Learning To Live

I want to return to blogging regularly.  I was reading things I wrote when I first started this blog, and I had some good things to say.  I think I have more good things to say but less time to write them down. So I'm going to further my multitasking efforts.  I'm going to ride my stationary bike and blog at the same time.  I ride my bike every day, and usually knit or fold paper while I ride and watch TV.  But now I'm going to up the ante and get a table that goes over the bike so I can do things on my laptop while I bike.  I may not be blogging every day, but hopefully a few times a week.   And I'm working on that post about the Vertex VX 809 trial.   

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...

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...

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...

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 ...

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...

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...

It is way too late for me to be up. This probably won't be cohesive, but here goes! Today I am argumentative. I'm pissed. I'm pissed at cystic fibrosis. I'm pissed that it has taken friends of mine away from me. Today I desperately pounded out an email to my dad: "I feel sad because nothing fits right anymore. I can't believe I have just one pair of jeans. And then I have some yoga pants, but they are more "I wear these around the house because they make me feel like I'm dressed." I just want to go spend money. Arg. I have the dreaded "shopping makes me happy" thing Mom has. I learned that Craig from Cedarburg died this past week. He was a senior when I was a freshman and he had CF. So I'm freaking out. And a blogger I follow, also named Lauren, died this week. She was FINE in June, and now she's gone. She was blogging about how she'd gotten her FEV1 up from 47% to 50 something %, and that's about where I f...

Today was a bad day. I suppose I enjoyed knitting and watching 2 movies and many shows on my DVR (GLEE!), but today was a bad day emotionally. Every morning I wake up around 7:30 and have breakfast. Banana nut cheerios. I love them. I hate starting my morning without them. But every day for about the last week my blood sugar crashes at 11am. Crashes to the point where I'm shaking and wobbly and can't think straight. So I have an early binge lunch. Every time it happens it scares me. But I have been logical. After the first two times it happened I changed my insulin - gave myself less with my breakfast, but my blood sugar still plummeted. So I gave myself no insulin the next day. And crash again. I decided I had gone the wrong direction. I gave myself a normal amount yesterday and a little extra today. Crash and Crash. So in my head I am panicking that my diabetes is out of control and I'll never be able to fix it (see the scientific way I went about trying t...

Tonight was a fun-filled evening, and I had a pretty good day, but I thought I'd take the opportunity to fill in my thoughts on certain aspects of my Friday. 10:30 am: Wake up "Shit, I have to leave in an hour for my appointment." 10:45 am: Nurse calls "Shit, I don't have time to eat breakfast." 12:15 pm: In with therapist "Shit, I have nothing I want to talk about." 12:30 pm: Complaining about a person I'm not getting along with to therapist "I can't believe he just suggested that I 'teabag' her... but the idea of her receiving random tea bags in the mail everyday is amusing." 1 pm: Arrive home "Shit, breakfast time and then nap." 4:30 pm: Wake up "Shit, I don't think I can get out of bed. Shit. Must take shower, get dressed and be downtown in 1.5 hours. Shit. I really don't think I can get out of bed. Must take Tylenol. Must get out of bed. Ow." 6:10 pm: arrive late, walk from Union to...

I am reaching for something that isn't there. I'm grasping at straws. Climbing a never ending stairway. "Rayando el Sol." "Rayando el Sol" is the title of my favorite song by Maná - my favorite of all the Hispanic/Latin music, and right up there in my favorite bands of all time. If I didn't love so many songs, I could say with more certainty that "Rayando el Sol" is my favorite song. Translated it means something like reaching or scratching for the sun. I've been meaning to write this post for a long time, but I haven't had the words. I still don't know if I have the right words, but I'm going to try. So grab yourself a candybar, sit back, and get comfy because this is going to be a long post. It's one of those posts that means a lot to me - whether or not anyone ever reads it. I'm not going to give up. I'm not going to stop hoping that someday people who don't have CF will understand me. I'm not goi...

Hello everyone. First, I would like to announce that TUESDAY is $5 TUESDAY - meaning we try to get as many $5 donations as possible. You can donate HERE . Or click on the box at the right. 2nd, the last two days have been kind of rough. I've spent most of both days sleeping, except for last night when I couldn't sleep and I spent the night watching "The West Wing." These last couple days I've hated being alone. Even more than usual. I've been in a lot of pain that can't be explained, and I think I really would like some company to keep my mind off of it sometimes. That, and I'd like someone to cook for me since I have lost 10 pounds in the last two weeks. Did I mention that? Well I have now. So this evening I broke down and bought out the Panera so that I can have lots of yummies to eat over the next several days. Lots of yummies with lots of calories. I hate losing weight and I hate trying to gain weight. Both are hard. The Dance Benefit f...

