Sitting in the Library

I hate this.  I'm sitting in the library watching the seconds tick away.  I'm supposed to be writing a chapter for my book about my ex-husband. 


I am writing the chapter that introduces him as a person - before things were terrible.  Before he left.  When I was really happy. 

And that's some of my problem - I was never truly UN-happy.  At least I didn't think I was unhappy.  Maybe I was too sick to pay attention to my marriage, but I didn't think it was so bad until Dan announced he was leaving me. 

In retrospect, of course, there were things that were terrible, and I'm doing much better now. 

I think sometimes I'm still stunned that all this happened, that this is my life. 

Today I ran up the stairs and thought, "Shit.  I have different lungs in me."  Sometimes, I almost forget. 

Today my writing coach said to me, "Well, cripes. You just had your lungs torn out. Then your heart was torn out as well."

And it's true.  I was shoc…

"Five Feet Apart" - The Review *WARNING: SPOILERS*

If you have not seen the movie "Five Feet Apart," please quit reading.  It's a movie worth seeing - worth getting a feel for what having CF is like.  So, stop now.  Go see the movie, and come back to read what I thought.  I want to encourage people to see this movie - especially if you want a small glimpse into my world.  Is it my exact story? No.  Is it close? Not really.  But it IS a CF story, just not mine. 

First, I want to say I really liked the movie.  I thought it did a descent job of portraying a young life (well, 3 young lives) with CF. Are there inaccuracies? Of course, it's Hollywood.  Is the story a little cheesy? Yes.  But despite a few negatives, I overall really enjoyed the movie.  I also cried through about 85 or 90% of the movie.  The parts where I wasn't crying made me laugh or cringe at inaccuracies, and sometimes it was all three. 

My biggest pet peeve was how the hospital stay was depicted as kind of a playground.  The main character went to …


I feel blocked tonight.

I usually come to the library on Wednesday nights, now, and write for at least one hour.  I used to go dancing on Wednesday nights, but lately I've had so many issues with my legs getting swollen or my lungs not being the best, or being afraid of catching something.  I am sad that my pre-transplant dreams of dancing up a storm went up in smoke with the complications I had and still have.  I thought I'd be joining my friends in advanced classes, dance weekends, and private lessons.  I took a couple more advanced classes last summer - but I was too sick to continue.  I was always getting nauseated or nearly passing out during the more challenging parts.  My body still can't keep up and it pisses me off.  Also, my financial situation is almost the exact opposite of what it was when I was married.  When I still had CF lungs, I didn't mind if I missed a class here or there, even though I'd already paid, because money wasn't a big deal.  It…

"Five Feet Apart"

On Friday, the movie "Five Feet Apart" opens.  I'm thinking of going opening weekend.  It's a romance about two teens with CF.  The kicker is they are supposed to stay six feet apart for infection control.  There's my first problem with the movie.  The CF Foundation around 2014 changed that policy to say that no CFers should ever be in the same indoor space.  At outdoor events more than one CF person is allowed to attend, but there they must remain six feet apart.  The whole premise is wrong, according to current policy (say, the last 5+ years or more).  Here are more of my thoughts so-far. 

I hate this movie.  I hate the inaccuracies already.  I hate the bad comparisons the HR team made (they compared a long distance relationship to the situation in the movie and to the hardships of cystic fibrosis.  It's not the same.  It's nothing like that.   Not being able to touch the person you love, EVER, because of a risk of cross-contamination is much bigger tha…

Why I Write

Today a friend of mine posted THIS article on Facebook.  At first I didn't read the article.  I couldn't.  My first thought was, "Oh great... someone beat me to writing my book."  I was a little bit angry that this CF mom got her daughter's journals published by a big publishing house because I know the odds are that won't happen to me. 

The book I'm working hard on is a memoir of my life with cystic fibrosis and my experience with double lung transplant.  I've taken the journals I've kept since I was 11 and inserted key parts into my memoir.  And the woman in the article had her journals posthumously published. 

I've joked in the past about someone coming across my journals when I'm gone and publishing them, but that's not what I want.  I want to write while I'm here.  I want to share my story with people who identify with it and with people who can learn from it.

This is the real reason I'm working with my writing coach now i…

Blog, Relaunch

Hey Everyone!

It's me!  I'm back!  And I have new lungs!  I thought I would relaunch this blog because I have a lot to say and I'm really tired of making incredibly long Facebook posts. 

There are many, many topics I would love to cover here - including experiences with my lung transplant and the complications I had, my troubles with insurance companies, living my life post-divorce, etc.  I also want to keep people updated on my health, but hopefully that will be a small part of my blog because I will continue to do well!!!

Thanks for reading!


Goals 14 Years Apart

June 27, 2005, age 19 Goals: 1.Gain weight. For real - I want to be 135. Currently, I weigh 122. I know that 135 is an unrealistic goal, but it's the healthy weight for someone of my height. I really want to weigh 130. I need to change my views on food. I've realized that for me, eating is part of my health routine - it's just as important as my other treatments. 2.Stay at school for the full semester. I will take care of myself - and if one of my classes is too stressful or taking up too much time, I will just drop it. Taking care of myself is a full-time job, so from now on I'm looking at things differently. It's like I'm taking a few classes on the side, but my job comes first. My health is first. I can always re-take a class, but I can't un-do damage in my lungs. 3.I will not be hospitalized before next May. Dr. Green said when I got out of the hospital in April that he seriously doubted that I would be able to stay out of the hospital for a year. Since …