Sunday, May 31, 2009

Frustration Overload

This is obnoxios. I don't mind posting from my phone in a waiting room or while on vacation, but when I'm in my own home my own computer SHOULD have the internets working! I miss using a real keyboard. My bro was nice enough to allow me to send a way overdue email with his compy, but I have so many things I need to do on mine.

Speaking of frustration, this week is going to be a giant ball of frustration. Today I slept all day. I was awake every few hours, but I had on the All-Day Golden Girls Marathon and I slept. The pain from my sinuses is too much to bear, so I try to sleep through it and my brain just shuts down. This is really fun. Try to get anything accomplished when your brain funks out on you. It makes things interesting.

I can't handle anything beyond the pain. This is the time when I get so overwhelmed by the pain and pressure that I get ornrey. I pick fights and like to throw things. Nevermind the fact that I also like to hurt myself. That's something I'm working on: better ways to manage pain.

I need to figure out how to get my brother to organize my crap this week. This is only challenging because he is somewhat challenged in the common sense area, and I am somewhat currently challanged in the staying awake to tell him what to do area. It's going to be an interesting week. All this has to get done by Thursday so my mom and I don't end up physically fighting in the OR holding room like we did last year.

::throws Kleenex box::

I should sleep now. If you've got some kick-ass pain killers, let me know.


-- Post From My iPhone

Saturday, May 30, 2009

Wouldn't it be lovely?



It would be very nice if my internet at home worked. I have this huge desktop that is currently a colorful paperweight because I can't get the Internet on it. There are things I would like to do that are so much easier from my desktop than from my phone. *le sigh*

The goal for this week is to get my house organized so that I can focus my energy on finishing my book. I just want to get it done and published. And I'm thinking of doing a video blog on CF. And I want my brother or someone to develop my new website (not that I had an old one).

I'm looking forward to seeing what I can do.

We need to keep an eye on cfvoice.org because in a couple days their whole site makeover should be done, and soon after that my podcasts should go up.

I have been told I should do my very own podcast by a podcast master, but I'm not confident enough. I don't know what I would talk about.

But it would be so lovely of my home Internet were working.


-- Post From My iPhone

Thursday, May 28, 2009

Life is Learning

Life is a learning process. If you're good at it, you will never stop learning and growing. If you happen to stop learning, I have no idea what happens but I'm sure it isn't good.

In my short 22 years on this planet I have learned more about a lot of things than most people have the opportunity to learn about in their whole lives. I know how important it is to tell people how much I love them. I know how important every day is and I try to do something productive every day- even when I feel like sleeping all day. Even when I do sleep all day I try to have at least a few minutes of productivity.

I know how precious life is and how not to take many things for granted. Time is a terrible thing to waste, and I try not to let petty things or bull shit take up my time.

I also know who I am and what I'm looking for in life. Most of all I want someone to sit next to my bed. I don't really care who it is - ideally a significant other, but anyone will do. As long as they sit by my bed and hold my hand it will all be good. I don't want to face the scarriest moments alone. That is my greatist fear - to have to be sick and alone.

Do you want to be my hand-holder? I am accepting applications.


-- Post From My iPhone

Politics



I try to stay away from politics on this blog because that us not the mission of the blog, but I need to say a few words.

Dear Rush Limbaugh,
Rush, my dear friend, there us no such thing as 'reverse racism'. Racism is racism. Please stop talking. You make yourself look like a fool. And take Ann Coulter with you. Sew that woman's mouth shut or something.

Love,
Carla

That is all.
-- Post From My iPhone

Roommate


I have a roommate for a month. I don't know how this is going to work because Ive never had a roommate before and I don't like to share. Especially when it's my television. I enjoy relaxing and watching shit on TV, thank you very much!

When my mom stays here, that's what we fight about: the TV and who has the right to control it. Nevermind that I have two other televisions in my house, we fight over the livingroom TV.

That's the real reason I'm nervous about having a roommate - what if he doesn't want to watch what I want to watch? I guess I'll just force him to watch it anyways. I can do that; he's my little brother.

-- Post From My iPhone

Tuesday, May 26, 2009

End of a Trip

So here I am in the New Orleans airport with more than an hour and a half until our plane will board. There is the gate check tag I need to get when an agent arrives at the counter, but other then that, I'm all set to go.

Once again we had to buy a bag to get all our junk home - man I love traveling with Dad! It's just a small tote bag, so it's not a huge deal.

