Life with CF — Page 11

A Very Long, Fun Weekend – Endeavour Has Lift-off

May 17, 2011

You know by now that the space shuttle Endeavour successfully lifted off to the space station Monday morning as planned. We were there and had a “blast” despite cloud cover at launch time. That was pretty disappointing, but there isn’t anywhere else I’d have rather been yesterday… unless you could have gotten me 3 miles away!

Our friends arrived just before midnight and we were all loaded up and on the road at 12:06, exactly 8 hours 50 minutes before the scheduled launch window. Time went amazingly fast because 1) I’d had a 4 hour nap before dinner 2) I took a caffeine pill before we left and 3) everyone stayed awake and talked the whole way there. We arrived in Titusville, across from Cape Canaveral, a little after 2am. We scouted out the bridge and the causeway looking for the best spot and decided on the seawall on the Cape side of the bridge. There were RVs and tents along the side of the road for miles from what we could see, but we parked about 150 yards past the bridge in prime position to just pull out into traffic.

We set up our stuff to make our long wait on the concrete and rocks more comfortable, took some photos, and tried to get some sleep. It was in the upper 50s where we were sitting with a good 10-15mph wind, so it was pretty chilly sitting in lawn chairs with a windbreaker, hood, and a beach towel as a blanket. I finally managed to hibernate until some dufus up on the bridge behind us came with his camera, NASA radio, tons of space knowledge to share with the other fine, quiet people on the bridge. Oh, and his wonderful belching was the perfect 5am serenade. I wanted to grab him by the back of his jelly-rolled neck to swing him over the railing into the water but feared that he might land on me on the way to his watery end.

The sun was starting to make its presence known just beyond the horizon before 6am, so I made a trip to the car to get my sunglasses (which were hanging at home since we left at night) and one last trip to the port-a-johns because I’d be arrested for public exposure before I missed the launch just because I was going to have a bladder explosion. I made it back in time to take great shots of the sunrise.

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Cystic Fibrosis Awareness Month

May 6, 2011

This is only our second year acknowledging CF awareness month. Last year was the first year I’d “come out” as a CFer from my cocoon of insulation from the negativity that I thought everyone else had with CF to find a vibrant, caring crowd of people just like me.

This is also the season for Great Strides everywhere. We are still debating about what to do with ours in Tampa, since we will be going on vacation just a couple of days after it, and traveling across the country with CF takes a lot of planning, so I’m undecided if we can handle both. It might be nice to set up a table near registration and sell our purple CF awareness bands to walkers since people receive off-color blue and yellow bands as admission bands to the zoo that we hold our walk at each year. I don’t know what blue stands for and we all know yellow is for prostate cancer.

CFF, I can hook you up with bands any time if you want people to have purple awareness bands – let’s spread awareness with the true color!

I love this time of year now, seeing everyone ordering their t-shirts for their Great Strides teams, putting on purple awareness bands, and spreading the word about CF. I even had a regular Twitter acquaintance who is in the same field as I am order one this week when he saw my tweet on my normal Twitter ID about it being awareness month and provided a link to our bands. Please send me links via my contact form if you’re selling CF shirts for your team goals and I’ll get with you to get a photo, details, and link to your site in a few days for another awareness post.

I’ve worn my awareness bands almost every day (sometimes I don’t leave the house for days) and even got some “fat bands” that are 2-3x wider to try out. I them better because it looks better on my skinny wrist, more like one of those leather bands that cool people are allowed to wear. We’ll order more of them as our inventory runs lower and I determine that there is demand for them. I’ve been remiss adding what little we have to the page for fear of running out in one order. I think we have 8 left, but they are quite a bit more because we only ordered 10 instead of in bulk. I can get them down quite a bit if there is interest.

If you ask, people will support you. Live strong AND breathe easy.

Today – Epic in Every Way – Exhausted Day 2

April 29, 2011

Today, as good as yesterday was for our business with the meetings I set up with clients whom I’d never met in person, was the best day as far as epiphanies and life-changing information and personal development I’ve ever had.

It was one great speaker after another, but two very much made me think about who I am, what I do, and why I think about why I am feeling the way I do. You know me by now: you’re going to get the real deal here, so I hope this has as much meaning to you as it does me.

Find a happy place

The first speaker, Cathy Brooks, had us first close our laptops, close our eyes, breathe (deeply – hah!), and take ourselves to the place where we are most happy (preferably not in front of your computer).

I was lost. I was floating around from memory to memory, place to place trying to find where I am most happy. The beach in the shade in our lawn chairs? Our vacation in Tennessee? The floor watching TV with Beautiful? Our patio when we’re sitting in the sun reading and talking about stuff?

I was crushed! Am I happy? If I’m not, what is the cause? It was the next speaker who may have uncovered why I was questioning my happiness.

Today We Are Rich

That is the title of the latest book by Tim Sanders (@SandersSays). I put it on my nightstand in the hotel to read tonight to see how far I get before I sleep. I want to be quite clear about this next statement, as it holds no exaggeration. Apart from a speaker at church camp in Jr. High who cut me to the core with a talk and changed my life for an eternity, this was the single best talk I’ve ever heard in all of my years of sermons, going to motivational business meetings, watching videos, and fantastic conferences of the past. I’m even going to investigate a psychological diagnosis that makes sense for how I feel.

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Trailblazing with CF

April 29, 2011

It’s approaching lunchtime at the conference, and I just heard a mind-blowing quote that I want you to think about along with me:

“Taking the road less traveled is good but you can also build your own road” – Chris Guillebeau @chrisguillebeau

Let’s think about what that means for us as people who know much of what the worst that can happen to us, but might not be as sure about what great things we can create.