Tuesday, December 30, 2008

Dear Carla

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.

Sunday, December 28, 2008

The Things You Think

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 person who doesn't like to ask for help but who desperately needs it. I no longer stand when I do my hair and makeup. sometimes I don't even stand when i shower - I just don't have that much energy. And all the crap from my trip to my parents place has invaded my living room and will stay there until some nice person helps me move it. My brother was nice enough to load all my dirty laundry and things into my car to go to my parents place - but he can't be here now to help me put away the laundry that is now clean because my mother did it for me.

My friends need to be willing to help me and I have realized that I need to be able to ask for help without feeling guilty - so, yeah. This is all part of me coming to terms with my CF and being able to get sicker and still do the things I want to do - like have a clean, organized house and write my book and still spend time with friends. Sometimes, that time with friends is going to have to be while they are helping me out. That's just the way it is.

That was my long-winded way of saying, be a nice guy and help me out. Or be a douche bag and don't come over. "

So those are the things I thought today.

Thursday, December 25, 2008

End of 2008 ... Because I like to Reflect

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
*I got some great Angels this year. And I will never forget the Angels I have gained throughout my life.

5. What countries did you visit?
*France (for about an hour)

6. What would you like to have in 2009 that you lacked in 2008?
*A little more luck with my health. Not starting out on O2 is a plus. Let's not gain something else like endometriosis... I'm done with new diseases.

7. What date from 2008 will remain etched upon your memory, and why?
*June 8th - we left for Europe.
*October 14th - LUCA WAS BORN!!!
There were some sad things that happened this year - but I try not to remember exact dates

8. What was your biggest achievement of the year?
*Raising more money for Great Strides
*Surviving Europe

9. What was your biggest failure?
*I try not to judge myself by failures

10. Did you suffer illness or injury?
*Yes, yes I did.

11. What was the best thing you bought?
*Stuff from IKEA!

WHAT ABOUT 12 and 13?!?! (I know I'll probably steal questions from other ones and put them here...)

14. Where did most of your money go?

15. What did you get really, really, really excited about?
*Dating again, but we're going to forget I put that there.

16. What song will always remind you of 2008?
*"I Kissed a Girl" - Katy Perry

Compared to this time last year, are you:

17. Thinner or fatter?

18. Richer or poorer?
*Money-wise? Same-ish
*Friends-wise, richer! I have been through a lot and I know who is still there for me!

19. What do you wish you'd done more of?
*Writing? Not really though, I tend to enjoy myself.

20. What do you wish you'd done less of?
*Playing Zuma, Minesweeper, Solitaire, etc.

21. How will you be spending Christmas?
*With the Fam. Already celebrated with Chris, Kyra and Luca!

22. Did you fall in love in 2008?
*Kinda... but, um, let's not talk about it.

24. What was your favorite TV program?
...Oh, so many!
*Doctor Who
*Mad About You (I record re-runs :-P)
*The Daily Show
*Criminal Minds, etc. etc. I watch too much shit.

25. Do you hate anyone now that you didn't hate this time last year?
*I don't hate anyone, but there are people who are no longer on my "Good List."

26. What was the best book you read?
*"Sick Girl Speaks"

27. What was your biggest musical discovery?
*Every. Single. British. NOW. I died and went to music heaven.

28. What did you want and get?
*Um... to go to Europe?

29. What did you want and not get?
*Really? Let's not answer this one.

30. What was your favorite film of this year?
*Movie I watched or movie from this year? Geeze, I don't remember all the movies I've seen this year. I love "Funny Face."
*27 Dresses... haha.

31. What did you do on your birthday, and how old were you?
*ON the day? I saw my therapist. I tried to forget the rest of the day. I was 22.

32. What one thing would have made your year immeasurably more satisfying?
*More love?

33. How would you describe your personal fashion concept in 2008?
*Hate the Leggings, Embrace the Leggings.

34. What kept you sane?
*Dr. Martin
*My friends

35. Which celebrity/public figure did you fancy the most?
*Hillary Clinton
*Natalie Portman

36. What political issue stirred you the most?
*Gay Marriage
*Civil Rights
*Mental Health Parity
*Stem Cells
*Women's Issues
*The War - I WANT PEACE!
...I get a tad worked up about these things.

