Learning To Live

Bliss

2011-11-12T10:24:00.001-06:00

Last night I got to see Paul Simon in concert. My boyfriend (I'm still a little, "wait, I have a boyfriend?") got the tickets for my Christmas present. We had an amazing dinner before the show at a steak house. One of the best meals I've ever had. The concert was amazing. It was one of the best days I've ever had - and I felt like sharing. :-)

Life is good.

"Mmmbop"

2011-11-07T11:39:00.001-06:00

All I can hear is "In an Mmmbop they're gone."

On September 14th my best CF friend Lauren passed away. And I still can't really talk about it. I went to her grave both Saturday and Sunday and all I want to do is cry because I miss her so much, but I know she would want me to stay strong and keep on.

I wrote down some words today while watching TV - words that remind me of Lauren and how I feel about her death.

Empty - it's how I feel
Laughter - it's what I hear when I think of her
Brewers Games - she loved them so much
Perkins - one of my favorite memories
65 Roses - we both have it
Fundraising Queen - she had me beat
Bloated Bellies - and that amazing picture of Laura, Lauren and Erin
Birthdays - she never forgot one.
Tears - I've shed so many

Lucky Ladybugs - we'll be forever
Love - it's what she was all about

Giving it a Go

2011-11-04T10:17:00.002-05:00

I don't remember how to do this - the blogging thing. I used to write almost every day and sometimes more than once a day. I used to sit in front of my computer all day watching TV and playing Minesweeper. When I had a thought worth saying out loud, I would blog it. I don't remember how to do that.

I want to write about VX-770 finishing phase 3 clinical trials and VX-809 not being far behind. I wrote a post about my future when these drugs first looked promising. I was thinking about all the possible things I could do - finish college, have a career, have a family. I haven't thought much about any of that since because I didn't want to hang all my hopes on one drug. I didn't want to be disapointed when the trials went poorly and the drugs never became a reality. But now they are a reality.

Back in 2008 I wrote:

"and omg this could happen before Darin graduates college!"

That wasn't a terrible guess as to when the drugs would come out - my brother graduated college this past spring.

These drugs are here and my dreams are back. I don't know what to dream about yet, except a family. I know that's what I really want in life. I want a family and to finish my book. If I would just sit down and write more the 2nd one would come easily.

I think I need to re-learn how to dream big.

Cystic Fibrosis, as told by two

2011-09-30T16:15:00.000-05:00

Today I saw on Facebook that my friend Meranda posted this as her status:

My Attending said he thinks a CF patient will figure out the disease before a researcher after he and I had a long conversation. I just wish that person could be me. I'm tired of suffering and watching my friends suffer. We have to put on a smile and try to get through each day without complaining, while we're suffering--and expected to handle it like a champ. It's almost like people expect CFers to be tough and be unrealistically positive, keeping up the pace with the outside world, and exercising until our legs fall off. Why is this? Most people are laid out with the flu and yet we have to be superhuman without enough oxygen or lung function to get across the room.

And I replied to her:

Meranda - thanks for these words. I feel that we really get life and most others don't. We know not to take the ability to climb a flight of stairs for granted. We know to treasure each and every one of our friends. We're just a little more tuned in. In that way, and only that way is my CF a blessing.

And I stick by my words. Today I am happy and dancing around because I have a little energy to dance around. I went to the gift shop and bought myself some things because I had the energy to go to the gift shop. I've only taken one short nap today. (I plan on taking another, but not a long nap). I'm happy because my hair is going to get washed - and my boyfriend is going to wash it for me. And I have a boyfriend. These are the reasons I am really happy today.

Tomorrow I will be happy because I'm going home from the hospital and I get to eat at the CHEESECAKE Factory. Mmmm cheesecake.

It's days like these where I'm not at my healthiest that I try to find a couple things to be really happy about.

PTSD Triggers

2011-09-26T09:45:00.005-05:00

I'm dedicating this post to PTSD triggers - and the fact that they exist and I still am learning how to deal with them. I'm working on being able to talk about what happened to me and working on certain triggers, but there are some that I have been advised to stay away from completely. Curling up in a ball and sobbing just isn't something on my list of "fun things to do."

From the About.com article on PTSD triggers:

"PTSD triggers may be all around you."

"Because certain thoughts, feelings, or situations can bring up uncomfortable PTSD symptoms, such as memories of a traumatic event or feelings of being on edge and anxious, one way of coping with these symptoms is by increasing your awareness of these triggers."

"Triggers can fall into two categories: Internal Triggers and External Triggers. Internal triggers are things that you feel or experience inside your body. Internal triggers include thoughts or memories, emotions, and bodily sensations (for example, your heart racing). External triggers are situations, people, or places that you might encounter throughout your day (or things that happen outside your body)"

Read that? CERTAIN PEOPLE. For me, it's certain people, certain cars, certain situations, and talking about what happened.

"Now, the best way of coping with triggers is to avoid them altogether."

And that's what I've been trying to do. Because I know I'm still recovering; I haven't put a lot of effort into coping with my PTSD triggers because the flashbacks and nightmares are so bad. I'm getting to the point where I can talk about it without flashing back, but I still get really anxious when I talk about what happened. And forget about being in the same place as one of those certain people... I curl up in a ball and cry.

I lost a very close friend over a trigger of mine... and I'm still heartbroken about it. And I guess you could call this post a last-ditch effort to make her believe me. Or maybe it's a last-ditch effort to show my other friends that I'm not crazy or unreasonable about this. Whatever it is, it's helpful to me. It helps just knowing that information.

Today I found a blog post by someone I consider a "PTSD Expert." That's what motivated me to do a little research and write my own little post on PTSD triggers. You can find her blog post here.

From her post I learned that I should step back and examine what I'm feeling and why. I think I'm going to save that post and continue to learn from it.

No Regrets

2011-07-29T06:15:00.000-05:00

I'm sorry I wasn't good enough.
I'm sorry I was too perfect.
I'm sorry I was too sick.
I'm sorry I never told anyone.
I'm sorry no one believed me.
I'm sorry we grew apart.
I'm sorry I was condescending.
I'm sorry I made a mistake.
I'm sorry you couldn't forgive me.

But most of all,
I'm sorry I'm not really that sorry.

Wheels

2011-07-28T02:13:00.000-05:00

I've got new wheels; he arrived today via UPS. I shall name him Wally, and he shall be my new wheelchair.

My old wheelchair had a few issues (really just a transport chair - the difference being transport chair has little wheels, new wheelchair has big wheels). Like the brakes only working when they felt like it. We may have worn out those brakes on the steep hills of San Francisco and Seattle. Also there was the brake that would fall and drag against the wheel. We tried fixing that but couldn't. And then there was the issue of the little wheels - not so good for off-roading in grass or on gravel, like at a Renaissance Faire. Rolly (the Rollstuhl - because we first used him in Germany, he got a German name, sort of) has been good and been many places (New Orleans and Colorado Springs are the two farthest away that I have yet to mention). Now it is time to take Wally for a test drive at the EAA Air Venture - hopefully mostly paving, but hopefully much easier to push in grassy areas.

Thanks, Rolly, for all the places we've trekked together. Hopefully Wally will see many more wonderful places and help me do many wonderful things I wouldn't normally have the energy to do.

Lactaid Life

2011-06-08T10:36:00.000-05:00

I don't know what to eat. I'm trying to lose weight - about 15-20lbs. That would suggest a low-fat diet. I'm diabetic which means low-carb diet, and now I've determined I'm lactose intolerant - so no dairy. How do you eat a low-fat, low-carb, non-dairy diet? I have no clue.

Part of having CF is dealing with the inability to digest fats; I take enzymes when I eat so I can digest fats. Also because of my diabetes I've been trying to eat low-carb and I was getting pretty used to it. I'm having major problems with my new Lactaid life - I don't like being lactose intolerant and it's really hard to get used to. Be warned the next part is about farts, poop and other disgusting things because it is the reality of my disease(s).

I figured out I am lactose intolerant because I knew I had to do something about my smelly farts - so terribly smelly I was embarrassed by the noxious fumes. I was always trying to hide my farts and you can guess how well that went. Thank ya'll for being too polite to tell me. My family was not polite about it and ended up hurting my feelings. It's okay because they helped me realize it was more than just my CF. I was assuming my CF was the reason for the smelly farts -something I couldn't help or control. Something I hoped no one would notice.

The other things I needed to figure out were the oily poop and the belly aches. My fellow CFers will know what I'm talking about, but for everyone else, it's what happens when you don't digest fats. Again, I thought this was something I had to live with. And then I remembered that I am an idiot. A few years ago I reduced the number of enzymes I take with each meal in order to lose some weight. (FYI, it didn't work. All it did was cause oily poops, smellier farts and the occasional shit in my pants accident. Yeah, that's right. I just said it out loud - I am a grown woman and if I don't take my meds like I should I will shit my pants).

So I started working to fix the farts from hell. First, I upped my dose of enzymes, and that helped the oily poops but didn't really touch the belly aches or smelly farts. Sad panda. Now what? My mother (the person I talk about poop with because I can tell her things like, "Oh crap, I gotta go, I just crapped my pants") brilliantly suggested I might be lactose intolerant because both my dad and brother are.

Duh.

I tried taking Lactaid when I eat dairy and it helped but didn't eliminate the smelly farts of the belly aches. Not eating dairy eliminated both. So now I'm trying to not eat dairy, but I had no idea how hard that would be. My favorite foods are pizza and ice cream. My low-fat, low-carb diet was big on low-fat cottage cheese, cheese, and yogurt. And did you know there is milk in a mocha? I didn't. And that cheese danish I ordered yesterday without thinking: also has dairy. Almost everything I love has dairy in it - so I don't know what to eat.

Low-fat, low-carb, non-dairy diet. Try saying that really fast - Low-Fat, Low-Carb, Non-Dairy Diet. It's fun to say! I think it's even a little more fun if you do a little dance while you say it - or sing it. "Low-fat, low-carb, non-dairy diet!" And the little dance burns a few calories, which I'm all about now.

It's fun to say - but following the diet is really hard. On the other hand, I'm really sick of being overweight. REALLY sick of it. Capital letters sick of it. I've been on the other end - I used to be underweight and then I became diabetic and gained 60lbs. I was a healthy, self-confident weight 20lbs ago. That's where I want to be. I've decided to do something about it - something drastic. Besides following my fun-to-say diet, I'm going to exercise. I have been exercising! I'm going to exercise at least 1/2 an hour three times a week. I've already exercised 4 times in the last week and I plan to exercise today. Go. Me. Go.

My lungs don't like the exercise and my muscles aren't extremely happy either - but they'll get used to it. I'm now doing my best to lose weight and I won't stop until that scale says 160. Because at 160 I feel confident, happy and healthy. At 160 I still have a ways to go until I'm underweight. I have 30ish extra pounds in case I get sick and lose some weight. I don't want to be underweight again either.

When I was underweight every day was a struggle with food. I didn't want to eat it, but I needed it so badly. I was threatened with a g-tube by my doctors and my mom made me drink a giant chocolate malt with each meal - which sounds like a dream but in reality it's scary. A different scary than I'm currently experiencing. Currently I'm at the "if I gain any more weight nothing will fit me" scary. And I'm done.

So I'm doing my best to lose weight so I can be the best me I can be.

Goodbye Grandpa

2011-05-26T11:30:00.000-05:00

My grandfather passed away in March and I've been meaning to post the eulogy I gave. Here it is:

Walter was my grandpa. He was also my hero. We all knew him and loved him despite any faults. The man who never spoke above a mumble and who had a comb-over long before I was born. Some of my earliest and my best memories include Grandpa. I'd like to share some of those memories.

If I had to pick just one favorite memory, it would be catching lightning bugs at dusk. When I was young I would spend a week on the Farm with my grandparents each summer. I remember preparing for our nightly adventure by finding a mason jar and helping Grandpa pound holes into the lid so the bugs could breathe. I remember watching the twinkling lights above the corn field, getting closer by the minute. I would run around the yard capturing lightning bugs and Grandpa would hold the jar for me. Once I had captured about 50 bugs we would take the jar inside and watch them glow. I would put the jar next to my bed and let the twinkling lights dance me to sleep.

Some of the most defining memories I have of my grandfather revolve around watching him take care of my grandmother as they got older. They were married for an amazing 71 years and watching Grandpa take care of Grandma taught me the meaning of real love and loyalty.

I'd like to read an excerpt from a class project I did for a college English class I took in high school. For the project I interviewed Grandma and Grandpa and wrote about teaching in the north vs. the south during the civil rights movement:

Three generations in one room: my father, grandfather and grandmother, and me. Grandpa Walter, hair carefully combed over, reclines in his favorite chair wearing his favorite striped shirt with his favorite slippers. Bruce, my dad, armed with the tape recorder and microphone, settles in the chair between my grandparents like an anxious reporter preparing to cover a presidential debate. Grandma Kathryn, in her striped shirt and slippers, sits in a "borrowed" chair from the dining table with her cup of coffee and glass of iced tea. I sit at the kitchen counter, poised with my pen and paper ready for use, my pen and paper passport to another time - an America I never knew.

Disjointed reminiscing begins in response to my preliminary questions. Our road trip begins; on this journey Grandpa is the chauffeur of our "story-mobile," Dad is the back-seat driver, and Grandma is along for the ride. I am the bug on the windshield - hearing everything, but never speaking above a low hum.

I loved listening to my grandparents tell stories, and am blessed to have been able to capture many of these stories on tape during that interview.

One of my favorite stories Grandpa told me recently - at Christmastime. He told me about how he and Grandma used to dance to the big bands at the college - and that story is especially important to me since I am now a ballroom dance teacher who teaches those same dances my grandparents used to dance.

In closing, I'd like to share with you a letter I wrote to Grandpa in January to make sure I got my chance to say goodbye.

Dear Grandpa,

Just like the frond of the card says, You Are My Hero. I'm so proud to be your granddaughter. I love you more than I could ever express in a card, a letter or a lifetime.

You're sick right now and I'm pretty healthy. I'm used to being the sick one - and if I could I would trade places with you so you could be healthy.

I don't like goodbyes, but I believe if you are lucky enough to know one is going to come you should take the chance and say how you feel. I've lost lots of friends and family and it's never easy. Most importantly, I need to know I've told you how much I love you. You've made such a large impression on my life.

I remember once watching a show about the Golden Gate Bridge with you and you were able to tell me more than the show. I'm in awe of all that you have accomplished - from simply living to see your 90s, to being married 70 years, earning your PhD, being a wonderful father, grandfather, great-grandfather (before I was born!), and recently a great-great-grandfather. Most of all I'm impressed at how nice of a person you are. That's what I want to be most of all - a nice person like you.

I've very nearly run out of room on this card so I'll end- even though I could write for a very long time - with a Thank You.

Thank you for being a wonderful grandfather.
I love you, Grandpa. Now and Always.

Your Granddaughter,
Carla

Lucky

2011-05-26T10:32:00.000-05:00

Lately I've been feeling really lucky.

A woman I knew online died. She was my age and had a double lung transplant but didn't have CF. The headline on her blog is "When life hands you an illness...spread it." I didn't know her well, but I did read her blog - and it's hilarious. I think illness makes you funny. It can make you profound and wise, as well, but the CFers I know are hilarious. Especially my friend Lauren. I've been thinking about her a lot lately, and I know she's not doing so well. Even though she's pretty sick she can still make me laugh really hard.

One of my favorite memories of Lauren is going with her and a friend to Perkins. Our waiter was "Sean" but she kept calling him "Seen" because of the way his name is spelled. I laughed so hard I nearly peed my pants that night - and it's always that way when you're around Lauren. I would love to be that funny - maybe someday if I'm that sick I will be. Maybe it's something you learn from being so sick all the time.

I'm so lucky it makes me cry sometimes. I'm able to work part-time and spend time with my family and friends and I feel like I'm truly alive. I haven't always felt this way; when I spent all my time waiting to get sick, for example. But now I don't focus on breathing or how difficult it is to breathe because I'm not so worried about needing IV antibiotics and being hospitalized.

There are times I'm actually bored - and not because I'm laying around sick. It's because I'm not really sure how to spend this energy I have. Sometimes I'm torn between spending the energy or saving it up. Most days I feel like spending it - I have it, it's a gift, I'm going to use it!

I feel so lucky - and it's an amazing feeling. Try and think about why you're lucky, I guarantee it can make you feel so much better. I may not be funny, but I am lucky.

Graduation

2011-05-19T13:10:00.000-05:00

May is busy. I am attending 2 graduations, Great Strides, and trying to balance work and my life. This spring feels like my graduation - a graduation into life. I'm being thrown into the realization I'm an adult and I'm not so sure I like it. When I was little I used to say that I wanted to stay a kid forever. I'm sort of realizing why that wasn't such a bad idea.

I'm a grown up. Are you serious? You've got to be kidding me. I'm still 7 and running around the backyard with my friends. I'm playing with dolls wanting so badly to be 12 so I can babysit. I'm still 12 and can't wait to be 16. I'm 16 wanting to be in college. I'm living in the dorms. Am I really turning 25? Why do I no longer consider 25 an adult?

The other day I was driving my car around, listening to new music and enjoying the nice weather. Then Taylor Swift's "Never Grow Up" came up on my iPod and and as the song played I cried and then cried harder. The first part of the song is:

Your little hands wrapped around my finger
And it's so quiet in the world tonight
Your little eyelids flutter cause you're dreaming
So I tuck you in and turn on your favorite nightlight

To you, everything's funny
You got nothing to regret
I'd give all I have honey
If you could stay like that

Oh darling don't you ever grow up, don't you ever grow up
Just stay this little
Oh darling don't you ever grow up, don't you ever grow up
It could stay this simple
I won't let nobody hurt you
Wont let no one break your heart
No one will desert you
Just try to never grow up
Never grow up

I cried some more. I cried because the first verses remind me of Luca; He's little and laughs at everything and I would do anything to protect him. Like the song says, "I won't let nobody hurt you." I would lay myself in front of a bus to save him. He's innocent and wonderful and I love seeing the world through his eyes. I was crying because I don't want him to grow up so fast - I want him to stay little longer.

And I cried. The last time I promised someone I wouldn't let anything happen to her she died in a car crash less than a year later - and there was nothing I could do. This song reminded me of Tory and how I couldn't protect her and how much I loved her too. I know it's almost been 11 years since Tory died, but it still hurts. Will it ever stop hurting? I cried harder.

I cried because my grandfather died in March and I miss him. Death and funerals always remind me of the people who should still be here. I should have had more time with my grandparents while they were younger. I should have gotten to meet my aunt and had more time with her husband, my uncle. I shouldn't have to say goodbye to CF friends. They should be here fighting with me.

I cried because my best friend graduated from college. She has been my best friend since kindergarten and she's graduating from college. We really are adults, aren't we? I want the summers we spent walking around downtown and going to the pool back. I want to be putting on a puppet show out her bedroom window. I want to be talking into a microphone about nothing and laughing about everything. I miss her. And not just her - I miss all my friends who have graduated and moved away. I want them all back. I want to be in college again - go down to the dining hall and eat dinner every night with the same group of amazing friends.

Graduations make me a little sad because it's something I wanted so badly - to succeed in college - and I really failed. I'm so proud of the graduates because I know the kind of work that goes into earning a degree. But I can't help feeling a little jealous, which makes me cry.

My brother is graduating from college. I cried. I finished the quilt I'm making for his graduation which made it all feel really real - he is actually graduating and moving to Colorado. Colorado. That's like 3 states away. Three Big States. And I don't know if I can handle being so far away from the person who probably understands me the best. Because he's lived with me and traveled with me he knows all my needs. My best friend Sarah comes close, but she doesn't have everything memorized. I can call Dar-Dar in a complete panic and he can calm me down. I don't know if I can even put into words how much I'm going to miss my little brother. Who's going to do my dishes and laundry? I cried. I am crying now.

