Re: Support & Communication for lymphedema sufferers

Hi Chris! Nice to hear from you. Hopefully others will join in and we can make this a productive information exchange experience =)!

Wow! I hadn't heard of anyone with your particular experience. I mean, I know it creeps and spreads into other areas (limbs, torsos, faces, etc) but overall body sepsis. Yikes! How terrible it must have been (/still is periodically?) for you. Y'know, it seems the more one finds out about this condition the scarier it is. There is something to be said for knowing the risks though. Better to know and prepare oneself for the possible than to have it rear it's ugly head and strike you blindsided.

I've heard that swimming is good for LE. I suppose I should look into the nearest pool to my location. I've always been very outdoorsy and my preferred exercise is hiking. I just love the peaceful calm serenity of hiking through the mountain forests with my big ole goofy dog. I live in the Pacific Northwest so trails aren't too far away. At least not for weekend ventures. Perhaps swimming should take up some weekday sessions, although then I'd feel terribly guilty that my pooch couldn't be involved with the exercise - hmmmmm, gotta' think this one through.

I wear the custom Elvarex garments to keep the swelling reduced. Admittedly, I'm not conscientious with the MLD. I suppose I don't see any immediate results from it so that "instant gratification" section of my brain is left lacking. No excuse, but ... I do have a "pouch" of hardened tissue on the top of one foot that extends to the outward side. I try and keep it broken down by massaging it. It's working ok so far. The bandaging would break it down but I'm spooked about doing that again so I'll try this for awhile. Luckily, I haven't had any infections in the last 6-1/2 years. I try to be very careful with the limbs and watch for any signs. So far I've been ok.

Have you learned anything about herbal therapies? I've searched for information on several alternative medicine websites but so far haven't had any luck. If you have any info I'd love to hear it!

Talk to you later - Kim

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