Sunday night we went to visit the Greshams in their home on the Cane River. Tom is an old friend of my dad's from childhood, and that is where I found out that Zebras are for sure white with black stripes. Tom and Pat had a zebra skin rug on the floor. A REAL zebra that Tom probably shot himself. He is the host of the radio show "Gun Talk."

Monday we went to Avery Island on our way from Natchitotches to New Orleans. If you follow my Twitted you know I saw me some gators! Real live gators just a few feet from me!!!

And yesterday afternoon and today we explored New Orleans. What an amazing place! We at charbroiled oysters last night, had a po-boy and then pie. Then we went to Cafe du Monde and had beignets. I was so full Harold, the baby in my tummy who appears when I eat too much emerged with vengence. I think today Harold is still noticeable.

So here are photos from the iPhone. Hopefully I'll be posting some great ones from home too.

Dad near the Buddha on Avery Island




Flowers




GATORS!!! And a turtle.


-- Post From My iPhone

Sunday, May 24, 2009

Happy Anniversary!


Happy Anniversary to the greatest couple I know!!!

Chris and Kyra:
You have been thrown some real curve balls in your first year of marriage, but from where I'm sitting I've seen you handle them with grace, patience and love.

I am so blessed to have you in my life. A year ago today I witnessed a beautiful marriage between two deeply in love people. I felt blessed then to be able to attend your wedding and I feel blessed today to call you my closest friends.

I remember our trip to the zoo on Memorial Day very fondly. Both of you were talking about your hopes and dreams for your unborn kiddo. I'm so lucky to have spent so much time with you before and after Luca's birth. I've been able to see how much you loved him before he was born and now how much more you love him today. You are fabulous parents and Luca is lucky to have you!

To me, you are family. Thank you for all your unconditional support and love!

Happy Anniversary!

Love,
Carla




-- Post From My iPhone

Saturday, May 23, 2009

A lot of this

Seen a lot of this today. Spending a lot of time with good southerners, their amazing food and wonderful southern hospitality :-). I may move here for the winter.




-- Post From My iPhone

Friday, May 22, 2009

Got Seafood?


Here I am in the car on my way to Natchitoches. I'm so excited! Normally I would try and come up with something witty to say, but today I don't care. I'm in Louisiana y'all!

Last night Dad and I went to a Cajun food joint- real Cajun music and amazing food. You name it, I ate it. Mainly alligator and crawfish. Yum! And a frog leg- who knew frogs were so tasty?!

Outback behind the restaurant was a bayou and there were hundreds of turtles. I love turtles. They are an animal I can stand. Hundreds of turtles and I got to feed them! It made my year. I may pee my pants if anything more excitig than feeding the turtles happens.

I suppose this should have gone in the travel blog, but I'm too lazy.

Later alligator!



-- Post From My iPhone

Wednesday, May 20, 2009

Ch-ch-ch-changes


It's nice to come into the hospital and see they have changed things I have been bitching about since they put them in place. Good to know they eventually realize those were ass-backwards policies. Also good to know I'm always right.

-- Post From My iPhone

My H1N1 Friends


Tomorrow I leave foe Louisiana. My dad and u are going for hus 40th reunion. I've never been to his hometown in Louisiana - I've never been to Louisiana at all.

We're flying to get there. This is where my dilema began. Do I wear a mask or do I chance it? Do I give in to fear and hype about the piggy flu, or do I do what my heart and brain say and ignore the whole thing?

I'm not one to panic. This flu doesn't scare me. I think it's not as big a deal as they say it is. Yes, we have confirmed cases in Wisconsin, and confirmed cases in my county, but I'm still not worried.

I am going to refuse to wear a mask on the planes. I figure I've survived worse, and if I'm meant to get the flu I'm going to get it. The masks I can comfortably wear an am able to breathe through are not the masks that prevent the transmission of the flu. If rather take my chances and breathe comfortably than pass out from lack of oxygen.

If I end up with the piggy flu, I figure I'll gain a whole new group of friends - the H1N1 survivors. And we all know how much I love new friends!


-- Post From My iPhone

Wednesday, May 13, 2009

Nom nom



Mr. Big came to visit me in the hospital. And my camera and the nurse call thing are apparently very tasty!


-- Post From My iPhone

Tuesday, May 12, 2009

Have I Posted This Recenty?

So here's my montage... again. BUT I added a couple new photos and took out old ones I didn't like.




