"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 …

Fall: Then and Now

I love fall.  I'm not a pumpkin spice girl, but I am a boots girl.  I bought two new pairs this fall because I love boots so much - I have boots in 4 colors now.  So I think I'm set for awhile.

Today I went and put on my leggings and top, and as I was putting on my socks I had a flashback to last fall - which was pretty damn rough.  So I wanted to make a list of things I am thankful for today that weren't possible last year.

I'm thankful that I was able to put my socks on today - all by myself - and then I was able to walk to a different room and put on my boots - all by myself.  All this, while not wearing oxygen.  Last year I had to have Dan help me get dressed and undressed most days because it was too hard to breathe and get dressed at the same time.  

I'm thankful that I can shower on my own - a real shower, in the shower.  Last year Dan was helping me clean up in the bathtub and washing my hair.  But I'm well enough to do it all by myself.

I'm thank…


Last Wednesday Dan and I went to a quaint little restaurant for dinner.  We sat down and ordered, and I told Dan I would go to the bathroom and be right back.  I walked to the bathroom and as I pushed open the door this wave of memories hit me. The peacock wallpaper reminded me how hard it was to push the door open and how I couldn't breathe just from trying to walk the 50ish feet from our table to the bathroom.  The memories were from the last time we were there, about December 26th. We were there for brunch that day, and it was a struggle to get me out of the house.  It was a struggle to get me out of the car and into the restaurant.  I had a coughing spell and had to sit down in the front area of the restaurant and catch my breath before I could hobble and gasp my way to where my friends were seated.  Soon after I sat down, I had to go to the bathroom.  Dan offered to walk me there because I was breathing so poorly, but I refused his help because I thought, "if I can't…


It took me EIGHT months, but I got my FEV1 back up to 40%.  I'm being discharged from the hospital today and don't have to do home IVs this time.