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Another newbie!

PostPosted: Tue Jul 18, 2006 10:05 am
by wtryan
Hi, I just found this forum and wanted to join in. I've had lymphedema since the early 80's (when I was 15 years old) when I had some cancerous lymphnodes removed from my right leg and abdomen as well as extensive chemo & radiation to my whole torso and right thigh (due to a fast moving and deadly type of sarcoma - juvenille alveolar rhabdomyosarcoma - long words lol!)... Anyway, I was never advised about the possibility of lymphedema (they were too busy trying to save my life, and aftercare was not as big of a focus then), so ended up gradually getting worse over the years and having several major bouts of cellulitis due in part to my ignorance of this condition. I am now 41, and have had much more swelling in the past 5 years or so. Before then, it was noticeable, but not bad. Now it is moving up to my thigh area and is really tough to find clothes to wear. Worse, I ride show horses, and it's very hard to handle the chaging size as far as my tall riding boots and breeches go. I do wrap, but find that the support stockings generate way too much heat and cause problems. I have not done the massage therapy for the last couple of years and need to get back to it. My plan is to find a good therapist to get me back on track.

Anyway, needed some support here because this has started to intrude into my life more and more and I'm finding it hard to deal with. When the leg was just swollen a bit, I had no issues with it - just went on with my life. Now that the thigh is affected and the swelling is so much more noticeable, I am really finding that I need a workable solution...

Nice to read the stories and hear from people with so many different issues - this condition can tend to be isloating because most doctors have no advice and most people have never heard of it. I need to look for a new Primary care doctor here (we moved to FL 1 and 1/2 years ago and my doctor here has no bedside manner and does not offer any helpful advice)...

PostPosted: Tue Jul 18, 2006 12:40 pm
by patoco
HI Wtryan

Super welcome to our family :)

Special congrats to overcoming the big "C" :!: :!: :!:

Been dealing with lymphoma myself now for about 11 years.

Hope you can find a good PCP and then we need to get you to a lymphedema therapist to get this under control. The good news if that that are quite a number of excellent treatment centeres in Florida...and some doctors as well.

Take a look through our doctor registry and see if one might be close to you, then on the index to the left under Therapists, there are pages of therapist listings/clinics. If you ca'n find one there, lick on the "Schools of Therapy" and that will give you links directly to the therapist schools and their certified graduates.

Feel free to any questions or post any concerns...look forward to getting to know you.