FIVE DAYS UNTIL GREAT STRIDES!!!

Sunday, May 10, 2009

Reasons I Think CFers Should Still Go Out On Pass

So this is kind of a long story, but in Adult CF World, patients are not allowed to leave the hospital. In Peds (The Pediatric CF World), we often got passes to leave the hospital for any reason you could think of. Once I spent almost 6 weeks in the hospital (this was in the era before Wi-Fi, so all I had was LiveJournal to occupy my time... it was painful). But in those 6 weeks in the hospital, these were some of the reasons I left the hospital on pass:

*To go to class (4 days a week for one hour a day)
*To go dancing (yeah, Peds was Awesome)
*To go to dinner/brunch/lunch/etc.
*To get my haircut
*To take a nap in my own bed
*To go to the movie store.
*To walk out to picnic point.
*To breathe fresh air.

(On Pass is LEGAL, meaning the hospital knows. There have been times when a parent or a friend has taken me out of the hospital between meds without permission from the hospital).

In Adult land, they rarely, if ever, issue a pass for a patient to go to anything. So I just refuse to leave my room. They will let you out for a funeral (this I know for fact). The main problem is the insurance companies. They believe if you are healthy enough to leave the hospital, you are healthy enough to go home. For CF patients (and I'm sure many other long-term patients), this simply isn't true.

I currently have three IV meds a day, four Chest PT treatments and 2 nebulized treatments. Two of my IV meds are every 12 hours and one is every 8. This means I get meds at about 7am, 10am, Noon, 6pm, 7pm, Midnight and 2am. I'm sorry but I don't know anyone with enough energy to be concious and able to give their own meds that many times a day. Add the pills, the 4 chest therapies and the 2 nebulized treatments and it's just nuts. I only have to be awake here for the 4 chest therapies, the nebulized treatments and meals - and that in itself can be draining.

I think I should have been able to leave to visit a park on a nice day. I wanted to get my haircut. I'd like to see a room other than my hospital room. I'd like to breathe fresh air. I'd like to hang out with my friends somewhere else besides my tiny hospital room.

Two weeks is alienating. And then I have trouble adjusting to real life again - my friend Lauren and I call it Post Hospital Stress Disorder. When I get home I'm overwhelmed with all my sudden responsibility for myself - like, you know, eating and brushing my hair.

I wish they could let us leave and go rent a new movie because I'm tired of watching everything I've already watched.

Friday, May 8, 2009

If only my Internet was working

If my Internet were working I'd post a long insightful entry about my mental illness. My PTSD is back in a crazy way and I have lots to say about it. Too much to say via my phone.


-- Post From My iPhone

Wednesday, May 6, 2009

Bored and Lonely


Alone in my hospital room. So quiet you might call it serene. But my nerves are on fire. I'm going crazy waiting for friends to call, text, email, facebook, or send me smoke signals.

I think we might have a full-blown panic attack going on here. I just can't handle spending this much time without socialization. And that's why they call me crazy.

I'm afraid I have made one of my best friends angry and he and my other friends will never speak to me again and then I will be driven out of my mind by boredom and lack of human interaction.

Stuck. Stuck. Stuck.

One of my best friends has a birthday this weekend and I would give anything to be at her celebration. But I'm stuck here. And there is nothing I can do about it because I need to be here getting better.

But I need my friends too... And I would like to stay up ok things and talk to people and be social. I am a social butterfly and this hospital takes away my wings.

Can you help me find my wings?

-- Post From My iPhone

Benadryl Induced Post

They have given me my 11:30 Benadryl and now I'm SUPER sleepy and have no brain powers - but there are a few thoughts I'd like to share. -Mostly for my close friends - I write a lot of these complaints for my family and friends to read so they can better understand what CF can be like.

I hate it here.
I'm only at the beginning of my 2nd week here, and I'm going CRAZY. BAT SHIT CRAZY.
I don't know when they will let me go home.
They won't let me do PFTs - I want to know that numbers-wise I am better, too. I know I'm off the O2, but I didn't know I needed it when I came in, so there's that.
I hate it here.
This is my sterile prison. And only sometimes is it sterile. Other times, it's just prison.
I feel pretty good, so I want to be out of here doing my own thing - organizing things, having fun, doing fabulous things.
I'm bored.
I'm friend deprived.
I'm sitting on my couch watching my trashy television deprived.
I just want to go home, or have someone to spend 24/7 with me here, haha.
Things are better when you spend them with someone else - that's true for even hospital stays.

