Learning To Live

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 :-)

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

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!

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!

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...

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 ...

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...

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 n...

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.

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 mo...

Quote of the day, said by me to my mother: "Don't remind me that I'm related to them! It hurts my feelings!"

Lactating. One swollen breast with milk coming out. That is my new favorite symptom.

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

WEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE! That's all I have to say for now.

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...

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.