Learning To Live

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?

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 e...

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 definit...

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 pho...

 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...

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.