There is just so much flooding my brain and I'm trying to balance all this with work and I just wish I had never grown up. I want to give back my Adult diploma. Make me a kid again. Can't I un-graduate? There are so many things I love about my life, but losing people is not one of them.

The song ended but my tears wouldn't stop.

Update on Me

2011-05-11T09:20:00.000-05:00

I've been busy. Too busy at times, but I love being busy.

I've been thinking a lot lately - about my blog, my book and my personal journal. I want to write more. The more I write the better I write. If I write more I will eventually stumble upon and say something profound.

A couple days ago I read a post on a different CFer's blog, and it brought me to tears. She wrote about losing many CF friends recently - and it reminded me of the year I lost 8 in just as many months. She wrote about losing her best friend, and I cried for her and for me. I miss having CF friends, and at best I have CF acquaintances. I want friends again. I want to be able to share and talk about how we deal with this disease.

Since I've been healthier I've avoided my CF friends, ignored my blog, and dropped out of online CF communities - communities I used to be such a big part of. Part of me ignored it all because if I'm not involved I'm not dealing with CF every day. And I want to be able to ignore my CF and pretend it's not there. But I can't and I need the support from my cysters and fibros (terms I'm not sure I like... I prefer CFers).

So here I am, wanting to blog more, wanting to post more in the CF groups on Facebook, and chat with my fellow CFers. I'm back and I'm not hiding my CF anymore. Like a friend of mine said yesterday, "We're all in this together!"

Love

2011-05-11T09:11:00.000-05:00

My goal in life is to love and be loved. It's that simple. Last night I got an email from Chris and I want to share it here because I felt so loved. Here it is:

Hello everyone!

One of my best friends, Carla, has a rare and serious illness called Cystic Fibrosis. Carla loves my son Luca, and has a lot of fun taking walks, playing games, hiding from pretend bears, looking for ducks, playing catch, reading, and all sorts of things with Luca. She is so close to us that she has spent some Thanksgivings and Christmases with us. She's also Luca's honorary auntie, from before he was even born. She's really part of our family.

Here she is with Luca a couple of years ago:

The disease she deals with is debilitating and often leads to an early death. Since patients with the disease die early, pharmaceutical companies don't have much interest in trying to find a cure. As a result, most of the research is funded by donations to the Cystic Fibrosis Foundation. The Foundation even sacrifices member benefits in order to put more of its donations into research.

I'd like Carla to be there with us when Luca has his first day of school, when he learns to read on his own, when he starts to look and talk funny because of adolescence, when he has his first date, when he graduates high school and college, and when he starts his own family.

We can all help that happen by donating to the Foundation. So if you have a dollar to spare, even in this terrible economy, would you consider donating to the Cystic Fibrosis Foundation? If so, here's a link to my Great Strides page:

http://www.cff.org/Great_Strides/ChrisS.

Great Strides is the fundraising walk for CF Foundation. If you'd like to join me and my friends and family on May 22 at 9:00 AM, we'll be at Elver Park in Madison, WI.

I thank you from the bottom of my heart for your time!

Sincerely,

Chris

Thank you Chris, Kyra and Luca!!!

REASON 4,511

2011-04-08T09:55:00.000-05:00

So I've been busy since getting out of the hospital and getting rid of all my strings. I have work, and friends and family, and all those projects I have...

But I was thinking about the person who still isn't talking to me because of HALLOWEEN - and I thought I'd post reason 4,511 why I can't be around my trigger. He knows that I have problems with him, and yet he says things like this:

4:12pm
I havn't heard anything. If you need a guy to make out with to make him jealous though Im sure you could find one, at the very least id probably be willing to help you out :P

Um, I try not to swear in my blog, but seriously, fuck this kid. This was awhile ago - but with the awesome new facebook "see every conversation you've ever had with this person" feature, I came across this. Fabulous.

No Strings

2011-03-11T11:29:00.000-06:00

I've got no strings. It's been 5 days since I finished my home IVs, and a week and 1/2 since I got home from the hospital. Hopefully I'll be blessed enough to go another 18 months without IVs - but if not I'm okay with that too - the care I got this time was well worth the drive.

I'm going to say again how much I LOVE my new hospital - it's so fantastic. I'm so glad I made the choice to go farther away to get better care.

In other news, I now weigh 176 - yes, that middle digit is a SEVEN, not an EIGHT or a NINE... when I was in the hospital that middle number became a 9 and it was pretty tragic... but I've lost all that weight since I've been home. Ten more pounds and I'll be done losing weight and I'll begin the journey of learning how to maintain my weight.

I've been keeping busy - knitting, quilting, scrapbooking. I have so many craft projects going it's ridiculous. But one scrapbook is done and one quilt almost done... two more quilts and a million things to knit!

I have to go, there are crafts waiting for me!

Hospital: Day One Million

2011-02-20T19:10:00.000-06:00

It feels like I have been here forever. I've only been here since late on Wednesday. The getting better is going more slowly than usual - and I'm not happy about it. I am, however, happy with the care I'm getting. This hospital is awesome. AWESOME. Here is a list of reasons I'm doing awesome here:

*My attending is WONDERFUL. I see my pulmonologist EVERY day - even this weekend b/c she's the pulmonologist on call. She's so cool. And stubborn. She's very stubborn - possibly more stubborn than me. And she knows how stubborn her CFers are and she doesn't let us pull any crap - not that I pull much anyways, but I pull a little. She insists on writing all the orders for her CF patients even if it's the middle of the night. I love her.

*The nurses ROCK. Now, I don't want to say that there aren't any good nurses at the U, but it's hard to find a good one - and I don't get their schedule. And my favorite nurses usually end up leaving the pulmonary/GI floor to work elsewhere. Here I have the same nurses for SEVEN days in a row. It's amazing. I've had all good nurses, good NAs (here they call them Personal Care Technicians or PCTs. Don't ask me why), and even good nursing students. Some things that make these nurses better are they speak English, they know how to dispense meds properly, and they can handle pouring my pills AND giving me my IVs ON TIME (who would have thought that would ever happen!). So far I haven't had to yell at a nurse or a doctor. I feel confident that these nurses know their sterile technique and know what they are doing. I haven't had to ban anyone from my room - including medical students.

*The nurses round EVERY HOUR - which means you see someone at least every hour. At the U I could go several hours without anyone stepping into my room, so the rounding every hour was weird at first. I was kind of like, "I'm fine, leave me alone!" But now I'm glad that they do it - I at least get to see a human once an hour.

*Every day I get $4 to spend in the cafeteria - it gets me up and walking around and eating more. I don't need to eat more - I need to eat LESS (I've gained all the weight I lost at home back in the few days I've been here).

*The food is better and I haven't gotten food poisoning.

Things that are different and possibly bad about being here:

*It's far away from my house - and from my parents' house, which means my parents aren't here every day. I get fewer visitors. Today I haven't had a single visitor :-(

So those are my two lists. I can handle being a little isolated because the care I'm getting is so great. I am so much more relaxed and not anxious. I'm not waiting for the next med error to happen. When I call for a reason I have a nurse or PCT in my room in less than 5 minutes. ALWAYS. it's awesome.

I'm enjoying my time alone - at least for now. I've been knitting, watching movies and TV, sleeping, and riding my IV pole around the hospital. Yes, I have taken up the art of Pole Riding, inspired by the documentary of Eva's - that scene with her riding her IV pole. I enjoy the funny looks and laughs I get from people as I ride my IV pole like a scooter around the halls. One person told me today "That's totally how I would get around, too." And I smiled.

My room has "the phantom door" - it opens by itself. So mostly I keep the door open - but today I didn't feel like having people around, I tried to keep it shut, but it has now opened on its own. Maybe that's a sign I should stop typing and go back to knitting or reading.

Please leave comments; I like knowing people haven't forgotten about me!

Love,
Carla

Rinse, Repeat, IVs

2011-02-19T09:02:00.000-06:00

I'm back in the hospital. It has been 18 months since my last round of IV antibiotics and almost TWO YEARS since I've had to stay in the hospital, and here I am.

I think this is day 4 in the hospital. Technically my 3rd full day here - I came in late on Wednesday to the ER and didn't get a room until about 9pm.

I am not at my usual hospital, I'm at the hospital about an hour from where I live. It's different here - but different good, not different bad. The nurses are good. The staff is friendly. The food is delicious - maybe too delicious because I want to lose weight, not gain it.

The only drawbacks to being far away from home: Not having as many visitors, and missing all the crazy that's happening at the Capital in Madison.

Dancing with 65 Roses

2011-01-23T10:48:00.000-06:00

I have cystic fibrosis. I have other health problems, too, but CF is the biggie. It's the one my parents stay awake at night worrying about. No one worries because I have fibromyalgia or because I have endometriosis. I know my parents are concerned and sympathetic if I am having symptoms, but it doesn't keep them awake at night. My CF (sometimes called 65 Roses by children) is currently fairly well controlled thanks to the Mannitol - my miracle. My parents and I are sleeping better at night; they aren't up worrying and I'm sleeping soundly with my O2 taped to my face - my second miracle.

I couldn't be happier with the way the Mannitol and now the oxygen at night have helped me. They have allowed me to pursue a dream - something I thought I might never do because of my cystic fibrosis. I am dancing with 65 Roses.

This story goes all the way back to September, when I lost my babysitting job. It wasn't my fault - the child I was caring for needed more stimulation than I could give him. I know putting him in day care was a great decision because I was struggling to take care of him - and I wasn't even full-time. I was limping along, but feeling guilty that I wasn't giving him the attention he deserved.

In September - and for years before - I was tired all the time. And I mean ALL the time. Most days, I would take one or two naps, each lasting at least 4 hours. And I would try to sleep 10-12 hours at night, so I was only awake about 8 hours a day. Until we finally got slapped by Captain Obvious and realized I needed O2 when I sleep. And I've been awake ever since.

Before the oxygen, I could go two or three days at top speed, and then I would sleep for one full day. That's how I traveled; it's how I lived. Now, I can go almost two weeks before I need to stop and rest for a full day. And if I take partial days to rest I can go longer. The only way for me to describe how it feels is by saying it's a miracle.

And now, I'm dancing with 65 Roses.

I love ballroom dancing. I have for almost 10 years now. When I was my sickest, a family friend suggested that I become a dance teacher, and that idea has stayed with me, although I figured it would never become reality because I didn't have the energy.

Babysitting on a regular basis for a year BEFORE I had the oxygen at night boosted my confidence in my ability to do things - to be able to lead a more normal life instead of waiting around to be sick. The Mannitol allowed me this freedom. I don't worry when I will spend the next two weeks in the hospital. I feel much more like a regular person.

So when I lost the babysitting position, I was worried I was going to be bored stuck at home. I would have made about 10 million quilts by now... so it's a good thing I stumbled upon the perfect opportunity for me.

I got an email from the dance studio where I had taken a class over the summer. This email came about two weeks after I lost my babysitting job and when I was starting the oxygen at night. The email said the studio was looking for more ballroom instructors - so I replied and ended up a ballroom dance teacher. It happened really fast, and the details are complicated, but basically I am a student teacher at the studio. I am learning to teach what I love - ballroom dancing. The studio was also looking for someone who could possibly teach classes for children, and I fit perfectly into that role with all my experience and my love for kiddos.

I started my 'job' (it's complicated... but I'm working part-time and have worked a lot with my rep from Social Security to figure it out... and this is the first year I have to file taxes, which is a whole 'nother story). I fell in love with my job - I love helping at the studio with secretarial work. I love decorating the studio and helping with parties. I love training with the owners of the studio. I love teaching my classes. I love everything about my job and I'm am completely happy.

Since October I have thought a lot about this post and how I would announce formally that I am a ballroom dance teacher. I've thought of what I had to go through to get here - and how I would do it all again to get to this spot. I'm in love with what I'm doing and I'm slowly figuring out how to balance my time between fun, work at the studio, and the boring things like dishes and laundry. I honestly never dreamed that I would get here. I thought my lungs would never be okay enough to do this stuff. And that's what they are - they aren't great, but they are so much better than they used to be. I try not to take a single breath for granted because I know what needing IV antibiotics feels like. I know how hard it is to walk when you're sick from your CF. Every dance step I take is for all the people I know and all those I don't know who have CF. I'm living my life the best way I know how because I can.

That is how I ended up Dancing with 65 Roses.

The Best

2011-01-18T15:13:00.000-06:00

I think I have determined my problem, but for the life of me I cannot come up with a solution.

I want to be the best. At everything.

My problem is I am too good at too many things - and yes, that is a very arrogant statement. But if I do something I am going to be good at it; that is the way my life has gone - it's who I am.

In high school, if I were a member of something, I had to be the best and/or the leader. Foresics team captain, band section leader, president of the Spanish club, etc. If I did it, I wanted awesomeness from myself. Not to mention I had to be awesome academically.

And I tried the same pattern in college, but I got too sick to continue that. So I lapsed into being the best at the things I could still do - the best knitter/quilter/crafter, the best sleeper, and the best patient in the hospital. That last one is sort of a joke. I knew how to get what I needed, but the staff would certainly not agree that I was a "good" patient. I think it says something like "difficult" in my chart, which basically means, "pain in the ass because she won't give up until she gets what she wants."

Now that my health is better, I still want to continue my crafts - and be amazing at them. I want to continue to write in my journal at a champion rate, and blog creatively, openly, and in a way that shows some sort of talent. I want to keep reading books that inspire me or get me thinking.

I have more to add now that I'm doing better. I think this might be the first time I have mentioned this in my blog, but I have a part-time job as a ballroom dance instructor. And I want to be the best ballroom dance instructor I can be. I've been making flashcards and studying the dancing and striving to learn as fast as possible so I can be THE BEST right now. I don't want to wait; I want to be good now.

So I put all those together and I'm swamped. But I still have a couple more things - the most important things - that I want to be THE BEST at. I want to be The Best friend I can be, The Best daughter/sister/granddaughter/cousin/auntie I can be, and The Best friend I can be. I think right now I'm having the hardest time fitting in this last part. I don't know how to fit in all my favorite people around my favorite hobby/job: dancing.

My new job seems to be taking and eating all my free time - well, the time when other people are free, mainly evenings. I'm free in the morning because I rarely work before 11 and I'm free in the afternoons, sometimes.

I want a way to better balance my time so that I can be The Best at all I do (even if it means being THE WORST at laundry and dishes and housework because those things are less important to me. I'd rather be The Best at everything else and have my house a mess!)

180

2011-01-10T11:36:00.000-06:00

I am going to admit my weight publicly on my blog. I weigh 180, and I'm so proud because about a month ago I weighed almost 190. When I went to clinic in November I was really heavy. I'm still heavy - but I'm losing weight and I'm so proud of me.

And I wanted you all to know that I'm finally proud of me and my weight.

Want to know my secret to losing weight? No carbs. Okay, okay, not NO carbs, but a very restricted carb diet. I don't buy bread or tortillas anymore. I have a carb addiction - and I could eat 6 pieces of toast in a sitting. So if I only buy low to no carb foods, I eat better and lose weight. I'm also eating less - and it's working. Imagine that!

I don't deprive myself of meals or ignore my diabetes (the low to no carb diet is probably best for my diabetes, anyways). I don't deprive myself of carbs altogether either. About once a week I let myself eat out and get a sandwich or soup in a bread bowl, and sometimes even Noodles. But for the most part, I eat little meals that are low to no carbs. And I'm really proud that 1) I'm sticking to something and 2) It's working!!!

I finally feel that if I lose weight, FABULOUS, but if I don't, that's okay too - because I'm me. I may not really like the way I look in photos or in the mirror when I teach, but the more weight I lose the more I feel comfortable with myself and tell myself I don't need to lose weight.

Daily Updates

2011-01-10T11:30:00.000-06:00

I'm doing well.

I want to write about my job, my weight, my feelings on life and death, and other assorted things, but who has the time???

I just wanted to quickly post a couple things:

Kyra, from www.kyrachris.com has a wonderful blog about Gravestones and related topics - and I find her writing beautiful. This entry especially:
http://imageinstone.blogspot.com/2010/11/of-reality-life-and-death-part-ii.html

I think I want to work on my book again... and I think I should make Chris and Kyra the editors. Because they are both wonderful writers and know me so well.

But first, I'm going to finish my brother's quilt in my 'spare' time. See the craft blog for that post!

~Carla

Oxygen Face

2011-01-05T08:41:00.001-06:00

So I think I have a permanent case of Oxygen Face. Oxygen Face is what I call the indents from the nasal cannula on your cheeks.

This is going to be a very short post - because, I'm wondering, does anyone else get Oxygen Face?

Is It December Yet?

2010-12-17T13:03:00.000-06:00

So I was pretty sure it was December until I called a friend back and we had to go through all the issues we fought about in OCTOBER. OCT - to the - OBER. The month with Halloween in it... do you realize CHRISTMAS is a week away? That's two months ago.

To be fair, things with this friend - THE friend - were never resolved. I just sort of forgot about them. Among other things, I have been disowned and re-owned, helped bonus siblings with family problems, realized someone close to me has an alcohol problem and tried dating (and not very successfully...). The fact that the friend is still mad at me slipped away and got buried at my pile of things to worry about. I've been busy at work (thankfully - I love it there), and I've been busy in general. Christmas decorations take a lot to put up.

So I called the friend back last night because she had called and left a message the night before. The next hour-ish consisted of me explaining exactly why I can't be with my trigger and crying and blah, blah, blah. I don't even want to type about it. The last thing I said was, "I wouldn't wish what he has done to me on anyone. Especially a friend."

And to continue that thought, No Means No. My trigger has violated that many times, and therefore violated me. I will not stand and be violated again - either directly by being forced to come in contact with him or by having PTSD issues.

I have to keep in mind what Kyra said,

"Your friend may never be willing or able to understand mental illness. Its hard for people sometimes when on the surface someone seems so healthy. Realize that your brain is fundamentally different than someone without PTSD. (And if anyone contradicts you, send them to the head of the Psyc department at the UW, who has research to the contrary) I'm betting your friend wouldn't ask someone with a triple bi-pass to run a marathon. In the same way she shouldn't ask you to be in the same room with your trigger. It would endanger your life and health just as much the marathon would someone with a heart condition."

I want my friend to understand, I really do. I'm not sure if she is willing. I'm not sure if she's able. I won't stand for someone to endanger my life and health. I'm just not going to be okay with that. Ever.

And that's the point I wanted to make in this post. It's okay to have PTSD. It's okay to have triggers and it's okay to need to learn to avoid those triggers. Luckily, my major triggers are a couple people... easy to avoid. My minor triggers (Mitshubishi cars, soccer, my hometown) are also easy to avoid - and even the minor triggers, I usually just twitch a little - I don't have a full-blown flash back. I don't get the full anxiety. But my major triggers are bad for my health. I will stay away from them at all costs - even if I have to lose my friend because she doesn't understand my disease.

Always remember, No Means No.

Thanks on Thanksgiving

2010-11-25T11:05:00.001-06:00

Today is Thanksgiving. Usually I love to post all the things I am thankful for and talk about them, but this year I'm not feeling completely thankful. I'm struggling with depression, which i hope is just situational because of the trouble with my mom and my friend.

But i am thankful. I have some of the most amazing people in the world supporting me through all this. I have a wonderful job (that I need to blog about), and i have my miraculous health. I'm not completely healthy, but I'm much better than i was, and that is wonderful.

I have a nephew who fills my heart with joy no matter how sad i am. I have my bonus siblings - Chris, Kyra, Sarah, and Chase, and i have my unwavering rocks, my brother, Darin, and my dad.