Tuesday, May 5, 2009

Oh, what a day.

Today...

I received the Percussor 5000!!! I love it so far - and I'm going to be the UW's Percussor 5000 advocate! It's crazy that they don't even offer it as an option here.

No doctor came to see me. WHAT THE HELL?!?! I'm supposed to see a doctor every day.

I have discovered the love of my life - PANDORA Radio! AND I can use it on my iPhone - my other new love.

I love reading news on my iPhone - BBC, NYT, EDGE, ABC - LOVE the news!

Loved going through the notebook I usually keep in my purse to jot things down that I want to do, things I want to write, and random ideas. I transferred big stuff to my iPhone notes thingy, and blogged the rest.

Took a shower - it's amazing how good you can feel after a shower.

I'm off the Oxygen - I can't believe I only thought of this one now... haha. Shows you how much fun my new toys are ;-)

...and I haven't even synced my email and calendar yet... or finished putting in the medical info to my med app - which also rocks my world. LAND OF LITTLE PURSES HERE I COME!!!

My port still has a blood return - this rocks.

Things I've been Meaning to Blog

I've been meaning to talk about some of these things. Some of them are things I jotted down so that I would remember to blog about them later.

Here we go!

1/25/09
They hide psych patients in the basement of this hospital. If feels like a complete dungeon in here. If you weren't already crazy, you certainly good end up crazy by being here.

I'm terrified for my friend. I want to be with her every second to make sure she's okay. I want to take care of her.

It hurts me more to see others in pain than to be in pain myself.

Mental illness is worse than physical illness in many cases. Physical pain is less confusing. Less emotionally damaging.

I don't want to lose my friend - but I sort of feel like she's already gone. She suggested we go to a "new" Chinese Buffet she found - when we've already been there about a dozen times together. I miss her, and it's causing me to panic.

*****

2/9/09 - A New Clinic Experience in a New Town

Strike one - they have me scheduled with the wrong doctor.

Plus - seems like they take care of the CFers. They know them well and by name.

Plus - Free O2 in the waiting room!?! It's like a 5 star hotel w/ free champagne!

Plus - Free Muffins! I may marry this clinic Vegas-style.

Plus - PFTs are up! 80% and 50%

Plus - They fix the doc screw up and allow me to see the doc I want to see!

Plus - Possibly listing for Tx in two locations

Plus - Willing to work with Madtown team!

Plus - Thorough exam from Dr. B! What is this? They do more than talk to me?

Plus - Dr. A is good too - I see TWO doctors at one time? This place is CRAZY awesome!

Plus - The receptionist already remembers me :-)

Plus - RT is GREAT! You can call them on the PHONE!?!?! NO WAY! SUPER COOL!

Plus - It was a happy experience! I am happy!

Plus - Learned of the existence of the Percussor 5000! Something Madtown has never HEARD of!

Plus - Clinic is thorough like Peds Pulm in Madtown - what the hell has happened to Adult Pulm in Madtown??? It's crazy there.

Baaaa

Here's the Viral Video of the day :-) Enjoy.

Monday, May 4, 2009

The Reason I'm Tired

Today, I was tired. I slept in until 10am (an amazing feat in the hospital) and then after breakfast napped until about 3pm.

Everyone kept commenting on my horrible night and how sorry they were and how they hopped today was better - and I had NO idea what they were talking about. Yesterday around 2pm I had a reaction to a medication and had to deal with an abnormally stupid Fellow, but I know why the reaction happened, and now I just take benadryl before that med and I'm fine. So I had NO idea why my night was so horrible.

My night nurse, Amy just came on. And right now, I'm going to talk for a second about my main nurses - the nurses I love. I hate when these three nurses have days off, because they know me, we get along, and above all, they really know how to do their job. And they even smile when they come in my room - which makes being here bearable. I have Deb, Erin, and Amy. Bless their hearts, they have made this hospital stay so much better than all my others just because they know what the hell they are doing. And the Nurse Practitioners from Pulmonary can make things happen too - although they usually come early in the morning so I have no filter on my mouth and that can get me in trouble with them. And Dr. Meyer - well, he's just hilarious. I wish he were still on call this week. We'll see if I can get a few laughs out of Dr. NewMan (this is what I call the generic docs when I don't remember their names yet).

