NIH study

It's absolutely official. I spent ovr an hr on the phone w/ the NIH Tues. We talked about the flight, hotel, transportation, and the fact that I'll be experiencing 31 tests in 4 days. That's ok. I'm still excited.

Sight for Sore Eyes

Good news w/out a definite reason. Over the last month or so, my vision's improved. I did need reading glasses to read the newspaper or books, etc., period. Now, in decent light, I've been reading the paper, doing the crossword, reading books, etc. w/out glasses. Yet, my MRI shows the disease is stable. Seems like the growth would've eased up on  my optic nerves for this to occur. I'm not arguing! But, I am curious.

DONATIONS & GIFT MATCHING

Dear Friend:
This is a wonderful time of year with Thanksgiving and the holiday season just around the corner. The ECD Global Alliance volunteer Board of Directors joins me in saying “Thank You” for your generous contributions and support. Your gifts are making a difference:
 Patient representatives come from 16 countries. We represent the largest group of ECD patients known to exist and allow patients and family members to connect with each other to share their experiences.
 The National Institutes of Health (NIH) has begun a natural history study on Erdheim-Chester Disease to understand the disease and its cause.
 The ECD Global Alliance web site provides information to help physicians, patients and families, including links to descriptions of all known ECD research underway.
 A $50,000 ECD research grant has been funded by the organization to better define the pro-inflammatory microenvironment inside ECD lesions.
 A new $50,000 ECD research grant will be funded in 2012.
 In 2012, research, advocacy and education are the priorities and your contribution and support will make a difference.
This holiday season please make a gift contribution to ECD Global Alliance and consider asking your family and friends to make similar gift contributions. You can make your tax-deductible donation online at www.razoo.com/story/ECD-Global-Alliance or mail your check to:
ECD Global Alliance P.O. Box 775 DeRidder Louisiana 70634
YOUR GIFT WILL BE MATCHED! Thanks to a generous private donation, contributions up to $50,000 will be matched until January 1, 2012. If you donate $50, the Global Alliance will receive $100 thanks to your donation and the matching donation. Please share this giving opportunity with your family & friends. It is a great holiday gift.
Supporting research is crucial to our mission. Your gift funds additional research projects and provides for the ECD Global Alliance to act as the communication conduit between researchers, patients and their families. Thank you for your generous gift.

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.

No News Is Good News, I Guess.

Well, it's been almost a week, and I haven't heard anything from the oncologist. So, I reckon I'm in the clear. I'd like to know what's up w/ my arm, though. It'd be nice to find a pain killer that works, too.

MRI nap time

I've had an unexplained pain for about the last month or so. It started under my scapula feeling like a muscle strain. So, I tried a heating pad, Aspercreme, Ibuprofen, warm showers, etc.. Nothing has helped.
So, I called my oncologist Thursday for a prescrip refill and posed a question about the pain. Well, guess who's going in for an MRI of his shoulder and upper arm. It's possible the disease has become active and begun spreading down my arm. Boy! One thing after another.
But, at least we're going to see Third Day at Biltmore toward the end of this month. They sing one of the songs, "Mountain of God", that reminds me of the day I was diagnosed, and we sat in the exam room holding each other and crying. "We must go thru the valley to stand upon the mountain of God". His strength thru our weakness.
Which reminds me. I've been writing like crazy lately. I think He's feeding me some pretty good stuff, too. Claim Me, Let Me Shine, Better Man, Thanks, You Spoke are some of the titles. I even have melodies for a couple. I sure miss those callouses. I have to build them up all over, again. I'll be working on both the callouses and the tunes.