Learning To Live

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.

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

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...

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...

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, an...

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. 

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...

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 ...

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 ja...

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 si...

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 c...

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 involv...

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 Fou...

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.  

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....

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 nurs...

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.  

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 chi...

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 ...

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...

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

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?