Learning To Live

Dear Carla, Please remember that you don't have to get everything done in one day. If your house is a mess for a week, it's not a big deal. You can put it all back together when you do have energy. Don't feel guilty for taking naps. Love, Carla

Sometimes, talking to certain people makes you think harder about your own life. I talked to several of those people today. It was a good day for talking to people. Today I got to help sort through my recently deceased friend's things. I got to know another friend with CF better. It made me never want to loose touch with anyone because the minute you do they could be gone. Today I talked to one of my favorite people to talk to and I realized again how lucky I am - and that I hate to take any moment in life for granted. I'm going to go out and grab anything and everything I can. I'm going to finish my book this spring - and start work on a 2nd. I have the idea. I know what I'm doing. It should be fabulous. All of this reflection made me then write this note to a friend: "so you're totally welcome to come over tomorrow - or today if it's already monday - but I know I probably sounded like I was joking about the unpacking, but I wasn't. I am a pers...

1. What did you do in 2008 that you'd never done before? *Had to be on O2 24/7. That was scary. But I got better and now don't need any. *Went to Venice, Florence and Rome :-D *Vacay with just Darin and Dad *Raised more money for Great Strides than I ever had before 2. Did you keep your new years' resolutions, and will you make more for next year? *I usually refuse to make New Years' Resolutions because the disappointment of breaking them is hard. *I resolve to define myself so that I am comfortable telling people about my life. Am I a professional patient? Retired? Doing whatever the fuck I want so that I will be happy? Being lazy? I have no idea right now, but my goal is to become comfortable meeting new people and talking to old friends. 3. Did anyone close to you give birth? *Yes!!! Kyra and Chris. I was so blessed to be there, and am so blessed to be Auntie Carla to my little Luca! 4. Did anyone close to you die? *Great-Aunt Emma *...

Merry Christmas, Happy Holidays, Seasons Greetings! Whatever you celebrate, I hope you have a great time! I've had a great time. I, unfortunately, will not be able to attend an annual Girl Scout brunch tomorrow. It's going to be icy and snowy and neither my mother nor I want to drive. I wish I could be there - I love catching up with everyone, but the only drawback is I don't like talking about myself. I don't like having to thing and come up with something interesting that I'm doing with my life. I'm working on finishing a book. I'm working on making changes to the hospital and the medical system. I want to start a little online fundraising business-like thing. I am knitting and watching all the movies I can. I spend as much time as possible with my amazing friends. I spend time with my wonderfully silly family. There really isn't much else to talk about. I hate being a downer at parties - I'd just rather listen to everyone else and not t...

This is one of those random things that gets passed around... I got it from someone's blog. In bold are things I have done. Yay. 1. Started your own blog 2. Slept under the stars 3. Played in a band 4. Visited Hawaii 5. Watched a meteor shower 6. Given more than you can afford to charity 7. Been to Disneyland/world 8. Climbed a mountain (Hahahahaha no.) 9. Held a praying mantis 10. Sang a solo (I don't sing.) 11. Bungee jumped (not gonna happen) 12. Visited Paris 13. Watched a lightning storm at sea (What?) 14. Taught yourself an art from scratch 15. Adopted a child (I'd like to.) 16. Had food poisoning 17. Walked to the top of the Statue of Liberty (walked there... not going to happen) 18. Grown your own vegetables 19. Seen the Mona Lisa in France 20. Slept on an overnight train 21. Had a pillow fight 22. Hitch hiked 23. Taken a sick day when you’re not ill 24. Built a snow fort 25. Held a lamb 26. Gone skinny dipping 27. Run a Marathon 28. Ridden in a gondola 29. Seen ...

I haven't written in my journal in the last several days, so I am blogging out of turn, but I will write in my journal after I finish writing this. But right now, this is more important. I love Ben Folds. Recently his music has been popping up in my life - and I always pay attention to the music popping up in my life. A friend of mine recently met Ben Folds and recorded a song for his upcoming album. While making dinner for the benefit we listened to "Rockin' the Suburbs," and I heard an A Capella group perform "The Luckiest" last weekend. "The Luckiest" has been one of my favorite songs for a long time. I often write about how lucky I am - and I truly am lucky. Today I had a hard time feeling lucky until the end of the day. I woke up this morning and decided to check my voicemail. On my land line I usually let my messages build until there are about 30, and then I go through and delete them. I knew I only had one or two, but strangely I d...