I can't express how thankful I am for these people. They give me faith in the world and faith in myself. And maybe that's what I'm most thankful for - my ability to have faith in myself even when I'm being attacked. My faith in myself definitely wavers, and I'm so thankful to have wonderful friends, family and a great therapist who build me back up when I fall over.

And I'm sort of tipped over today, but I have people who love me surrounding me and reminding me why I love myself.

And I have Luca-Bug. Who wouldn't be thankful for this?

Happy Thanksgiving. I hope you are all as lucky as I am. I hope you are in good health and surrounded by people who love you for you.

-- Carla's on the go! Post from her iPhone.

So Lately

2010-11-20T22:37:00.000-06:00

Recently things have been hard; it's been hard to get off my butt and do anything. It's hard to not think about my mother or the friendship that got screwed up. In hard times like these I try to turn to my angels and let them bring me what I need. This post is going to be quote heavy, but it's how I feel and expresses best my emotions.

I try to live knowing, "You can't always get what you want, but if you try sometime you might just find, you get what you need." - The Rolling Stones. The 2nd half of that quote was my senior quote for the yearbook in high school - because I couldn't fit the whole thing. I honestly believe "If you try sometime, you might just find you get what you need."

Wednesday was probably my worst day. I couldn't stop crying at work. I came home early to go directly to sleep. It was "Go straight to NAP. Do not pass Go. Do not collect $200." I couldn't handle the world anymore. And then my phone started dinging. Ding. Ding. Ding. Ding. You've got Text Message. So I got up to see who was obsessively texting me. And it was three texts from a guy I hadn't heard from since August... and they were very sweet text messages. Apparently, he's a blog lurker (HI!) and was worried about me. I believe my angels sent him to check up on me. More on him later... but....

And tonight I'm having trouble again. Things with my mom still suck. Things with my friend still suck. And I'm not doing well on the path to loving myself completely like I wrote about in the last post. I'm on my way to bed, but a song came to mind - and it's a song I really needed tonight. I need to put myself "In the arms of the angels" and "fly away from here."

I feel like this song... and it is strongly tied to my memories of Ladybug. And I am missing her tonight. And I'm thinking about all my other angels and asking for their help. So here are the lyrics to Sarah McLachlan's "Angel."

Spend all your time waiting
For that second chance
For a break that would make it okay
There’s always one reason
To feel not good enough
And it’s hard at the end of the day
I need some distraction
Oh beautiful release
Memory seeps from my veins
Let me be empty
And weightless and maybe
I’ll find some peace tonight

In the arms of an angel
Fly away from here
From this dark cold hotel room
And the endlessness that you fear
You are pulled from the wreckage
Of your silent reverie
You’re in the arms of the angel
May you find some comfort there

So tired of the straight line
And everywhere you turn
There’s vultures and thieves at your back
And the storm keeps on twisting
You keep on building the lie
That you make up for all that you lack
It don’t make no difference
Escaping one last time
It’s easier to believe in this sweet madness oh
This glorious sadness that brings me to my knees

In the arms of an angel
Fly away from here

"And maybe I'll find some peace tonight/ In the arms of the angel."

Love to all my angels.

Beautiful Words

2010-11-20T11:15:00.000-06:00

These are the beautiful words Kyra wrote about one of my recent posts. After her comment, I will write a little about what she said.

Kyra S. has left a new comment on your post "Mental Me":

Someone once said "Just stop feeling that way!"

Yeah. Right. I'll get right on that.

I know it is hard because of your anxiety to just let it be unresolved (this is from a card carrying member of the anxiety club) but realize that you can. And every time your brain comes back to that "Oh no, I can't take it place" just reply calmly "Yes I can, cause I've nearly died and if I can survive that I can survive this." And just pretend you believe it.

Your friend may never be willing or able to understand mental illness. Its hard for people sometimes when on the surface someone seems so healthy. Realize that your brain is fundamentally different than someone without PTSD. (And if anyone contradicts you, send them to the head of the Psyc department at the UW, who has research to the contrary) I'm betting your friend wouldn't ask someone with a triple bi-pass to run a marathon. In the same way she shouldn't ask you to be in the same room with your trigger. It would endanger your life and health just as much the marathon would someone with a heart condition.

I recently had a conversation with someone in a high position in the mental health community who asked how it is we can change perceptions of mental health in the US. I believe that we need to see people with Mental Health issues as full and complete people. Period. Not to be fixed or cured. Treated? Of Course. Medicated? When necessary. But to see them as valuable human beings first.

You are a whole, complete, wonderful person as you are. Give your PTSD a hug, cause it is part of you and you are wonderful.

Know that you are loved.

PS. Luca says: fffffffjfjfjdjdg. fjhgh edug sfggh h fd hesdjz. (Which I think means "What mommy said!")

These are words are so beautiful, so complete, so good for my soul it's hard to write about them.

I need to realize that my PTSD is just as much a part of me as my CF is. I accepted my CF a long time ago - I know that it is part of me but does not control me. I know that I am a complete person who happens to have CF. I need to do that for my PTSD, too. I need to realize that I am not a crazy burden. I am a person with a medical illness - that happens to be mental - and sometimes I need some accommodations. Just like when I travel I use a wheelchair and my friends accommodate that, they need to accommodate my need to not be around my PTSD trigger.

I may not know what to do about my friend and her inability or unwillingness to accept my PTSD, but I need to accept my PTSD and know that I am a whole person who has some challenges. I need to realize that I did what I had to do to protect myself - and despite the fact that she says I can't be trusted to behave appropriately, I do behave appropriately; I behave in a self-preserving way, sometimes, but other than that my behavior is always appropriate.

I know I have wonderful people supporting me; these are the people that see me as a whole person who happens to have PTSD, not as a burden or a crazy loon.

And maybe I am a crazy loon - but at least I know it and can give my whole self a hug - PTSD, cystic fibrosis, fibromyalgia, endometriosis, depression, anxiety, diabetes and all. It's who I am. And the entire me is loved by some incredible people, and I am working on being able to love my entire self, too.

Like Oprah and Law & Order

2010-11-17T09:29:00.000-06:00

I'm disowned again. Maybe just for today or this week, or maybe for a long time. So Oprah, Law & Order and I have a club.

I'm barely holding it together. "Like a G6" helps. Awesome friends help - but I usually cry because they are so nice and wonderful to me. Later I'm going to post the comment Kyra made on my last post because it is just too beautiful not to share.

The other thing that helps is that Katy Perry song "Peacock." I can't stop watching the silly video I posted a link to last night in the middle of the night.

Like Kyra said, I've almost died before, and I came back fighting from that. I fight for my health all the time. I can fight through this and survive.

So that's what I'm doing today. Trying to survive and to cry as little as possible.

Mental Me

2010-11-17T04:14:00.000-06:00

It's 3am and I'm up. I'm up, listening to "Like a G6" and writing... well, waiting for inspiration and play Bejeweled. I'm sort of a mental mess right now, and I have realized that my blog has become a play by play of my PTSD adventures, and I rarely write about my CF anymore. That's because my CF hasn't really been a problem lately.

I wrote in my last post about a fight with a friend and a trigger who is a person. Well, it's escalated and I'm completely heartbroken.

My friend sent me an email in which she completely ignored my PTSD, and from what I understand, she doesn't want to deal with it. I don't usually do this, but I am putting up a quote from her email because it is what has me so upset.

"A is my friend and I will invite A to events I host, and for now, you will not be invited when A is because I cannot trust you to behave appropriately."

When I got this email I broke into sobs. I can't be trusted to behave appropriately. Untrue. Considering my mental illness, I am behaving in a completely appropriate manner. I will run from my trigger. I actually pride myself on acting mature and like a civilized adult. I am silly - but I know how to behave myself.

My friend is being unfair to me. It's how I feel. She won't talk things through with me - won't listen to my side, but as I was told this evening, what I say will probably fall on deaf ears unless my friend is ready to hear it. It's the waiting that is killing me. I am not the type of person who needs to cool down - I need to work things out immediately because otherwise they eat at me and I become a ball of mush who cries at work - I can't believe I cried at work today.

My friend is being unfair to me. It is completely not fair to not think about my PTSD and try to understand. "A" has done and said horrible things. "A" violated me. End of story. "A" is a serious trigger for my PTSD (thinking about coming in contact with "A" sends me into a full panic - which is what happened. We were both invited to a party - as a way to stop my panic attacks, I asked "A" if he/she would do me a favor and not show up to the party I really wanted to go to. "A" said fine. My friend is still mad. Still really mad, apparently.).

I have been told by three different mental health professionals to avoid "A" and to never be around "A" because I could relapse. The last time I relapsed was this past spring. I nearly checked myself into a mental ward, but instead went to stay with my parents for a week. *Side note - I brought this up to my mother today, and she didn't remember this at all. Thanks for the support, Mom. Like I said this is a side note but not a totally different story. Sort of like me talking about my triggers to her allows her to air her opinion that I should just "grow up and be an adult." Sure Mom, I'll work on growing out of a mental illness that went untreated for many years.

I don't want to relapse - and I feel there are a few special people who are keeping me from such a relapse. But I got the email from my friend this evening and I cried... from 9pm when I got home from work until 11 when I went to bed. And it was what Oprah and I call the "Ugly Cry." The sobbing so hard you can't breathe. Snot flying everywhere and the hyperventilating.

I had to call my brother twice - and luckily the 2nd time he had me watch a completely awesome YouTube video. You're welcome! And Thanks Darin!!!

So that video cured the Ugly Cry, but not the pain. I don't know what to do about the pain. One of my very best friends isn't speaking to me - and she won't even think about my PTSD. Listen to why I did what I did, or try to understand why I can't be around "A."

I want to feel like I'm a good friend - because right now I feel like I can't do anything right. I try so hard to fix things, to apologize when I screw up (which in this case, I did what I had to do - even if it was wrong. I had no choice. I had to stop the panic attacks somehow). I take my friendships very seriously because my friends are so important to me. My family could fall apart at any moment - my brother is going to move away. My mother is prone to uninviting me to things - like today, when I got myself uninvited to Thanksgiving. Maybe she'll cool down and I'll go, but I don't know. My dad gets irritated when I call too often (which is like, a daily occurrence). So I need my friends. And right now, I feel like a horrible friend.

Tonight I sent text messages and emails to my really good friends - the ones keeping me going. The ones I am truly thankful for and blessed to have in my life. I am trying to focus on the positive - like these people, but it's so hard. Why can't I just forget my friend and move on? Because she's in my core group of friends. She is one of the people I thought I could count on for anything. Someone I thought would understand mental illness - and apparently she doesn't understand or doesn't want to understand. And that just hurts so bad.

I want the pain to go away. Today it was pretty unbearable. After I found out Mom said she doesn't want me to come at all for Thanksgiving, I came home early from work and took a nap right up until the time I had to go back to the studio. I needed to curl up and hide from the world... and this was BEFORE I got the fabulous email from my friend. BEFORE the sobbing and the even worse pain.

Most of all, I want my friend back. I want things to go back to normal. I want to hang out with my friends and have a great time laughing and playing games or watching movies or whatever.

I want to feel whole again.

Proud Mental Case

2010-11-06T13:15:00.000-05:00

I just saw a commercial saying 1 in 6 adults has a mental illness. I am proud to be one of them - proud to have gotten treatment with therapy and medication and proud to continue to go to therapy and take my medications.

I recently had an incident where I had what might be best described as a "flare up" of my PTSD, and it caused an argument between me and one of my best friends. And I don't know how to help her understand my PTSD. I don't know how to help any of my friends understand. Some of my friends and some of my family are so unbelievably supportive, and some people just say the strangest, worst things imaginable. My mother says many of those horrible things - but that's a different story.

My PTSD is here to stay. I have triggers - things that make me nervous, uncomfortable and anxious. Some things cause a bigger "flare up" than others. I cringe every time I see a particular make and model of car. There is one sport that I would love to be a fan of, but it makes me uncomfortable. And there are a few people I just can't be around. It's a long story why I can't be around a couple people and it's a longs story why I was in a fight with my friend.

The point is, I want my blog to help people understand mental illness. I want people to understand that I am like everyone else, I just have a few problems with my brain - just like I have problems with my lungs. I'm still a person with feelings, wants, and needs.

Mental illness is harder for me to deal with than my cystic fibrosis. It's entrapment in your own mind. It's illogical and you can't escape it. Sometimes I know I am absolutely crazy and acting unreasonably, but I can't help it. I am doing my best to calm down, or make the flashbacks stop. I am trying to survive until things get better.

Mainly, I want compassion from others and some level of understanding. You may never know what it's like to experience a mental illness personally, but try and understand what your friend/family member/coworker/neighbor/that stranger you judge is going through.

Life in Fragments

2010-11-03T10:51:00.000-05:00

I don't feel I have time to write a complete blog post. So here is one in fragments...

Loving life.
Doing some volunteer secretary work and dance training.
Taught first ballroom dance class - the waltz. Went well. LOVE it. Born to teach. Thought someday I'd teach chem; teaching dance more fun, less work.

Loving Luca - cutie who has stolen my whole heart.
Love being MoH for best friend's wedding... planning things is so much fun!
Doing dishes, laundry, knitting, quilting, knitting, dance, try to write but pretty much fail.
Halloween my favorite. Had great time dancing and partying. Was Queen of Hearts - so great!

Looking into small O2 concentrators so I can travel - nothing going to hold me back. Going to live my life fully and fun.

Thanks fam and friends for making my life wonderful.

The end.

Mr. Big Turns Two

2010-10-14T07:50:00.001-05:00

The Bean, Luca-Bean, Luca-Bug, Buddy, Bug, Mr. Big, LLBean (Little Luca Bean), Mama's Teddy Bear.

Luca. So many nicknames for such a sweet little boy.

Today you are two, Luca-Bug. I never knew that two could feel like such a big number - so old. It's cliche to say, but I remember the day you were born like it was yesterday. It was a cool, cloudy fall day - and I thought it couldn't be more beautiful because I was thrilled you were finally going to be born. There had been lots of waiting - lots of walking around with Mama to try and get you to come into the world, and none of it worked. Not even seeing David Sedaris and laughing that hard could cause Mama to go into full labor. He signed a book for you - and when you're older, I hope you read it and enjoy it as much as I have. It's a funny book.

But back to the story of you. Mama was in labor at the hospital on the 13th of October - which happens to be the birthday of my best friend since kindergarten, Sarah Lynn. I didn't know how I felt about you sharing her birthday - but I know she's been such an angel in my life, it must be a good sign if the 13th was to be your birthday. You were born after midnight that night, so you are a 14th of October baby. And Luca-Bean, the 14th is a great day too. You have become an angel in my life. I can't tell you the number of ways my life has improved since you were born. Mainly, there are more giggles, hugs, kisses, and silliness. And I love being silly.

I can't imagine what the last two years would have been like without you. You

make me laugh harder and with such pure joy. I have taken hundreds of photos of you - I'm afraid I'll forget what you were like at each age. You have grown and changed so fast!

I wanted to do something really special for your birthday, but there is nothing I could do that would come anywhere near being as precious as what your mama did. You can see it at http://kyrachris.com - search for montage, I think. Luca, I cried watching this montage. Many of the photos are ones I took - like the first photo of you where Baba is holding you. And at the park with Mama. And the second to last photo was taken at my One Year IV Free Party. Hopefully you'll never have to know how sick Auntie Carla was or why that party was so important. Hopefully, there will be many more IV Free years!

The song Mama used in the montage was a song I put on the Lullaby CD I made for you - one of 10 CDs I made for your 1st Christmas. I want you to love music. I want you to be passionate about dance. Most of all u want you to be happy. So don't worry about what I want you to be - be whoever you want to be.

Always know that I am here for you, Bean. You can tell me anything. I'll help you through anything.

"I'll love you forever and always because you are my Dear One." - Barbara M. Joosse

Happy 2nd Birthday!!!

Love,
Auntie Carla

Conversations

2010-10-11T11:12:00.000-05:00

I have had a few awesome conversations recently. Have fun!

The mind of a five-year-old:

Maddy: Do you still have your tattoo?
Me: Yep!
Maddy (exasperated): Ah, when is it going to wash off!?!
Me: Never, it's a special forever tattoo, remember?
Maddy: FOREVER? Like, even when you're 69?
Me: Yes Maddy, it'll still be there when I'm 69.

This made me think, "Ew. My tattoo will be all wrinkly and weird when I'm 69. But I will still want it there." And I figure that's the point - if you still want the tattoo when you are wrinkly and it is wrinkly and unrecognizable, then the tattoo was worth it. I'm thinking of a second tattoo - and I can't decide. What I really want is big and complicated. A simple version is just the word "Breathe." I'd really like to have a vine intertwined in the letters and a rose at the top, and on each leaf and/or petals have the first initial of each of my angels - CF and otherwise, possibly living angels too. But that is a lot of people. An INCREDIBLE number of people. I think I'd have to limit it to my angels who are no longer living.

Again, with the five-year-old:

Maddy: What are you doing?
Me: Knitting.
Maddy: What's that?
Me: I use yarn... this string stuff is called yarn, to make things like scarves and sweaters. This is going to be a scarf.
Maddy: Oh.

Two minutes pass...

Maddy: Are you done knitting yet?
Me: No honey, knitting takes a long time.
Maddy: Like a day?
Me: Sometimes, but sometimes many days.
Maddy: I don't like knitting.

Five minutes pass...

Maddy: Are you tired of knitting yet?
Me: No, kiddo, I really like knitting.
Maddy: I don't like knitting.

We were watching a movie, so I thought I'd work on a scarf pattern I've been wanting to try. And while I'm talking about knitting - I took photos of many things I have knit, so hopefully I will be posting those on the craft blog soon. ALSO, I have scrapbook photos, and I should take photos of the shoes I just put sequins on for Halloween. They turned out better than I expected!!!

This is possibly the most random conversation I have ever had - if you can even call it a conversation. It's an online conversation between me and a friend from high school. His parents were family friends, so I knew him when I was really young. This is all that was said:

R: Purple?

Me: Orange?

R: Muave?

Me: Burnt Sienna?

R: Aqua marine.

And then he signed off...

I think that conversation is even more random and unintelligible than most of the conversations I have with my 2-year-old nephew. Luca is more clear with what he wants to talk about.

Last night Luca was here and again he asked, "Where Gammpa Buce?" and "Where Gammpa Buce go?" I love that he loves my dad. I loves that he calls him "Grandpa" because I don't know if I or my brother will ever have kids of our own. It's hard to explain to him that he doesn't live with me - that he just comes to visit a lot.

I love conversations that make me laugh :-)

The new nap

2010-10-01T12:55:00.001-05:00

I'm having a bad day. I'm lonely and having trouble getting over what happened this morning. I don't know if it was a true flashback but i didn't like it.

So I'm going to take a nap. Here's me ready for my nap - O2 and all.

-- Carla's on the go! Post from her iPhone.

Holding Hands

2010-10-01T09:23:00.000-05:00

It's early morning and I'm sitting on my couch knitting. My needles clicking fast - trying to finish one scarf so I can finish another. Suddenly, I burst into tears. Only for a moment do I sob; then the tears just trickle slowly down my face. I know what started the flow of tears, but I'm not sure why they started.

I'm watching last night's episodes of "Grey's Anatomy" and it's heavy on the PTSD issues. A scene where a character falls to the floor in fear and can't move - I remember when that would happen to me - but I don't start crying yet. The fallen character's best friend rushes to her side and holds her hand to pull her out, to calm her fear. Now my sobs start. I wish someone had been there to pull me out - that someone had recognized what was going on.

I remember a best friend calling me ridiculous because of my fear. I had collapsed on the floor in front of her and she told me I was faking it. That made it worse. Sometimes, I thought I was making it happen - but then why couldn't I stop it?

