New-ish Here

Welcome to all our family and friends. Patients, families, caregivers, therapists, nurses, doctors, anyone with a concern for and interest in lymphedema is most welcome!!!

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New-ish Here

Postby mlen » Fri Jul 28, 2006 9:14 am

Hi,

I'm kind of new, I was on the old forum, but just re-registered. My name is Marita and I don't have Lymphedema, but I am a newly certified CLT(Vodder), here in Upstate NY. Four people in my immediate family have had cancer, 3 of which had treatment in 2005 alone. I went to training to treat patients, but also because my mother, father and husband may be at a higher risk of developing 2ndary Lymphedema. Almost everyone I meet lately has been affected in some way by cancer, and almost none of them know anything about Lymphedema. It angers me that there is so much lack of information or misinformation out there, and it's particularly scary that so many doctors haven't a clue. I can't imagine the frustration of actually having Lymphedema and getting nowhere with diagnosis, treatment, etc...without having to go through some lengthy steps to find someone who actually knows what they are talking about. I checked a local hospital that actualy has a Lymphedema program, hoping maybe to submit my resume, and their website's first line is completely inaccurate! I'm not sure where I'll go with this from here, whether I'll try to get in a hospital, or attempt to go it alone. First, a much needed family vacation and some thinking. :P
Then, I hope to learn all I can. One foot in front of the other .......
Glad to be here.

m
mlen
 
Posts: 1
Joined: Fri Jul 28, 2006 8:49 am
Location: Syracuse, NY

Postby kathy » Fri Jul 28, 2006 9:24 am

HI MARITA,
I UNDERSTAND WHAT YOU ARE SAYING. I HAD LYMPHEDEMA IN MY LEG FOR ABOUT 10 YEARS BEFORE I HAD ANYTHNG DONE WITH IT OTHER THAN MY DR KEEPING AN EYE ON IT. A GIRLFRIEND OF MINE WHO WORKS AT A MEDICAL SUPPLY COMPANY RECOMMENDED THAT I NEEDED LYMPHEDEMA THERAPY. I HAVE COME A LONG WAY SINCE THEN AND AM DOING WONDERFUL AND I AM AMAZED AT HOW MUCH THE SWELLING IN MY LEG HAS GONE DOWN FROM MY THERAPY.

GOOD LUCK WITH WHAT EVER PATH YOU CHOOSE TO TAKE. IT SEEMS LIKE YOU REALLY WANT TO HELP OTHERS!!!

KATHY
kathy
 
Posts: 6
Joined: Thu Jul 06, 2006 3:27 pm
Location: READING, PA

Postby joanne johnson » Fri Jul 28, 2006 1:27 pm

Hi Marita,

Welcome! It's great to know that people like yourself are out there and willing to help. I have had lymph in both of my legs for 25 years and many many cellulitis infections . I never was able to get the help I really needed.

I went to a physical therapist at our local hospital. She was still in the learning process having had wrapped arms of breast cancer survivors but never legs. She thought she could adjust from arms to legs. I paid several hundreds of dollars for supplies as my ins. co. wouldn't pay for any of them. To make a long story short the therapist was unable to wrap without them falling down constantly. It was a disaster! She went on vacation and she never contacted me when she got back. She was very nice but she was avoiding me. When I finally was able to get in touch with her she admitted that my case was worse than she had anticipated and for me not to return. I was very disappointed but I got over it. I never went back for my supplies which I kept at her office as I no longer had a need for them. I hope they were used by someone else who had to pay for supplies out of their own pocket.

A physical therapist's office may be a good start for you if you're interested. There is such a great need for lymph patients. Good luck to you! Thanks for caring.
joanne johnson
 
Posts: 165
Joined: Sat Jun 10, 2006 12:23 am


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