Oct 31, 2007

Last night at Wal-Mart my daughter and I were on our way to the checkout lane when one of the cashiers stepped out and offered to check us out right away. I noticed that her legs were bandaged to her knees. I could tell because she was wearing pedal pusher type pants (I'm no fashionista, so I don't know the proper name for pants that aren't shorts but aren't just high-waders). I looked back to my daughter and whispered excitedly at the same tiime she was whispering to me, "She has LYMPHEDEMA!"

I've seen women with compression sleeves before, but I've never seen anyone with compression leggings or bandages on. I was just so excited to not be the only one. To see someone with Lympahdema just working and living and coping. I didn't say anything to her about it because my daughter thought it would be better not too. I guess I didn't want to be all weird and ask her some personal question that maybe she didn't feel like discussing with a perfect stranger. She made my night though. I know that I'm not the struggling alone.

I found this cool site! For anyone with lyphadema in their arms this seems like a really great way to manage it and still look "cool." They don't have anything for people with lymphedema in their lower extremeties yet, but they're working on it. I know I can't wait to see what they come up with for legs! And I love the idea of "Lymphediva" - I'm jealous I didn't think of it first! Go there and check out their awesome stuff: http://www.lymphedivas.com/
Their mission statement says: LympheDIVAs™ LLC is dedicated to creating medically correct fashion: compression apparel for the savvy and stylish breast cancer survivor with lymphedema, which will inspire her to feel beautiful, strong, and confident.

Oct 19, 2007

News Flash: Lymphedema Sucks!

Here's an article I ran across recently regarding aromatherapy and lymphedema. Right now I'm willing to believe almost anything. I know I haven't really discussed my own struggle with Lymphedema, mainly because I can sum it up in two words: IT SUCKS! I have primary lymphedema in both legs. I have gone for physical therapy and had the Manual Lymph Drainage massages (as much as my all knowing insurance would allow, but that's a story for another day). I currently use both the compression wrapping and I have CircAid Leggings

I've had this problem all my life, and it's slowly worsened over time. I have asked doctors about it MANY times, all of them either prescribed diuretics, which do nothing, or they have not really done anything because I don't think they've known what to do. I don't think most doctors know what lymphedema is. Anyway, I finally found a doctor who recognized it, and sent me to physical therapy this past summer.

I've now been in treatment for about 3 or 4 months and I don't feel I've made any permanent progress. The bandages help my legs to reduce, but when I take them off to shower, my legs swell right back up. I swell up so quickly that it's just discouraging. I know they tell you that you can't cure lymphedema, you can only manage it - well I guess I just don't feel that I'm managing.

The CircAids are not comfortable; the foot wrappings make my feet too big to fit into my regular shoes. I was wearing larger shoes, but they're hard to walk in and I'm always tripping and walking funny. I feel even more like a circus freak. They're hot, they're a pain in the butt to put on and take off, I had to pay almost a thousand dollars for them because my insurance doesn't cover their cost - because Lymphedema isn't recognized as a problem I guess. I don't know. I'm just feeling discouraged, miserable, and wishing that I could just sniff some tangerines and be all-better! whee...

Anyone have any better ideas?

October 17, 2007 - Irene Spedaliere usually comes out smelling like a rose — literally. The Streetsville businesswoman owns Mohani Bay, an aromatherapy store and custom blending bar that offers her customers a wide range of body washes, soaps, shampoos and scrubs made from pure essential oils extracted from plants and known for their healing properties.
An aromatherapist with a pharmaceutical background, Spedaliere recently came up with a novel way to contribute to breast cancer research. She concocted a blend of essential oils to make shampoos and conditioners, body washes and scrubs, all in support of Rethink, a Toronto-based breast cancer support group. October is national breast cancer awareness month.

The products made from that blend, also named Rethink, are available only until the end of October. Proceeds from sales go towards breast cancer research. Spedaliere said she took four blends along with some 40 essential oils to be tested by women at Rethink, and asked them to select one. She tweaked the formula a little. The final blend, chosen by the women, most of whom have been touched by cancer, was a winner. “It so happens, the blend they chose contained sweet orange and tangerine, both of which are good for the lymphatic system,”

Spedaliere said. “A lot of breast cancer patients have lymphedema, which is swelling of the lymph nodes, and these oils help with that. The blend they selected also had lavender, which is a natural anti-depressant, along with cinnamon and clove, which aid circulation and are antiseptic, so it all works well together.

“I want to promote natural, healthy living for everyone,” she added.
Spedaliere said aromatherapy can help combat both physical and mental conditions to alleviate stress.

Having spent most of her career as a pharmacy technician at Toronto's Bayview Clinic, Spedaliere saw first-hand the effects of cancer on women.

For more details, visit www.mohanibay.com.
from: The Mississauga News, written by: Radhika Panjwani

Oct 8, 2007

Voices of Lymphedema - the Silent Epidemic

Lymphedema, or chronic swelling due to lymphatic fluid, affects 3-5 million Americans including 20-40 percent of cancer survivors. Lymphedema is so little known -- even among doctors -- that it has been called a 'silent epidemic.' "Voices of Lymphedema" breaks this silence as patients and therapists share their experiences and their wisdom.

San Francisco, California (PRWEB) October 8, 2007 -- Lymph Notes has published an exciting new book "Voices of Lymphedema: stories, advice, and inspiration from patients and therapists" in which 80 patients and therapists share their stories and tips for living well with lymphedema.

Chronic swelling caused by lymphatic fluid, or lymphedema, affects 3-5 million Americans including 20-40 percent of cancer survivors, and yet most people have never heard of it and many doctors can't diagnosis it. Untreated lymphedema can be painful, disfiguring, disabling, and deadly. There is effective treatment that can break the cycle of repeated infections and reverse lymphedema-related disability but many doctors consider the condition to be untreatable. Medicare and other payment plans may not cover any or all of the costs of treatment.

Voices will raise the profile of lymphedema while providing practical advice and comfort for those with, or at risk for developing, this chronic condition. This book features advice on getting a diagnosis and finding treatment, solutions to common problems and practical tips on self-care, information on activities and travel, support groups and outreach to the medical community, and issues in treatment coverage and reimbursement.

Stories include: How AZ lost hundreds of pounds in his leg and regained his mobility after being bed-ridden for 30 years; How Francis was able to control her swelling, break the cycle of repeated infections and hospitalizations and return to a normal life.

"An excellent resource for lymphedema patients, therapists, and other health care practitioners. It's a book that should be required reading in all schools that turn out healthcare providers."
Kathryn McKillip Thrift, BS, CLT-LANA

Book Details
Title: Voices of Lymphedema: stories, advice, and inspiration from patients and therapists
Authors: Edited by Ann B. Ehrlich and Elizabeth McMahon, PhD, Foreword by Calina Burns
ISBN 13: 978-0-9764806-5-5
Price: $24.95 paperback

About the Editors
Ann Ehrlich and Elizabeth McMahon are coauthors of Living Well With Lymphedema (Lymph Notes 2005). Ann is a professional medical writer and breast cancer survivor with secondary lymphedema. Elizabeth is a clinical psychologist and author of Overcoming the Emotional Challenges of Lymphedema (Lymph Notes 2005).

About Lymph Notes
Lymph Notes publishes high quality health information in print and online. www.LymphNotes.com is an online information and referral resource and an online support community for those with lymphedema, their family and friends, and the healthcare professionals who treat them.

Media Contact:
Ann Ehrlich, editor

For review copies and cover images please e-mail Sales@LymphNotes.com

Source: PRWeb: Industry Healthcare