Tuesday, July 31, 2012

A little about me you might not know

I always tell you about the things I struggle with. Let me tell you about other things in my life.

I'm a really good daughter. At least in my opinion. I'm a decent sister. A pretty handy niece and a good cousin. I'm an okay friend. It depends on what day you catch me on. I have never had good luck with friendships really.

I'm a really great shopper. I'm great at clearing an isle especially if elderly people are hovering to long. I just cough a couple times then bam they disappear. Same with Moms with small kids.

I'm an amazing car dancer/DJ.
I can get groovy in the car like no ones business and I hate to say it but I have amazing taste in music. My music ranges from tupac to hall and oats. Eminem to Clapton. I'm hard core like that.

I love to get my craft on. I have learned from my fiance's mom how to quilt so I'm trying my luck at that.

I like to scrapbook I have 7 books starting from my first date with Matthew. We are going on 7 years it's crazy to see how much we have grown.

A lot of things come easy to me. Some things more then others. I have really enjoyed my role as an "aunt" they aren't my niece and nephew they're actually my cousins but I like Aunt better. Dodi to be exact. I love being Dodi (Hebrew for Aunt) it's an amazing feeling to love another human being in that way. It's unexplainable. But it's amazing

I know I tend to blog at my hardest moments and I don't want you to think that's all Im it's actually the complete opposite.

Peace love and hello kitty to all! Xoxox

Sunday, July 15, 2012

"Without fear and illness, I could never have accomplished all I have." -Edvard Munch

I don't know that this is true for everyone but tonight it speaks to me. I speak of the moments where I'm weak and lost but in reality that's the fear taking over my hope. It happens and no matter how hard we try not to be scared of something there is nothing we can do about our fears. Either they consume us or we defeat them and do things despise the fear.

Wednesday, July 11, 2012

We deserve a cure

This disease has no famous face standing in front of us saying look at me I'm important cure cf for me. We have real faces of real people who most aren't internationally known but does that make them less deserving of a cure? They are loved and they are brothers and sisters wives and husbands moms and dad daughters and sons. Are these people less deserving? No we are more deserving. I have times in my weakest moments after sobbing for hours I look at my self in the mirror and I see weakness where there once was strength. I'm supposed to be a warrior and all I see Is this weakness the disease that has made me drop to my knees begging for an ounce of hope.

Where there is hope there is rainbow of possibilities. I dream of those possibilities being a reality and I know with the support and fundraising were closer then we have ever been...look at the evidence of your charitable donations making leaps and bounds for the disease that once was a bleak death sentence. Now we have possibilities and hope. Together we really are working hard to save so many lives.

So we might not have a celebrity standing in this fight but we have each other. Our community is a beautiful one and we support each other. It's a beautiful thing. I have seen nothing like it.

Peace love & hello kitty

Sunday, July 8, 2012

Just my update

I'm sick again but I think this time its much worse. I'm physically ill but I'm emotionally ill. I spent all day at kaiser Thursday and even though I knew what the day was going to be like. I didn't. I didn't expect it to be that bad. I'm just tired of doing the same thing over and over again. Iv antibiotic after antibiotic to feel better for a little then back to being sick. I just wish I could have a break cause as we all know if it's not one thing it's another.

I had an appointment with audiology and ENT. Just as I had suspected my hearing has gotten worse but nothing to be concerned about right at this min. It's just hearing

ENT my least favorite appointment ever was as I expected. Painful. I had sinus surgery may of 2011 and it was supposed to make a difference but no it didn't. I'll admit I should of been better about the rinses and I paid the price. I now have polyps in my right nose hole and that's new completely. I just want to scream but I can't I cannot physically bring myself to scream. But I cried and I still cry. I'm struggling I have been struggling and in just waiting to catch my breath and find some solid ground to stand on. And If that wasn't enough of a shitty day it ended with a massive blood coughing fit coughing up the most blood I have ever coughed. The feeling of the blood coming through your lungs is a feeling of torture and all you want to do is breathe but when you breathe you cough and when you cough you get more blood.

Nobody wins in that situation.

Make it more of a hard hit I knew I was sick I just didn't know I was this sick. I wish everyone knew how good I'am about hiding how I feel cause even if I told you...you would believe or understand. No body knows

So this is the catch up on me and my health. I'm hoping I catch a lucky break but as always I'm not holding my breath.
Only high light was riding the merry go round at Griffith park. Matthew was kind enough to ride with me for safety reasons of course ;)

Tuesday, July 3, 2012

Dogs gone wild

Bossy our 10 month old mastiff is a rebel. He destroys every rug we put on the floor...he hates rugs and sometimes when we come home we will find he moved the rug from the kitchen to the doggie door, possibly setting it free. He loves to eat dog beds but not the ones he likes but the ones the bullies like. Dish towels those are rare these days. He will grab them from the counter and run like a mad man to the doggie door and no matter how loud you yell he keeps running

He's my treatment buddy even though he takes up more of the couch then I do. But it's nice to have his company and when I lay on the floor to do my vest that's when he thinks he needs to share the pillow.

Even though they have 4 legs all my dogs are my favorites they are good company and my dearest friends. Plus they usually agree with everything I say. Haha

Betsy is the dog in the round bed and the dog that's laying on the dog bed in the middle of chaos. Bently is my ohandsome boy laying on my bed and that leaves bosco aka bossy.

Wish us luck and let's hope he doesn't eat the furniture next. Or the computer

Monday, July 2, 2012

Is this real?

That feeling of being uneasy is starting to take over me. The point where you think you're sick but maybe it's not that bad and before you know it you have convinced yourself you don't need to go to that appointment.

Something is off. I feel it in my lungs. I know my lungs they are going to be the death of me (haha) my right lung obviously hates me and is punishing me. Between the chest pain and the coughing up blood I really feel like there is no hope for us ever becoming friends again.

My sinus' they are the wild child every parent prays they don't get. But no not me I got the rebellious sinus' that we're sent hear to destroy me.

I have moments where I just need to know I'm going to be okay. The uncertainty of cf is awful. The good days and bad days are hard. to feel good one day and like crap the next is like having someone blow out your candles. There is nothing left. Some days I feel so good that I believe this (cf) is a bad dream and I'm waiting to be woken up...but like always something will happen where I get slapped in the face and I realize this is real so very real and the thought of it being a dream is unreal to me.

Sometimes life feels unreal.

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