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new to this site

  • Hello all,

    I'm new to this website.  I am a member of another LE website and find it very helpful.  I am hoping to find that here.  I am a bit taken back by everyone using real names and pictures.  I prefer to remain as annoymous as possible for now anyway.

    I have primary LE and lipedema.  I spent 4 mos last year in MLD with wraps etc.  then got a compression garment in July.  I'm back to MLD since the new calandar yr with my health ins.  ( they limit my visits per yr).

    With all the MLD, lymphapress pump and compression, I still have yet to see a noticeable difference in fluid drainage.  It seems all we do is move the fluid into my upper body.  My LE therapist feels my pain and is trying her best.  I'm just not responding like others.  The lipedema does complicate things but still we should be seeing some results.

    I now am experiencing shortness of breath, pressure in my chest and coughing.  All tests so far show nothing so we believe it is from the fluid pushing on my insides.  It has also made my acid reflux worse. 

    So I come here hoping for some new ideas and maybe find someone out there like me.  I'm stage II LE and stage I lipedema.  I want to make sure it doesn't get any worse! 

    I welcome your comments.  Is there a live chat on this website also?

     

     

     

     

     

     

     

5 comments
  • Kathy B
    Kathy B Hi Sandra,

    LE is so confusing. It is odd how it affects so much of our lives and bodies. I am certainly no expert but can share what I've experienced with you. I have acid reflux also. Mine got very bad a few months ago when I had much fluid in my...  more
    July 30, 2010 - Report
  • Sandra Blau
    Sandra Blau Kathy, Thanks for answering me back. I have to tell you, I am a teacher and was looking forward to the summer, but I really have not enjoyed it, between the insurance, doctors and being uncomfortable with my leg and pain, I have been on the phone the...  more
    July 30, 2010 - Report
  • Kathy B
    Kathy B Sandra,

    I used to love summer as well. The heat is nearly unbearable these days but I still enjoy it over winter. summer is not a good time to be depressed. I hope you find joy in your vacation. My summer last year was very difficult as I spent most...  more
    August 3, 2010 - Report
  • Lymphedema Community Staff
    Lymphedema Community Staff Hi Kathy,

    It seems that so many members have chosen to use real names and post pictures because it is time that lymphedema patients stop feeling shame about their diagnoses. There is no shame in having lymphedema. It is important that the lymphedema...  more
    June 3, 2011 - 1 likes this - Report