Wednesday, February 27, 2013


Since I got through all the technical stuff in my first post, I thought I would touch more on how this has affected me emotionally.
It has been a roller coaster; there are days when I would love to stay in bed and pull the covers over my head and shut out the world, there are days when I want to punch someone in the face repeatedly, and there are days that are somewhat normal.  But there is NEVER a day that goes by that I'm not aware of the disease that has taken over my lungs and turned my life upside down.
When I was relatively fresh into my chemo/prednisone/inhalers/immunosuppressant treatment, traveling to Denver, and trying to make sense of what was occurring, a good friend said something to me that has stuck.  We were talking about how people were having a hard time understanding what was happening to me and they didn't know how to help. She said that if I had been diagnosed with cancer that it may be easier for people to understand what was going on.  She got it, she got how I was feeling. Please empower yourself with as much information as you can get about an illness and if you have trouble finding info please ask.

The BO diagnosis was and is so difficult to comprehend especially since I 'look relatively healthy'. I don't 'look' like a person with dying lungs.  I see the circles under my eyes and my pale skin but all too often I hear : "You look good". Please know that those words bring little comfort to me, I don't feel good, I'm just pretty good at putting on a happy face and trudging along.  I've had to be a fighter from a young age and hope to continue fighting. Certainly there are days when my fighting spirit is nearly gone and its a day by day struggle or even a minute by minute struggle.

I have great family and friends to support me but even they don't know what to do. Some have stepped back because they don't know what to do.  Some act like nothing is wrong, thats okay but I have to say that its easy to feel forgotten and just sending a quick email or text saying that you are thinking about me makes a huge difference.

No I don't want to dwell on my illness, thats why I still work and try and maintain a somewhat normal life but you still want to know you are thought about and cared for.  I certainly am guilty of thinking and praying for someone during times of struggle but not letting them know --I am now becoming better at letting them know that I'm actively thinking of them.

I was driving home tonight and listening to Delilah and her sappy love songs.  Tim McGraw's 'Live like you were dying' came on. Anyone that knows me knows I am not a country music fan, and now songs bring on a different meaning to me. Well I must have been a bit emotional (or just tired as I don't like to admit I cry) but I was crying listening to Tim.  I can't go skydiving or rocky mountain climbing as described in the song(I did ziplining in the mountains while in Denver --obviously very stupid with the elevation and my lack of healthy lung function but I still like to think I'm normal-I nearly passed out on different occassions but thats another story). But the song does say the guy went 2.7 seconds on a bull named Foo Man Chu--who's up for a bull ride??
Remember to live like you were dying...

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