37. Who did you miss?
*Sarah Lynn... I'm away from her the most.

38. Who was the best new person you met?
*Luca! By FAR!!!

39. Tell us a valuable life lesson you learned in 2008:
*I can get through anything

40. Quote a song lyric that sums up your year:
"I am the luckiest."

Merry Christmas!

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 talk about myself. I need to work on this.

Merry Christmas Everyone.

Sunday, December 21, 2008

Random Thing

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 a total eclipse
30. Watched a sunrise or sunset (both)
31. Hit a home run
32. Been on a cruise
33. Seen Niagara Falls in person
34. Visited the birthplace of your ancestors (The countries, not all the cities)
35. Seen an Amish community
36. Taught yourself a new language (yeah, but I don't know it well)
37. Had enough money to be truly satisfied
38. Seen the Leaning Tower of Pisa in person
39. Gone rock climbing
40. Seen Michelangelo’s David
41. Sung karaoke
42. Seen Old Faithful geyser erupt
43. Bought a stranger a meal at a restaurant
44. Visited Africa
45. Walked on a beach by moonlight
46. Been transported in an ambulance (Not yet!!! :-D )
47. Had your portrait painted
48. Gone deep sea fishing (did we do this? I don't remember)
49. Seen the Sistine Chapel in person
50. Been to the top of the Eiffel Tower in Paris
51. Gone scuba diving or snorkeling (yeah but I failed hardcore. I succeeded in a pool)
52. Kissed in the rain
53. Played in the mud
54. Gone to a drive-in theater
55. Been in a movie
56. Visited the Great Wall of China
57. Started a business
58. Taken a martial arts class
59. Visited Russia
60. Served at a soup kitchen
61. Sold Girl Scout Cookies
62. Gone whale watching
63. Gotten flowers for no reason
64. Donated blood, platelets or plasma (I donated my blood to the floor of the OR... does that count ;-) )
65. Gone sky diving
66. Visited a Nazi Concentration Camp (Dachau)
67. Bounced a check
68. Flown in a helicopter
69. Saved a favorite childhood toy
70. Visited the Lincoln Memorial
71. Eaten Caviar
72. Pieced a quilt
73. Stood in Times Square
74. Toured the Everglades
75. Been fired from a job
76. Seen the Changing of the Guards in Arlington Cemetery (was it there, or the Tomb of the Unknown Soldier? I've been to Arlington. Seen Changing of Guards. Good enough).
77. Broken a bone (a toe.)
78. Been on a speeding motorcycle
79. Seen the Grand Canyon in person
80. Published a book (Been published in newspapers and mags. Working on my book).
81. Visited the Vatican
82. Bought a brand new car
83. Walked in Jerusalem
84. Had your picture in the newspaper
85. Read the entire Bible (Haha. Good one.)
86. Visited the White House
87. Killed and prepared an animal for eating
88. Had chickenpox
89. Saved someone’s life
90. Sat on a jury
91. Met someone famous (David Sedaris!)
92. Joined a book club
93. Lost a loved one
94. Had a baby
95. Seen the Alamo in person
96. Swam in the Great Salt Lake
97. Been involved in a law suit
98. Owned a cell phone
99. Been stung by a bee

That was lamer than I thought. I have done a lot of things, though :-)

"The Luckiest"

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 decided to check them anyways. And there, in my inbox was a message that is the root of my fear of answering machines. The message was from Dan, my friend Janel's fiancé. When I heard his voice, I knew something was wrong. Then his voice from the voicemail informed me that my friend had passed away on December 11th and that the memorial ceremony was today.

