Saturday, November 29, 2008

Decorations

I have loved putting up decorations for Christmas this year. I am so happy my house is pretty much done, and I love it.

I love burning candles and curling up on the couch.

Here are a few pics :-)

The wreath I (and Darin) made for Mom's birthday. I think I did a pretty damn good job on my first holiday wreath. I'm now convinced I could do anything crafty. I'm going to try and post more of my decorating and crafty creation photos.



My candles by the fireplace (it's a gas fireplace and completely useless.)

Me putting the angel on top of the Christmas tree.

My very skinny tree :-)

CF Awareness

I couldn't believe it when I found THIS ARTICLE via CF Husband. I can't believe the ignorance of the student group. They didn't even get the facts of the disease correct.

Anyways, it's just another reason I write this blog.

I'm going to go ahead and work on starting a Q&A section on this blog... go ahead, ask me your questions!

Thanks,
Carla

Friday, November 28, 2008

Music Addict

My music addiction just got MUCH worse... I found NOW 71 (the UK is way ahead of the US here...) and my brain may die a happy little death!

Thursday, November 27, 2008

An Idea

So I had an idea just now to put together a panel of CF "experts" (parents, siblings, spouses, best friends, and CFers themselves) and set up a blog or a place where people can ask questions and have them answered.

Seriously, ask me anything you want to know.

Second part of this idea - use it as a way to raise money for Great Strides... meaning have people donate, and then we'll answer questions...

Work in progress, maybe I'll get this done :-)

Let me know what you think - or in the meantime, I will be answering questions via this blog. Shoot!

Thankful

Happy Thanksgiving Everyone.

I enjoyed my Thanksgiving, and here are some things that I am thankful for.

1. My mother and I are getting along. Who knows why, but things have been peaceful. Shocking, I know.

2. My family - this includes those whom I consider to be part of my extended family. People like Chris, Kyra and Luca, and Sarah Lynn. There could be a couple others - but those are the big ones. The people who get me, who understand my limits and my abilities, and the people I would give my life for. I have loved spending this week with my Mom, Dad, and Darin, and I'm a little sad to be returning home tomorrow. At least I will be going home to see La Luca who I haven't seen in more than a week!!!

3. My friends. Lots of times they help me out and I love them to death - especially because they make me laugh, but the verdict is not completely out, yet. My ideal would be to have them understand me as well as my family, but I don't think it is possible. My dad read my entry called, "sometimes" and he said, "Wouldn't it be nice if people would not shy away from illness and throw you a giant party in the church basement before you die?" - That's paraphrasing a little, but it's the same point.

Ideally, I would party all the time with my friends and family - even when I'm sick I like to have company and just know that people are there for me. I know life is short, so I aim to do what I want, when I want, and to just have a good time.

Be silly. Laugh. Dance. Giggle.

4. Health. Mine may not be the best, but it's better than a lot of people. I can still do things I want to do and I'm not extremely limited - especially if outings include use of a wheelchair.

I'm thankful I am not in the hospital this Thanksgiving - because last year I was. I'm thankful my mother and I are not in a huge fight because last Thanksgiving we were. I'm thankful I did IVs at home and I got better - because last year I did them in the hospital and I got worse. I ended up on oxygen for a couple months and I dread doing that again.

The things I am thankful for all tie together and give me the thing I am most thankful for: The opportunity to be able to live how I want and to live happily. I am happy and thankful this evening.

I hope you are as blessed as I am.

Love,
Carla

Addiction

So I have a few current addictions. I thought I'd take a moment and talk about them a little.

1. Candles. I have discovered the wonder and beauty in candles. I'm not big on scents, so I only will burn vanilla or peppermint candles, but I now have them all over my living room. I need some longer matches or a lighter.

2. Angles. I collect angel figurines - and the other day, while shopping with my dad, I found an angel candle holder - how awesome!

3. Anything European. Germany, Italy and the UK especially. I love the Brit Pop charts - have ever since the year 2000 when I was in England for a Girl Scout trip. I love the Euro charts - I feel the Europeans just have better taste in music. I love things in foreign languages, and those great songs rarely make the charts here. The Macarena does not count.

4. Audrey Hepburn. Old movies. There is something great about old movies. I can't quite put my finger on it yet, but I'm obsessed.

