Thursday, February 25, 2010

A Crazy Life

My life has been crazy lately. And I still haven't blogged about the magical drug, and I'm planning on it, but I need a block of time first. And this weekend I'm going to a wedding, and all but a couple of my best people will be in town.

Today I took a big leap in my life. I found a salon on my own and had the courage to get highlights AND a trendy haircut.

Here is me with foils in my hair!




And my new hair! You can't see the highlights very well because of the lighting. But look at how Trendy my hair is. I have had the same hair since middle school.


-- Post From My iPhone

Sunday, February 21, 2010

Who I Am

I may not always know exactly who I am but I know who I am not.

I am not The Girl With CF. Your Friend With CF. That Person With Cystic Fibrosis.
Describe me any other way you want, but don't point me out as the one with CF.

Because I am so much more. Call me any of those other qualities.

Call me smart, brilliant, radiant, depressing.
Call me pretty, ugly, sweet, or even bitchy.
Nerdy, out-going, social, bubbly.
Honest, not honest, creative, aggressive.
Dependable, irresponsible, punctual, flighty will do.

Tell them I love children.
I love music and dance.
I quilt, sew, scrapbook and knit.
I'm a film buff. And I even love the bad ones.
Tell them I'm stylish, addicted to purses, and I love me lots of shoes.

I have red hair, or brown hair, or hair that gets cut once a year.
I have green eyes. And I always wear glasses because I'm too irresponsible to wear contacts.
I'm organized but not neat. Clean but not exactly immaculate.
I'm chunky, not-quite thin, not athletic.
Even stacked, easy, arrogant and selfish are better ways to describe me than to use my CF as a defining quality.

Tell them I am human.

First tell them who I am, and then tell them I've got a little bit wrong with my genes.

Sunday, February 14, 2010

Quilt In Progress

This is the quilt I've been devoting my time to. This is the front side. I'm currently pinning on the T-shirt squares and then will hand sew them on. And then I need to make the back, sew on those T-shirt squares, make a border, get some batting, and sew it all together. Then I need to decide how I want to quilt it. By hand, with clear thread I'm thinking. I just need to decide on a pattern.

Special shout out to Callie, Rachel, Janelle and the others who made me the banner when I was in the hospital. Shout out to whoever gave me the idea to make a T-shirt quilt (I think it was Sarah). And shout out to Christy's T-shirt quilt for showing me that a T-shirt quilt could be pretty.

And I just want to say how happy I am to be doing all this work on this quilt. The t-shirts have been in my closet for years waiting for me to make a nice looking quilt. And I'm so happy with how it's turning out!!!

Yay quilting!!!




-- Post From My iPhone

Saturday, February 13, 2010

For Eva

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 http://65redroses.livejournal.com/

I would also encourage you to read the whole thing. It's better than anything I could ever write. (Which makes my dream of becoming a published author all the more daunting.)

So here are quotes from Eva:

"you'd be amazed at what in the world can be solved with a good cuddle."

Here she is talking about her friends and family:
"they say it is easier to be here next to me and be aware of my condition than it is to stay far away and worry about how bad it is. they say it is harder to call and try and read between the lines of 'how are you' and 'just fine' than it is to hold my hair back."

I wonder if my friends and family feel the same way. Sometimes I feel them push away when I'm sick, and sometimes they are right there. It's complicated.

She writes my exact feelings, and it's eerie and comforting all at the same time:

"in fact i think thats part of it too.. rather than looking forward to a perfect future or wondering if things might ever get hard..I can personally guarantee that it WILL be hard.

but to make up for how hard it will be I can also guarantee that I will laugh hard, live hard and love hard.

my life is a rollercoaster with killer highs and deafening lows. but i come with advance warning. if you don't think you can handle it i suggest getting off now. it's going to be one hell of a ride."


Again, she is what I want to be:

"and i will not stop writing. i will not stop letting people in. i will not stop talking about what is it to be 25 and held back. 25 and waiting to live. 25 and begging for another chance.

please let me live again.

please let me walk. let me dance. let me breathe."


On Love:
"i believe, more than anything else, that LOVE is worth it.
the world is better with more love then less.
there is no limited amount of love.
it is endless.
limitless.
without borders.
why not love MORE?
harder?
deeper?
with everything we have?

what is there to be scared of?
even if rejected or lost or turned away...we still learn
there is no negative.

LOVE.

fiercely.
with strength.
passion
and conviction."