I was stunned. I immediately called Dan to try and sort out what had happened. Janel was never very good at keeping track of my phone number. She kept losing it. Dan found my number last night and called to inform me. On the night she died a relative was staying with her because Dan works at night. She had been feeling ill and increased her O2 - and figured it was because of the cold. She was due for a tune-up soon, so would be going to the hospital and they would figure things out. There was no indication that anything was wrong, but in the morning she was gone. The doctor who did the autopsy concluded that it must have been a mucus plug and she had pneumonia.

I was stunned. I called my dad to try and get some support because Darin was still sleeping. Dad wasn't surprised. Neither was Mom. They didn't react like I thought they would. I slept all day - maybe some of it was to avoid dealing with the pain. It didn't hit me as being real until I was watching movies with my friends this evening. I cried the entire time. I pretended to be asleep so that no one would notice I was crying.

When we had watched two movies and people were sitting around talking, I was snotty. I was a brat. I do that - I get really mean when I'm in pain. Eventually, someone said something about dying in their sleep, and I turned to Darin and said, "That's not funny. That's how Janel died." To complicate things, my friend Janelle was on my other side. I finally had to clarify what I had said to someone, and I ended up getting big hugs and cuddles, which, as it turns out, was all I wanted in the first place.

I wanted some reassurance. And while I know that no one felt they could say anything comforting - just recognizing that this is hard for me is all I need. On my own I come to the conclusions that she and I aren't the same person. I can live past 27. I can be proactive in my care and I can just have a different story line. CF is different for every person - despite how similar we all seem.

This is my 5th CF death in a year. I have known 5 people who have died of CF. I was only able to attend two of the services - other circumstances prevented me from attending the last three. Janel's service was today, and I learned about it less than two hours before it started, and she lived almost two hours away. I was in my PJs when I heard the news.

CF deaths are hard. Cystic fibrosis is awful. What haunts me most about the way Janel left us was that she didn't know how sick she was. There's something about it that I find strange. When I heard she had passed away, I assumed she was on D6/5 with the nurses and doctors doing all they could to make her better again - but she passed away in her sleep. The doctor who did the autopsy said she had pneumonia - but CFers always have pneumonia. That's not a cause of death. That's something I live with everyday. I want to know why she died. I want to know what happened so that it won't happen to me. She died in her own bed in her sleep.

I live by myself.

I wrote Christmas cards this year trying to express how much my friends mean to me. I don't think I did a fabulous job, but I hope they know how much I love them anyways. I have a lot of very amazing, reliable friends who really care about me. I know Janel didn't have the same kind of group of friends. She was often lonely - especially when she was in the hospital. That's how we met. She wandered into my room one day.

It was my first hospitalization for my lungs, and one day she just strolled in and introduced herself. That hospitalization I spent most of my time with her. We sat out on the terrace on the 4th floor because the weather was nice. We talked about everything and she soon became my guide in the CF world. She told me the truth about things - things the doctors couldn't know. She told me about ports, and sinus surgeries (she had 11, I've only had 4, but at the time I'd only had one), and blood gasses, and getting evaluated for transplant, and going on oxygen, and probably most importantly she helped me transfer into the adult world of CF. I was still a pediatric patient when I met her. She told me about the nurse coordinator, the social worker, the doctors, the nurses on the pulmonary floor, the RTs, and probably most importantly, she told me about the CF group. She was the reason I found out about it, and the CF group changed my life. Knowing people with CF changed my life. Janel changed my life.

Later we would drift apart. She was searching for support I couldn't give her. I tried. I always try to be supportive and do everything I can, but it got to a point where it was stressing me out and having an impact on my health. It didn't mean I didn't stop caring about her - it meant that I had to distance myself because I had to put myself first. And now I feel guilty about it.

She didn't have the kind of support I do. I have my parents and my brother and all my wonderful friends. But she did have a fiancé/husband. I visited Janel in the hospital on their 10th anniversary. Dan was there too, and she was happy.

