Monday, September 26, 2005

Circle of Hope dot org

Here is another Lymphedema site I found.

http://www.lymphedemacircleofhope.org


Hey if anybody out there finds more sources please feel free to post them.

Thursday, September 08, 2005

The Lymphedema Bracelets and Pin











Here's the Lower extremities Bracelet.

http://www.lymphnet.org/bracelet.html















Here is the Upper extremities Bracelet.

http://www.lymphnet.org/bracelet.html
























Heres the pin for Lymphedema. Get a tranformational butterly for yourself or someone else at : http://www.lymphnet.org/butterflynew.html

Friday, September 02, 2005

Lymphedema Links

http://www.lymphnet.org/index.shtml

"The National Lymphedema Network (NLN) is an internationally recognized non-profit organization founded in 1988 to provide education and guidance to lymphedema patients, health care professionals and the general public by disseminating information on the prevention and management of primary and secondary lymphedema. The NLN is supported by tax-deductible donations and is a driving force behind the movement in the U.S. to standardize quality treatment for lymphedema patients nationwide. In addition, the NLN supports research into the causes and possible alternative treatments for this often incapacitating, long-neglected condition."



http://www.lymphedemapeople.com/

Heres an excellent site that I found with a forum and alot of great information.

I'll be adding more soon.

My Introduction

My name is Paul Riddle. I was born and raised in Sacramento, Ca and I still reside here. At the age of 28 (2003) I was diagnosed with a very rare disease called Lymphedema Praecox. Which is a hereditary disease of the Lymph System that occurs at Puberty(Praecox is Latin for Puberty). Basically my legs retain about 10% water because my Lymph system doesn't shoot the water up to my kidneys properly.

Here is some good information on Hereditary Lymphedema.
http://www.lymphedemapeople.com/thesite/hereditary_lymphedema.htm

How I was diagnosed.

I was hospitalized(Kaiser South Sacramento) with a painful infection of both legs in May of 2003. After the doctors who treated me had my infection under control. They were puzzled at first as to why my legs and body had become swollen. 3 specialists started asking me lots of questions about how I got that way. They asked me when did i start noticing any swelling. I had to think about that for a bit so they said they'd come back the next day.

After thinking about it for the day,I was pretty certain I was about 13-14 when my ankles..Primarily my left ankle started to swell everyday after I was out and about being a junvenile delinquent;-). Evidently over the years the swelling creeped up on me. I was hospitalized in 1997 after having a brush with the Grim Reaper(Broncitis and the Flu back to back plus a very low oxygen level due to Sleep Apnia) but the Drs at UC Davis Med Center never noticed anything so it wasnt really till about 2001 I knew I had a problem. (I had no idea what it was though so I was stupid and I did nothing about it. Wasn't till my lower legs got infected that I went to the hospital. I could've saved alot of pain and the scars I now have if I wasn't so stubborn and just downright stupid. I was embarrased. I had friends who I would make excuses if they wanted to meet for coffee or hang with here in my hometown/home. Friends for the most part I lost or barely talk to. My own fault).

The next day the doctors came back to say I have Lymphedema Praecox and that I had to make some Dietary changes. I was told I had to be on a permenant low sodium (salt) diet. That I can no longer have caffiene(NOOOOOO!!!!) or alcohol(I never drink it anyway) and I need to stick to a 1200mg a day diet. And that the food shouldn't have any preservatives since thats what salt is. I also had to drink twice as much water as most people with can be a pain in the ass! I also wear stockings which can be a pain on a hot summer day.

Its been 2 years and I struggle with the diet since i'm a chocaholic and I love ice cream and am a pig I admit it. :P

I have my good days and my bad days but its been alright. Im slowly learning how to eat right. I'll get there someday.