Wednesday, October 28, 2009

Surfing the Internet

I've spent a lot of today desperately trying to find where to get my H1N1 shot. In case you don't know, because I have cystic fibrosis I can not get the nasal vaccine. Mine has to be the shot - which is even more impossible to find than the nasal one.

I get distracted so easily - like I think it's time for me to go turn the baby so hopefully he will go back to sleep. I am babysitting.

Anyways, while I was looking for the H1N1 shot, I was also browsing the internet. Checking up on blogs I haven't read in awhile, facebook stalking people I haven't had contact with in way too long. Most of what I read was written by CF friends. People I don't know in person, but who I don't think I could live without.

We talk almost daily - at least leave little notes for each other on Facebook. I love these people. They give me suggestions on how to feel better, how to get through to my doctors, how to live my life. And I like to think that my little suggestions help them too.

I saw a trailer for a documentary about a girl with CF. It's called 65_RedRoses and follows her journey waiting for lungs and receiving them. It received numerous awards at a Canadian film festival, and I can't wait to see the film for myself. I have been reading her blog for a long time and I wish my blog could be more like hers. I wish I weren't too lazy to upload daily photos - of myself or other things. I tired it for awhile, and then my life got in the way.

I suppose it is a good thing when I blog less because it means I am out living my life. I tend to blog more when I am sick and stuck next to my computer. Currently, I am not sick *crosses fingers*.

I have been so healthy since, well, since my mother left my life. I have so much less stress and more joy. I have more joy staying at home and watching TV. I have more joy running errands and going to the grocery store. I have joy doing laundry and dishes. These were things I couldn't do physically or mentally (I'm actually not sure which), before my mother left. I think I spent so much energy trying to make my mother happy, I didn't know how to make myself happy. And now I'm happy - and much healthier.

And I think that's all I want to say for right now.

<3 Carla

Thursday, October 15, 2009

Blind, Deaf, and Legless

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 to fix it already!), and I will go blind and lose my legs. I'm blind and legless.

I go to the phone to frantically try to get ahold of my dad because he can always calm me down and tell me how to fix my problems. After an hour of trying, I call my brother. He is brilliant, but I think I interrupted his studying, which can confuse him. And he came up with these gems. First he was confused when I told him I am going to end up blind and legless. I yell, "DARIN! I'm going to go BLIND! And lose my LEGS!!! I won't be able to watch movies, or knit any new patterns. I'll have to keep knitting the patterns I have memorized over and over. And I won't be able to dance. How can I dance if I have no legs?" And he goes, "Well, can you see right now?" I'm being melodramatic here. I'm afraid that somewhere in the future I will go blind and lose my legs, and he asks me if I can still see. YES.

And then my sweet, wonderful brother says, "Carla, you're probably going to go deaf from antibiotics before you go blind or your legs fall off." OH GOOD. Now I'm Blind, DEAF, and Legless. I can't even listen to music anymore - or talk to any one! Oh My God! I'm going to be stuck with my own thoughts for the rest of my life. THAT'S THE SCARRIEST THING THAT HAS EVER HAPPENED!!!

Wait, back up. My brother thinks that when my diabetes continues to be out of control my legs will just FALL OFF? Hilarious. I had to remind him that a diabetic loses sensations in the legs - neuropathy - and then usually they get infected and have to be amputated. They just don't FALL OFF. But it's funny to think that some day I could be dancing and my leg just falls off. So I hop on the remaining leg until it falls off, and then I either find myself a wheel chair, or just lie on the floor and wiggle around to get places. Which might be hard if I'm also blind and deaf...

I can see myself on the floor with my hands above my head wiggling, trying to get somewhere, not even sure where I am to begin with. But I keep wiggling. Wiggle Wiggle Wiggle. Imagine it. It's the thing that's made me smile the most today!

The other option my brother gave me - after reminding me that they can fix the hearing problem with cochlear implants, the vision with transplant of some sort of micro chip, and if my legs fall off I can get those cool legs for running. Then I can run really really fast - after I have a lung transplant. My brother said, "Well if they're going to do that, they should just take your brain and put it in a robot!"

And I said, "JUST LIKE DARTH VADER!!!" And I proceeded to breathe heavily into the phone, demonstrating what an awesome candidate for a full-body life support system I am. And I'd get a cool cape, too. And I could be a SKINNY robot. Well, a well-proportioned robot - the size I used to be before I gained all this crappy weight.