She was older than me, and while I always got the sense that she was much sicker than me, when I saw her lung function tests, they weren't very different from my own. I saw how she lived. I saw how lonely she was and I know I'm lucky. I have the best friends on the planet. I have a loving if slightly dysfunctional family. My family has some problems, but I know that when I am sick they will always be there at my bedside. And I have me. I am learning to be my own best friend, to be able to get myself through anything in case there is no one around.

"And I know that I am The Luckiest."

Monday, December 15, 2008

Dear Lungs

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 to babysit for Maddie and Luca and visit old friends and new friends and just have a jolly holiday season.

Thanks for your continued services. Please don't suddenly cut them off because it is cold out and that makes you angry.

The Body

Dear Insurance Company

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 dollars towards my health care, and then they are done. I guess my life should be over by then... or it's not worth keeping me alive if it has cost them more than 2 million already. (I have back up insurance, so it's not a huge issue, but I worry sometimes that I'm going to live too long). My meds are expensive and so are all those hospital stays, and sometimes it's interesting to think about that my insurance company thinks I'm worth 2 million dollars. And I wonder what risk assessment dude came up with that number.

Big Giant Random Ramble that was in the middle, but I moved it: (My dad would know if I went to Milwaukee. I blog most things I do, he reads my blog, whatever. I can tell my dad anything because I'm pretty sure I remember him yelling at me twice. Ever. Think of the most supportive person you have, multiply that by 100, and that's my dad. You have no idea what a crazy monster child I was - mainly for my mother; I gave her lots of shit and she gave it right back. We still have that passing shit back and forth relationship. Anyways, I was the child from hell and my dad yelled at me twice. Both times I was over the age of ten. Once I really deserved it - don't ask me what I did, I just remember it was really bad. The other time I was in high school and screaming at the top of my lungs because I couldn't find the shirt I wanted to wear, and every other word was "Fuck," and he yelled at me, "You should probably not use the F word so much." Those were his words. I was a tortured little soul at the time and usually took out all my agression on the clothing that didn't fit right or the one piece of hair that wouldn't perform correctly. I bet living with me was really fun back then. Are you sure you didn't know that I really needed some big time therapy because I was SCARY? Especially you, Mom. I love that you comment now that I used to hit myself in the head with my hairbrush while yelling at myself in the mirror because my hair wouldn't stay in perfect ringlets - and it never occured to you that I was one really messed up kid. Makes me laugh now, actually).

Wanted: New Doctor

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.

My parents have told me that as long as I'm not having severe problems with my doctor (he orders whatever I tell them I need), I shouldn't mess with it.

I have heard of a brilliantly wonderful doctor in Milwaukee, and I would like to see her. Possibly have her consulting on my care from Milwaukee, but I would get most of my treatment here in Madison.

I don't know what to do.

I started this post last night when I was convinced that I needed to challenge my care and that I was going to for sure see the great and powerful woman in Milwaukee. Now my parents have talked me out of it, for now.

Saturday, December 13, 2008

Yeah, I'm Going There

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 escape. My nurse went on to say that one could just "turn into an episode of Brothers And Sisters or Grey's Anatomy and find gays and lesbians." I saw nothing wrong with this. I am completely routing for the lesbian relationships on Grey's (I'm also routing for the alive person-dead person relationship too, but that's just because I think they totally jumped the shark with it). My nurse said, "Gay is now cool, heterosexuality is no longer cool." I thought about it for awhile, and have come to some conclusions.

I don't think it's a matter of "cool" vs. "uncool." If it were "cool" to be gay many more people would be choosing to go that way. Gay isn't something you choose, it's something you ARE. Like being naturally blonde, or tall, they aren't things you can easily change. Yes, you can dye your hair or slouch all the time, but you will just look silly. (Not that all dyed hair looks silly - you just look silly trying to pull it off as your natural color - especially when you don't tint your eyebrows).

My own brother desperately tried to be straight before he realized he infact is very much a gay person. I have a friend from high school who did the same - although he didn't realize it in high school, and it even took him a while in college before he realized he is gay. In high school he was very out-spoken against the gays, but now that he knows he is gay, not only does he feel bad about the things he said, he realizes he was silly and also very gay all along.

