Telecon & Endocrinologist

The teleconference went very well. Dr. Kurzrock agrees with us that the most important thing is educating the public on these diseases, especially ECD. People go undiagnosed because, at times, doctors don't know what they're looking for and have never heard of the disease.
Turns out that, now that I've been on Interferon a while, I may be able to reduce the dosage to 1 mil. units 3 times a week. That would mean a huge savings. My last four syringes came in one shipment totalling $1008. It will still cost the same. But, I can stretch out the time between shipments. There are other drugs that may be effective, such as Pegasus. Interferon 2A and 2B are both useful in fighting the disease. So, if one is less costly, I may be able to switch and take us up one level in the poor house.
My Endocrinologist tested my hormone levels, and my testosterone is back up to normal. Funny. I felt that happen. One day it was just like someone flipped a switch on inside me, and I felt much better.

Bad Info

The Tel Conference on the 16th actually has only 10 slots. So, I will report back with what I learn. :-)

Chat/Conference Call

Dr. Razelle Kurzrock of MD Anderson in Houston will be giving her time for a Q & A in our chat room: http://www.chatzy.com/427437211406, on the 16th. She is THE Dr. as far as Erdheim-Chester is concerned and is one of two Dr.'s that discovered Interferon as useful in battling the disease. This is a great honor, and we are, needless to say, very pleased that she would take time out of her schedule for us.

Wednesday, 7/16 at 11:15 am to noon (Eastern Time)
E-Mail questions to garyecd@aol.com.

MRI Results

Well, Doc says my MRI results from Tues., July 8, show "no appreciable growth in the orbits or nasal area compared to previous studies". I'm guessing, in doc language, that's good news. His assistant was extremely pleased. Actually, I'm sure it is good news. I just love the way they phrase things so that it sounds like a good report, but you're not quite sure . Seeing as how once people had about two years to live when diagnosed with this stuff, and I've KNOWN about something, in my head at least, for eight years, I'm doin' pretty darn good . We did discuss another full body bone scan. But, we shall see what ol' doc Friedman says.

The Fourth

I've been feeling so much better. Interferon still leaves me a little groggy. But, otherwise I feel good.
My wife and I celebrated The Fourth together before she went to work (Double time pay!!). I grilled Italian, turkey sausage, baked a couple of taters, made some mixed veggies and had Ben & Jerry's Cherry Garcia ice cream. Too bad I can't have a beer! Oh, well. For me to have done all this a few months would've been quite an undertaking. It was great today, though.

Long time no see! :-)

Hey, hey!Interesting little adventure this morning. I'll leave out the long part. But, I wound up getting the # of someone at the bigger newspaper in Western NC. I called the lady there, and they may, at some point, be interested in doing a story or series on Orphan Diseases, one of which is Erdheim-Chester. It's possible, and I certainly hope likely, that this would increase knowledge of these illnesses, then jack up funding and attention. She seemed very interested and asked lots of questions. I'm a writer, not an orator. But, hopefully I did okay and tweaked her interest. I've begun a cause at Facebook:http://apps.facebook.com/causes/97118?fp=fb003&recruiter_id=16154293 , and am looking into that writing I talked about.
On Monday, 6/23, the opthalmologist reported he is very encouraged. My vision is about 20/25 and has maintained that for almost a year. He asked permission to use me as a case study for an upcoming conference. I should get him some attention, huh? :-)

Ideas!

A friend of mine in St. Louis suggested I set up inspirational talks at churches and such. He seems to think my attitude would help lift those who've had the unpleasant experience of a nasty diagnosis.
I like that idea and it lead to another. I have an idea for a "Southern Fried" book about my experience. I think it's important to be able to laugh even in situations that seem grim. Since I've refused to give any ground to my "inconvenience", I've found my smile again, have more energy and, in general have a better outlook. Low and behold, my health is improving. I'm able to have short bursts of running with our dog, "Curry". I've been trying to establish a routine of push-ups, sit-ups, a bit of weight work, etc.
The most important thing for me is to follow God's lead. I want to be about His work and help others the best I know how.