Thursday, June 17, 2010

The book, beating pseudomonas and my thoughts

Hello Friends,

Today has been a tough day. I got some news that someone close to me got some test results back which were not what that individual wanted to see. I know things will be ok though. I'm putting that person in my thoughts and prayers and will be there to help.

I also found out a friend with CF has had declined health of late. That's really tough to hear but it's a reality in the CF world. She is a good friend and someone who stuck up for me when I truly needed a friend. She will also be in my thoughts and I know she will beat this. Many of my friends with CF have passed away or been hospitalized for long periods of time. Yeah, I feel lucky to have the health that I do but I also feel sad to lose a lot of friends along the way. CF truly is a battlefield.

Today I'm sending letters to confirm that the people who once committed to writing forewords for my book are still good to go. I have a lot of good names but I want to get their final ok. I also found a big celebrity who has a CF connection that I'm trying to reel in. Hopefully I'll have some names soon.

The meeting with the literary agent went really well yesterday and I think a book deal may not be too far away. He asked me a lot of questions but I believe I answered them pretty well. I guess we'll see. I have a few things to do in order to convince him that this book is a money-maker so I'm working on these things now.

I think I have a place for Andrea and I to go on Saturday night. She didn't want it to be too pricy so that narrowed down my search. I also made sure there were no numbers on the left side of the menu items so that I didn't have to say "I'll get the number 2 with extra ketchup please."

I started sending out letters for Wish for Wendy yesterday. Hopefully we'll hit our overall goal of $1,000,000 this year. Maybe I could just call Bill Gates and ask for a check. That would save me about 100 e-mails.

I'm pretty proud of how DiversiTech is doing this year despite the unstable economy. I hope we can keep it up.

It was so cute yesterday. Avery was talking to her imaginary friend yesterday on her phone when I got home and as she walked and talked, Ethan followed her with his imaginary phone and he kept saying "He-llo...he-llo!" Maybe you had to be there but it was cute.

Andrea's T-2 match was suspended last night due to rain so she plays today. That means Avery gets another one of daddy's horror movie stories before bed. Just kidding Andrea! Well, I did tell her the story about a dog who bit me when I was a kid and then Avery proceeded to tell me all these horror stories about cats biting her and I realized I probably should not have told her that story no matter how much it meant to me so I revised it quickly. I told her the dog had no teeth and actually licked me afterwards. I think she bought it.

I had a really good day yesterday. My coughing was down. I was able to have a good long workout. I don't know if I mentioned it but a few months ago I cultured pseudomonas, the one bacteria every CF patient fears about having. If it lingers, it can really hurt your lungs. It's very life-threatening. I was on several antibiotics, a new aerosol medication and was working out twice as much. I didn't get down about it nearly as much as I would have a year ago. I credit that to a strong wife, tough kids and a better attitude. But attitude does not guarantee good results. Fortunately, a month or so ago I found out that I did not culture the pseudomonas bug this time around. It was a relief and physically I'm slowly getting better.

Tomorrow is June 18th. What's the significance? It will have been 6 years since Andrea ran with the Olympic Torch. I'm so proud of all she's accomplished. She and I did the MS Walk this year with my cousin Erin and the kids. I carried Avery on my shoulders 3/4 of the time (it's a 3 mile walk) so Avery told me later that it was an easy walk. I could not hear her though as I was busy laying on my face in a puddle of my own sweat.

I hate thinking about death, but I do it more than most I believe. That stems from a childhood of knowing my life would probably be shorter than most. Only then, I just worried about me. Now I worry about my wife and kids. I think about seeing my daughter going to prom or seeing my son play his first high school baseball game which he throws a perfect game (Ok, maybe pushing it there). I want to be able to see these accomplishments and special occasions but sometimes I wonder if I won't get to see them. I try to spend as much time with my kids now because I want them to know their dad just in case. For a long time, I didn't do that. I let my emotional problems get to me. Instead of worrying about the future, I better take care of the present. I have 3 great presents in Andrea, Avery and Ethan. I hope by writing my life story that my kids will remember their father if CF should win the war some day soon. I'm certainly not conceding but I also have to be prepared. I've appreciated my gifts in my children lately but I don't think I've appreciated Andrea nearly as much as I should. My goal is to change that.

Here's my pet peeve of the day. When someone is looking at you and talking in your direction and you say "Hey, how are you?" and then you realize they have an ear piece and they are actually on their cell phone and you look like the biggest tool. On another note, I hate those sinks where you have to hold down the button so the water comes out but when you release, there is no water. How are you supposed to get the water on your hands??? We are in the 21st century, aren't we? Just my thoughts. I'm sure some of you have been there.

Deep thoughts: When you're taking an anti-depressant and the pharmacy realizes they won't have your drugs in time, don't they think that might not help your condition to tell you that something has gone wrong and even better, you don't have the pills to allow you to cope with that? Just a thought.

Have a great day.

Best Wishes,


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