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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


  1. hey.... i can understand that you feel burnt... but you are so so strong, don't forget that. Yes you are right life is unfair a lot of times, but we always have to look forward and never give up :-))

    so good luck

  2. Hello from Norway, my love! I just recently started reading your blog--wish I had come across it sooner!! I like being updated on your life and how you are doing.. don't think that I've forgotten about you! I miss you lots!! I wish life was as simple again, when I was only your junior camp counselor, hehehe. Man, has time flown.. I'm glad that we were able to keep in touch over the years and saw each other, even if it was only once, or twice a year! They're still great memories. Stay strong and keep on smiling :) I'll look forward to read more in the future <3 Love you lots!

  3. @Lizzy Thanks for the kind words!

    @Heather I miss youuu!!! Hope Norway is treating you well. Love! xoxo