I believe it isn't a matter of being gay or straight. Either way, it's a person. I believe you fall in love with a person - not a gender so it's very possible to be bisexual during various or all stages of your life (a topic my mother and I fiercely disagree on. She doesn't believe in bisexuality, claiming that if you are a bisexual you must be gay).

I read/listen to/stalk Dan Savage on a daily basis . I'm not going to hide it. I think his ideas about people are spot on most of the time, and he knows what he's talking about. I agree that everyone has some queer in them, whether they will admit it or not. And to some extent, whether society will ever admit it or not, I agree that people are not monogomous creatures and so cheating isn't the issue. It's the honesty, or lack thereof, that is the issue.

Side Note: I was appaled to learn my gay brother didn't know who Dan Savage was, despite the fact that he reads The Onion. I said yesterday to my friends, "Dan Savage is four quarters of the reason I pick up The Onion." And it's true. I don't usually read anything besides Savage Love unless I'm dying of boredom at the hospital. Then I will read all the really short things first and move onto longer things as my wait time increases.

Thursday, December 11, 2008


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 permission slip so that I could write a paper on forgiveness (something about how forgiveness might make me love Jesus) - so I had to interview my grandparents instead of my father. Maybe for the best - the paper was amazing and so was my score. I'm also lucky to have the interview on tape, too. But maybe I will conduct a round of my own forgiveness interviews.

Other than that, my life is routine winter stuff. Like not leaving the house, ever. And being cold.

So here are photos:

Carla's Green Tip: Make your own wrapping paper by reusing that stuff that is slightly thicker than tissue paper. My grandfather sent me something with a ton of it in there, and so I'm being "green." Or you could call it "crafty," but in all honesty, it's really "too cheap to buy wrapping paper."

Happy Two Months, Luca!!! Your Auntie Carla loves you VERY, VERY much! I can't believe how fast you're growing, and that it has only been two months since you were born!

A pretty cute snow bear recently showed up at my house!

Luca during playtime! We're working on holding a rattle :-)

You might call these last two "artsy," but I call them two close-ups of an angel :-)

Sunday, December 7, 2008

CF Group

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 and just went by myself. Which took courage. I am the only one taking care of me most of the time.

Now, they have added a "Committed couples" group. The exact words on the letter are "a group specifically for couples (married or not) that have lived with one another for some time and have cystic fibrosis as the 'third person' in the relationship." That leaves me out. I guess I'm still invited to attend the "family group" by myself because I refuse to dig up a friend and scare the hell out of them several times a year. Not only scare them, but bore them too! I live by myself, but that doesn't mean I don't want to learn from the wisdom of the "commited couples who have lived together for some time." I would like to be able to listen to their conversations, if only so I will have some knowledge before I ever have to deal with living with someone.

I don't know whether to talk to my social worker or not.

I am very passionate about CF groups - because the meetings I attended changed my life. They changed the way I look at my CF, and they definitely helped me feel less isolated. They brought me closer to two of the professionals at the hospital - the nurse coordinator and the social worker.

Will my favorite people still come to the "family group" now that they got their wish and have a "committed couples" group?

When things like this come up, my usual first instinct is to drop it. I will stop attending, and just forget about it - because that is easier. What is easier is not always best. I know I need these groups as much as I need my family and my friends. I wish I could be closer to the CF people sometimes, but I don't know how to make that happen.

I feel left out being the youngest. Being the single girl who lives on her own. Being pre-transplant. I feel like maybe I'm the reason some couples asked for the "committed couples" group. They got tired of hearing me talk.

Saturday, December 6, 2008


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.

Thursday, December 4, 2008

The Big, Scary Grocery Store

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.

Wednesday, December 3, 2008

Book You Should Read

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 people out there like me. People who really get me.

Anyways, read the book.

...eventually, I will finish mine.

Please, Not Again.

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 tried to get me to go with him, but I refused. I ran away, and collapsed when I was finally surrounded by people I trust.

