Learning To Live

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...

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'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 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...

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.     

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...

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 t...

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.

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 ...

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 ...

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...

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, Bea...

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 definitel...

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 ...

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....