I often feel this way when I'm in the hospital:
"i felt angry that all these people visiting my room got to walk out and leave.
leave me waiting.
waiting for my life to start.
i'm sick of being on pause.
i want my fucking life back already!"


I think that's all the quotes I'm going to include tonight. Maybe I'll include more at a later date. But for now, I need a good cry.

My lungs are healthy (and I still plan on writing about why. I'm a little nervous about it because... well... let's just say it's "unconventional." And also, I want every CFer to have access to what I'm doing, but it's not possible right now. Hopefully it will be soon).

Anyways. My lungs are healthy, but other parts of me are not. I don't know how much more of the "other diseases" I can take. I'm okay with my CF - sometimes I love my CF because of the way it has shaped my life and who I am. For example, I tend not to take as many things for granted, and for that I am grateful for my CF. I'm not saying it doesn't suck. It does. But it also is a very big part of who I am.

The other crap I'm dealing with? I just want it to go away.

And I'd like to be able to stay awake like a normal person. Do you have any idea how tired I am of napping. Nap, nap, nap, food. That's how my days go.

Speaking of napping, it's way past my bedtime. And we all know how important my sleep is.

Please keep Eva in your thoughts. And read her livejournal. It's amazing. The link is http://65redroses.livejournal.com/

You have no idea how much I'm going to miss reading the thoughts I wish I could express. Maybe I will have to suck it up and become a serious blogger again. A CF blogger. An all those other things I deal with blogger. A human blogger. At least, that's the goal.

Goodnight

Friday, February 12, 2010

Mission: Ignore

The pain I'm experiencing is familiar. I've felt it before. Pelvic pain and lower back pain. It's not as bad as it was then, but it's the same. And it's the same in the way that I am starting to not be able to stand for very long. Back when I first had this pain we never truly discovered what was causing it. I was treated with a drug that put me into menopause, and the pain (and constant 'down there' bleeding) went away.

So, let's make this really long story a shorter one. The magical drug only had a few side affects like lactation, hot sweats, and Brillo Pad facial hair. After adding another med to help my bones, the hot flashes went away. But I've been able to enjoy the Brillo Pad facial hair and the lactation for the last year and 1/2. Have you ever been able to squirt milk across the room with your nipples? I didn't think so. I often felt like the FemBots in Austin Powers. If only it were something deadlier than milk...

But I really enjoyed the magical drug because the pain went away and I wasn't constantly bleeding. And as a bonus, I had no period. WOOT! And because this drug was a good thing (with a fun, squirt gun side effect), the insurance company said it wouldn't pay for it anymore. I'm not going to get into details. They said no, we said but, I need it. They said no again and now we're in a pickle. It's a very expensive magical drug.

So I go to the doctor and we decide to try the option that I was afraid to try in the first place because I was pretty sure it wouldn't work. An IUD. And when they tell you that you will feel a little cramping when it's put in, don't believe them. It is A LOT of cramping. My uterus screamed, "WOAH! What the hell?!?!" and then tried to expel the thing for the rest of the day. Crampity cramp cramp. It wasn't terrible...

Until now. I'm starting to bleed again. That constant annoying bleeding. It's like my uterus is pretending to bleed. "Am I going to shed my lining or not? Fooled you!!!" And I'm not laughing. The bleeding is more annoying than anything. I've dealt with it before - I bled for more than a year straight.

The bigger issue? The pain. Now, as I said, I recognize this pain. But instead of being negative and focusing on the facts of what will happen if the endometriosis is back (that's my "pretend" diagnosis because it can't be officially diagnosed without surgery, and I said, "No Thank You" to that). This time I'm going to refuse to give up my dancing no matter how much it hurts to stand up. And I'm going to keep living my life. Duh. My lungs are healthy. I'm not going to stop going at this pace just because of some excruciating pain that made me nearly couch-ridden.

No. Right now I am being positive. I am certain this pain isn't the same pain. I'm just afraid that it is and my brain is tricking me. And if my brain isn't tricking me and the pain is real and the same pain, it's just because the IUD hasn't had time to affect my hormones yet.

I have hope that the IUD will work. This pain will go away and the bleeding will stop. On a completely unrelated note, I also have hope that I will fall back into a normal sleeping pattern and I will be much less tired. And then I will be able to work more on my project - the world's best quilt.

I'm going to focus on working on the quilt and dancing and the kids I babysit for and ignore all pain and bleeding. Ready. Set. IGNORE!!!

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