Dear Lungs, I know you and I don't always get along. A lot of the time you are the bane of my existence. You make it hard for me to do things - especially in winter. Besides all that, I'm asking that you please hang in there. I'm trying my hardest to keep you healthy, and it would be a real bummer if we have to spend most of the winter doing really caustic IVs that harm your friends, Liver and Kidneys. I know Liver and Kidneys pretty well, and they tolerate all that junk we need to keep you healthy, but Lungs, seriously, let's knock it off. Liver and Kidneys (and even Brain) don't need all those toxic chemicals. I'm sure they yell at you because they have to work extra hard when you don't cooperate. We have big plans this winter. We want to visit with Sarah Lynn and go to New Years Parties (if I have to spend New Years in the hospital, Lungs, I will not be happy with you). I want to go ice skating with my friends and help the CF Foundation. I want...

Dear Insurance Company, Thank you for putting a price on my life. I was having a casual conversation today with my brother about whether or not I should see the wonderful Doctor of Oz, he suggested that I see her without my parents knowing. I said I could, but that Mom might find out because she would get the billing statement. The Milwaukee Hospital of CF might actually have a.... wait, no. She shouldn't get the bill. I'm over 18... it's against HIPPA for her to get the bill. Huh. I should tell my brother that. Anyways, I had to explain to my brother that I'm slightly worried about going to all sorts of doctors in search of someone who gets me because I have a cap on my insurance. I had to explain this cap to my brother because he didn't know - and I guess most people wouldn't realize this about your private insurance unless you're really sick. My life is worth 2 million dollars to the insurance company. In my lifetime, they will only pay 2 million...

So I read this book recently, I may have mentioned it - and pretty much it gave me the self-confidence to actually challenge my health care providers without being a huge bitch about it. Name of book: "Sick Girl Speaks" - and actually, in all honesty, I had never heard of this book two years ago when I wrote an essay with the same title. Crazy how us CFers think alike. Now I'm going to have to get her permission to use the title for my essay, which isn't a big deal, she's great. And if she'd rather I don't use it, that's cool too. I'll come up with something else. Anyways, back to challenging my quality of care. I don't remember the last time I saw my CF doctor. Probably last February or March when I first met him. Yeah, that was the first time I officially met him as a patient of his, and the last time I saw him. I don't like this. Not one bit. But for now, it seems that my parents have convinced me not to challenge my own care. ...

I am hopelessly liberal. I thought one day I might be able to fight it and understand a conservative view point, but that day has yet to come. Conservative view points make my stomach churn, my eyes bleed, and my legs twitch. Well that last one could be restless legs syndrome, but the first two are an inability to understand bigotry. I know that not being able to understand how someone else could think like that makes me bigoted in my own way, so no need to point that out to me. That's why I'm writing this. I'd like to get over my bigoted thoughts of hate towards those who are bigoted, hateful people. Today, my nurse and I started discussing movies, leading to Heath Ledger and his role in "Brokeback Mountain." I said that I felt the movie was okay. Giant pause, my nurse said he didn't see it because he didn't want to watch gay cowboys. I shut my mouth so fast so all those hateful "you hate gay people" comments weren't allowed to esca...

Hello All. It's me :-P I'm still not sure what to write about - other than the fact that I am listening to a COVER of "Witchdoctor" ...and do we know which country it came from? If you guessed the Britain, you were totally right, and totally inSync with my iTunes. I have come across some totally amazing British SHIT. Total and complete musical SHIT, but it is genius in it's own way - like in that Hanson singing "Mmmmbop" kind of way. You just can't turn it off and when it comes on you need to dance. Thanks to Chris for helping me do some updates to this blog. I'm now using Google Analytics so do me a favor and click on random thing on my site. That, and visit me 40-50 times per day to boost my numbers. Like I said before, I'm still not sure what to write about, although Sarah Lynn and I had an amazing hour long conversation today. We talked about our AP Language Forgiveness papers - although my mother wouldn't sign the permissio...

I haven't decided whether or not I'm going to be upset over this or not. At the hospital where I get my pulmonary care - UW Hospital in Madison, we have had two CF Support groups for the past four or five years. When I first started attending 'couples' group, I fell in love with it. I loved meeting people like me. I have also enjoyed the singles group (where just the person with CF shows up), but not in the same way I love the couples group. A while ago I decided to stop pretending I could find someone to drag along with me to the meetings. I stopped dragging friends along. I wasn't sure what they got out of it. When I was dating someone long-term-ish I did take him, but one of the other members said to me, "Carla! You bring a different guy to each meeting." Awkward. My dad has attended with me, which was really good for both of us. My mom attended, but she didn't like it and wouldn't talk about it. But in the end, I stopped pretending an...

