Wednesday, September 29, 2010

Trading Genes

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  think it's everything combined making me dizzy. 

As much as I really wanted the oxygen, I also DIDN'T want it.  Because, honestly, who wants to have to have a huge Big Ugly in their dining room so they can breathe at night.  And there's a giant oxygen tank, too.  And I have to get used to wearing the O2 at night again.  And the best way to do that?  Tape it to my face for the first few weeks until I'm used to it and won't take it off in my sleep.

I wanted the O2 to work immediately and to stop feeling tired and to get all sorts of things done and conquer the world this week, when in all honesty, I still need naps.  Not as many naps - but I need naps.  And that's frustrating for me. 

And to make everything that much more frustrating, I lost my favorite nurse.  Seriously, world?  What did I do???  So I have no idea who my new nurse will be, but she/he will not be as cool and fun as Cindy.  I love her to death.  There is one good thing about Cindy not being my nurse - we can be friends without it being weird now. 

Don't get me started on the dating stuff... I just want to give up altogether, but I guess I'll keep up with the online stuff for laughs and giggles. 

Today I have to do something to make me smile.  Because I need it.

Tuesday, September 28, 2010

Pumpkins and Apples

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, Bean!!!  Let's do this every year!!!

Monday, September 27, 2010

The Return of Big Ugly

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 definitely less noisy.  AND I'm sleeping better!!!  I can take a one or two hour nap and feel refreshed.  I don't need four hour naps! (At least in the last 2 days... this is Day 3 of BEING AWAKE!)

And now I need to know what to do with all my extra time.  There are other reasons I have extra time, which are sad... and I'm going to have to find ways to fill my time.  For now, I am going to make myself a list to remind me how to pass the time.

1. I will walk 3 times per week - at least!  When it is nice out, I will walk outside.  When it is not, I can walk on the treadmill or play the Wii.  Hopefully this will help my lungs and with weight loss.

2. I will finish my quilt.  I will finish THE DRESS OF DOOM that I'm knitting, and I will finish the scarf I'm working on.  Then I will knit other projects.  -most of this knitting will be done while watching TV/Movies-

3. Blogapalooza! I will blog lots.

4.  I will write in my journal and my Letters to Luca journal.

5. I will host movie nights on Tuesdays... well Mondays or Tuesdays???  I don't know - this is a work in progress.

That's all for now - except my doctor wants me to find somewhere to volunteer or something to do.  Any ideas?

Monday, September 13, 2010

Diary of a Trip Home

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, write and maybe knit a little.

I'll update again later!!!


-- Carla's on the go! Post from her iPhone.

Tuesday, September 7, 2010

Rants and Revelations

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 about airport security and how it really bugs him when someone in a wheelchair can get out to go through security.  He went on to make more jokes about the wheelchair and how anyone can use one if they want.  I was so mad I nearly cried.  I wanted to heckle him, but he had already turned the audience laughing at the first person who had heckled him. 

He made me doubt myself.  I don't often care what other people think of me - especially strangers.  I don't care if they judge me for getting on the plane first or riding in a wheelchair and then standing up to shop.  Have you ever noticed how hard it would be to see things or reach things while you're in a wheelchair?  I have. 

He made me doubt myself.  I started to think about whether or not I really need the wheelchair now that I'm doing better, and I started to wonder if my using a wheelchair is an injustice to all other wheelchair users - people who can't stand up to shop or walk to their seat on the airplane.  He made me feel little and unworthy.  He made me feel like less than a person.  And then as I sat there I thought about how the people who can't get out of their wheelchairs would feel.  I just kept getting more and more angry.  And I didn't find the rest of his show funny either - probably because the first part made me so unbelievably angry. 

One reason it made me feel so horrible was because what I experienced in the morning. 

The Axis Dance Company made me feel like I could do anything.   When I think back on it I want to feel that again.  As I watched them dance I realized that I can do whatever I want.  With my dancing-  I can adjust to my level.  I will salsa at my pace and I think everyone should accommodate me.  I don't know if I can get a large group of salsa dancers to do that, but maybe I can.  I thought I should start a ballroom dance group for people with disabilities or older people who want to dance at a slower pace.  I have a few dance instructors in mind who might be willing to help me with that.  I'm thinking of leaving the position of secretary - or at least delegating the work to someone else so I can work on my life goals more. 

