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Wednesday, September 28, 2011

My Brother's Wedding

Hello World!

So my brother got married on Sunday!!!!! It was amazing. So much fun. So many laughs. All around great time. There was one snag, my now sister-in-law's mother is a SUPER BITCH!!! She made my mom cry, and not in the good way!

My mother wanted to wish Annalie good luck and just see how she was doing right before the ceremony. But this woman shoved my mother out of the room and slammed the door behind her! I used all my power to restrain myself from doing something. How disrespectful?! This woman acts like a child all the time and this isn't the first time we have had problems with her. She is disgusting, self-center, disrespectful, and just an all around bitch. We, the family, will have NOTHING to do with her ever again. When my brother starts making babies, baby showers and birthdays will be separate. We, the family, don't associate ourselves with such trash! She is a horrible human being. I have no good things to say about her.

Other than that incident the wedding was wonderful. We were dancing and laughing. I was able to last the whole thing without my pesky O2 tank! I did have it with me in case I needed it but it is uuuggggly! So I was glad I didn't have to wear it.  The cake was delicious! I ate my piece and then stole my Aunt's while she was away from her seat! Haha. We all had such a great time! Here are a few pictures other people took. Most of the pics won't be ready for another week or so, but I'll post them when they come in! Until then enjoy these....

Annalie and Jason! The happy couple!

Ryan and Ashlie, my younger bro and Annalie's sister

Me and my Mama!

The Family gettin' funky!

One wedding down, one more this weekend!!!

Breathe Easy

Tuesday, September 20, 2011

Quarter Stone

Hello World!

So my last post was full of complaints. This one won't  be like that. Well not completely full of complaints. Who wants to read about all my problems? I sure don't!

Well I get out of the hospital tomorrow! YES! I'll have to do IVs at home but it is better than being in here and missing my brothers wedding! I'm super excited for him! It is this Sunday, Sept. 25th! Then next weekend, Saturday Oct. 1st is one of my best friends! It is going to be a good week!!!

So I was in the hospital for the past week. It has been interesting. My nutrition has been a roller coaster the passed few months. SO I hope this stay added the extra weight and I get to keep it on my body. Also this visit a pretty large (the size of a quarter!) kidney stone was found... AWESOME! Its too big to pass, and from what I hear passing Kidney Stones is painful! But that means I'll need minor surgery for them to go into my kidney and break up the stone and extract it. Should be a minor surgery but with lung problems anything with anesthesia is more complicated than usual. Still not sure exactly when that will take place. Right now the stone is just hanging out not causing any real problems.

While I was in house I missed my Great Strides Walk for the Cystic Fibrosis Foundation. I organized a team and collected donations and then couldn't even walk. I was pretty disappointed in myself but what can you do. My friends and family still went to the walk and represented our team. My friend made a shirt to wear at the walk and put several CFer's names on it. She asked me if I wanted to add anyone. I have met SOOO many CFers on Twitter and Facebook, there is no way I could fit you all. So I choose just 3, next year I'm going to try and fit more. But I choose Connor Jones, his story breaks my heart. CF steals lives all the time but Connor's mother blogs and her blog just melted my heart. She stares hardship in the face and never backs down. I admire her strength and courage to continue each day. I also choose Callie Simons, who I met just this year. She passed away in May very unexpectedly and I can relate. I went down the same path in 2009. I thankfully made a turn around and still here today. She sadly did not. I think of her often. The third one I choose was Jackson Wynn! He is so cute and I talk to his mom a lot on twitter. She is an amazing Mother, as most CF parents are. But J had some struggles and his cute little face just makes me smile when I read her blog and see his pictures. Next year it will be awesome! We will keep walking until theres a cure!
Team: Breathe Easy!
Our team didn't just walk for me. We walked for several CFers.

September 20th = 16 months of waiting. Call me already BWH!

Breathe Easy

Monday, September 5, 2011

Burnt Out

Hello World!

This is exactly how I feel these days...

I am trying to live my life this summer. Live a life, not a CF life. I was doing pretty well for a few months, lung wise. Well as "good" as you can be on 23% lung capacity. But my weight took a serious dive. I was just doing so much that my body couldn't keep up. I went from 98lbs mid May to 85lbs 2nd weekend in August. Not good, not good at all. So off to the hospital I went. Not so much for my lungs, they were staying stable, but for "failure to thrive."

The transplant program has a strict policy about maintaining a 17% BMI or higher. That is about 88lbs for me. So once I dropped below that % I get "deactivated" on the list until my weight goes back up. Talk about a shot in the face. So I ate and ate and ate and threw up and ate and ate and threw up some more. I got my weight back up to 98lbs in 2 weeks! Back on the "active" list I went. I was very glad to be back on the list.

But I feel I'm in the same damn boat again! I won't to do things, not sit around and just wait for lungs to show up. Just waiting, that's not living life. I'm not even asking to do a lot. I just wish I could go out with friends for a weekend and not need a week to recover from it. Or be able to walk my dog around the neighborhood and not be exhausted for the rest of the day. Or walk up a flight of stairs and not need to sit at the top, cough my brains and sometimes lunch out. Or that I could eat a meal and the calories in it just STAY ON MY BODY! Is it too much to ask for some kind of normalcy??

Don't get me wrong, I do love my life and wouldn't trade it in, ever. But sometimes I just wish I wasn't being "tested" all the time. I know, I know, the hard parts of life make you stronger and I do believe that. But I'm tired of being "strong." I wasn't raised to have a pity party for myself. So that's not me. I love my family and they are very supportive. Sometimes their support feels like nagging and drives me bananas. I know they want the best for me, I know they want me to be successful. I feel like I'm giving 100% and they are only seeing 50. It just doesn't seem fair sometimes. And yes, I know, life's not fair.

I'm dreading the colder weather and winter all together. Last winter was pretty hard, lots of hospital stays. And I think this winter is going to be just as bad if not worse. I try not to let my cystic fibrosis bug me. And it usually doesn't. But lately it just feels like I can't win. If I keep going down this road I'll either be in the hospital ALL the time or stuck in my house ALL the time.

I need to find the energy somewhere to keep doing what I'm doing. But it is getting hard. I'm burnt.

Breathe Easy