Saturday, August 30, 2014


As I sit here waiting to get that phone call, that seemingly never will come, my mind wanders in all directions.

I travel down the road of happy memories from my childhood. I reminisce about good times with friends. I look at photos of trips I’ve taken and tears well in my eyes. Emotions are very near the surface these days. I can cry at the drop of a hat. Well, that was always true and the source of much family teasing throughout my life. It’s worse now.

Everyone, including me, wants me to stay positive. I will get my transplant; I just have to be patient. Patience is lacking, I’ll be honest. The doctor tells me the clock is ticking and I need that transplant ASAP! Doesn’t do much for one’s positive attitude. But it could still come in time. You never know, so I hope that happens. It’s possible. It could happen; keep telling myself that.

Even writing my Blog has become a challenge for me. What do I write about. I don’t want to sound self-pitying but I’m afraid that’s the case, but it’s not why I do this. I’m trying to explain my journey and what it’s like to go through a disease like this. The side effects of my medications make my hands twitch and even typing this up is a physical challenge. What isn’t? 

When this Blog began, it was because I had been diagnosed with a rare, painful, incurable and difficult disease that landed me on Disability (Interstitial Cystitis or IC) and having to sell my home and move in with my parents. That was a lot to deal with; 12 surgeries, trial and error with many treatments, learning to live with chronic pain. But I gathered my courage and devoted myself to becoming a passionate patient advocate, talking to others suffering from the same disease, working to raise awareness through my Blog, Twitter, fundraising and more. Since coming down with this lung disease, I have had to give up those activities. I don’t have the mental, emotional or physical energy to devote to them. My IC Blog has morphed into a Blog about my lung disease; that is, when I can come up with something to write about. 

IC took a lot from me. My home, independence, financial security, freedom to do whatever I wanted. I thought I had lost a lot with that diagnosis. Boy was I wrong.

Idiopathic Bronchiolitis Obliterans has taken even more from me; it very well may take my life, at a very slow and painful pace. But before it does, it is taking other things from me, slowly, one by one. Sleeping. Breathing. Thinking Clearly. Walking. Physical Fitness.

Focus. Stay Positive. It’s hard, but it’s what I’m trying with all my strength to do. I want that transplant. I want more time, more memories. 

The Transplant Team tells you this will be hard - the waiting. They didn’t lie. It is the hardest thing I have ever had to do.

This really is the Long, Slow Wait. Can we speed this up! I’d like that lung now, please!

1 comment:

  1. Isn't it amazing how when we feel we have a bad situation, then we realize we could have had it worse? Praying for you. Keep venting as long as you need. (((Hugs))