

Today is day 11 in the hospital.

Today I went to my psychiatrist and we had a wonderful chat. I'm doing so well, and I'm proud of me and she's proud of me.

I want to talk about the things she and I talked about.

She asked me how I respond to questions about what I want to do with my life and I told her that this week is hard because my friends are graduating and that's what I was working so hard towards.

She reminded me that some of the most influential people haven't had college degrees. Ghandi did have a degree in law, but is that what he's known for? No, he's known for peaceful protest and nothing do to with his law degree.

Mother Teresa didn't have a college degree and look what she did. Princess Diana didn't have a college degree. Neither does Bono.

I just looked up those people to double check. And in doing so, I have realized how much I can do despite not having a college degree. I can prove that I can make a difference. I can move mountains. I can make people smile when they don't think they can. I will change things in this world for the better.

I have this aching urge to be a mother - and if I am meant to be a mother, that will work out. Until that works out (if it ever does), I will continue on my way to make a difference in the world.

Monday, May 12, 2008

Rockin the Casbah a Little Less Hard.

Want to know what kept me from working on the book this afternoon? A nap. And then Sarah B. came to visit and we talked dance team drama and how I'm going to use my super powers to fix it.
Then she left so she could get home before Dancing with the Stars, so I called my mom and she came to watch it with me. And that shows how awesome my mom is. Well, it's not like I sent her home and she came back - she hadn't yet been here today, although I did talk to her a lot.

I have three post its full of emails I need to send so I can fix the world so it's less stressful for me. I'm a tad controlling - if you haven't noticed, and I just want the world to be a little easier for me. This is why I take leadership roles - my awesome leadership powers are approaching Jedi status (and I've been training really hard, too, under some of the best Jedi in the world), and since they are nearly Jedi-like I can do slightly more than a wave of the hand and get people to do things my way - since my way is the right way.

I talked to the girl across the hall for an hour this evening. I was bored, not doing much, so I invited her to sit down and talk. And I got deep and philisophical about the possibility of a cure for CF and all she got was confused.

She had a CT on her lungs today, to try and figure out why she's not getting better. They proved that it's the progression of her disease and it's scaring in her lungs. Which is sad. When it gets to that point, what do you do? Accept that you can't breathe and continue on? I don't know what I would, or will, do.

I got into my "this is my disease and other people shouldn't have to suffer from it" mode. I hate seeing those little kids in the hospital or having to do treatments and nebs. I lived a fairly normal childhood - despite the coughing and the pills and the treatments, but I was never hospitalized for my lungs until I was 18 - so I feel like I need to find something to help these kids and my friends with CF and I'm so hopeless. I don't have a degree in anything, and now that my friends are graduating when I was supposed to be graduating, it stings. A lot. I have this huge issue about not having a degree. It's because I know I am smart enough to get any degree I want, but I don't have the energy to make it through college alive, and I think I got the raw end on that deal.

I wanted to be a doctor originally so I could help CF kids, but I realized I would never make it through med school alive. Then I thought toxicology so I could do research. Then I found chemical engineering because the toxicology program didn't have enough math - I was silly enough to think I wanted to take extreme amounts of math. And I did. And I did well. It was my lungs that got in the way. And those pesky treatments that took away from my study time and all that sleep I needed. Plus picking up my meds took about half a day when I lived in the dorms, and that was awful. Oh, and back then I was still doing a 600 calorie shake every night before bed, which took up time, and I had a good routine and did what I was supposed to, it just took everything out of me.

I switched to a Spanish major thinking it might be a little easier than engineering, but I was wrong. I missed my chemistry so much. L&S thought I was a slacker when engineering knew the real me - the me that worked so hard despite being so sick.

It just bugs me that I got nothing for all that time I wasted in college. Of course I made priceless friends, so I wouldn't say I regret college. I regret that the University wouldn't do anything to help me make it through ONE SINGLE SEMESTER.

And it stings to watch my classmates graduate this week. It really stings because I want to do something with my life. I'm here in the hospital - the expert patient who has seen every episode of way too many television shows.

Just to prove to you how much time I spend sitting around, these are some of the TV shows I have watched every season of:

Stargate SG-1
Stargate Atlantis
Wings
Gilmore Girls (I've seen every episode at LEAST 10 times, if not more).
Nip/Tuck (except for season 4)
Six Feet Under
Sex and the City
Dexter
Weeds
The L Word
The Wonder Years
Law and Order: SVU (yes, all 7 seasons)
ER (except a couple of the most recent seasons)
Criminal Minds
Monk
Firefly
Grey's Anatomy (well, still working on this one...)
Felicity (working on this one too)
The West Wing (working on this)

And I have all of the new Dr. Who to watch, too.

I just sometimes feel really useless and don't know why I bother to get out of the bed in the morning, but I do, and I continue to watch movies and TV show after TV show, and that is my life, I guess.

I totally forgot the point to this entry by now.

But this was hospital, day 10. About 4 or 5 left to go. Seeing how well my PFTs went today, I'll probably be busting out of here on Friday.

AAAAAnd my NA totally just hit on me. I was typing the entire time he took my blood sugar, and then he was hitting on me. It was fun. He's cute.