Which brings me to one of the reasons I'm so depressed. I hate this extra weight. And I'm sad about my mom. And sad about high school. And sad about the time I lost the school science fair in 4th grade. I did my project on inhaled DNase. I was in the clinical trial and therefore my science project was very boring compared to the kid who taped two soda bottles together and made a tornado.

I was excited to find out that ALL FOUR of my podcasts are up on CFvoice.com - too bad I can't listen to NUMBER 2 because I have to LOGIN - and they change my password on me. I can't choose my own password to the site, because it's a pretty lame site. I can't listen to the podcast I recorded. It's ME. MY PODCAST. And I can't listen to it because I don't know my own password. Of all the ways to end my day - listening to myself be the worst story teller in the world is humorous, but I can't figure out how to listen to the one where I talk about my parents until tomorrow. I better hurry, though, because I have no idea how long it's going to be before I'm Blind, Deaf, and Legless.

Tuesday, October 13, 2009

Happy Birthday!!!

First, a very Happy 24th Birthday (today) to my best friend since Kindergarten, Sarah Lynn. I love you!

One year ago tonight I was helping another best friend push. And push and push and push. She pushed herself to the very limit, and I'll never know how she found the strength to do it. I don't think I could have.

While I didn't actually witness the moment of birth of my (honorary) nephew, Luca, just being there for the whole experience was something I will always treasure. I know that my body isn't strong enough to carry a child (not to mention that my mind isn't healthy enough to be without my happy pills), so being around the strength, pain, and most importantly the love of the process of childbirth was a true gift.

I wandered the halls of the hospital that night, waiting for Chris, Kyra and New Baby Luca to return from the recovery room. It was so quiet - but a happy, peaceful quiet. I've wandered many halls of hospitals late at night. I loved being on the maternity wing. When I'm a patient in the hospital, wandering around always has an eerie quality - it's the hospital, all the sick people. But on a floor with new babies, there's a little bit of magic in the air. I soaked up all the magic I could because I knew I'd never be there to deliver a baby, and I'd probably never get the opportunity to become an Auntie biologically (with just the one gay brother and all).

A brand new baby. I can't believe Luca was born a year ago tonight. Just thinking about it I can feel all the emoitions of that evening rushing back. The excitement of bringing a new life into the world - the opportunity to mold a person and help a little one explore his surroundings.

Love. That is the only emotion I felt as I held you for the first time, Luca. One year ago tonight you came into my life, Mr. Big, and I'm so happy you finally graced us with your presence. This has been one of the best years of my life - you always make me smile. And now you know when you're funny, and you laugh at yourself. And that only makes me laugh harder.

We celebrated Luca's first birthday over the weekend - and again, it was one of the best experiences of my life. Watching you grow, learn, and play makes me realize the importance of little things and the insignificance of certain bigger things.

I love you, Luca! Happy 1st Birthday!!!

Love,
Auntie Carla

Wednesday, October 7, 2009

Rainbows and Lollipops

Tonight as I was driving home I was flipping through my iPod to find a song I wanted to listen to. Sometimes I'm really picky about my music. I have to be in the right mood to listen to certain songs, and some songs I get really tired of. But there are some songs I very rarely get tired of. And there are some sad songs that I almost never skip over. I can listen to them when I'm in any mood. Tonight I came across, "Concrete Angel" by Martina McBride and I played it. I had skipped about 30 songs before I finally settled on "Concrete Angel." I listened to it, and I finally understood why it has always been one of my 'any mood' songs. It touches me somewhere deep in my heart and I think the song has helped me through more than even I could know.

The lyrics that are particularly relevent are:

"The teacher wonders but she doesn't ask,
It's hard to see the pain behind the mask;
Bearing the burdon of a secret storm,
Sometimes she wishes she was never born;

Through the wind and the rain,
She stands hard as a stone in a world that she can't rise above;
But her dreams give her wings and she flies to a place where she's loved.

Concrete Angel"

High school was my secret storm. Well, I guess I've always had a secret storm, but my secret storm became a tropical depression, and then a full on hurricane during high school. When I think about things - how angry I was, the freshmen I beat up, the best friend I screamed at and beat with my nalgene - I wonder how my teachers didn't know something was wrong. Maybe they did think something was wrong, but like in the song, they never asked. That's what I like to think because I was in so much pain and trouble, it's hard for me to conceive that no one noticed.