My tears stream because I needed that one person to confide in, one person to tell me it isn't my fault and to tell me I could do something about it.

I went to college still 'crazy' and I still regret things I said and did to people. I needed so much help and it only got much worse before it got any better. When I finally got help, I found a person - a few people, but one person in particular - who gave me the strength to come forward. This person, A, still inspires me today. I believe she went through much worse, but she was able to help me. A says I helped her too, and I hope I was able to be her pulling hand as much as she was mine. Sometimes when I have a bad day or a PTSD nightmare I want to rush to her side, hold her hand and make sure she's really okay.

I have more mature friends now - most likely because I'm older. My very best friend Sarah Lynn and I are much closer than we were in high school - we drifted apart during those four awful years. My more mature friends understand what happened and some even help pull me out when I have a bad day or a relapse.

But I have all these 'what ifs' rolling around in my head. What if Sarah Lynn and I hadn't drifted apart? Could she have been the one to hold my hand and pull me out? I know she could be that person now - but what about then? What if my other friends had been more supportive - or had payed attention? What if my parents had asked why I was so angry, or why I was hurting myself?

I'm crying because of the 'what ifs.' Because maybe if someone had held my hand and pulled me out, I wouldn't still have problems.

The tears are gone. Wiped away. I remember I can't change the past, only the future. And as I return to my knitting and the PTSD-heavy episode of "Grey's," I know I want to surround myself with the friends who would be there for me - and I always want to be the person willing to hold your hand when you need it.

Trading Genes

2010-09-29T10:10:00.000-05:00

Can I trade my Genes in for something? Another set of Genes? A pair of Jeans that fit correctly? I'm getting a little tired of MY Genes (sorry Mom and Dad - you kinda gave me the short end of the stick).

The last straw was tiny in comparison to my cystic fibrosis, my PTSD or my depression, but it was one more thing wrong with me and I broke.

I have dandruff.

I know, I know. Use the special shampoos, use the special drops and it's pretty much gone. But it's one more thing I'm supposed to take care of, and it arrived the same week as the realization I need oxygen at night. And I just couldn't handle it. I had the urge to hit my head with my hairbrush because I had no idea what else to do. Really? Are you serious? I have ONE MORE THING wrong? And this time it's visible?

I don't know what to do. This shouldn't be a big deal, but I feel like the world has crash landed in my lap. I think it's everything combined making me dizzy.

As much as I really wanted the oxygen, I also DIDN'T want it. Because, honestly, who wants to have to have a huge Big Ugly in their dining room so they can breathe at night. And there's a giant oxygen tank, too. And I have to get used to wearing the O2 at night again. And the best way to do that? Tape it to my face for the first few weeks until I'm used to it and won't take it off in my sleep.

I wanted the O2 to work immediately and to stop feeling tired and to get all sorts of things done and conquer the world this week, when in all honesty, I still need naps. Not as many naps - but I need naps. And that's frustrating for me.

And to make everything that much more frustrating, I lost my favorite nurse. Seriously, world? What did I do??? So I have no idea who my new nurse will be, but she/he will not be as cool and fun as Cindy. I love her to death. There is one good thing about Cindy not being my nurse - we can be friends without it being weird now.

Don't get me started on the dating stuff... I just want to give up altogether, but I guess I'll keep up with the online stuff for laughs and giggles.

Today I have to do something to make me smile. Because I need it.

Pumpkins and Apples

2010-09-28T10:19:00.000-05:00

Last Saturday was an amazing day! Chris, Kyra and Luca met my parents and me at an apple farm near my house. My goal for this year was to be with Luca when he got his first pumpkin - and he picked one out! And after we were all exhausted from picking apples and pumpkins, we went for dinner.

One of my favorite things was watching Luca interact with my parents. He calls my dad "Gampa Buce" because 'r's are hard. And of course, my favorite was saying goodbye and hearing him say, "I Love You."

I had so much fun watching him pick apples and eat apples and pick out a pumpkin - it's hard for me to put into words. So here are some photos!

Luca's first bite of an apple he picked :-)

My Cutie in the wagon

Kyra and Luca headed towards the pumpkin patch

Luca pets a goat

BIG PUMPKIN :-)

Luca finds the perfect pumpkin!!! His FIRST pumpkin :-)

Luca inquires about a troll in the store.

I Love You, Bean!!! Let's do this every year!!!

The Return of Big Ugly

2010-09-27T09:16:00.000-05:00

A long time ago - about three years, I wrote about first a home health company bringing Big Ugly to me, and then a couple months later taking him away. Big Ugly was my first oxygen concentrator. Big Ugly was just that - big, ugly, and also really noisy. I hated that thing, but sleeping was better and eventually I needed O2 during the day as well, and then when my PFTs went up, they took Big Ugly away. And I was Happy.

But I was also sleepy... for three years. I have been The Queen of Sleep, She Who Sleeps A Lot, The One Who Is Always Asleep for about three years now - and it's gotten worse over the course of those years. I have switched CF centers, and mentioned my sleepiness when I went to clinic a week ago. They eventually (after several grueling days of knowing in my heart what I needed and not being able to get it right away) decided I need O2 at night.

So Big Ugly returned... but this Big Ugly is less big, less ugly, and definitely less noisy. AND I'm sleeping better!!! I can take a one or two hour nap and feel refreshed. I don't need four hour naps! (At least in the last 2 days... this is Day 3 of BEING AWAKE!)

And now I need to know what to do with all my extra time. There are other reasons I have extra time, which are sad... and I'm going to have to find ways to fill my time. For now, I am going to make myself a list to remind me how to pass the time.

1. I will walk 3 times per week - at least! When it is nice out, I will walk outside. When it is not, I can walk on the treadmill or play the Wii. Hopefully this will help my lungs and with weight loss.

2. I will finish my quilt. I will finish THE DRESS OF DOOM that I'm knitting, and I will finish the scarf I'm working on. Then I will knit other projects. -most of this knitting will be done while watching TV/Movies-

3. Blogapalooza! I will blog lots.

4. I will write in my journal and my Letters to Luca journal.

5. I will host movie nights on Tuesdays... well Mondays or Tuesdays??? I don't know - this is a work in progress.

That's all for now - except my doctor wants me to find somewhere to volunteer or something to do. Any ideas?

Diary of a Trip Home

2010-09-13T12:01:00.000-05:00

Today I am on my way home. I'm going to update with thoughts as I go.

•SkyCabs are awesome. And sooo nice! Checked in so easily! And now on my way to security!!!

•Through security at 10:10. My flight is at noon. I thought this would take much longer!!! Next step - getting to the gate!

•Got to the gate, asked about pre-boarding. Woman was short and curt with me, and then she was just mean. She questioned the number of items I am carrying on - one is my meds. I can't check that and I won't. No one has ever hassled me before. They are usually very nice to me because I'm a special needs flyer! She was telling me I had time to consolidate and I panicked. First not fun event of the day.

•I want to see if my flight is overbooked and see if I can get on the waiting list to take a later flight. I love me some travel vouchers!

•I checked on the voucher thing, and the flight isn't full. Sad Panda. And I'm probably going to miss my flight in Memphis. Boo.

•Time to read, write and maybe knit a little.

I'll update again later!!!

-- Carla's on the go! Post from her iPhone.

Rants and Revelations

2010-09-07T11:59:00.000-05:00

On Sunday my friends and I went to Bumbershoot, a music and arts festival in Seattle. There was one show I really wanted to see - the Axis Dance Company. They are a dance company based out of the Bay Area, and they have people with physical disabilities dancing with able-bodied people. It was amazing to see. I figured it would be pretty amazing, but I had no idea it would touch me so deeply.

But first, my rant. The last thing we saw at Bumbershoot was a comedy show. Since I was in the wheelchair we all sat towards the back at the special wheelchair section, even though I got out to sit in a regular seat. The first two comedians were great - I laughed and had a good time. It was the third comedian who grated me the wrong way - so much so I need to rant about it in a blog post.

If I remember correctly, he started out funny. Maybe he didn't, I don't know. Either way, shortly into his performance he started talking about airport security and how it really bugs him when someone in a wheelchair can get out to go through security. He went on to make more jokes about the wheelchair and how anyone can use one if they want. I was so mad I nearly cried. I wanted to heckle him, but he had already turned the audience laughing at the first person who had heckled him.

He made me doubt myself. I don't often care what other people think of me - especially strangers. I don't care if they judge me for getting on the plane first or riding in a wheelchair and then standing up to shop. Have you ever noticed how hard it would be to see things or reach things while you're in a wheelchair? I have.

He made me doubt myself. I started to think about whether or not I really need the wheelchair now that I'm doing better, and I started to wonder if my using a wheelchair is an injustice to all other wheelchair users - people who can't stand up to shop or walk to their seat on the airplane. He made me feel little and unworthy. He made me feel like less than a person. And then as I sat there I thought about how the people who can't get out of their wheelchairs would feel. I just kept getting more and more angry. And I didn't find the rest of his show funny either - probably because the first part made me so unbelievably angry.

One reason it made me feel so horrible was because what I experienced in the morning.

The Axis Dance Company made me feel like I could do anything. When I think back on it I want to feel that again. As I watched them dance I realized that I can do whatever I want. With my dancing- I can adjust to my level. I will salsa at my pace and I think everyone should accommodate me. I don't know if I can get a large group of salsa dancers to do that, but maybe I can. I thought I should start a ballroom dance group for people with disabilities or older people who want to dance at a slower pace. I have a few dance instructors in mind who might be willing to help me with that. I'm thinking of leaving the position of secretary - or at least delegating the work to someone else so I can work on my life goals more.

The dance made me feel like getting my place completely organized is within reach, as is finishing my book. I want to advocate for patients, or rather teach them to advocate for themselves - and I have a few friends I know who can help me get started with that.

So all day I was on a high from that performance. I felt powerful, strong, and self-reliant - despite the fact that I was relying heavily on my friends to push my wheelchair. But there were several times I got out to shop for Christmas gifts and a couple things for myself.

And then the comedian crushed my soul. But after a long talk with my mom, I have realized the comedian was uneducated and discriminating. He is not the type of person I would want to be around. And maybe my friends laughed at his jokes, but that doesn't mean they don't care about me or want to understand. They can't understand. Living this way can be incredibly frustrating at times - like yesterday when I had to sleep all day - but it can be incredibly rewarding too.

This is just another example of how I know my CF is a gift. I am able to see the world through the eyes of others, and have compassion for all types of people. Even the people who makes jokes at the expense of the disabled - I have compassion for him because he has no idea what he is really making fun of.

And after I think about the comedian and go back to the Axis Dance Company, I feel empowered again. I want to work towards helping more people. I want to dance as much as I can. I want to live my life to the absolute fullest. And no one should or can make me feel otherwise!

Day 3 in Seattle

2010-09-06T14:40:00.001-05:00

Today is my third day in Seattle. And yep, that's about right - I can go for 3 days and then rest for at least one.

Yesterday I had some revelations, and was also very upset by something, but I don't have time to Rant and Reveal right now. I need a nap. I'm feeling very depressed because I need to rest and very sorry for myself because I think I was hoping this wouldn't happen. I was hoping to have lots of energy and not have to rest and nap like I do at home. But I'm the same person here as i am at home, so I can get through it.

-- Carla's on the go! Post from her iPhone.

Waiting in an Airport

2010-09-04T08:45:00.001-05:00

This is me during a really long layover at MSP. There's not much to say about it except I was bored, missed flying with someone to talk to, and oh yeah, I almost missed my flight because I was a dufus sitting alone at an empty gate one hour before the flight. So I asked someone, and the gate had changed.

So I didn't really nearly miss the flight (if I had to walk I would have, but at MSP they have golf carts that go around for the disabled). I nearly missed pre-boarding. I like my extra time to walk down the jet way. I like not being pushed by others with their rolling suitcases. And I like securing spots in the overhead bins for my carry-on and my medical bag. And then I get what I'll need for the flight and put it under the seat with my purse. So i almost missed that, but I didn't.

-- Carla's on the go! Post from her iPhone.

Hotel Royalty

2010-09-04T08:35:00.000-05:00

I feel like a princess. I'm in Seattle. I am staying with friends for 10 days (probably way past my welcome! Didn't someone once say 'fish and house guests start to stink after three days'?), and there are other friends staying here too for various lengths of time. At most there will be seven people here in this two bedroom, one bathroom home. Thank goodness for the basement!

So I feel like a princess - because I am staying in the 2nd bedroom the whole time. My hosts are worried there might be some creepy mold hidden in the basement, so they won't let me stay there. I'm very happy.

My hostess, E, put enough blankets on the bed to suffocate me, just so I'd be warm enough.

And my hosts - two of the best friends I have. And the four other people joining us? Also amazing friends. These are friends willing to do my chest PT and push me in a wheelchair around San Francisco. Have you heard about the hills there? Because they are huge. And Seattle? Also big hills. And these friends are willing to push me around again so I can keep up with them and see as much as possible.

I can't wait for the fun to begin - and maybe that's why my body woke me at 6am. No matter what time zone, I wake up at 6am. Big pain because I came in on a late flight and didn't get to bed until after two. Hopefully after writing a nice, long blog entry I'll sleep like a baby for a couple more hours. I don't want to wake my hosts at this ridiculous hour so I can eat and then go right back to bed! Because that's what I have to do at home when I stay up late - nap during the day.

I can't wait to spend 10 glorious days with some of my best friends in the world E, J, M, P, K, and Gancl. Don't worry, that's her nickname.

But for right this moment I need to calm my excitement and drift back to sleep at Hotel Royalty - where I really feel like a princess.

-- Carla's on the go! Post from her iPhone.

Off With Their Heads!

2010-09-01T10:15:00.000-05:00

This is the photo that got me in sooo much trouble with that serial killer. Goodbye Sweet World! YES I blacked out the licesnse plate. Because I'm a MS Paint WIZ!

At least it's a funny photo...

Making the Serial Killers Mad

2010-09-01T09:48:00.000-05:00

Oh what a day! And it's only 9:20am.

I woke up at 6am - a little earlier than I needed to, but I like to get things done in the morning before I go to work. I was looking through a basket where I keep miscellaneous hostess gifts, when suddenly I had no more light. I was a dufus and couldn't figure out who turned the light out on me... and then it hit me: The Power Is Out. Why was this a big deal? Well one, it's raining/cloudy, so I get no sun to make my house have some light. I can't have toast for breakfast. I can't use my microwave. And worst of all, I don't have enough light in the bathroom to take a shower or do my makeup. So I'm a grungy mess with a bandana in my hair... that part will come later.

So during the time I usually watch a little TV or blog or read stuff on the internet, I am without power and knitting by candlelight. I got one row done in 20 minutes. The Dress of Doom is going to take FOREVER. See my craft blog for more on the DRESS OF DOOM.

So now I'm driving to work. I end up behind a car with a plastic head in the back window - seriously. It looks like it could belong to a manequin or a crash test dummy, and it's definitely not a babydoll. It's just a head rolling around in the back window. I find this incredibly amusing, so at a stop light I pull out my camera and snap a few photos. Then as I'm driving along I realize that the guy in front of me is taking photos of something behind him. Hmmm. I realize it's me, so I wave - grungy bandana and all. Then he's sticking his arm out the window taking photos of me... and then he turns right and completely stops his car as I drive by to keep taking photos. HE STOPPED IN TRAFFIC TO KEEP TAKING PHOTOS OF ME. And because I'm related to my mother and I hear her jump to this conclusion all the time, my first thought is, "SERIAL KILLER!" Oh my god, I just pissed off a serial killer.

I panic.

And then I calm down a little and assume it's NOT a serial killer. But what the hell? Is it an undercover cop? With a head rolling around in the back window and a little blue camera? And no laptop or uniform? No. So, it's just a creep... Did I do something wrong? I just took a couple photos - and for all he knows I could have been taking photos of the sky. Duh. Is that illegal? Maybe not the best idea while driving, but it was at a stoplight. So, he's just a creep... a creep with my face and my license plate. Is he going to report me to the cops? What will they do? I can tell them he stopped traffic to keep taking photos of me and was taking photos of the car behind him while driving. That's definitely worse than the few photos I took. Is he going to track down where I live and follow me for the rest of my life?
Is he a serial killer? Oh my god, I pissed off a serial killer.

I panicked just a little. All before 8am.

THAT made my morning interesting. Too interesting. I have his license plate just like he has mine... But if he's a serial killer, I don't think that's going to help me much. Might help the police though. So I'll print off a photo and put it somewhere...

I arrived at work a little late because of traffic, and took the baby on almost an hour walk - which is perfect for me because I need the exercise. Perfect for the baby because it entertains him. I love taking photos of things on our walk because I love to take photos, but this morning I thought twice about it because you never know when you'll piss off a serial killer.

One Year Free

2010-08-31T21:01:00.000-05:00

I'm officially 100% IV Free for One Year. To celebrate, my parents and I threw a party on Saturday. It was wonderful - almost all my favorite people were there, and everyone made it so special. It was better than any birthday party I've ever had because it had so much more meaning to me.

It was like giving me my life back.

A friend of mine told me tonight, "You really know how to live, girl...". And THAT made my night because that is what I want to be known for and eventually remembered for - knowing how to live. Also, knowing how to love.

This post is dedicated to everyone who helped me get here - ONE YEAR IV FREE.

To Mom and Dad because they do everything for me. They always have. They fight just as hard as I do, if not harder. I love them with all my heart. My one wish has always been for them to worry less, and hopefully now they can worry a little less.

To My Brother for being my little JerkFace. You understand me and my CF because you've lived it too. I'm sorry you had to - you got healthy genes and had to live alongside CF anyways. You are my strength when other people aren't so there for me. Thank you for getting me here. I know I called you crying almost daily for a long time this spring - and I'm sorry, but you were wonderful. The perfect panic attack cure. I'm so proud of the human you are becoming. I love you, Dar-Dar.

To My Bonus Siblings and My Bonus Nephew: I could write pages about all you have done for me. Chris, Kyra, Luca and Sarah Lynn - my life would be empty without you. You make me smile daily in some way and you're right there to live my life with me. Here's to the family you CAN pick!

To My Friends: Thanks for loving me. I love you, too. Let's keep living life!!!

To Dr. Green: You said it was very unlikely that I would ever make it 6 months, let alone a year, without IV antibiotics, and here I am. I was 18 when you told me that, and now I'm 24. I think we both know we didn't know if I would make it to 24 without needing a transplant... and I think we're both very glad I don't need one right now. Thank you for being the best Pediatric Pulmonologist ever. You treated me with love and compassion for over 17 years and I've been searching for that kind of care ever since. I think I've finally found it at another CF care center. Thank you for being a role model for the kind of treatment and care I deserve. And I made it a year!!!

To the hospital staff and doctors: Here is one line thanking you all.

I did it, guys!!! I'm ONE YEAR FREE!

CF as a Gift

2010-08-31T12:00:00.000-05:00

Cystic Fibrosis is a gift. What it has given me is possibly more important than anything I could have learned if I were healthy.

I have learned to appreciate life. I appreciate and love the people around me as much as I can. I want to experience things and do as much as I possibly can.

CF has given me the opportunity to grab life by the horns and make it mine. It has taken me a long time to figure out what way I want to steer the horns of life, but I think I'm starting to figure it out.

I want to help people. I've always wanted to help people. When I was little I wanted to be a pediatric pulmonologist so I could help other children with cystic fibrosis. I've always wanted to help other CFers, but recently I've realized I just want to help people in general.

I want to be an advocate. I want to help people navigate the craziness that is the medical world. Teach them how to self advocate, and get through the insurance hoops. I want to help people get to a therapist and/or a psychiatrist because I've seem my share and know how to find a good one. I can help people organize their medications and figure out a way to remember how to take them.

