NIH ECD Study

It is official. I've been accepted into the NIH study, and we'll fly out 1/15/12. The poking & prodding will begin Monday morning. I'll be getting bone scans, PET scans, CT scans, blood work, a stress test and even see a physical therapist for advice about exercises to improve my balance. That's just a taste of where they're going to take a peak. We're really excited and plan to also make a mini-moon out of a couple of the days. The Dr. has warned me that come Fri., I will be very tired. I'll get over it for time w/ my bride, though.

Love and Support, Very Important.

My wife juggled some things and figured out a way to get tickets to the Third Day concert this last w/e. It was one heck of a show. We were able to get our minds off of Dr.'s visits, MRI's, Interferon, Fentanyl, Life expectancy, etc. and relax together and enjoy some great music, sang ourselves horse, and joyously praised God. She even got CD's and a sexy T-shirt (for her) figured into the budget. We hadn't been together like that for a while, and it was absolutely great. I love my wife w/ a passion! I am a very blessed man. She knew I wanted to see this show badly. She loves me. She did what it took. I lead a very blessed life.
Thank You, Lord.

Video clip

Met with my Pastors' wife to go over the video clips' progress and exchange some ideas. We're shooting for informative, yet comforting and inspirational.
Things went very well, and I'm excited about where we're headed with it. We can even record a song on campus that my ECD group leader would like included on the site.
Man I'm excited!!

Getting to know you.......

Well, hi there.
First off I'd like to say, be prepared. I'm gonna have good days and bad. See, I've got the honor of having a rare disease called Erdheim-Chester Disease, (http://www.histio.org/, http://www.thedoctorsdoctor.com/). While my wife and I have decided we're in it for the long haul ( gonna give this crud my nastiest low blows and rabbit punches), there are still days when I wish someone would just take care of poor little old me. Readers will get both sides of the coin.
'Kay. We've become determined that this thing can't have me. It's met someone with a double thick skull and a steel rod for a spine. My family knows the story before this weekend before Christmas (some other time). But, since that miserable three days, when I truly thought I was going to die, I've begun walking hard and fast, stretching, running up and down our steps, no matter how unsteady I am or how much it hurts, and just generally refusing to recognize the presence in my body (Maybe if I ignore it, it'll go away :-) ). I've remained steadfast in praying. I mean, without Him I wouldn't have a wonderful, beautiful wife; a gracious, supportive family or all of the fantastic blessings that are so abundant in my life. He's the Bomb, I tell ya!! I have honestly felt much better, after getting over the soreness, of course. I think I recognize me in there behind them eyes, again.
Ain't perty. But, it's me. ;-)