I tried to get the ring off but it was stuck. Then I learned the news that he had killed himself and he had planned to kill me too - and this first part of the dream played over and over several times before it continued.

I remember trying to get away from the stigma of having willingly dated him (side note: nothing that happened to me in high school was in any way me giving in like I had in this dream, which made it even more weird). I was trying to get over the feelings that came with knowing he planned to kill me. I was wandering around the high school trying to find my homeroom.

I was on the 2nd floor and saw a teacher's list and my name was on it. I entered the room, but there were no seats left. They didn't want me - I was cursed.

Then I was in a house with my mom and other random people. Wait. There was something about a car and Sarah was there. I felt safe while I was with her, but then I had to go back into the house. Then objects started to attack me.

I vividly remember two swords flying towards me while I was standing on a staircase. I jumped to avoid them and they pierced the stairs, narrowly missing me. There was a spirit trying to get me - the spirit of [the teacher] had come back to kill me.

I tried to shut the door at the bottom of the stairs so I could run up the stairs to safety, but it wouldn't close all the way. I could see safety out a window but I couldn't get to it.

I woke up.

I woke up confused, convinced the dream was real. I wanted to get dressed but I was confused and couldn't figure out how. I stood in the doorway between my bedroom and bathroom still trapped in my dream.

It took me several minutes to come out of my trance. I fought my way out and had to yell instructions at myself. "FIND PANTS. FIND PANTS. PUT THEM ON." and "BRUSH TEETH. WALK TO SINK AND BRUSH TEETH." If I didn't keep reminding myself outloud what I was doing, I might get trapped again.

I've had many moments today when I've had to snap out of it and focus on what I was doing.

I hate these dreams. They ruin my day. I might go as far to say that they are slowly ruining my soul.

I'm terrified. The dreams are so real. Sometimes they aren't scary in nature, but they still scare me. Like the time I dreamt that Darin had gone to the Rocky Horror Picture Show in Bemidji, not in Milwaukee so I shouldn't be mad at him for not inviting me. I woke up and picked up the phone to call him. It took me 10 minutes to figure out it was a dream. "My brother is at college in Milwaukee, not at camp, so I can be irked with him for not inviting me." I had to remind myself over and over. I didn't call him, but I very nearly did.

Most the dreams are scary or I dream that I litterally can't get my shit together. I dream I am walking around the high school trying to gather and carry all my stuff and I keep dropping things. Those are the most frequent dreams - they don't bother me as much as the ones with [the teacher]. I shudder as I write his name. It still creeps me out.

I dream he is still teaching and I'm trying to remind everyone that he was fired [omitted part]. I can't convince anyone that my story is true and I'm helpless.

I hate these dreams. I've been told they probably will never go away. And I hate that man for it. I hate that he can still ruin my day. I hate that he haunts me in my sleep. I hate that he still exists.

It's probably the one thing I hate the most about my life. It's probably the one thing I can't get over. And I hate that.

That's what I wrote in my personal journal. Long, yes. True, very. Scary, way too. So that's how I spent my day - in a dazed and confused state. The days I have those dreams my muscles hurt. The stress in my sleep really wears me out. Fun stuff.

Tuesday, December 2, 2008

Notes To Self

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.

For You

Here's a little something I came across today:


Because men need a way to keep clean.

This made me laugh.

Monday, December 1, 2008

For Me

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-censor, so I'm going back to saying whatever I need to say.

Hopefully this process will lead to better blog entries and then better book essays and someday I will finish my book and either find a publisher or self-publish (I'd rather not do the 2nd, but I'd rather not do a book tour... I just wrote a VERY long email to my friends about what it would be like to travel with me over spring break, and I don't know if I'm willing to travel that much for a book. Plus there's the whole... nevermind, I won't talk about the government here).

So goodbye for now (it may be tomorrow when a really good idea strikes me, but I don't know).
This is for the good of the blog, the book, and the babe who writes it all!

With love,

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