Updates

• 
  Kathryn Krastin: Hey, I guess I need to be online for you to chat with me. I haven't been on in a few days.
  
  To answer your question, I am trying to see what is new in the Lymphedema world, trying to stay on top of what is happening to see if there is any new treatment,...  moreHey, I guess I need to be online for you to chat with me. I haven't been on in a few days.
  
  To answer your question, I am trying to see what is new in the Lymphedema world, trying to stay on top of what is happening to see if there is any new treatment, garment, tool, etc that can help get my legs more normalized.
  
  Plus I get frustrated at times with the hurdles that are placed in front of us -- even by the very doctors that are supposed to be advocating for us. (Lately, I needed to replace the Juxtafit garments that are over a year old and splitting from the bottom, but she refused because she doesn't like the provider I was getting mine through. I should have the option of getting my garment from whatever provider I feel best advocates for me -- especially advocating with the insurance company, etc.)
  
  Grrr....
  
  Hope you are having a good journey with this condition overall. Thanks for stopping by my profile.  less

  • January 17, 2010
• 
  Jenny Sterner: Hi Catherine: In answer to yor 11/10 post that I JUST saw........(sorry, I guess I didn't see it earlier!) Yes, we are all individuals and need to try different things til we find what works for US. What works for one person may not work for another. ...  moreHi Catherine: In answer to yor 11/10 post that I JUST saw........(sorry, I guess I didn't see it earlier!) Yes, we are all individuals and need to try different things til we find what works for US. What works for one person may not work for another. If you are seeking a knowledgeable lymphologist, (doctor who knows his or her stuff about lymphedema), I would suggest looking at the Doctor's Registry at www.lymphedemapeople.com or look around www.lymphland.com (that one is a Yahoo group.)
  Good luck and let me know if I can help you further!!
  Jenny  less

  • January 14, 2010
• 
  Jim Miller: Catherine - I went in to my lymphedema therapist today to get ready for another round of compression and a smaller garment. This time we're using MEDI, as I'm unhappy with Juzo's quality control and lack of flexibility in fitting arrangements (a "guy"...  moreCatherine - I went in to my lymphedema therapist today to get ready for another round of compression and a smaller garment. This time we're using MEDI, as I'm unhappy with Juzo's quality control and lack of flexibility in fitting arrangements (a "guy" fit thing).
  I got it under control last summer with compression wraps and massage; learned it myself and do it at home every night. The Juzo just contains the swelling but I wrap every night to bring it back down to a reasonable size. Because I've had it for 43 years, I still have to do a full day wrap one or two days a week to really give it some reduction. Yes, I wrap nightly too.
  My therapist was so surprised today at how small I've been able to keep the leg on my own. So I'd say MLD plus compression wraps plus a well fit garment do the trick.
  
  Jim  less

  • January 13, 2010
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  Catherine Schneider → Kathryn Krastin: Hi Kathryn, I am trying to see how to chat with you while you are online, but not sure. So what are you checking out about lymphedema? Cathy Schneider

  • January 12, 2010
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  Catherine Schneider My left leg that was the original trauma and swelling I have no more problem with. Interestingly it is the toes on both feet (especially baby toes and especially right foot toes) that give me ungoing grief. Then also the right trunk/abdomen is a bit...  moreMy left leg that was the original trauma and swelling I have no more problem with. Interestingly it is the toes on both feet (especially baby toes and especially right foot toes) that give me ungoing grief. Then also the right trunk/abdomen is a bit swollen and has increased. The lymphoscintography shows redundant lymphadema so starting to study various lymph patients lymph test outcomes. I feel if diagnosed right away the lymphedema could have been stopped, but not diagnosed for two years later so has increased.  less

  • November 18, 2009
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  Catherine Schneider → Jim Miller: Jim, do you have your lymphedema under control? With the Juzo or did you use bandaging when it flares up? Curious as there are a couple people that are having trouble getting their lymphedema under control. Thanks Cathy PS Where in CO do you live?

  • January 8, 2010
• 
  Catherine Schneider → Jenny Sterner: Dear Jenny, I am thankful to come across this blog and to be able to share info and increase advocacy. Please send me any info that I can help with advocacy and new lymph info, Cathy
  Catherine Schneider
  742 Spring St, Eau Claire, WI 54703

  • October 22, 2009