Tonight was the CF Foundations annual update thingamaggiger. I learned not much new, except who I should call and complain about the adult clinic to. But last week, it was announced that VX-809 is now in phase two clinical trials. Which is cool, but I decided I want some of that shit now. So my plan is to acquire some. Now. I will keep you posted as to how this goes. After the update thingy, Lauren (my beautiful co-team leader for GREAT STRIDES), Erin (our beautiful nurse from the hospital), and I went to Perkins. And since Lauren is the greatest, we convinced our waiter to buy a button. If Sean can buy a button, than YOU CAN TOO!!! :-) Buttons are SUPER fun. I really need to find another one that says, "Your Smoking Makes My Lungs Hurt." I loved that button - but mine broke. I found it at a Flea Market type thing in my hometown, and now, thinking about that table of buttons is making me drool. Some where I have three buttons and each one says "HO." I lov...

I'm selling buttons. :-) Here are photos of the designs (I know the photos say 10 in a pack... those are the only photos we could get of the buttons. I'm selling them individually). $10 per button - all goes to the CF Foundation!!! Let me know if you would like one (or two, or 10 or 30!), and I can mail them to you! Thanks and Love, Carla

On Friday I am leaving for San Jose. I'm so excited for my first vacation with just friends and no family - not that I don't love traveling with family, but I've never traveled with just friends. I'm basically done packing, and tomorrow I do my podcast interview, get my Lupron shot, maybe stop by to grab a photo with Lauren, and then rest until dinner and games night. Yes, folks, the website CFvoice.com which is sponsored by Novartis does podcasts, and apparently I am going to be featured one month. There will be 3 or 4 podcasts where I talk about my CF - each will be about 5 minutes long. I don't think it's a huge deal, but I do have to go to a recording studio to do this. I'm excited! While on Vacation I will be posting again on http://dancing65rosestravel.blogspot.com - go check it out! I'm afraid time is short this week and I'm not going to get all the things done I want to get done. I want to visit Lauren and Chris, Kyra and Luca, and get...

I think lots of thinks. And sometimes my thinks get all kinked and then it's hard for me to think. This is one of my favorite montages ever. It was made by the mother of a little girl with CF. The mom is an amazing person. She and I email regularly and I love the advice and hope she gives me, and I only hope that in seeing me still alive at 22 it gives her some hope for her little girl. I may be sick, but the road for Emily hopefully will have fewer bumps. More treatments to lengthen the life of a sweet little girl. I think that if you are conflicted at all about the Great Strides walk or the need to raise money for Cystic Fibrosis Research, just watch this montage and you will see the pain this disease causes. I wish I could do an entire montage to show you how much pain my parents have been through. I wish I had photos of them when I have been in the hospital, when they are arguing with doctors trying to get me the best care. I wish I had a recording of my favorite teache...

Good evening Ladies and Gentlemen. Welcome to our show. In this evening's production of A Rant, the part of The Crazy Woman will be played by moi, your host. The rank of the day is on dating. I usually rant about my lack of it, but tonight I really don't care so much about that. I really am irked by the abundance of dating-like-things going on around me, and yet no one wants to call it dating. There is no middle ground. Either you are dating, or you are not dating. It's like when recently one of my friends said she is "sort of sleeping with this guy." I asked her if she is or if she isn't, because this is a pretty black or white area. Either you have fucked him or you haven't. And if you don't know you have a whole different set of problems. I think dating is like that. More of an on-off light switch than a dimmer. You can't be "dimly dating" - or maybe that's all that I ever do. Maybe that's my problem. All my relatio...

Tonight I am working on things for the GREAT STRIDES walk in May. My team has multiplied and grown so much in the last year it is unbelievable!!! Last year we raised just over $6,000... and THIS year, our goal is $25,000 - and we're right on track to meet that goal!!! If you would like to help us reach our goal you can donate HERE . Thanks, and soon you'll be seeing some things I've been working on for HOURS!!!

Tonight I am sentimental. I am missing a great number of people who have influenced my life. Some are gone and are now angels, and some just live too far away, and some I saw a couple days ago, but I want them to know how much they mean to me. I found this photo, and it made me miss college. It made me miss the days when I lived in the dorm. It made me miss all that energy I used to have. And this photo came from a CF Mom. You have no idea how much I miss my pediatric doctor. This is a photo of a real doctor. A doctor who loves what he does and who loves his patients. I miss that. It takes a village to raise a child, but it also takes a village to help me get through this fight. And tonight, I feel like part of my village is missing. I know my angels are with me, but I wish sometimes I could give them a giant hug. Tonight I am making my montage for 2009 Great Strides. It will be called, "My Village." I am including photos of all the people who have helped me get wher...