I want to spend time with children and see the world through their eyes. I want to help mold them into better people. I want to share their joy in new things and comfort them when they are sad.

Most of all, I want to live and feel like I'm skipping joyfully through life. And right now I have that part down.

-- Carla's on the go! Post from her iPhone.

Dating Dilemma

2010-08-26T06:50:00.000-05:00

Here's an update on the Dating Situation.

Last night I went on a very good first date! Yay me! I didn't know such a thing existed. Usually they are okay, or awkward and then I dump the guy by the end of the week. I don't think that's going to happen this time... but we'll see. It hasn't been a week yet.

My dilemma is this: there are too many guys. Right? Who ever thought this would happen to ME? I'm the sick girl who can't get a date - let's mend that - I'm the sick girl who can't get a SANE date. There was that guy who said we could have kids and the surrogate would be his 2nd wife and she'd live in a different wing of the house and help me raise all our children. He was a winner. The kid with no job living in his mother's house.

So too many guys. I have three other guys who want to meet me. I want to stop communicating with guys just because this is getting overwhelming. I'm supposed to be rejected again and again because of my health and post it on my blog - that's what I DO. What if I have to choose between more than one nice guy? I don't know how to do that!

On the up side, I did have a good first date!

Reasons for Rejection, II

2010-08-22T12:48:00.001-05:00

Here is a reason I rejected someone.

The question is "What are you most passionate about?"
His answer:

"I love sports but I am probable most passioniate about helping people, thats a big reason why I want to be a police officer. Probable sounds a little too good to be true but it is."

Your spelling skills leave a little to be desired, PROBABLY.

Reasons for Rejection

2010-08-20T08:01:00.000-05:00

So I'm going to post funny profiles, awesome reasons for rejection and other crazy things that happen during my eHarmony experience.

Here is my first online "we can't date because" rejection:

"I'm having fun emailing you too... but i must say, i'm really bummed about the anti-kitty thing... Cats are such a huge part of who i am, and my identity, and there's no way i could ever be without them running freely around. That's not exactly a good thing when they're kinda life-threatening to you :(

Beyond that.... there's no easy way of saying it, but it frightens me to enter into a potentially serious relationship with someone having a serious illness. For the last almost 30 years i've grown up watching my mother take care of my increasingly disabled father. I won't get into the details - but... i know its not something i could do."

The second part I understand... and that's fine with me. I wouldn't want to be with a guy who knows he couldn't handle me being sick-ish ;-)

It's the FIRST part that cracks me up. The kitty part - I love the way it's worded and that kitties are part of who he is. Hope it makes you laugh as much as it made me laugh.

Almost There!

2010-08-18T23:37:00.000-05:00

In less than two weeks it will be ONE YEAR since I have had any IV antibiotics. Sometimes, I still can't get my mind around this. Part of me feels so free, and another part of me feels really tied down - waiting for the bottom to drop out. Waiting until I'm sick again.

And I know that is not how I want to live my life. I am so grateful for everything I have going for me right now. I want to live my life to the fullest for every CFer who is still in a hospital bed somewhere. I want to fight for research and CF awareness. I want people to know how isolating this disease is and how much we need to talk to each other to get through this.

But I still feel guilty sometimes. What did I do to deserve this good health? Why did people I care about leave this earth? Why wasn't it me? Do I have a purpose in still being here? Am I as inspirational as those we have lost? I hope so.

I feel blessed because I am healthy. I feel sad because I'm the only one. I wish I could fix others and help myself at the same time - but I guess it doesn't work that way.

My Parade!

2010-08-09T22:37:00.000-05:00

Dear Mom,

This is my parade. It's my life, and I'm going to live it the way I want to. It doesn't mean I don't love or need you. It means I want to be an adult, because I'm 24.

I found a little song that fits this pretty well. It goes like this:

Don't tell me not to live,
Just sit and putter,
Life's candy and the sun's
A ball of butter.
Don't bring around a cloud
To rain on my parade!
Don't tell me not to fly--
I've simply got to.
If someone takes a spill,
It's me and not you.
Who told you you're allowed
To rain on my parade!
I'll march my band out,
I'll beat my drum,
And if I'm fanned out,
Your turn at bat, sir.
At least I didn't fake it.
Hat, sir, I guess I didn't make it!
But whether I'm the rose
Of sheer perfection,
Or freckle on the nose
Of life's complexion,
The cinder or the shiny apple of its eye,
I gotta fly once,
I gotta try once,
Only can die once, right, sir?
Ooh, life is juicy,
Juicy, and you see
I gotta have my bite, sir!
Get ready for me, love,
cause I'm a commer,
I simply gotta march,
My heart's a drummer.
Don't bring around a cloud
To rain on my parade!

I'm gonna live and live now,
Get what I want--I know how,
One roll for the whole show bang,
One throw, that bell will go clang,
Eye on the target and wham
One shot, one gun shot, and BAM
Hey, Mister Armstein,
Here I am!
I'll march my band out,
I will beat my drum,
And if I'm fanned out,
Your turn at bat, sir,
At least I didn't fake it.
Hat, sir, I guess I didn't make it.
Get ready for me, love,
'cause I'm a commer,
I simply gotta march,
My heart's a drummer.
Nobody, no, nobody
Is gonna rain on my parade!

Love,
Carla

A Few Things

2010-07-26T11:06:00.000-05:00

This is a post where I write about a few things. Goals, recent developments, etc.

First, I have been doing the 365project since around Memorial Day - all the photos are on my phone, but when I updated the software, I lost all the 365 data- like what days the photos went with and what I said about them. That's frustrating. So I'm starting again - and trying to reconstruct the last couple months. This time I am backing it up on 365project.org. Hopefully this will be good. Once I get it all set up, I will post the link to where you can see the lame photos I take with my iPhone :-)

I'm hoping to post some photos from my digital camera too, since it takes much better photos.

Next, I have some goals:

Clean the house
Finish my quilt
Finish the two scrapbooks

That's about it for now, but that is what I want to do during August - and August is shaping up to be a VERY busy month!!! I'll have to schedule days where I sleep all day, so I don't know when I'm going to schedule in all the cleaning I need to do!!!

That's about it for this post.

~Carla

THE Post.

2010-07-13T10:23:00.000-05:00

This is it. The post I've been wanting to put up since November. This is The Mannitol Post. It's a long story.

Last summer I decided I would participate in two different clinical trials - one for inhaled powdered Cipro, and the other for inhaled powdered Mannitol. I did the Cipro study first. It was a month long and I had to show up for PFTs and check-ups every week, but it was only a month. No. Big. Deal. The next study was going to be more challenging and taxing. Remember, I had agreed to babysit more regularly starting in August, and I was loving the babysitting. I even did some babysitting where I had to take my afternoon IV dose with me. That was a rough week. Actually a rough two weeks. I did IVs for the first time all by myself - with no help from anyone. I did the IVs at the end of the Cipro study, so I had to wait to start the Mannitol study.

The Mannitol Study. Let me start off by explaining what Mannitol is. It is FDA approved for other uses. They use it IV to reduce brain swelling. Most chewing gum is coated in powdered Mannitol. It is not illegal to own Mannitol (I found food-grade Mannitol on the internet and they sell it by the pound). This study is to approve a different use for Mannitol. In this study, powdered Mannitol is inhaled into the lungs via capsules put into an inhaler. The study was a year-long commitment. In the first 6 months you would either have the drug or a placebo. The second 6 months is what they call "open label," meaning everyone has the drug.

I didn't think this would be a huge commitment. Inhale 10 capsules twice a day for a year. All for the sake of science and my health. Note the second part of that sentence. I participate in studies for the selfish reason of benefiting my own health in addition to doing it for science and to help other patients.

When I got into the study, I realized it was going to be a MUCH bigger commitment than I originally thought. Mainly because of the JOURNAL. This was going to be the JOURNAL FROM HELL. In all honesty, I was going to be lazy about it. They wanted you to record ALL symptoms - colds, sinus stuff, sprained ankles, etc. I really wanted to say, "Stubbing my toe at least once a week is in NO WAY related to your study." But I agreed. Then I was told to record all doctors visits, all nurse visits (remember I have a daily nurse who does manual chest PT for me), and every time you pick up medication at the pharmacy. I thought this was ridiculous. I try to limit my pharmacy trips to once a week - but it's sometimes more. I honestly thought I was going to spend most of my free time filling out that journal and I would never again blog or write in my personal journal. I wasn't enthusiastic about the JOURNAL FROM HELL, but I agreed.

For the study, they have you do a tolerance test to see if you can handle the drug. It involved lots of PFTs and taking the medication. One half hour after I took the medication my PFTs (lung function tests) had improved more than 10%. TEN PERCENT. I hadn't seen numbers that high in years. It was unbelievable. So I agreed to do the first 6 months not knowing whether or not I had the drug just so I could get to the second 6 months to have the drug!

A week after the tolerance test I was double-blinded and given my stuff. Again, PFTs were done with your substance, and then for the 30 minutes after the test I had to collect all the sputum I coughed up. Both times I did PFTs - with the tolerance test and the first dose of 'Mannitol' - I coughed really hard. I also coughed up tons of gunk. The second time I collected all this gunk and it filled a sputum cup half full. Completely gross. I wish I had taken photos so I could show you the complete gross-ness of this sputum cup. I knew I had the drug because of the way I coughed and because my lung functions again went up more than 10% in 30 minutes. I knew I was holding onto a miracle drug. I just didn't know how much trouble it would cause me.

I did exactly three doses of Mannitol as I was supposed to - 10 capsules twice a day. I woke at 6am on Saturday with a cough I couldn't get rid of. This was the hardest I had ever coughed (saying a lot for a CFer... I pretty much cough for a living!). My lungs ached and the muscles in my chest and abs were quivering from working so hard. I tried everything to sooth the cough because I wanted so badly to continue with the study. Cough drops. Eating. Drinking water. Sitting in a steamed bathroom. Doing all at the same time. And nothing worked. After six hours I finally gave in and took cough syrup with codeine in it, which finally soothed my cough. But I knew I couldn't take the Mannitol the way I had been instructed to.

I couldn't believe the cough. It's hard for me to put into words how horrible and how strong the coughing was. My upstairs neighbor came down several times and knocked on my door... and I was coughing too hard to answer. Finally I checked the door and there was a small blue Post-It that read, "Please turn down your sub woofers. It's shaking our walls." I had nothing playing because I was trying to calm my cough. My cough was shaking the walls in a concrete building. Lovely.

Since I couldn't tolerate the drug the way I was supposed to take it I had to drop out of the study - which means you need to return the un-used drug. But I read through the papers I had signed, and no where did it say I was required to return the medication. I bet they've revised study documents now, but nothing I signed said I had to give it back - so I didn't. Actually, I waited a month or two to even tell them I was dropping out of the study. Because I needed this drug. I needed to make it work for me. I couldn't give up the lung function percentage that it was giving me. My lungs will never be completely at full capacity because I have scarring, but I want them to be the best they can be.

Before I told them I was dropping out of the study I played around with dosing. First, fewer capsules twice a day. That was too much - the horrible cough continued. Then once a day, every other day, once a week, and finally I settled on 6-8 capsules once every two weeks. That's a big difference from 10 capsules twice a day. But my lung functions maintained. And even more importantly - I FELT AWESOME.

I told my study coordinator I was dropping out of the study and I refused to return the medication. She was furious with me. We had several long circular conversations where she tried to convince me I needed to return the medication, and I tried to convince her I needed to keep it. I told her I'm fighting for my health - for my life. It was time for another hospitalization, and I wasn't even close to needing IVs yet. At one point she said, "I understand..." and I interrupted with, "No. You. Don't. When was the last time you had to spend two weeks in the hospital for IV antibiotics that damage your kidneys, liver, and cause hearing loss? I am fighting for my life - the right to have a more normal life, and if this medication keeps me out of the hospital for even 6 months at a time, I am going to keep doing what I'm doing. Because 6 months without IVs is better than having to do them every 3 months."

After that, she stopped calling. They sent a certified letter, which I refused. I knew that was all the action they could take against me.

I knew I was on my own. I felt black-listed. I knew my research coordinator was talking about me to other research coordinators (I have a friend who works in the department and overheard these conversations). At one point she said, "Well, you know, her father is a psychiatrist and she's on a lot of psych meds." THAT pissed me off. I understand that I complicated her job and that I was a pain in the ass - but to call me crazy, and to bring my father into it is INSANE. The fact that my father is a psychiatrist has NOTHING to do with the fact that I have PTSD, Depression and Anxiety. See my little blogging profile - those aren't related to my CF. Anyways, that pretty much ended any desire I had to explain myself to her - or to have anything to do with that CF clinic. I just assume that the doctor who was in charge of the study (who is/was my CF doc in my town), isn't my biggest fan.

So now the months are flying by - I reach 6 months without IVs... 7, 8, 9... and I finally decide I need to see a CF doc and finally see if my lungs are maintaining number-wise. I was healthy - I AM healthy, but I wanted the numbers to prove it. So I make an appointment at a clinic 2 hours away, and yes, my numbers are maintaining.

The same week I went to the far away clinic, I went to a CF Adult Group meeting. There a couple people criticized me. I was told I could go to jail, I might as well have a ton of pot in my house, that I'm selfish to 'ruin' the study. And at first I cried. I even wrote about it here - why I'm scared to write about the Mannitol. And now none of that matters to me. The opinion of those CFers can't matter to me - because I am taking care of myself the best I know how.

I am living my life, I'm loving my life, and I don't care what I had to do to get here. I had to do what I had to do. I found something that works for me, and I'll be damned if I'm going to give it up because the FDA says I should.

It's 11 months since I started my last round of IVs. And now I feel it's safe to plan my One Year Sans IVs party. I'm celebrating my life, the people I love, and the amazing drug that helped me beyond my imagination.

Here's to Mannitol - my wonder drug.

Closet and Bedroom Photos

2010-07-12T08:44:00.000-05:00

This is my clean closet and bedroom!!!

-- Carla's on the go! Posted from her iPhone.

Clean Closet

2010-07-11T14:07:00.000-05:00

My closet is CLEAN. C. L. E. A. N. Can you believe it? ALL of my clothes (minus the ones that need washing...) have a home. That's right, there are NO clothes on the floor. They are all either in a drawer or hanging in my new beautiful closet.

Okay, yes, the dining room is slightly more cluttered now, but not bad. I have a bin of shoes and a huge bag of clothes to donate. I have piles of clothes for my bonus siblings Kyra and Sarah.

And I was so excited to call my parents and tell them about my new closet and how my clothes finally have a home and I can keep it this way... and my mother says, "Well, we'll see." Because she has absolutely no faith in me whatsoever. None.

Honestly, I'm not making this up - if there's something that needs doing, my mother doesn't believe I can do it - BECAUSE I'M NEVER GOOD ENOUGH for her.

So to give her the giant finger, I'm doing a million loads of laundry so everything that can be washed will be clean, and then PUT AWAY. And I babysit this week, so I'm already doing more than my mom does in a week.

She can bite me. And accomplishing all this will make me happy.

A big THANK YOU to my bonus brother Chasie - you are the best. And even though you made fun of my stuff the whole time, you got it all done. I love you. My closet is functional. (Photos to come).

Bonus Siblings

2010-07-06T23:16:00.000-05:00

The 4th of July weekend was jam-packed for me. I had such a great time with everyone and doing so much stuff! It was party, party, party and hanging out with people I hadn't seen in a long time. It was fabulous!

I have finally come up with a term I really like for the really special people in my life - the people who are like brothers and sisters to me, but who aren't technically blood-related. From now on they are my Bonus Siblings. These are people I've grown up with, friends since I was very young, and people I'm so close to we may as well be related.

I'm so lucky to have these wonderful people in my life. Here's to my Bonus Siblings - Emily, Margaret, Sarah, Chris, Kyra, and Chase. I love you guys!!!

Dating, or Lack Of Dating.

2010-07-06T11:20:00.000-05:00

Here is a great reason I'm not having success with the online dating thing. Here is one man's profile. It's so absurd I just had to post it. This man is 46 and lives in my state - but 46 is too old for me. He contacted me, and I pretty much just ignored the email. Here is why:

Tall, dark and handsome I am told by my kids! REALLY! Find out for yourself. I love to be spontaneous, daring and wild when the time permits. Honesty, truthful, faithfulness & good communication are the core for any relationship would you not agree? Someone that would compliment me as I would to her. My kids live with me full time. This is not the norm out there, yes I know! I would never change it for the world. They are my life! LQQKING for a lady to share my life with. They are getting older now and pretty much take care of them selves unless they need money! LOL! My almost 17 year old has three jobs and gets great grades. He loves his PS3 and Rock Band. Lets get to know each other then? I love the outdoors ie// sailing, roller blading, hiking, jet skiing (wave runner), fine wines, cooking, boating, fireplaces inside and outside, and most of all spending time with my family, kids and friends. We have a dog (St. Benard-Spinilli) & a cat. I simply love my job. I own my own company (two actually) and it allows me the freedom and flexibility to spend the maximum amount of time with my kids. I was born and grew up on the North Shore of Chicago. Yes, I am a flat lander at heart! My parents are both from Eroupe. To a Martini bar where the music is loud enough to hear and soft enough to talk to each other. A walk along the lake shore or out to the lighthouse up in Port Washington. I enjoy attending festivals, live bands, concerts, etc. Lets meet and see. I LOVE to cook Cajun, Thai foods myself as well as many other things. I have been told that I am a good cook! My best critics are my kids and they love my cooking. Not bad hey! I enjoy Boston Legal, CSI, Grey's Anatomy type of shows. I love to get up on Sundays and go to a coffee shop alone or with friends. I enjoy reading the New York Times a lot as well. Shall we meet there? !? !

Now, Bless Your Heart if you read that whole thing. It's like his brain exploded on the keyboard and that is what came out. Aaaand he comes with kids! The youngest being 17! I am in my early 20s. Let's say it together "AWKWARD."

Life, or The Post Before THE POST

2010-07-02T09:42:00.000-05:00

I'm deciding what I want in life. I am figuring out what is most important in life. I am figuring out how to maintain my current good health and trying to decide what to do with it - with all the extra energy and time.

I know, this could be a big, important post. Or it could be a short little one with some goals. I'm leaning towards the 2nd option because I need a nap, but I've got some very important, mind-blowing ideas rattling in my head and I want to get them out there.

I want to keep babysitting.
I want to be a better dancer.
I want to enjoy my life and have plenty of time for family and friends.
I want to have time for my mindless TV and crafts.
I want to be out there speaking about cystic fibrosis. I want to speak at CF Foundation events.

It's that last goal I want to talk about today. I am different. I'm different from many CF patients. I am compliant to a point - if it's not working for me, I won't do it. I do what works. I work hard to find what works and then I stick with it. I work hard to figure out how to be as healthy as possible with all the added things I have on top of CF, and then I work hard to maintain that health. If it means not doing everything a doctor or a nurse tells me I should be doing, that's okay with me.

I know my body best - I've had CF for almost 24 years now. I know what's going on inside me and what is working. A doctor who has only known me a few years doesn't know my body as well as I do. Currently I go to clinic and see a CF doc who has known me for a year. I love my new doc because she listens to me - and that is most important in a doctor. They need to listen to you and get to know you as a person. I miss my peds doc who I saw for 17 years. He knew me - we'd probably fight now because I'm so head-strong, but I miss him. The point is, after I transitioned to adult CF clinic, I tried doctor after doctor to find one who would listen to me. I ended up driving more than an hour to a different clinic to find a doctor who fits me and who will work with me. I found what I needed.