Oh, and I should tell you how I've become a champion hospital sleeper. But that's another post on another day.

Goodnight. Aaaaand end day 10. Another night of restless sleep for me.

Rockin the Casbah

Did PFTs today - rocked them! I'm hoping the forecast for Sunday is currently wrong. It HAS to be nice weather because I said so.

Now I'm going to commit to doing a little work on my book.

first step: get out jump drive and load book onto laptop. CHECK!

Step two: open a chapter and look at it. CHECK!

Step three: read through said chapter and see what needs to be done. CHECK!

Step four: actually work on it. Hmm... I'm getting to that. We'll see how I do.

Sunday, May 11, 2008

Maybe the last entry for tonight? You know you love them...

But this one is sad.

I sit here oblivious day after day because I don't like the angle that the TV is at... so I don't watch the news. And tonight my mom called at 10pm - something VERY strange for her. I knew it was her because she's the only one with the room phone number. And she's not usually awake at 10 - where did you think I inherited my sleeping habits from?

Anyways, my mother tells me that one of the UW helicopters crashed last night and to turn on the news. My NA was here and she said she could tell me more about it - and she did.

The doctor, pilot, and nurse on board were all killed. This was the first crash in the 23-year history of the med flight program at UW. My NA knew the doc personally, and his wife is also an ER doc, and they have two small children and she is now a widow.

Please take a second and include these people in your thoughts and prayers. I heard that helicopter take off last night. I remember it, because I said something about it to my brother.

Reverting to old Habits

Old habits die hard. When I got bored, I immediately wandered on over to Dooce.com to try and finish reading all of the archives. Like I've said before - I will be tragically sad when I finish. Hopefully she is a blogger like me - one who updates many times a day so as not to disappoint.

This is probably my favorite entry ever

I especially LOVE this paragraph, because Heather Armstrong laid out all my hopes and dreams in one paragraph:

"But last night was filled with such joy, such brilliant, tingling happiness, the kind of experience that is so fulfilling that you want everyone you know to go through something like it. And so today I would tell my friend, look, you need to go out, find some guy who loves the way you look in the morning, can forgive you when you lose your shit, thinks that the smell of your neck is better than a football game, and then take that guy and have a lot of grueling sex, over and over and over again, so much that when you roll over next to him with your voluptuous naked body he's all NOT AGAIN, IT WOULD TAKE AN ACT OF GOD, WOMAN, and then four years later you'll get to watch your kid waddle around the neighborhood going, "Bawk! Bawk!" You will not regret it."

That's what I want in life. First, I want Carla's Drug to go through trials and work and make me better. I want to publish my book and maybe become a writer, but what I really want is my MRS. degree.

Here I Am

Here I am, typing in my blog again because I am too lazy to work on my book. Maybe I'm too tired, or too bored, or maybe I just can't get into it right now. Once I do get into writing the book, I can't stop for several months, and it's compulsive and obsessive and maybe I just feel like sitting here and doing nothing.

But I am bored. I've done everything. I'm tired of watching things - It's been more than a week I've spent watching things.

The People at the Hospital

I love some of the people here.

RTs - some of the respiratory therapists are amazing. We talk and talk and talk. Some of them I have known for years. Like Sarah - she pulled me back from near death and helped me get my lungs back in shape. After my appendectomy she made me do the PEP valve - something that is normally way too easy for me. It was too hard and I didn't want to do it, but she coached me through it like I was in labor. And it took a long time, but my lungs came back.

I love most of the RCAPs - not official RTs yet, just assistants. Kirsta is one of my recent favorites. I've gotten along well with Lauren and Angie and Tim and Jason and Nathan and Joe and Kelly - to name a few.

The nurses - Sue and Deb are the best. I love Erin and Regan and Amanda and Jill. Those are the nurses I know the best. Lots of other nurses are very good. You get the occasional bad egg, but for the most part, the nurses are great.

The social worker - Damien. No words needed. He is just that awesome.

The NAs - Nursing assistants. Jeff is fun. And Justin is SUPER cute (I've only had him once... but I could tell through that mask and gown that he was INCREDIBLY attractive and most likely gay). I don't know most of the other NAs by name. But they are good, for the most part.

The desk clerk - if you know what you're doing and you ask in the correct tone of voice, you can get the desk clerk to help you faster. Unless it is Mark. Then you are better off to get out of bed and go find your nurse because Mark is eternally cranky.

The food service phone answerers - These people I don't know personally, but I can always tell things about them by the way they handle their calls. Linda and Rob hate their jobs. Linda has been around the longest, and therefore I think she has earned the right to not be polite anymore. She also looses the most dinners. Like honestly, if I would statistically study the amount of meals that get lost vs. the person who took the order, Linda would loose. If she takes my order and I don't get my food in a timely manner, I call back just to make sure she actually placed the order.


I just realized I haven't once mentioned a doctor yet. I think that's because some random doctor - not MY doctor - comes in once a day, listens to my lungs and then leaves. There is no conversation, nothing. The last doctor I liked was Dr. Green. No one will ever be as amazing as Dr. Green. I have been spoiled and therefore, I just don't like doctors.

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