Just a request.

rayzer · Post by **rayzer** » Sat Mar 15, 2008 7:17 am

Walter,Thanks for the update. It's good news that things haven't grown.What time is your church praying for you? I'd like to be praying for you at the same time.Rayzer

walter327 · Post by **walter327** » Mon Mar 17, 2008 7:03 am

OH!! Sonometer is just a Doc tryin' to sound more uppity. It's another way to pronounce "Centimeter". Sheesh!!

walter327 · Post by **walter327** » Thu Mar 20, 2008 1:35 pm

Learned from a friend of mine in Detroit, who also has ECD, that there is a new laser being used to destroy tumors. There are two in the US, one of which is in Indiana. My friend has already called, and the info he got said it would probably work on ECD growths. He gave me their #, and I plan to call tomorrow, Friday. Only catch is, it may be considered experimental. But, we all know that ins. co.'s are in business because they care about people, right? Anywho, I'll keep y'all posted.

walter327 · Post by **walter327** » Sun Mar 23, 2008 9:52 am

Make that Monday. I forgot it was Good Friday!!

walter327 · Post by **walter327** » Sun Mar 30, 2008 7:44 pm

A friend of mine is impressed by my attitude about my disease. After talking with me on several occasions, and having ECD himself, he thinks I should do some inspirational speeches at nearby churches and such. I can see his point. There are many people out there who are overwhelmed with a new diagnosis, and I could help them gain a new perspective. What are y'all's thoughts? I would like for this life to mean something, and if God would reach through me to help others, then I'm all in.

Casey H · Post by **Casey H** » Mon Mar 31, 2008 12:51 am

Quote:A friend of mine is impressed by my attitude about my disease. After talking with me on several occasions, and having ECD himself, he thinks I should do some inspirational speeches at nearby churches and such. I can see his point. There are many people out there who are overwhelmed with a new diagnosis, and I could help them gain a new perspective. What are y'all's thoughts? I would like for this life to mean something, and if God would reach through me to help others, then I'm all in.One word... yes!!You really have a tremendous amount to offer others who have been diagnosed with a very serious illness!!! Do it!! Best,Casey

davewalton · Post by **davewalton** » Mon Mar 31, 2008 1:24 am

Quote:A friend of mine is impressed by my attitude about my disease. After talking with me on several occasions, and having ECD himself, he thinks I should do some inspirational speeches at nearby churches and such. I can see his point. There are many people out there who are overwhelmed with a new diagnosis, and I could help them gain a new perspective. What are y'all's thoughts? I would like for this life to mean something, and if God would reach through me to help others, then I'm all in.Hey Walter,Your experiences with your illness puts you in a unique position to gain the trust of other sufferers and to helpful when others can't (through no fault of their own). The doctor's book knowledge can only go so far... your personal experience can help others in a way that a knowledgeable non-sufferer can only imagine. So I guess that's a "yes" vote from me. Dave

coachdebra · Post by **coachdebra** » Wed Apr 02, 2008 1:18 pm

I suggest going to a naturopath and/or acupuncturist. I've found taking proteolytic enzymes (away from food) helpful with breaking down weird cystie things. I was diagnosed with a lovely condition known as CFS several years ago and told by the docs to file for federal disability because I'd be bed ridden for the rest of my life -- um... no. I was very ill for several years, but I GOT BETTER!Acupuncture, nutritional supplements, and a lot of internal work. And really learning to listen to my body. And if you caught my workshop at TAXI this year -- me fatigued? NOT.So, just remember -- the doctors only know the tools they know. Those are not the only tools out there.Happy healing!Debra

walter327 · Post by **walter327** » Thu Apr 03, 2008 8:43 am

Thanks so much, guys. Your support means alot to me.

squids · Post by **squids** » Fri Apr 04, 2008 6:05 pm

Hey Walt, swee'pea! Jes catchin up with you. A centimeter growth in the gut now? (ugh!) And possible new laser treatments available? (yay!)Don't rule out treatment being paid by your insurance company. Sometimes they're willing to let patients be guinea-pigged if it means less cost for them in the long run (for instance if they find out the lasers are more effective than longterm interferon, that sort of thing). There is an organization out of California online that can help you get that sort of thing approved if you want me to get that info for you. I run into this sorta thing a lot, unfortunately. I've read your words and I find them extremely effective in making others aware of what's involved in having a catastrophic illness like yours. You would be a blessing to those newly diagnosed. Nothing like having a disease to help you earn their trust......it's hard to get people to understand when they don't have it, ya know what I'm sayin'?? I find it helps me with my work as well. We need to put our experiences to some good use, right? Helping them navigate the pitfalls and emotional sandtraps that lie around the corner would be a wonderful use of your experience and your gifts.Jes my two cents, sug. Thinkin' boutcha and as always, I'm here if ya need me. You know how to reach me.Yer pal always,Squids

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