That makes me different. It probably makes me someone the CF Foundation wouldn't want speaking at events. I don't do hours of treatments each day - I do a 1/2 hour. I take all my pills. And every other week I do Mannitol (yes, I'm still working on THAT post). This is what is keeping me healthy - this, and my active lifestyle. And by active I mean I babysit, I dance occasionally, and I work on my crafts and keep up with my life. I hang out with friends and I do chores. Many of these things I couldn't do a year ago. One year ago I was spending my time waiting to do IVs, doing IVs, and then waiting to do IVs.

Which brings me to another point.

Happiness. I found it.

I am so happy I barely understand it. I also have a hard time understanding why all the 'healthy' people aren't as happy as I am. It's because I never expected to be healthy. I didn't even dream about one day being this healthy because in my mind it was an impossible. I knew I was doing round after round after round of IVs, and going to slowly decline until I was at the point where I needed to be evaluated for a lung transplant. That was the reality I had accepted. And I was determined to make that reality fun and happy - and I did. I traveled to Europe, San Fransisco, and New Orleans. I made sure I saw my friends as often as possible because I knew I wouldn't always have the energy to go somewhere and hang out. With what little energy I had left I would slowly work on craft projects. And that made me happy.

So when I found Mannitol (STORY TO COME SOON!), I couldn't believe how healthy I felt. I didn't think it would last. And now that it's lasting and looks like it might last a long time, I'm ridiculously happy with everything I do. Dancing more makes me giggle and when I babysit I can't stop smiling when I chase after the kids. Even crying kids make me happy because I have the energy to deal with them. I love reading books to the kids because I have the breath to say long sentences without pausing. And it makes me laugh.

I have the energy to be the silly person I am inside. I am the social person I wanted to be when I was sick. I can do the laundry - and it makes me so happy I call my mom just so I can cheer and have someone cheer with me.

And this is why I feel I am a happier person than most people I encounter. I am living a life I never dreamed of having - and it's better than any dream I've ever had. Now I'm dreaming about my future and what it might hold - and my dreams aren't just about a short wait for transplant and few complications after. I used to dream that I would wake up from transplant with almost no complications and be walking the same day - THAT was my ultimate dream. Now my ultimate dreams include finishing college, having hobbies and a career, and dare I mention it - a family.

A. FAMILY. Like, with kids living in my house. I haven't dreamed about having children since I was little. Since before I knew how hard a pregnancy could be on a body and before I knew how hard it is for CF women to conceive. Don't get me wrong - I'm not dreaming of biological children. I'm dreaming of adopted children and a full-time nanny to help me because I still don't have the energy of a 'normal' person and I need more sleep than average. So it's a little bit different dream - but it exists in the back of my mind, and that's a little scary.

So right now I'm sticking to dreaming for the next couple months. I'm dreaming of a completed quilt, an organized house, a fun party to celebrate one year of amazing health, and a successful trip to Seattle in September. And that's more than I could dream about last summer - which makes me so happy.

Why Not

2010-06-25T18:48:00.001-05:00

I haven't posted about the Magical Drug of Magic-ness because I am a chicken.

Last night I went to my CF support group and I got some backlash from a couple people. I was called selfish and a criminal. I ended up crying. One person was generally concerned for my well-being and making sure I'm still going to a doctor. This whole thing made me frustrated. I was hoping to get applause because I'm doing so well.

This is why I haven't yet written here about the drug. I'm scared my readers will scream back with negativity. I realize I don't have that many readers - my dad, Chris and Kyra, and a couple others. *Meh*. I know they support me 1000% so I really shouldn't worry what other people think of me.

But I do worry what others think - at least a little.

-- Carla's on the go! Posted from her iPhone.

Clinical Update

2010-06-23T17:37:00.000-05:00

I have switched clinics. I now go to a clinic 1.5ish hours from my house instead of the one 15ish minutes from my house because if I drive 1.5 hours, I get to see a doctor. And a nurse, a social worker, a respiratory therapist, and a dietitian. Pretty good deal.

Here I only got to see a nurse, a pharmacist (REALLY no help at all - especially when she would criticize my psych meds. Seriously? You are a pharmacist in a CF clinic. You think you have the authority to criticize what my psychiatrist has prescribed me? Shut up.), MAYBE my social worker if I was there on a Wednesday, and the nurse practitioner. Note that last one. A Nurse Practitioner, while helpful, is NOT a pulmonologist. I am sorry. You did not go to medical school, please send me the person who did.

Also, I got into some trouble at my home clinic because of an investigational medication and me refusing to give it back even though I dropped out of the study... and Yes, that IS part of the story of the Magical Medicine of Magic-ness. So I have no idea how the people in the clinic feel about me keeping the Wonder Drug. I have no idea because I haven't seen them since August (I know - BAD CARLA!). This is the first time EVER I have gone any longer than 3 months without seeing a CF Doc. Actually, it's the first time in recent years that I have gone any longer than 3 months without IV antibiotics - and I'm approaching TEN months without IVs and have passed ONE YEAR without being hospitalized. Love it! *Does the SUPER HAPPY DANCE!!!*

Anyways, back to the fact that I haven't seen them since August. I haven't been to clinic since August and I haven't done PFTs since October - Again, BAD CARLA!, I know, but I have been feeling great (which is no excuse - go do your PFTs!). But, clinic hasn't called or written or sent smoke signals to ask where I've been, so I wonder how much they actually care about me anyways.

So this new clinic - I've been there before. And I've seen this new amazing doctor before. And evreything was just as amazing and wonderful as I remembered - and even moreso. I loved that I walked in and wasn't exhausted by the time I got to the clinic. I loved my PFTs were the same as in October and better than the last time I was there (which was a year ago in February).

Everyone was so nice and loving and *le sigh* soooo different from my regular clinic. So..... So long! Farewell! Auf Weidersein! Goodbye! Gooooooodbye! And Good Riddance. It'll be nice not to have to fight with people every time I want to know how my health is doing or I get sick. Old clinic, you can BITE ME. I LOVE new clinic!

My PFTs ROCK. They are AWESOME and WONDERFUL and SO MANY WORDS I CAN'T THINK OF RIGHT NOW! I. Am. Healthy. And I love it!

So those are two things I love today: New Clinic and My Health!!!

Learning To Live

2010-06-18T09:19:00.000-05:00

Learning to Live is hard. I want to live happy, healthy and free. I get frustrated when sad things happen. I feel it shouldn't affect me because I'm no longer depressed. I need to accept that sad things happen and it's okay to be sad.

Last week my puppy got sick. We got Snowball when I was 10 and my brother was 7. We named him and that's as creative as we could get. He was white and flluffy, so Snowball made sense. If I got a dog now I'd name him Einstein, Schrodinger (although that's a better name for a cat), or The Doctor (Doc for short). That's a different story - the "Why Carla Can't Have A Dog" story.

So we'd had Snowball for more than 13 years. He truly was my mom's dog - he followed her everywhere. But we all loved him so much. He was the best dog ever! There was no end to the tricks and quirks of Snowball.

Some of my favorites are when he used to steal my dad's sandal - and it was nearly as big as he was. Watching him bound with this completely awkward sandal was adorable. He used to steal cloth napkins off the table - and that's how he got his middle name "Napkin." Had we been clever it could have been "Sneaky" or "Swiper" because alliteration is cool. But we were young and "Napkin" made sense.

I love when he would try and get us to play with his chips (what we called the chew things). He would throw it in the air and catch it, throw it and go chase it. It was adorable. He also loved to play. When he was a puppy we would play soccer - and that was wonderful. He had so many awesome toys over the years - Squeaky Penguin, Spider, and Turtle that became yarmulke because he loved to rip out all the stuffing. There are too many favorite toys to mention. But Bunny has to be mentioned. Bunny was Snowball's bedtime pal for 7 years, until he stopped sleeping in the kennel and insisted on sleeping with Mom and Dad. Bunny is a special friend.

There was always a new quirk with Snowball. This winter we finally taught him/let him go outside by himself. And he loved it. Last summer he ate the cherry tomatoes that fell off Mom's plant. And he always would tell us when he wanted to go to bed.

I love him so much - it's hard. Tuesday Mom and Dad had to put him down after he had a seizure. Last week we found out he has cancer. I dropped everything and went to my parents' place - I needed to say goodbye. But Snowball improved and my brother came up and we all had a good weekend with Snowball. We even threw him a Goodbye Party and he ate cake and ice cream with us. When my brother and I left we said goodbye - but we thought we might have a little more time. It was a shock when I got a call from my mom on Tuesday saying he needed to be put down. And about an hour and 1/2 later Snowball was gone.

And I miss him.

Learning to live is hard. But maybe this is just another life lesson - I wish this life lesson didn't hurt so much.

I love you Snowball!

Snowball

2010-06-15T18:41:00.001-05:00

RIP Snowball Napkin 12.20.1996 - 6.15.2010

You are the best dog anyone could ever have. I love you forever and always.

-- Carla's on the go! Posted from her iPhone.

Daily Photos

2010-06-06T12:03:00.000-05:00

I'm loving the 365 photo idea. I LOVE taking photos, so this is right up my alley! Here are a few I love:

-- Post From My iPhone

Project 365

2010-06-03T18:27:00.000-05:00

I have downloaded the iPhone app Project 365 which encourages you to take a photo every day. I love this idea and I plan on trying to post some of my favorites here. Most of the photos will be take. With my phone, so we know what quality that will be - but i'd like to also try and take a photo or two every day with my regular camera, too.

Here is today's photo. The beds in our hotel room in Springfield, IL. My dad and I are down here to visit my grandparents.

-- Post From My iPhone

Happy Golden Birthday

2010-05-25T11:24:00.001-05:00

Two of my FAVORITE people on the planet have had golden birthdays recently. I feel bad because I think I forgot to say awesome things on my blog about my awesome brother on his golden day, so here are the awesome things about TWO AWESOME PEOPLE.

Happy Golden Birthday, Darin (a little bit late). I know we went to Vegas, and I threw you a party here, and I told the world on Facebook how awesome you are - but I didn't say anything nice here. And this is the place you never read, so it's SUPER important. Right.

My brother means the world to me. He's one of my very important rocks. He's brilliant, and funny and can be amazingly flamingly gay. The last one is one of my favorite qualities in my brother. That, and that he hangs up on me on the phone on a regular basis. Seriously.

If you interrupt his thought at all he gets mad - which can be funny. But overall, he's sweet when he's told to be. He does my laundry when I tell him to. He pushes my wheelchair when we travel. He makes me laugh - and he could make you laugh too. And if I told him to, he'd come here to read the nice things I've just written about him - because he's that cool of a kid.

I'm unbelievably proud of him. Going to college - going to FINISH college! An internship! A possible job! Things I couldn't do. And sometimes he cares about the world too! When we were young he was obsessed with turning the lights off to conserve energy, and last year (on his birthday) he had a big exhibit of photos and some speakers for an event on Family Diversity. I was so proud I cried.

I Love You, Dar-Dar! Let's go to New York sometime, k? K.

****

And the second person with a Golden Birthday is my best friend, Kyra. (Yes, the one whose anniversary was yesterday).

Kyra is a wonderful wife, mother and best friend. She is one of the most beautiful people I have ever known. She glows inside and out. I love that she (and her husband, Chris - I could say many nice things about him, too, but it is not his birthday today) includes me in her life as much as she does. She always thinks of me and includes me in activities that for most young families, are just a Mom-Dad-Baby activity.

I usually eat dinner at their house at least once a week - and not just because Kyra is an AMAZING cook. I think her turkey meatloaf might be my favorite. OR maybe the turkey she made for Christmas. Yes, Christmas. I should write about that - I didn't know if I was going to have somewhere to go for Christmas, and in less than a second Kyra said that I could spend it with them. I loved spending Christmas with Kyra, Chris, and Luca.

Now to talk about what a wonderful Mom Kyra is. She works full time. And she cooks and cleans and raises her little boy and still finds time for her husband and me. I can't believe I'm included in that sentence. But I am and I'm so grateful for it. Kyra has the cutest son in the world. Luca. My honorary nephew. Most of the time, I leave out the honorary because Kyra is like a sister to me. I love her that much. I love watching her take care of Luca. The other night they made muffins together - and I had to take photos and video, it was THAT adorable.

I just can't say enough nice things about this woman. She has changed my life and made it better.

One last thing about Kyra, though: She works really hard and I believe she needs more time for herself.

So, let's have a spa day sometime soon, k? K.

I Love You and HAPPY GOLDEN BIRTHDAY KYRA!!!

You can find more about Kyra at http://kyrachris.com/

Happy Anniversary

2010-05-24T23:09:00.000-05:00

I'm exhausted, but I just want to with a VERY Happy 2nd Anniversary to Chris and Kyra of kyrachris.com.

Chris and Kyra -
Thanks for being in my life. You're an amazing couple with an adorable, smart, wonderful son and I am blessed to know you all. Thank you for your unconditional love and support. I couldn't ask for better friends/honorary siblings.
I'm pretty sure I wrote everything else I wanted to tell you in my card/present. ;-)
I LOVE YOU!
Happy 2nd Anniversary - And Many More!
Love,
Carla
"Auntie Carla"

Craft Blog

2010-05-24T22:59:00.000-05:00

I think I've decided (just this instant while I was watching TV) to start a CRAFT BLOG.

I've tried keeping craft binders and craft notebooks, but I'm just not very good at it. So I think I'm going to start a craft blog as a place to keep track of things I want to make and things I have made (hopefully with photos of the things I have made). I could go back and take photos of things like the uber impressive knitting bag I made. It's more like a knitting supply tank than a bag, but it's great.

The idea came after I had the quick idea to make a crafting tool belt - something like an apron where I can keep my pens and scissors and glue sticks when I'm scrap booking. I can keep my pencils and scissors and thread in it while I quilt. I can keep my tape measure, my scissors, my pattern and pens, and my other knitting needles I need in it while I'm knitting.

Now I just need to figure out how to make that apron-thing. Shouldn't be too hard. But maybe I should finish the scrapbook I'm working on and finish the thank-you cards I'm making before I start something else. PLUS the quilt isn't done.

I really love my crafts. :-) Keep looking for my new CRAFT BLOG. Soon when I have a moment to start the thing, I will. (I'm too exhausted to do it tonight).

Is there a way to link blogs - like whenever I post something on my craft blog or my travel photo blog, a little blurb will appear in my main life blog? THAT would be cool. I think I'll need help from Chris for that one - he's my go-to "I'm stuck in Gmail and Blogger and can't get out" guy. Because they confuse me.

Grandma

2010-05-20T12:25:00.001-05:00

I sit watching my 90-year-old grandmother prepare dish water. I watch her and my 92-year-old grandfather wash dishes. My father walks away because either he knows or doesn't want to watch. I offer to help - she won't let me.

My grandmother is sun-downing before my eyes. And the sun is setting outside the west window. The clouds are orange and purple. It's lovely out there, but stormy in here.

I want to go back to this morning - back when my grandmother knew who I was and why I was in her house. Back when she was laid back and let us do things for her. Back when we could suggest something without yelling. So much yelling. No matter how loud our voices are Grandma still doesn't understand. That was hours ago, but it seems like decades.

My grandmother yells at my father because he's not dyring a plate correctly. My attention snaps back to the sink as my father belligerently tells my grandmother "Well, if you don't like the way I'm doing it, then dry it yourself!" as he shoves the towel at her. She replies by slamming down the towel and yelling, "I can't! I'm washing!"

A 90-year-old woman who can't remember how to use the stove or take a shower is trying to wash dishes because it's HER house and only SHE knows how to do things correctly. And sometimes we look at each other and think, "She's such a pain in the ass." Honestly, I feel bad thinking those things. I wonder what's going on in her mind. What is left? If she knows us in the morning but not in the evening, what is going on inside? I don't understand - but I want to.

I have my own, very different, mental problems. PTSD and depression and anxiety are very different from Alziemers disease. I have insight into my world and what's wrong with me, and I don't think my Grandma does. I feel like I should be a support for her, a shoulder to lean on when she talks about how frustrating Alziemers is. And I can't be that person - no one can. She doesn't know what's wrong or that there is anything wrong.
And I can't imagine feeling like that.

The dish-washing episode was set off by an argument we had while sitting on the porch. All of this over an argument about when the porch was built. I was yelled at because ther's no way I could remember it, according to Grandma. She said I wasn't even born yet when the porch was built. My handprint is in the cement slab next to the handprint of my younger brother. Those handprints were put in cement and dated when the porch was added on. We were here. We remember and Grandma doesn't.

It's so frustrating to talk to someone when hard evidence - like handprints in the cememt - can't even convince them they are confused.

Usually, we laugh off her inappropriate comments and oblige her with an answer when she asks us the same question for the third time in 10 minutes. That's in the morning. By evening, it dissolves into arguments that are frustrating for us - and honestly, I have no idea what they are like for her. Because that is the nature of Alziemers. You just don't know.

*Written Labor Day Weekend, 2009*

Wednesday Thinklings

2010-05-19T10:37:00.000-05:00

*I feel so healthy!
*I love this photo from the masquerade ball!
*I feel so healthy!
*I can't believe how good I feel!
*I'm taking about 80% fewer naps!
*I'm quilting again!
*I can shower before I go places - and I still have energy left!
*I feel so good I want to cry.
*It's been so long since I've felt like this - I don't know if I've ever felt this good.
*I'm going to get my place in tip-top shape!
*You should see the organization of my meds. It ROCKS.

The end. Happy Wednesday!

Defying Gravity on Wednesday

2010-05-19T10:31:00.000-05:00

I want to scream from the rooftops "I'm ALL BETTER!!!" I want to dance and spin and jump up and down BECAUSE I CAN!

I am loving the song "Defying Gravity" (the Glee version). The lyrics are speaking to me - in parentheses are my thoughts/reasons why I love that line!

Defying Gravity

Something has changed within me (I feel better physically AND mentally! Finally!)
Something is not the same (I'm not so crazy)
I'm through with playing by the rules (CF should keep me from doing things)
Of someone else's game (CF is NOT my game)
Too late for second-guessing
Too late to go back to sleep (Let's stay awake!!!)
It's time to trust my instincts
Close my eyes: and leap! (I'm Leaping back into life!)

It's time to try
Defying gravity
I think I'll try
Defying gravity
Kiss me goodbye
I am defying gravity
And you wont bring me down! (No one will bring me down!)

I'm through accepting limits
''cause someone says they're so
Some things I cannot change
But till I try, I'll never know! (Exactly how I feel! I'm going to try!)
Too long I've been afraid of
Losing love I guess I've lost
Well, if that's love
It comes at much too high a cost!

I'd sooner buy
Defying gravity
Kiss me goodbye
I'm defying gravity
I think I'll try
Defying gravity
And you wont bring me down!

So there it is, I'm going to DEFY GRAVITY and DEFY what I should be - depressed, anxious and sick from my CF. I'm going to do things and experience life to the fullest while I am feeling this healthy!

I'm going to DEFY GRAVITY!
AND YOU CAN'T BRING ME DOWN!!!

Great Strides

2010-05-16T08:47:00.000-05:00

Great Strides is Today!!! I'll be walking this morning with friends and family. We raised over $5,000 this year. Not bad considering our team is significantly smaller.

This is for Eva, Janel, Laura, Lauren and all my other CF angels.

This is for Lauren, Talana, Tabitha, Tricia, Angie, and all my CF Friends.

This is for all the CFers who are little kids who really need a cure so we can spare them all the pain and suffering we have known.

This is for all the CFers who have ever been sick, who are still sick, or who will ever be sick.

And this is for me. Because I am on my way to learning to live my life - and I've spent ONE YEAR out of the hospital. And NINE MONTHS without IVs.