I have just read the reason for my addiction to Twizzlers - especially back when I was depressed. I used to eat them by the pound. Turns out sugar tuns to carbs, which contain tryptophans, an amino acid that triggers serotonin - the "Happy" neurotransmitter. They make me happy, literally. That's your random fact for the day.

Today I went to get groceries. I went to Target (Super Target) because it's slightly smaller area to walk in, plus they have my deodorant and toothpaste in the same stop. When I got home, I took the frozen/refrigerated stuff and brought it up with me into the house. The rest of the groceries are still in my car. I put away the groceries and then sat on the couch to catch my breath. I planned on going to games night in a couple hours, but instead, I woke up 4 hours later. Now, I have accepted my limits fairly well, but this is one that pisses me off. I should be able to get my own groceries! How can I live on my own if I can't get my own groceries? I mean, I also showered today, went to my therapist and stopped at St. Vinnny's to get more photo frames, but I still should be able to get my groceries. ...and the laundry I started this morning is still in the washer.

I finished reading "Sick Girl Speaks" by Tiffany Christensen tonight. It's honestly the best book by someone with CF that I have ever read. It's different from all the rest. It's great. I'd even recommend it to those of you who don't have CF - those of you who want to see into "The Sick World," as Tiffany calls it, without being scared out of your mind by gory details. If you would like to borrow my copy, you're more than welcome (you know, those of you here in town). I wrote notes in the margins - mainly for me so that I can write about similar topics later, but I underlined things that I agreed with. Fast read, nice print size, I loved it. I always find it amazing how much CFers have in common. When I first attended a CF meeting I thought they had cloned me and sat me down with my clones to chat about life. Sure our experiences had been slightly different but our emotions are so similar. That's always comforting. There are peopl...

I'm terrified my PTSD is coming back - even more terrified than I am of my CF. The PTSD makes me a different person - a VERY crazy person. A very ANGRY, crazy person. At least my CF can't take my personality from me. My dad says that maybe these are just normal dreams - but then why do they bother me so much? The following is straight from my journal entry for today. To catch you up, it's no secret that I was stalked in high school by a teacher and it caused my PTSD. A surgery that nearly killed me didn't help and triggered the big episodes of crazy, but the stalking started it. Also, the teacher was fired about 2 years after I graduated. I know why and how, but I don't ever write about it publicly because this is a public blog. So here's my entry. Last night I had a PTSD nightmare. It was awful. I had a dream that [the teacher] convinced me to date him and we were engaged. I remember him trying to trap me and I was running away. He desperately trie...

Notes to self: 1. Chill out. Do not pass out from a panic attack just because it has been almost 24 hours and you haven't heard back from that email... 2. Chill out, I'm sure your friends may still want to hang out with you even though you sent a very scary email to them. 3. Chill out. It was probably pretty obvious anyways that you are sick. They probably don't hate you because you have CF cooties. 4. Chill out. Go finish Journal 23 and you'll feel better. Especially after you start Journal 24. Even if everyone else hates you, your journal doesn't and neither do all those happy episodes of "Mad About You" on the DVR. 5. Chill out. You'll find the three last things you wanted to give as Christmas gifts but got lost when your parents cleaned your room - it got clean, and if you have to improvise other gifts, you will survive. You couldn't have cleaned it without them. 6. Chill the fuck out.

Here's a little something I came across today: THE MANLY LOOFA Because men need a way to keep clean. This made me laugh.

Dear World, This will be my last post until I get my act together and write in my regular paper journal. That is much more cathartic for me because I don't think, I just write.... I am not going to allow myself to blog until I have a good topic in my journal journal. I have made other rules for myself, mainly to help me get back to a good place where I know who I am. I am reading a book by a woman with CF who has had 2 double lung transplants. She is so wise, and I know she's more than 10 years older than I am currently - but her wisdom is what I crave. I know writing in my personal unpublished journals will help me get there. (by the way, her name is Tiffany Christensen and her website is www.sickgirlspeaks.com ) I think I have figured out why I have stopped writing in my personal journal recently: I am afraid of what my mother will find when I am gone. I have never hidden my journals - and I'm surprised she hasn't read them before. But I don't want to self...