The dance made me feel like getting my place completely organized is within reach, as is finishing my book.  I want to advocate for patients, or rather teach them to advocate for themselves - and I have a few friends I know who can help me get started with that. 

So all day I was on a high from that performance.  I felt powerful, strong, and self-reliant - despite the fact that I was relying heavily on my friends to push my wheelchair.  But there were several times I got out to shop for Christmas gifts and a couple things for myself. 

And then the comedian crushed my soul.  But after a long talk with my mom, I have realized the comedian was uneducated and discriminating.  He is not the type of person I would want to be around.  And maybe my friends laughed at his jokes, but that doesn't mean they don't care about me or want to understand.  They can't understand.  Living this way can be incredibly frustrating at times - like yesterday when I had to sleep all day - but it can be incredibly rewarding too. 

This is just another example of how I know my CF is a gift.  I am able to see the world through the eyes of others, and have compassion for all types of people.  Even the people who makes jokes at the expense of the disabled - I have compassion for him because he has no idea what he is really making fun of. 

And after I think about the comedian and go back to the Axis Dance Company, I feel empowered again.  I want to work towards helping more people.  I want to dance as much as I can.  I want to live my life to the absolute fullest.  And no one should or can make me feel otherwise!

Monday, September 6, 2010

Day 3 in Seattle

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.

Saturday, September 4, 2010

Waiting in an Airport

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.

Hotel Royalty

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. And these friends are willing to push me around again so I can keep up with them and see as much as possible.

I can't wait for the fun to begin - and maybe that's why my body woke me at 6am. No matter what time zone, I wake up at 6am. Big pain because I came in on a late flight and didn't get to bed until after two. Hopefully after writing a nice, long blog entry I'll sleep like a baby for a couple more hours. I don't want to wake my hosts at this ridiculous hour so I can eat and then go right back to bed! Because that's what I have to do at home when I stay up late - nap during the day.

I can't wait to spend 10 glorious days with some of my best friends in the world E, J, M, P, K, and Gancl. Don't worry, that's her nickname.

But for right this moment I need to calm my excitement and drift back to sleep at Hotel Royalty - where I really feel like a princess.


-- Carla's on the go! Post from her iPhone.

Wednesday, September 1, 2010

Off With Their Heads!




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...


Making the Serial Killers Mad

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.  See my craft blog for more on the DRESS OF DOOM. 

So now I'm driving to work.  I end up behind a car with a plastic head in the back window - seriously.  It looks like it could belong to a manequin or a crash test dummy, and it's definitely not a babydoll.  It's just a head rolling around in the back window.  I find this incredibly amusing, so at a stop light I pull out my camera and snap a few photos.  Then as I'm driving along I realize that the guy in front of me is taking photos of something behind him.  Hmmm.  I realize it's me, so I wave - grungy bandana and all.  Then he's sticking his arm out the window taking photos of me... and then he turns right and completely stops his car as I drive by to keep taking photos.  HE STOPPED IN TRAFFIC TO KEEP TAKING PHOTOS OF ME.  And because I'm related to my mother and I hear her jump to this conclusion all the time, my first thought is, "SERIAL KILLER!"  Oh my god, I just pissed off a serial killer.

I panic.

And then I calm down a little and assume it's NOT a serial killer.  But what the hell?  Is it an undercover cop?  With a head rolling around in the back window and a little blue camera?  And no laptop or uniform?  No.  So, it's just a creep... Did I do something wrong?  I just took a couple photos - and for all he knows I could have been taking photos of the sky.  Duh.  Is that illegal?  Maybe not the best idea while driving, but it was at a stoplight.  So, he's just a creep... a creep with my face and my license plate.  Is he going to report me to the cops?  What will they do? I can tell them he stopped traffic to keep taking photos of me and was taking photos of the car behind him while driving.  That's definitely worse than the few photos I took.  Is he going to track down where I live and follow me for the rest of my life? 
Is he a serial killer?  Oh my god, I pissed off a serial killer.

I panicked just a little.  All before 8am.

THAT made my morning interesting.  Too interesting.  I have his license plate just like he has mine... But if he's a serial killer, I don't think that's going to help me much.  Might help the police though.  So I'll print off a photo and put it somewhere...

I arrived at work a little late because of traffic, and took the baby on almost an hour walk - which is perfect for me because I need the exercise.  Perfect for the baby because it entertains him.  I love taking photos of things on our walk because I love to take photos, but this morning I thought twice about it because you never know when you'll piss off a serial killer. 

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