<3 <3 <3

"You Are My Sunshine"

2010-05-10T20:45:00.001-05:00

"You Are My Sunshine" is the state song of Louisiana. I think I was really supposed to be born there. I absolutely love it (except for the fact that there is all that DAMN humidity. I think I'd go north - or way west to Hawai'i for the summer). And my dad lived there until after the 9th grade.

"You Are My Sunshine" is a song my mother couldn't listen to when I was a child because of the connotations and the fact that I have cystic fibrosis.

Today I am in a very dark place. I've been in this dark place for awhile now, and I'm doing my best to fight my way out. But there are days I want to give up fighting and trying to live my life and I just want to go to sleep until it's all over. It won't be over until I fight my way through, but try using logic with CRAZY. It doesn't work.

Last week I had to check myself in somewhere where I could get more help. I thought about a psych ward, but that's expensive and I wanted to reach my "ONE YEAR WITHOUT BEING IN THE HOSPITAL!" goal. In a couple days it will be one year, and I hope I will be as happy as I should be, but I probably won't. Anyways, instead of a psych ward, I went to my parents' house, because Crazy lives there and my dad is a psychiatrist.

It's so hard for me to talk about my dark place. I was at my parents' for a week, and it helped to be there (except for the night we had a tornado warning, and my dad thought a good thing to distract me would be to turn on his toy trains. I have lived through a tornado. Anyone wanna tell me what a tornado sounds like? Toy trains + already so panicked I'm sobbing = BAAAAD Idea. I had a panic attack for two days straight). It helps not to be alone.

Now I am back at my house and working and trying to socialize, etc. And it's not working. I'm panicked. Not so panicked that I think I'm going to die, but panicked. I saw my psychiatrist last week and he put me on a new medication: Abilify. I have now joined a new group of people: THOSE WHO NEED ANTI-PSYCHOTICS. And I am a proud card-carrying member of this group, especially if the drug helps. I'd cut off my left foot if it would help. Yes, the left one. I'm particularly fond of the right and my left big toe is cracked in two places and we've been super gluing it, and I just don't really want to wait for it to grow out. So I'd gladly give up the left foot to feel better.

Panic. Panic Panic. Panic Panic Panic Panic PANIC PANIC PANIC! PAAAAAAANNNNNIIIIICCCCC!!!!!!!! Just like that, all day long. And honestly, I'm so far gone I'm confused. And right now I can't tell ya if my PTSD is bothering me or not. Am I having flashbacks? I don't know - but I'm going to panic about them anyways!!!

I'm in the dark panicky place and nothing helps. NOTHING. N-to-the-O-to-the-THING. Nothing. Except there is one thing that makes the world a little sunnier, if only slightly, and if only for a little while because it has a bedtime.

My nephew, Luca, makes my world a little sunnier. The Sunday before Mothers' Day we went to breakfast, the zoo, and lunch. I love his parents to death - they are amazing people, but adults just can't help with my anxiety. But this little kiddo can. All he has to do is say, "More please," "'s Broken," or "I DID IT!" and my heart melts and the panic goes away.

Tonight I had the privilege of babysitting him. At 18 months this kiddo can put his books away, and knows how to put away the bath toys. And don't get me started on the potty talk. He tells you when he has to poop (and sometimes, I think he just thinks it's a fun word to say. Can you blame him? POOP!), and pees on the potty when the timing is right. Tonight, he peed on the potty for me!!! I was so happy to empty that little potty with the pee in it, and swish it out with toilet water before putting it back! I never thought someone else's bodily functions could make me so happy!

But before we went potty, we called my mom and dad. And he said, "Hi Bruce and Hi Alice" - except he's a toddler, so it's way more cute than that. And, I accidentally taught him "Poker Face" by Lady Gaga. I had it in my head after a conversation with his mother, so I was singing it. And now, when I sing it he points to his face. And you can ask him where his poker face is and he'll point to his face and say, "Poker Face." My dad was asking him all sorts of questions and he answered, "yeah..." to each one. Just like that, with the ellipse after it, like he had more to say but couldn't find the words because he was stoned out of his mind. (Not that he WAS stoned... but the way that stoners say things, that's the way he said it.)

I gave him his bath and we went through his bedtime routine - with no-fuss. Auntie Carla even knows how to dry Baby Luca's hair with the towel without making him cry. Because I'm the shit. And then, because I promised we tried calling my brother again; he didn't answer the first time we tried. He answered this time, and I just had to show off the Lady Gaga impersonation. Because only the cool babies know "Poker Face."

And then it was time for bed. We read "Goodnight Moon," and then I rocked him. I cried a little because I didn't want to put him to bed because either he distracts me enough that the panic can't get through, or he's a magical baby with super powers of protection against panic. I think it's the 2nd one. And I realized this kiddo is my sunshine. Right now, from my dark, dark place, he is a reason - if not the ONLY reason - I keep fighting. There are other reasons, I suppose, but it's rare if I remember them. I needed to let my kiddo know how special he is, so I sang him a song that goes like this:

"You are my Sunshine,
My only Sunshine,
You make me happy,
When skies are gray.
You'll never know Dear,
How much I Love You.
Please don't take
My Sunshine Away."

I love you Luca-Bean. I know it will be years before you ever understand, but thanks for being My Sunshine in this dark, dark time.

Today

2010-05-02T09:14:00.000-05:00

I will focus on today. I will focus on this hour. I will focus on this minute. That is how I will survive.

Things have gone bad - my PTSD is pretty much out of control, as are my panic attacks. My mother and I had a fun-filled day of criticizing Carla yesterday. Also, she was/is mad because I've never told her everything about the trauma - so she made me talk about it. It's a box I'm supposed to keep closed. I'm trying to sit on the box and zip it shut, but it ain't workin'.

I need to keep quotes and advice close in my mind to make it through.

"You may have to fight the battle more than once to win it" - Margaret Thatcher

That's pretty damn true. But it sucks.

I keep reminding myself of what my primary care doc told me, "Everything is useful."

And I know someday this will be useful. Someday I might be able to write about it and get my book published. Someday I might be able to talk to young kids and advocate against abuse. Someday maybe I will help someone because I've been here and I know what it feels like.

But right now I'm focused on TODAY. "No Day But Today," and "This too shall pass." The second one my dad says a lot. He's my rock.

I will make it through this minute. I will make it through this hour. I will make it through today. And then there is always tomorrow.

Live, Laugh, Love

2010-05-01T00:43:00.001-05:00

The words "Live, Laugh, Love" hang in my living room. I try everyday to live up to them. Lately I've been feeling lost, confused, and even sad. But the one thing I never run out of is Love.

Love is my favorite feeling. Just being able to love the moment you're in and smile and laugh is the best feeling in the world. It's no surprise that lately I have been feeling a little un-loved. My mental struggles and my physical ones can make me feel like it's just me vs. the world. But when I look around I almost always find an incredible amount of love.

And like the Beatles said, "All you need is Love."

I always have many things to say - like tonight i could write about how my toe is once again keeping me from dancing, or how my car ran out of gas, but i want to write about Love. I want to share with you some of the reasons I am feeling loved - and loving my life - tonight.

Tonight I went to a formal masquerede ball put on by the ballroom dance group I belong to. Because I am a council member I had to be there early to set up all the decorations. I had picked them out, and as they went up in all sorts of creative ways, I felt love and joy. I love my ballroom group. The other night I wrote how I want to have a place like Cheers - where everyone knows my name. Tonight I realized I do.

I feel loved when I get a text message or a phone call from a friend. Especially my best friend.

Everyday when I go to the mailbox during this time of year I feel loved because sitting there waiting for me are more checks for my Great Strides walk for The CF Foundation. And even better than the checks are the little notes people include with them. They warm my heart.

There was more I wanted to say in this post - coherent thoughts even - but they are gone now because it's past midnight and my brain turned into a pumpkin!

LOVE!

-- Post From My iPhone

Hattie Hippo Says Hello

2010-04-18T01:27:00.001-05:00

It's 1am; I'm feeling a little silly and I have a hippopotamus who wants to say Helllllooooooooooo!

-- Post From My iPhone

Craaazy. And Changes

2010-04-15T09:49:00.002-05:00

I want to make changes to my site. Like linking it so that every post shows up on Facebook. And I want to redo my profile. My life isn't just about CF - it's also about dealing with my mental challenges (PTSD, Depression, Anxiety, etc?), and the mysterious lack of energy I have. Also fibro and endometriosis. MAN I am a cool chick with a ton of problems. Lastly, I'd like to include that I deal with a host of other crazy influences in my life.

I found this email from December '08. I was planning a trip to San Jose/San Fran with my friends. I went on the trip and it was wonderful... but this is what happened leading up to it:

12/19/08

Thanks, Dad. I will pay you back [for the plane ticket]. Mom woke me up this morning and told me that I've ruined Christmas. So much for her not going ballistic. She also went on for at least 10 minutes about how steep San Fran is. I set the phone down and ignored her. And I'm a horrible person for not taking no for an answer. I'm 22, I don't have to take no for an answer. It's my life, despite what she may think.

YAY! I'm the first to ruin Christmas this year! Do I get a prize?

Love,
Carla

Stress. Life is so much more fun with it!!!

Honesty in Short Phrases

2010-04-14T22:03:00.001-05:00

I want to be more open and honest about my mental issues/illnesses/craziness. Whatever you want to call it, I want to talk about it.

I was young. 10 years ago.
I thought I could handle it.

Is it my fault?

I've learned more and more of people who would have supported me. Was I wrong to keep quiet? Does it make it my fault?

The only thing I did wrong was keep quiet. He is the monster. I was ashamed. I am ashamed.

I am ashamed I still have problems so many years later. I'm ashamed I don't have an answer when people ask me why I didn't ask them for help.

I was ashamed. I thought I brought it on myself. I thought I would be okay.

I'm not okay.

What happened isn't okay. What the police told me isn't okay. The fact he is still alive and breathing isn't okay.

I understand how families feel when they want the death penalty for the offender. I want it.

I'm still afraid. I still cry. I still have nightmares. I still have flashbacks.

I want to work on all this in therapy, but please don't ask me to talk about it. It's horrible.

I want to be able to talk about it so I can advocate for women and girls, but I can't yet. Hopefully I'll get there.

I want to let go. Is it my fault I can't let go? Is it my fault these thoughts and dreams haunt me? Sometimes I feel it must be my fault. Why else would this happen? Why would this still be happening?

-- Post From My iPhone

Hattie the Hippo

2010-04-12T22:22:00.001-05:00

I would like to talk about my vacation to Vegas and the wonderful experience of meeting a CF online friend, but I'm exhausted. So here's this little post instead.

For Easter, my dad got me a purple stuffed hippo pillow/friend. Her name is Hattie

Dear Hattie,
Thank you for helping me when I thought nothing could help. Thank you for calming me when I was having flashbacks and was crying myself to sleep because I was so scared. Thanks for helping me fall asleep after my brother helped calm me down by singing me camp songs. It was a really rough time mentally, and I think I'm doing better. I took you to Vegas just in case, but I did really well. You make a good travel companion and make sleeping on a plane so much easier! Also sleeping on the floor in the airport. And sleeping in airport chairs.
I woke this morning wondering if my family was up yet, and then realized that I was alone, and it was okay.

Thanks for your help, Hattie.
Love,
Carla

-- Post From My iPhone

For Dad

2010-04-09T21:25:00.001-05:00

This is just for you, Dad. We're waiting for O to start, so I had time to take and post this. :-). And notice I'm wearing my new Cirque zip up sweater!

-- Post From My iPhone

Seven

2010-04-07T11:49:00.003-05:00

It has been more than SEVEN months since I have had IV antibiotics for my cystic fibrosis.

I know I say this every time another month passes, but I used to have to do them every 2.5 to 3 months. So this is a BIG deal.

But it's not like I thought it would be. I thought I'd have more energy and be SUPER CARLA! Able to do many crafts and babysit and dance and socialize all in one week! And able to organize and keep her house clean! And she now does the dishes and laundry too!

Except that's not what this is like at all. And it confuses me.

I should be super excited that I have gone this long without a hospital stay or doing home IVs. I haven't had to risk losing more of my hearing or doing more damage to my liver and kidneys. Those are very positive. I haven't gotten so sick where I can barely breathe and barely move. I enjoy that. But again, I'm confused because I thought this would be different.

I still sleep a lot. More than most people. More than most sick people. I feel I sleep more than I should need to and more than any of my friends with CF or fibro or anything (I know this isn't true, but it is what it seems like to me).

I know I have more 'good days' this way - with the lungs that don't crap out on me as often. But I think I was hoping they'd all be 'good days.' And they aren't. I thought I would recover faster if I wear myself out. And I don't. I thought I could walk farther and longer without getting tired. And I can't. Somewhere in my mind I think I was wishing for the ability to run and skip and dance. But that hasn't happened. Dancing is still taxing and hard to do - but I love it, so I try to do it as much as I can (which isn't much).

I think I thought I'd be more normal. But I'm not. My lungs are still scarred, they just don't get as sick as often. My body is still fighting. And I'm still tired.

But at least I'm sleeping in MY bed and not a hospital bed.

SEVEN.

A Rant

2010-04-05T12:30:00.001-05:00

I recently have tried to make my blog more positive. To stop ranting. Because I get a shitstorm of bad comments when I complain. Too damn bad. I need this rant today.

First is denial. I ignore my limited energy and do everything I want to do. Then I end up lying on my brother's couch unable to move and he and his roommate have to drive two cars three hours total to get me home.

And I feel guilty.

Then I try to ration my energy. But I'm filled with complete saddness because of the things I can't get done.

And now there is anger. So much anger I'm hurting myself again.

Maybe I need to cut back. But I can't. I love doing everything I'm doing. But the emotional rollercoaster is killing me.

I don't want to talk about the trauma. When you get me started I can't stop and I end up asking my brother to sit on my bed and sing me to sleep so I don't have any more flashbacks.

I never want to talk about it again. I feel like I should write every single thing I can remember from beginning to when I snapped out of the PTSD fog in 2005. And then through when I fled my hometown in 2006. I'll write it all down and hand it out like a pamphlet. Because I want people to know what happened; I just don't want to talk about it.

I think I need my therapist. I need intense therapy because I'm really messed up right now.

I'm so angry that not everything is organized. I'm angry I live by myself. I'm angry because I thought now that my lungs are doing so much better I would have more energy. And I don't.

I'm angry and sad and frustrated that this isn't like what I thought it would be. I'm not where I thought I would be seven months out from IVs. I should be celebrating.

I should be celebrating. I want to be celebrating. I don't have the energy to be celebrating. I'm finding it hard to find the energy to be myself. And I'm mad about it.

Rant over. Anger still lingering.

-- Post From My iPhone

Photos of a couch adventure

2010-04-01T09:50:00.001-05:00

The stuffed side of the room

One last old couch photo

Empty side of the room

Where I had to put the couch so the new one could come in

Hello rug! I haven't seen you this clean in a long time!

Coat rack in the kitchen

For those of you anxiously waiting for photos of the completed quilt - here's an in progress photo.

New couch I Love You!!!

-- Post From My iPhone

I Hope The New Couch Comes With Yarn Storage

2010-03-31T11:00:00.000-05:00

My mom and I special ordered a couch for my house. I call it the New Couch. It is scheduled to arrive in late April - 12 weeks from when we ordered it. This is a little glimpse into the world of waiting for the New Couch.

First, I have too much furniture. Not only too I have too much furniture, but I'm itching for more. Not really itching for more furniture in particular, but itching for more space to PUT more furniture. And more furniture would be handy to store the copious amounts of stuff I already have. Like Yarn.

Specifically, I want a craft room. So much of my stuff is craft related. I scrapbook, make art w/ paper and photos, and make greeting cards. I also do many other paper-related things. I have lots of paper. I knit. A lot. Therefore I have more yarn than any human should own. I sew. Mainly things with straight lines, like quilts, but I'm going to try and venture out into all kinds of sewing and get more serious about quilting. I'm currently working on a quilt - quilting it by hand, and I'm in love with it. I love the hand quilting.

Anyways, I feel I need a room to keep all this stuff so I can be more productive and less disruptive to the decor of the rest of my place. This has caused me to look at houses. Something I could never afford. Ever. My parents own my place and I pay them rent. So buying a house would consist of convincing my parents I need a new place - and we JUST finished re-doing my current place. When pigs fly, Carla. When they're flying.

So this post is about the chaos the New Couch thing has caused. My New Couch is arriving today. As in TO. DAY. Not the end of April like I was expecting, but TODAY. I'm freaking out. Excited. And scared that I won't like it, or that it's too big, or that it won't fit through the door. Seriously, that's a major concern. So much so that my mother suggested I move all furniture within a two mile radius of the door and where said New Couch is going to go.

I've also had to figure out how to get rid of the OLD couch and chair and ottoman. Craigslist. Done. Easy peasy. Except they aren't coming to pick it up until tonight, which causes the slight issue of WHERE DO I PUT IT UNTIL TONIGHT?!?!?

So last night my friend Chris (from kyrachris.com) came over even though I told him not to. Apparently he and Kyra read my blog. And I was very happy to have the help. We moved furniture and I thought I would move a few things this morning and vacuum and then be done. Not quite.

Today, after my mother suggested a thousand more pieces of furniture that should be moved, I moved them. Half of my living room looks like an antique shop where all the things are piled on top of each other and you have to dig to find a good item. The other half is empty. And then after I moved even more furniture, I vacuumed. I don't vacuum. Vacuuming is the devil. It sucks out all my air and energy at once and then I sleep for days. But today, I'm vacuuming because today is the day the New Couch arrives.

And now I'm just waiting for at least one more hour for the New Couch to arrive. Later I will post photos from my phone of the chaos, the old couch, and the New Couch.

All this waiting gets me thinking. It was so easy to sell my couch on Craigslist, what else can I sell??? I have too much furniture - I should SELL IT! Only problem there? All that furniture is where I keep my yarn.

Spinning

2010-03-28T22:07:00.000-05:00

The world
Always spinning

Always spinning
Always spinning
I ask it to slow
I tell it to stop
Always spinning

Always spinning
Always spinning
Out of control
I can't catch up
Always spinning

Always spinning
Always spinning
Such a big world
So much to do
Always spinning

Always spinning
Always spinning
Big dreams floating
Just out of reach
Always spinning

Always spinning
Always spinning
Reaching high
Falling low
Always spinning

The world
Always spinning

-- Post From My iPhone

The Best Babysitter

2010-03-26T11:59:00.002-05:00

Normally, I am a very good, very enthusiastic babysitter. I love the kids and I don't mind doing things like changing diapers and making lunch. But today, I am tired. So I sort of made it a game.

Like "Can I change the baby in the time it takes the easy mac to cook?" YES!
"Can I feed the baby in the time it takes the mac to cool?" NO
"How about by the time the 4-year-old finishes lunch have the baby down for a nap so I can take one?" YES

And then there are the things I REALLY want to say, but don't.

4-year-old: Can I watch TV?
Me: No.
Her: Why?
Me: Because I said so.
Her: But I want to.
Me: But too much TV is bad for you.
Her: Why?
Me: Because it is.
Her: But what does it do to you?
Me: IT ROTS YOUR BRAIN AND YOU WILL GROW UP STUPID AND DIE.

But instead I said, Just go do something else, please.

Her: Oops! The spoon fell! Now it's dirty!
(I pick it up, wipe it on my pants and continue to feed the baby)
Her: YOU JUST WIPED IT ON YOUR PANTS!!
Me: Yes I did.
Her: But your pants are dirty!
Me: No they aren't they have magical spoon cleaning powers.
Her: No they don't, they have hair on them.

Well played, kid. I had no comeback except, I'M TOO TIRED TO GO GET A NEW SPOON! I WANT A NAP!!! But I just fed the baby silently.

