Hi there....
I am so glad to finally be able to find this forum. I am 21 years old and have had lymphedema since I was 14, and never really met my age with it...
I believe I have an inspirational story to tell--- I have NEVER let lymphedema get in the way of doing anything I've wanted to do, whether that be dating, teaching dance and fitness classes, going on trips, school, work, life, you name it!!! Although sometimes (Well lets be honest most of the times) it affects my leg in the form of constant swelling, I'm able to hide it from most people, between wearing pants and sneakers. I once dated a guy for almost a year w/o him noticing! You have to have the CONFIDENCE to go through life regardless of how embarassed or worried you might be about your leg (or arm if thats your deal) because in the end, people will only remember how you were and how you treated them, not how your leg looks. But don't get me wrong, I think about my lymphedema ALLLLLL the time, its constantly in the back of my mind and I have lots of worries...like, what will happen when I get pregnant, will there ever be a cure, will I find a husband, you get the picture.
I am blessed to have had the most excellent care, from lympedema therapists all over california and machine pumps, garments, and sleeves galore. As far as 'alternative medicine' I've tried EVERYTHING there is -- a healer, chiropractic work, acupuncture (which is actually quite riskly), the 'lymph star' (some form of laser treatment w/ enzmyes I have no idea what the heck it actually was supposed to do), and massage. None of them worked.
Anyways, I feel like I'm rambling but I'm just excited to finally be able to vent to people who UNDERSTAND the frustrations, worries, and body image issues...and I would LOVE to start a discussion on HOW difficult it is to deal this...and also if you have tried any alternative kind of treatments I would love to know about that as well
Peace and Love!