Sunday, March 23, 2014

Reason I Write

Tonight I remembered the reason I write this blog.  

I got an email from the granddaughter of a former coworker of my father.  She told me that I am amazing and strong.  She said she'd like to talk to someone who also has health problems and knows what it's like.  

That's why I write here: to help people who are going through hard things.  And I need to get back into writing despite the 10,000 wedding projects I'm currently working on. 

Saturday, March 8, 2014

Forever Dancing

Yesterday I was on my way home from clinic in Milwaukee.  I was feeling sad about my lung functions and something that happened to me on Thursday.  Thursday I went to get my blood drawn, and at the lab there was a woman who looked so much like my friend Lauren it was scary.  Except for the fact that she was pregnant (and Lauren and I used to compare our distended abdomens to see who looked more pregnant), I could have sworn it was Lauren.  I almost said something to the woman, except Lauren passed away in 2011 and "Hey! You look exactly like my friend, but she's dead." is not the most tactful thing to say in public.
I was sure that seeing Lauren in that woman was a sign - a sign my lung functions would be up and I would be back where I want to be.  But that didn't happen, and I was sad.  I was sad for myself and sad because I miss Lauren.  I was frustrated that she hadn't come through for me and given me the boost I thought I needed.

And then my iPod did something strange.  Out of 2,000+ songs on my phone, just as I was thinking about Lauren, "MmmmBop" started to play.  Hanson was her favorite band and I will always think of her when "MmmmBop" plays.  I knew it meant she is still with me, and that maybe the lung functions not being where I want them to be is a push to work even harder.  I thought I was doing as much as possible, but maybe I'm not.  Maybe I can push myself a little more and get my lungs back where they should be.

After "MmmmBop" my iPod played "Dance in the Graveyards" by Delta Rae.  It's a song and band my friend Kyra turned me on to, and I've heard it many times, but yesterday it just clicked.  As I drove I put it on repeat and sang aloud and cried and eventually was washed over with a sense of peace and calm.  I know I can win this.  I know I can fight.  I have to fight for all my angels no longer with us and all my angels on this Earth.

The following are the lyrics to "Dance in the Graveyards"

"Dance in the Graveyards"

When I die
I don’t want to rest in peace
I want to dance in joy
I want to dance in the graveyards, the graveyards
And while I’m alive
I don’t want to be alone
Mourning the ones who came before
I want to dance with them some more
Let’s dance in the graveyards

Oh my love, don’t cry when I’m gone
I will lift you up, the air in your lungs
And when you reach for me, we’ll dance in the darkness

And this song has made me want to throw a party.  I want to dance and invite all my angels to come along.  I can't wait until it gets warmer and I can do just that.

Friday, March 7, 2014


I'm sitting waiting to see my doctor.  I'm typing on my phone while I text back and forth with my husband.  

I'm angry. I really wanted my FEV1 to be 56% today. It was 51%. I really want my FEV1 to get back up to the mid 60s, but at this point, I don't know if that is possible. 

I'm working so hard to take care of myself I barely have time for anything else, and I still haven't improved, only maintained.  

I'm angry I ever participated in the Vertex trial (and I'm still working on the big Vertex trial post... It's hard to write about). I'm angry that I'm not the only one this happened to. I'm angry I gave up something that was working to keep me healthy to try something else, and that something else made me worse.  I feel really dumb for not sticking with what was working.  

I'm angry that taking care of myself is taking so much time.  I miss my friends. But I'm so focused on getting better I don't have much energy left after all my treatments, IVs, and exercise. 

I need to take my anger and frustration and channel it back into doing everything I can for my lungs.  I'm determined to get better.  I won't accept these numbers. I'm going to keep fighting. I won't ever give up. 

Saturday, March 1, 2014

Blogging while Biking

I want to return to blogging regularly.  I was reading things I wrote when I first started this blog, and I had some good things to say.  I think I have more good things to say but less time to write them down.

So I'm going to further my multitasking efforts.  I'm going to ride my stationary bike and blog at the same time.  I ride my bike every day, and usually knit or fold paper while I ride and watch TV.  But now I'm going to up the ante and get a table that goes over the bike so I can do things on my laptop while I bike.  I may not be blogging every day, but hopefully a few times a week.  

And I'm working on that post about the Vertex VX 809 trial.   

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