And it's probably not nice to swear at the baby, no matter HOW frustrated you are that all he wants to do is chew on the spoon and not eat lunch. Leaving the swear words out can be hard on days like today.

How to be Helpful

2010-03-18T09:19:00.003-05:00

I'm sick. Most of the time I don't look sick, but I am. And often, I need help. I have goals and dreams and ideas and I don't have the energy to accomplish 1/3 of the things I want to do in a day.

I'm overwhelmingly thankful about my lungs. My lungs are doing pretty good. More than pretty good - great! It's been 7 months since I got sick enough to need IV antibiotics. I can't stress enough how big a miracle this is - I was doing IVs every 2.5 to 3 months.

But now that my lungs are okay I'm frustrated because I still don't have the energy to get everything done. I have MORE energy, but I still need so much sleep and rest. And I think and feel that many people are confused as to why I'm still a mess if my lungs are okay.

Some of it is my sinuses, but I'm working on getting them cleaned out so I don't have to have surgery this year, *cross your fingers.* Most of it, is my fibromyalgia. For whatever reason, it's kicking my butt. So I sleep and lay around for a couple days after I do anything big - like attend a dance. This has ruined my love of Salsa Rueda because I haven't been able to attend the last few weeks - and it frustrates me.

So now that I've explained why things are still hard (oh, and remember, my lungs are good FOR ME. They aren't normal lungs.), I'm going to make a list of ways people can help. I know many of my friends want to help, but don't know what to do. So here you go!

My selfish list of things I want you to do to help me feel better when I feel awful:

*Tell me you're coming over to help. Don't ask if I need help because I'll say no. Just assume I do, and come over. If my place happens to sparkle and be organized, we'll watch a movie.

*Help with house stuff (dishes, laundry, trash, vacuuming, etc.)

*Watch a movie with me (and don't mind when I fall asleep)

*Give me a hug

*Cuddles!

*Run an errand for me

*Pick up my meds from the pharmacy

*Go to the grocery store (of course I'll give you the cash)

*Help me sort or organize something

*Call me - I probably won't pick up if I'm sleeping, but a voicemail from you will cheer me up

*Text me!!! I love the silly ones :-)

*Offer to give me a ride to the event/gathering that is planned, so I can attend. Sometimes driving takes so much energy.

*Make me a sammich! Or a Hot Dog! If I'm really sick/exhausted I sometimes choose to sleep rather than eat. Good for my waistline, not so good for my blood sugar.

*Anything you can think of - I appreciate everything and anything my friends/family are able to do for me. I know I can be a pain in the butt (my brother often reminds me of this fact), so if you love me enough to help me, I promise I'll help you when you need it!

They say it takes a village to raise a child - but what about a disabled adult? I think it takes a loving family and an abundance of amazing friends to keep a sick big kid going.

A little update

2010-03-14T14:39:00.001-05:00

I'm on my way to making it SEVEN months without IV antibiotics. A couple years ago I went 5 months, but since then it has been every 2.5 or 3 months. I'm so thankful for this, and the choices I made to make it possible (and the story is long and I'm still too chicken to talk about it).

I'm having some problems with energy and fibromyalgia. This has been frustrating for me because my lungs are doing so well. Also a few problems with my sinuses. Bleh.

I'm working on a few posts that I really want to get written and posted. I'm working on a quilt - my hospital quilt (but maybe I'll never need to use it there!). I will be knitting a dress, and probably working on some new projects! Because of my energy, I haven't been able to dance as much as I want to, but I'm still dancing occasionally.

All in all, things are good. Fewer naps and having all my stuff organized would make it better, but I'm happy.

Hopefully I'll get the meaningful posts I'm working on up soon!

-- Post From My iPhone

Wishing

2010-03-07T11:08:00.000-06:00

I'm wishing for the rest of my energy to return. I think I'm so sleepy because of a sinus infection, so hopefully I'll keep doing stuff to clear out my sinuses and I'll keep getting better.

I am wishing for the energy to sort through all my stuff that needs sorting. I want my place to be neat and organized. Maybe I should just invite my friends over one by one and force them to sort stuff for me. Silly me. Wishful thinking.

I don't know how I'll ever get things sorted.

-- Post From My iPhone

A Crazy Life

2010-02-25T19:44:00.000-06:00

My life has been crazy lately. And I still haven't blogged about the magical drug, and I'm planning on it, but I need a block of time first. And this weekend I'm going to a wedding, and all but a couple of my best people will be in town.

Today I took a big leap in my life. I found a salon on my own and had the courage to get highlights AND a trendy haircut.

Here is me with foils in my hair!

And my new hair! You can't see the highlights very well because of the lighting. But look at how Trendy my hair is. I have had the same hair since middle school.

-- Post From My iPhone

Who I Am

2010-02-21T12:44:00.003-06:00

I may not always know exactly who I am but I know who I am not.

I am not The Girl With CF. Your Friend With CF. That Person With Cystic Fibrosis.
Describe me any other way you want, but don't point me out as the one with CF.

Because I am so much more. Call me any of those other qualities.

Call me smart, brilliant, radiant, depressing.
Call me pretty, ugly, sweet, or even bitchy.
Nerdy, out-going, social, bubbly.
Honest, not honest, creative, aggressive.
Dependable, irresponsible, punctual, flighty will do.

Tell them I love children.
I love music and dance.
I quilt, sew, scrapbook and knit.
I'm a film buff. And I even love the bad ones.
Tell them I'm stylish, addicted to purses, and I love me lots of shoes.

I have red hair, or brown hair, or hair that gets cut once a year.
I have green eyes. And I always wear glasses because I'm too irresponsible to wear contacts.
I'm organized but not neat. Clean but not exactly immaculate.
I'm chunky, not-quite thin, not athletic.
Even stacked, easy, arrogant and selfish are better ways to describe me than to use my CF as a defining quality.

Tell them I am human.

First tell them who I am, and then tell them I've got a little bit wrong with my genes.

Quilt In Progress

2010-02-14T07:55:00.001-06:00

This is the quilt I've been devoting my time to. This is the front side. I'm currently pinning on the T-shirt squares and then will hand sew them on. And then I need to make the back, sew on those T-shirt squares, make a border, get some batting, and sew it all together. Then I need to decide how I want to quilt it. By hand, with clear thread I'm thinking. I just need to decide on a pattern.

Special shout out to Callie, Rachel, Janelle and the others who made me the banner when I was in the hospital. Shout out to whoever gave me the idea to make a T-shirt quilt (I think it was Sarah). And shout out to Christy's T-shirt quilt for showing me that a T-shirt quilt could be pretty.

And I just want to say how happy I am to be doing all this work on this quilt. The t-shirts have been in my closet for years waiting for me to make a nice looking quilt. And I'm so happy with how it's turning out!!!

Yay quilting!!!

-- Post From My iPhone

For Eva

2010-02-13T23:39:00.004-06:00

Eva, also known as "65_RedRoses," is dying. I read her blog. I follow what is happening with the documentary they made about her lung transplant (and I can't wait until I can see it. When will it be released to the States?!?!).

Part of me wants to BE Eva. I want to be successful at spreading awareness about Cystic Fibrosis. I want to be gorgeous even when I'm sick. I want to have the words to express how I feel. I write in my personal journal every night, but I feel like my blog should be much more. Updates on how I'm doing. Feelings about life. Wisdom. Hope. Love.

I want to live my life with grace and love like Eva has. I want to be as much fun as Eva, but lots of times, I am grumpy. And I'm sarcastic. I think my sarcasm often comes off as negativity, but I don't mean it that way. In my brain, my thoughts about my life and my disease(s) are hopeful.

Tonight, I would like to quote some of my favorite things that Eva has written on her blog http://65redroses.livejournal.com/

I would also encourage you to read the whole thing. It's better than anything I could ever write. (Which makes my dream of becoming a published author all the more daunting.)

So here are quotes from Eva:

"you'd be amazed at what in the world can be solved with a good cuddle."

Here she is talking about her friends and family:
"they say it is easier to be here next to me and be aware of my condition than it is to stay far away and worry about how bad it is. they say it is harder to call and try and read between the lines of 'how are you' and 'just fine' than it is to hold my hair back."

I wonder if my friends and family feel the same way. Sometimes I feel them push away when I'm sick, and sometimes they are right there. It's complicated.

She writes my exact feelings, and it's eerie and comforting all at the same time:

"in fact i think thats part of it too.. rather than looking forward to a perfect future or wondering if things might ever get hard..I can personally guarantee that it WILL be hard.

but to make up for how hard it will be I can also guarantee that I will laugh hard, live hard and love hard.

my life is a rollercoaster with killer highs and deafening lows. but i come with advance warning. if you don't think you can handle it i suggest getting off now. it's going to be one hell of a ride."

Again, she is what I want to be:

"and i will not stop writing. i will not stop letting people in. i will not stop talking about what is it to be 25 and held back. 25 and waiting to live. 25 and begging for another chance.

please let me live again.

please let me walk. let me dance. let me breathe."

On Love:
"i believe, more than anything else, that LOVE is worth it.
the world is better with more love then less.
there is no limited amount of love.
it is endless.
limitless.
without borders.
why not love MORE?
harder?
deeper?
with everything we have?

what is there to be scared of?
even if rejected or lost or turned away...we still learn
there is no negative.

LOVE.

fiercely.
with strength.
passion
and conviction."

I often feel this way when I'm in the hospital:
"i felt angry that all these people visiting my room got to walk out and leave.
leave me waiting.
waiting for my life to start.
i'm sick of being on pause.
i want my fucking life back already!"

I think that's all the quotes I'm going to include tonight. Maybe I'll include more at a later date. But for now, I need a good cry.

My lungs are healthy (and I still plan on writing about why. I'm a little nervous about it because... well... let's just say it's "unconventional." And also, I want every CFer to have access to what I'm doing, but it's not possible right now. Hopefully it will be soon).

Anyways. My lungs are healthy, but other parts of me are not. I don't know how much more of the "other diseases" I can take. I'm okay with my CF - sometimes I love my CF because of the way it has shaped my life and who I am. For example, I tend not to take as many things for granted, and for that I am grateful for my CF. I'm not saying it doesn't suck. It does. But it also is a very big part of who I am.

The other crap I'm dealing with? I just want it to go away.

And I'd like to be able to stay awake like a normal person. Do you have any idea how tired I am of napping. Nap, nap, nap, food. That's how my days go.

Speaking of napping, it's way past my bedtime. And we all know how important my sleep is.

Please keep Eva in your thoughts. And read her livejournal. It's amazing. The link is http://65redroses.livejournal.com/

You have no idea how much I'm going to miss reading the thoughts I wish I could express. Maybe I will have to suck it up and become a serious blogger again. A CF blogger. An all those other things I deal with blogger. A human blogger. At least, that's the goal.

Goodnight

Mission: Ignore

2010-02-12T23:12:00.002-06:00

The pain I'm experiencing is familiar. I've felt it before. Pelvic pain and lower back pain. It's not as bad as it was then, but it's the same. And it's the same in the way that I am starting to not be able to stand for very long. Back when I first had this pain we never truly discovered what was causing it. I was treated with a drug that put me into menopause, and the pain (and constant 'down there' bleeding) went away.

So, let's make this really long story a shorter one. The magical drug only had a few side affects like lactation, hot sweats, and Brillo Pad facial hair. After adding another med to help my bones, the hot flashes went away. But I've been able to enjoy the Brillo Pad facial hair and the lactation for the last year and 1/2. Have you ever been able to squirt milk across the room with your nipples? I didn't think so. I often felt like the FemBots in Austin Powers. If only it were something deadlier than milk...

But I really enjoyed the magical drug because the pain went away and I wasn't constantly bleeding. And as a bonus, I had no period. WOOT! And because this drug was a good thing (with a fun, squirt gun side effect), the insurance company said it wouldn't pay for it anymore. I'm not going to get into details. They said no, we said but, I need it. They said no again and now we're in a pickle. It's a very expensive magical drug.

So I go to the doctor and we decide to try the option that I was afraid to try in the first place because I was pretty sure it wouldn't work. An IUD. And when they tell you that you will feel a little cramping when it's put in, don't believe them. It is A LOT of cramping. My uterus screamed, "WOAH! What the hell?!?!" and then tried to expel the thing for the rest of the day. Crampity cramp cramp. It wasn't terrible...

Until now. I'm starting to bleed again. That constant annoying bleeding. It's like my uterus is pretending to bleed. "Am I going to shed my lining or not? Fooled you!!!" And I'm not laughing. The bleeding is more annoying than anything. I've dealt with it before - I bled for more than a year straight.

The bigger issue? The pain. Now, as I said, I recognize this pain. But instead of being negative and focusing on the facts of what will happen if the endometriosis is back (that's my "pretend" diagnosis because it can't be officially diagnosed without surgery, and I said, "No Thank You" to that). This time I'm going to refuse to give up my dancing no matter how much it hurts to stand up. And I'm going to keep living my life. Duh. My lungs are healthy. I'm not going to stop going at this pace just because of some excruciating pain that made me nearly couch-ridden.

No. Right now I am being positive. I am certain this pain isn't the same pain. I'm just afraid that it is and my brain is tricking me. And if my brain isn't tricking me and the pain is real and the same pain, it's just because the IUD hasn't had time to affect my hormones yet.

I have hope that the IUD will work. This pain will go away and the bleeding will stop. On a completely unrelated note, I also have hope that I will fall back into a normal sleeping pattern and I will be much less tired. And then I will be able to work more on my project - the world's best quilt.

I'm going to focus on working on the quilt and dancing and the kids I babysit for and ignore all pain and bleeding. Ready. Set. IGNORE!!!

Still Not "THE" Post

2010-01-30T20:51:00.003-06:00

That's right. This is not the positive, humorous post that I am still planning to write. This is a rant. This is my frustration spilling out onto my blog because I'm tired of crying on the phone to my dad.

I have endometriosis. And a bunch of other things including fibromyalgia. The fibro is bothering me today and kept me from going to a dance practice I really wanted to attend. So instead of dancing I sat on the couch watching stupid television, and I took a nap. And now I'm out of stupid television so I am watching HGTV on my Saturday night because I am JUST. THAT. COOL.

My insurance company has denied the shot that keeps my endometriosis under control. We appealed and they denied it again. And boy am I pissed. And worried. And crying. I found out last night while at a dance and I just wanted to burst into tears. But how do I explain that I want to stay in menopause despite the knee issues and the Brillo-Pad hair on my chin. I don't have the pain. The all-consuming keeps me on the couch pain. I remember that pain. It was not a good time.

And now I'm having all sorts of issues with the fibro, and I'm scared the endo will come back because that might be the only option I have. To stop getting the shots and do something less effective to prove that I need the shots. AW, MOTHER FUCKER.

I want ALL the pain to be gone. I have a better time with my lungs than the pain. I feel like I was born with the lung problems and they are my "destiny," but the rest of this shit is just that - bullshit I don't need.

And I think my rant is going to end there. I might just go to bed because I'm so frustrated with being frustrated. I'm frustrated with dealing with pain. I'm frustrated with getting through things. I just want it all to be a little less painful. Thank you and goodnight.

Meds, Meds, Meds

2010-01-30T07:35:00.000-06:00

This isn't the original post I wanted to put up, but this will do. I need to make a list of my medications- I have a general one, but in the last few months I've had several changes. There are a couple I don't know the generic name of OR the dose. And for those of you who know me, I've known all my meds by heart since I was about eight.

There is also a part of me that is a little embarrassed to post my medications, doses and what they are for. Me, the giant "I AM DEPRESSED AND IT'S OKAY" person, is ashamed that I am mentally ill. I'm embarrassed because I know people will judge me for the psych meds I am on. But I need to feel secure that my meds are mine and my choices and make me feel better and it's no one's business.

And so for now, my list of medications will remain my business because maybe I'm not quite ready to shout from the rooftop all my problems. And because do ya'll really care? I have one friend who asked to know - so maybe I'll make a list for her and a list for me because I need the practice - I know I NEED to know all my medications. It's for my health!

Back At It... maybe

2010-01-29T12:37:00.003-06:00

So I'm back. Where I was, I don't know. But I think I'm back. I might be back and able to blog again. I'm at least going to try. My goal for today is to post something important. And then maybe I'll have other things to say in the near future. Hopefully.

In the meantime, I would like to say, I have an amazingly cute nephew!!!

Is This Irony?

2009-12-13T00:38:00.003-06:00

I was sitting here at my desktop watching Season Five of "Mad About You" and playing Minesweeper. It's pretty typical of me when I'm at my desk. I watch TV and play Minesweeper or Solitaire - something mindless so I can pay attention to the show and think.

And I was thinking about two people I know who would be a really cute couple. And I thought, "Yeah, well lucky for them they are both healthy." It's that whole - "No one wants me because I'm sick" thing. And I know I'm not the only one who suffers from it; we're the ones who have been rejected because our family is crazy or we are too sick or our left little toe is too big. And all we want is someone who understands.

So my thoughts naturally went, well maybe I should only date sick people then because we would understand each other. My next thought was, "Yeah, but I don't really want to deal with that. I have enough to deal with."

I am the people I hate.

What?

2009-12-02T22:13:00.002-06:00

What is wrong with me?

I really want to be the glass-half-full person, but maybe I'm just not. Maybe the things that have gone wrong or have been bad will continue to eat me alive and I'll never get out of this mess.

But I want to be happy and have positive things to say. WHERE ARE YOU, POSITIVE THOUGHTS?!?!

Learning Curve

2009-11-29T23:07:00.001-06:00

My life has a strange learning curve. One moment I think I'm going along fine and then BAM! I'm sad. I'm obsessed with picking at my face. I'm a mess.

I'm angry about it now. I want to change. I'm going to change.

It may take a long time to get all these confusing things figured out - and I may just have to learn to be patient, because that is one thing I definitely am not.

And so begins (or continues) my journey to learn how to live in my own skin. How to own up to all the crazy in my brain, the illness in my body, and the sorrow in my heart. I'm going to learn how to live with it all.

-- Post From My iPhone

Thankful and that Jazz

2009-11-27T22:05:00.002-06:00

For the first time in my life I didn't spend Thanksgiving with my immediate family. Not like Thanksgiving was a huge deal in recent years. I don't remember the last time we went all out and got dressed up and used the good plates and had way too much food. I've never really been to a Thanksgiving with extended family - and if I have, I don't remember.

So this year, I was disowned by my mother. I worried for months about Thanksgiving and Christmas. Honestly, I'm still worried about Christmas because I don't have definite plans. But that is a different story. Today, it's all about Thanksgiving.

I spent Thanksgiving with my best friend Sarah Lynn. Sarah Lynn and I have been best friends since Kindergarten. She's possibly the best person on the planet. I arrived Wednesday evening at her apartment. We stayed up late looking through high school scrapbooks and catching up. Her boyfriend, Chris, awed me with his cooking abilities. Things I would never dare attempt - like a cake from SCRATCH. It's all boxes here, baby.

Thursday morning I woke up un-Godly early as usual and had time to contemplate the looming events. I sat at the kitchen table sipping hot chocolate wanting to document that exact moment. I was so excited to go to a REAL Thanksgiving. One with lots of people and food and laughing and things that seem much more normal than the way my family works.

We attended two Thanksgiving dinners - and I can't put into words how they made me feel. So warm and loved, even though it wasn't my family. It made me elated to partake in the festivities, and a little bit sad because my family is nothing like that.

This year I have so much to be thankful for - my health, friends, family members who haven't disowned me, a good therapist, a new and wonderful primary doctor. Not to mention antidepressants.

But mostly, I am thankful for my fabulous best friend, her boyfriend, and the hospitality of people who aren't related to me.

Happy Thanksgiving, ya'll!!!