Just a request.

kurtkreimier · Post by **kurtkreimier** » Sun Jul 06, 2008 4:03 pm

Walter,I have not posted here before but I wanted to say it is good to see you are feeling better these days. As I have read through this thread I have been impressed by your faith, courage and positive attitude through all of this, as well as God's provisions for many of your needs. Thanks for sharing your experiences with us. I will be hoping and praying that God gives you continued strength and healing.In terms of your above questions about doing some performing and contacting Congressional Representative I would say go for it!Kurt

squids · Post by **squids** » Sun Jul 06, 2008 4:45 pm

I think there is already legislation regarding orphan disease, Walt, but I don't know where they're all at right now. The Hill is so uptown fo me, heh. I like your idea of brochures and educational materials. You can also start a charity org, get a grantwriter to help you secure some funds to do shows that promote exposure to the diseases. If you include some others in with yours, you'll get more support that way. Jes some thoughts on the subject. Good luck!Glad your 4th was so nice. Sounds yummy!

walter327 · Post by **walter327** » Tue Jul 08, 2008 6:08 pm

Thanks. I'll get to work finding those brochures and check on that legislature.

walter327 · Post by **walter327** » Wed Jul 09, 2008 12:46 pm

Doc is very pleased w/ MRI results. Says "no appreciable growth when compared to previous studies" in the orbital or nasal areas. His assistant sounded EXTREMELY pleased. I guess they just have to be careful in their word useage. It would be terrible if I based my elation on their report, eh?

walter327 · Post by **walter327** » Thu Jul 10, 2008 2:39 pm

Found out thru one of my ECD chat buddies that Dr. Razelle Kurzrock of MD Anderson, Houston is giving her time for a Q & A in our chat room on July 16. She aided in my diagnosis. She is one of two doc's that discovered Interferon works well on ECD and has treated several cases.

walter327 · Post by **walter327** » Fri Jul 11, 2008 5:04 pm

Geez ! I've been anxiously awaiting this Dr.'s appt. that was scheduled for yesterday, Friday. Well, I get this call saying I need to phone in and reschedule. Seems doc wasn't going to be in the office (For the 2nd time in a row). Is golf really that great of a game?

squids · Post by **squids** » Fri Jul 11, 2008 5:23 pm

*snort*Let's hope it was jes golf. Some of these guys are doin stuff we don't wanna know about, I bet.

walter327 · Post by **walter327** » Fri Jul 11, 2008 5:52 pm

A little paper, a little wacky tabacky, eh?

squids · Post by **squids** » Fri Jul 11, 2008 8:09 pm

Mo like a lil paper, take it to the pharmacy type wacky. But I'm sho some of 'em still do it the old-fashioned way. Can't grow valium in your backyard and that's a fact!

walter327 · Post by **walter327** » Sat Jul 12, 2008 6:03 pm

Ya ad the bonuses they get for prescribing unneeded meds and samples... We deserve the vacations. After all, WERE sick and need the break, we pay for the insurance who, hopefully, pays the doc. and the pharmacy. Sheesh!Incidentally, We've reached our deductible. From here in, everything is supposed to be covered 100%.

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