5. Doctor Who. Yes, a British television show. I have watched the first two seasons and started season three. Right now, all I have to say is BRING BILLIE PIPER BACK!!! She's been a favorite pop star of mine since 2000, and I LOVE Secret Diary of a Call Girl, which has been running on Showtime recently. I don't know how much Doctor Who I can stand sans Billie Piper. Someone, please reassure me that no one takes Rose's place and the show is still good...

6. Mad About You. Love this show. Love how real it seems. Love it. Love it. Love it.

Saturday, November 22, 2008

sometimes

sometimes it amuses me how little work i have to do to get someone to offer to sleep with me, and how rarely anyone wants to date me more than a week. i swear i'm really not that big of a bitch.

sometimes it amuses me how much i am willing to put into a relationship - how much i am willing to do for the other person. and sometimes it amuses me how little the other person wants to put in.

sometimes it amuses me that the other person withholds from getting emotionally involved with me because they expect me to have huge emotional demands, when i really just want someone to hold my hand.

sometimes it amuses me how scared people are of my disease. they think i will die tomorrow. i have at least 2 years people - they put you on the transplant list when they think you have about 2 years to live.

sometimes it amuses me how close i am to a group of people until i have to do two weeks of ivs. then they think i have fallen off the earth and forget about me.

and sometimes, i just want to punch someone

Speed

There is a Montgomery Gentry song called, "Speed." The lyrics describe how I feel today. It's how I've felt for most of this home IV experience. It seriously makes me wonder whether home IVs are better, or if going into the hospital for 2 weeks is better. Why does time go faster in the hospital?

Anyways, the lyrics I'm thinking of go like this:

"I'm tired of spinning my wheels
I need to find a place where my heart can go to heal
I need to get there pretty quick
Hey, mister, what you got out on that lot
You can sell me in a pinch
Maybe one of them supped-up muscle cars
The kind that makes you think you're stronger than you are
Color don't matter, no, I don't need leather seats
All that really concerns me is

Speed
How fast will it go
Can it get me over her quickly, zero to sixty
Can it outrun her memory
Yeah, what I really need is an open road
And a whole lot of speed"

I've been so frustrated during this round of IVs I feel like I need to run away. So I'm going to go spend a week at my parents' place.

Why I've been frustrated is confusing - and I don't even know how to describe it. All I know is I'm lonely. I've had someone with me the whole time, but most of this round of IVs I have felt lonely.

I miss my friends. I have been thinking about my CF a lot lately, and I don't know what to do. I have talked with my best friend about my CF, and I know it is painful for her - and sometimes I just don't want to tell her I'm sick because I don't want to cause her pain. At the same time, I know that if I really needed her, she would be here for me. Chris and Kyra are always here for me - they are family and I don't worry about how they will react and they have come to visit me.

It's everyone else I'm worried about. I don't know whether to let them know I'm sick and ask them to visit me (because this time it hasn't worked...), or to leave them alone and just hang out with them when I am healthy.

I've been thinking about transplant, and I wonder if when I'm much closer to dying, will more people gather around me, or will they run away so they don't have to deal with the emotions???

Dead

I was putting on makeup today when my brother starts this conversation:

D: Carla, is that your natural skin color?
C: You mean, before the makeup?
D: Yeah.
C: Yes.
D: You look sickly.
C: I am sickly.
D: No, I mean you look dead.

So I'm a little pasty.

It then lead to these comments from Darin:

D: You buy makeup for black people just to look normal.

D: You should wear makeup for the dead, you know, if it weren't so harmful.
C: Why, so I can get that nice embalmed look?
D: You already have that embalmed look!
C: I do not!
D: You're right, you move around a little more.

Sunday, November 16, 2008

On Lactation

So I'm in menopause, and I've noticed since my second shot that put me in menopause - wait, KEPT me in menopause - that I haven't been writing. I watch TV and sleep.

Last night I noticed when I itched my port milk came out of my breast. Interesting. Yes. When I pushed more I noticed much more milk. So much so that I called my father into the room to ask why the hell I would be lactating. He said probably the Leupron - the menopause med.

Today Dad looked up the menopause med, and less than 5% have lactation. So I'm in said less than 5%. 84% have hot flashes. Got those. Got those hot flashes hard core. I spend my days putting on and taking off clothing because I can't regulate my temperature.

The last reported "side effect" was a development of a personality disorder - which is impossible and my father and I had a good laugh over it. Mom, on the other hand said, "Well if she's got that she's now got a better personality!"