When I think about high school, I don't know how I got up in the morning. I don't know why I wasn't suicidal. I don't know how I went to school every day - except for the fact that it was an escape from home. And I don't know how I went home at night - except it was an escape from the hell I lived while at school. All I know is I spent a lot of time at extracirricular activities - and I was happy there. Forensics, Marching Band and Swing Choir probably saved my life. I had places and people with whom I felt safe. Once I got to be a junior, I spent a lot of time driving around in my car, and I was happy there. I spent time at a household as crazy if not crazier than my own, and I was confused there, but at least I wasn't being attacked.

I know I put on a very brave, false and sometimes scary mask. I was always healthy if anyone asked. I was always happy. I was always perfect. That's what I thought I had to be to get out of my hometown and end up in my college town. And I certainly had my eyes on the goal. After my sophomore year of high school I started counting down the days until I left for college. I made a list of the things I wanted to take with me. I saw college as running away forever, and I tried to take everything with me.

It was one hell of a hurricane, and after getting worse in college, it eventually got better. It went back to being a tropical depression and eventually just a storm. I've lived with my secret storm for so long, now that I'm escaping I'm not really sure what to do.

My mother is my secret storm. I don't know how else to put it. She has always caused me a lot of pain and grief, but at the same time I love her very much. There are times when we have gotten along so beautifully I called her my best friend. But then there always the sudden cloud bursts of anger that are so hard to get through.

One day, it was so bad I cut my wrist while I was waiting for the kids I was babysitting to finish their swimming lessons. I couldn't stop crying. I was 19 and thought I was done being controlled. I remember the pain so vividly. I tried to hide my pain from the kids and their mom, but the mom saw right through me. She knew some of the problems I was having at home, and she sent me home early because I just wasn't up to sitting any longer - because of my "allergies."

And now that Mom is gone, I'm having a really hard time convincing myself that the mother I love and the mother who controlled me and abused me are the same person. I am trying to rationalize and say, "Can't we be happy for Christmas like we always are, and then go back to having no contact until the next year? It works for a lot of families!"

But I know that it doesn't work that way. While Mom might be able to put aside her feelings and not feel anything, I do feel things. And feeling happy with my Mom for one occasion would make me wonder why she can't be happy and "normal" all the time. Because that's not who she is. She is my mother, and because she refuses to accept that she is a problem or seek help for that problem, this is the situation I am in. I have accepted that. I was angry, and sad, and went through all the stages of grief - even bargaining, and now I am much closer to acceptance. I accept that my mother is who she is and my secret storm is no longer secret - and not really a storm anymore.

I think I'm at that point when I get to see the rainbow.

Falling Apart

I didn't talk about yesterday here, but yesterday I was Wonder Woman. I babysat (got off early, which helped), went to the hobby store to get Halloween decorations, walked 1.5 miles on the treadmill, decorated my place, did the dishes, took out the trash, and generally was awesome.

Today I am falling apart. I babysat, which went well, except for the coughing spell from the study drug I am on. I will talk more about the study drug later when I have made up my mind what I am going to do about it. That is one issue that weighs heavy on me tonight. I want to do the drug perfectly - like I did in the Cipro study, but this drug causes coughing fits. Not normal coughing fits. These are doubled over, my lung being hurled from my chest and into the next state kind of coughing fits. Then after I retrieve my lung from the next state, the coughing starts all over. And NOTHING helps. Not water. Not food. Not cough drops, nor steam nor any other thing you can think of besides the dreaded - dun. dun. dun: COUGH SYRUP. Cough syrup is sort of a forbidden thing among CFers because the goal is to cough out the gunk. But the only thing that stops my industrial sized cough is the industrial strength cough syrup.

But enough about that. I said I wasn't going to talk about it until I made my decision. But the coughing. The never ending cough that lasts all day and night and makes me cough while I'm coughing? That cough? It gets in the way of my life. Like today. I feel like CRAP. I wanted to go to my mandatory meeting - but I didn't. I wanted to walk on the treadmill - but I didn't. I wanted to not lie on the couch in pain all night - but I did.

And maybe some of this is because I had to skip accupuncture this week. I'm a big fan of my accupuncture and it's real just like fairies and Santa Clause. So don't show me any studies you found about how it really doesn't work. It does.

Part of me - well, most of me, can't wait until my brother gets here on Friday. He can do the laundry, and get milk and tomatoes, and help me clean.

Days like today make me feel like I'm falling down a never-ending staircase and I can't find my footing. Every now and then a foot will land correctly, but I can't stop the tumbling. When my brother or my dad arrive it stops the tumbling and allows me to step off the staircase. It's a little savior.

And I sure can't wait until that savior arrives on Friday.

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