Learning To Live

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...

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, wri...

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 ...

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.

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.

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. A...

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...

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....