My mother enjoys my "I don't know what to do with myself" personality because I spend more time watching useless television with her. It's not even the television I want to be watching. I haven't seen last weeks Jon and Kate Plus 8 because she hates the show. How SAD. I've watched more HGTV than I care to admit - and yes, we watched Bull Riding. My mother LOVES the PBR - don't ask my why, I don't get it. At least last weekend was the PBR finals, so this weekend I didn't have to suffer through any of that.

I have no control over the television in my living room. At first I thought I had a little control, but now I've lost it. But my mother and I haven't fought yet - and she says it's because she likes my menopausal personality better because I don't spend most of my time on my computer. I actually miss being able to type clever things and post my favorite photos for the world to see. I miss my commentary on life - and I could have made some amazing commentary on the election. Oh well. Maybe I still will be able to.

I want to be laying on the couch watching MY TV. Instead, I'm in bed watching my Gilmore Girls DVDs, which I love - but I have seen 1,000 times.

I'm going to go focus on my swollen mammary glands until my mother leaves and I can curl up on the couch and watch all the shows she hates.

<3 Carla

Distance Cousin

Quote of the day, said by me to my mother:

"Don't remind me that I'm related to them! It hurts my feelings!"

Saturday, November 15, 2008

My New Favorite Symptom

Lactating.

One swollen breast with milk coming out.

That is my new favorite symptom.

Long Time Gone

I haven't posted in a long time, and I realize that. Hopefully I'll think of something to say soon, and I'll be back here typing away.

In the meantime, just imagine me in my bed doing IVs, because that's where I probably am.

Love,
Carla

Wednesday, November 5, 2008

OBAMARAMA

WEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE!

That's all I have to say for now.

Monday, November 3, 2008

How I Voted.

Again, I don't usually post anything political here, but I was on one of my CF groups and they were asking how everyone was voting. The main topics that were being discussed were health care, and a little bit about being pro-life/pro-choice and so I wrote:

"I already voted Obama. I wanted Hillary, but Obama is better than McCain. And don't get me started on that dumb bitch and the crap she keeps saying about her "special needs child." A parent should take responsibility and be MORE involved in the care of a special needs child, not accepting the VP nomination.

I think there are even more issues than those that have been discussed here. I'm pro-choice (not pro-abortion, but pro-choice. HUGE difference), anti-war, pro-national health care, pro-gay rights, pro Gay Marriage (not pro Civil union, but MARRIAGE. I'm actually ANTI civil union because it's not the same).

I'm pro embryonic stem cell research, anti-guns, pro immigration, pro-Life - in terms that every life is equal and deserves the same chance - which goes along with Anti-War especially since it's an unnecessary war and we were lied to at the beginning of it and now we have ruined a country and let Iran have more power, and I bleed blood so liberal it's blue.

My blood is so blue it longs to live in the EU."

I got a response from a friend wanting me to clarify me pro-choice/pro-life feelings - because I did say I was both. And I am. The explanation went something like this:

"I'm pro-choice because I feel every woman has the right to make decisions about her own body. I'm pro-life, but it has nothing to do with abortion - I believe that all our citizens should be treated like citizens - and gays should have the right to have a life just like straight people. They should be able to get married and have children. I believe in health care for every person - I don't have a plan that would work and I admit that, but health care - physical and mental health care - for everyone is the goal. I believe in the right to make decisions about your own body if you are in the end-stage of a disease.

I'm not a huge baby-killing fan, but I would never try and tell a woman what she should do with her body or her life.

I don't know - I view the choice thing like everyone has choices. You and I could decide to stop taking our meds. There are laws in place that say that if we are mentally stable, no one can force us to take our medication. So why should there be laws telling a woman she has to go through with an unwanted pregnancy - a pregnancy that will require vitamins and doctors appointments and to stop smoking and drinking, etc. And those things may not seem like a lot of life changes to us, because we always take pills and are always at the doctor, but for someone else those could be huge burdens. And yes, there is the adoption option, but I don't think it's right to force a woman to go through pregnancy and then labor and delivery.

Almost three weeks ago I was there when my best friend was in labor for 2 weeks, and then while she had contractions, and then when she pushed for 3 hours only to discover that the baby was stuck and she needed a c-section. I wouldn't wish that kind of pain upon anyone - and I think a woman has the right to choose if she wants to go through all that.

And that is how I feel."

That's why I voted for Obama last week.

Not Sure

I haven't written in almost a week, and I'm not quite sure what to write about. Hopefully I will look through my photos and find something.

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