Anyways, Amy. She just came on and she stopped by my room to talk about last night. She asked what I remember, and I said, "Nothing." Then she told me about how my IV Pump wouldn't stop beeping last night. For Hours.

Apparently, I asked her, "Is it morning already?" and kept telling her, "It's beeping."

The disrupted sleep - although I never really woke up - is probably why I'm tired today.

Here's hoping for a Beep-Free night!

Little Update on Me

So here I am in the hospital. I've been here for a whole week. And now I'm bored.

I wanted to have my sinus surgery while I was here so I won't have to have TWO hospital stays in TWO months, but that's out, now. I'm going to Louisiana over Memorial Day and you can't fly for 4-6 weeks after sinus surgery. I was pissed. I want to feel better - and I don't want to come back to this crazy place for another year.

I am GETTING BETTER (finally). It was going too slowly for my taste, but we added an antibiotic and now I'm getting better - and getting off the o2. Yay!

I had my port fixed with what I like to call "mini surgery" because they had to go up through a vein in my groin and pull on it, but I was awake the whole time. Now my port works! And it's fabulous!

And now I'm out of things to say because I'm tired.

Sunday, May 3, 2009

Things I can no longer live without


Gps.
Mobile blog.
Mobile twitter.
Mobile version of the constitution.
My medical info.
Calendar.

I love my new phone!

-- Post From My iPhone

Saturday, May 2, 2009

My Bucket List

Tonight my dad and I watched "The Bucket List." Jack Nicholson. Morgan Freeman. Two of my favorite actors ever in a movie with a fabulous message. Basically, don't wait until you're dying to do what you want to do. Sort of. Or maybe your impending death should be the cause to make you not take things for granted. Either way, I've lived like this for a long time - my mother doesn't really like it or understand it, but she'll get over it. I try to live my life as if today were my last day, and I try to live my life as if I have all the days I could ever want left. I try not to let anyone tell me what to do. I try to do the best I can. I try to be helpful and kind. I try to be happy. I try to make others happy.

After the movie tonight I was inspired to make my own bucket list - with some of the same things from the movie, most of them different. There is an additional feature on the DVD on how to write your own Bucket List. Turns out, the guy also wrote a book, called "The Bucket Lists." This is going on my Amazon Wish List.

There is a line in the movie about when you get to the Gates of Heaven, they ask you two questions: Have you found joy in your life? and Have you brought joy into the lives of others? That's what I want my bucket list to be about - the joys of life. Of course, because I'm young I also want to accomplish a few things, but mainly, my life is about the joy.

I've decided that I've already done some of the things that need to go on my Bucket List, so they are included but are in italics to indicate that they have been completed. For the most part, I have completed them but would love to continue doing so or do it again. So here it is:

Carla's List of Things to do Before She Kicks the Bucket:

*Get my book published.
*Fight for civil liberties for all human beings.
*Travel with friends.
*Find people to experience my bucket list items with. Find more people.
*Watch my brother get married in the state he was born in.
*Travel to Europe with Dad and Darin
*Laugh until it hurts.
*Cry until there are no more tears.
*Experience the world through the eyes of a child.
*Be a bridesmaid or a maid of honor.
*Be a bride.
*Find someone who loves me for me and wants to do my dishes.
*Go to Louisiana and see my father's hometown.
*Visit my mother's hometown again. Invite her to go with me.
*Find the courage to tell all the people I love that I love them.
*Go to Kaui'i at least one more time.
*Meet Robert Harling and have him sign my copy of "Steel Magnolias."
*Carry around all the cute small purses I own - AKA carry less shit around.
*See New Orleans.
*See a show on Broadway.
*Be honest about how I feel.
*Raise more money for Great Strides than the year before.
*Help find the cure.
*Go to Disney World with my friends.
*Organize my life.
*Be a role model.
*Get a tattoo.
*See Tibet.
*Splurge.
*Get a manicure and a pedicure.
*Get a massage.
*Go to a Hispanic country or Miami and dance Salsa Rueda in a club.
*Keep learning.
*Take a college final. Just one.
*Visit L.A.
*See Seattle.
*Travel to Sweden.
*Drink a Pina Colada.
*Get Caught in the rain.
*Feel the Ocean.
*Taste Champagne.
*Make love at midnight in the dunes of the Cape.
*Find the one that I've looked for.
*Make our escape.

There are probably a million things I would like to add, but this will do for now.

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