On this blog we are featuring stories that have been submitted through our website as part of the My Lymphedema Story campaign.  We hope you are as moved and inspired by these stories as we have been. If you would like to share your story, please click on the “Share your lymphedema story” tab on the left side bar under the “How you can help” menu.

Thanks for your support of the Lymphedema Treatment Act!

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Yvone’s Story

by Heather on May 3, 2013

I was diagnosed with DCIS on September 11, 2009. I had the lumpectomy done and was to have the Sentinal node bx’d. However because my tissue was too thick, the dye was unable to reach the Sentinal node after two tries. So the surgeon decided to remove my axilla; which was 34 nodes. Turned out all of my lymphnodes were negative. My Cancer was Stage 1 grade 3. Sure, sure, I was told that if the cancer doesn’t return within 5 years, I won’t get it again. BUT that doesn’t take care of the Lymphedema! 

Since then I have had lymphedema and didn’t know it. I am very overweight and trying to get back into shape. However, I am finding that doing yard work, housework, driving, sitting long periods of time, even walking swells my right side beyond belief and is extremely painful. I am eating healthy finally, but still weight not willing to fall off. 

I don’t have insurance and can’t even get Oregon Health plan because LYMPHEDEMA is NOT a recognized disease. Therefor, trying to get any treatments for it is near impossible. I can’t even afford the sleeves or the lymphatic massage(s). The lymphatic massage offered through ACS at my Oncology office, limits visits to once a month. That only gives relief for a few short hours. 

I have thought about trying to go for disability, but apparently, lymphedema is hard to PROVE and impossible to get disability for! It just seems that I swell up and never get the relief. Now my arms are two major different sizes. I hurt on my side as well down through the waist. Even my legs are different sizes! 

I am at a loss in every way possible! I feel like I am sitting and spinning with no where to go for assistance. *sigh*

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Rebecca’s Story

April 19, 2013

Hi, I am a breast cancer survivor of one year, and after chemotherapy, radiation, 4 surgeries, including lymphnode transferal, I still suffer from extreme lymphedema in my right arm and hand.  My mother also had lymphedema as a result of breast cancer, and has since passed away.  I have of course gone through extensive therapy, [...]

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Laura’s Story

April 13, 2013

I was diagnosed with Primary and secondary Lymphedema in 2005. Since then, I’ve tried the flexitouch pump to no avail. I have been to 2 Lymphedema therapists; one at St. Francis and one at Baptist Memorial Hospital. However since I live on a fixed income, I cannot afford the cost of replacing the bandages every [...]

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Sarah’s Story

April 9, 2013

When I was 9 years old, I sprained my ankle and my Mom knew something else was wrong because my ankle and part of my calf was too swollen and there was no break. After that I went from doctor to doctor of all specialties for 9 months (missing school often) until we were finally [...]

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Pat’s Story

March 29, 2013

I am a breast cancer survivor of more than 30 years and have had lymphedema in the right arm on the side of my mastectomy for the last 20 years. My arm aches all the time, and it swells, especially the forearm where I have had cellulitis several times. I manage to keep the swelling [...]

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Heather’s Story

March 9, 2013

My son Dylan (DOB 9/29/06) was born with lymphedema in his entire lower body – legs, feet and genitals.   I starting working to improve insurance coverage for the treatment of this disease when Dylan was just a baby and our insurance company denied his coverage for the prescription compression garments that he desperately needed.   I knew [...]

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Becky’s Story

February 19, 2013

I have been sick all my life with primary lymphedema, symptomatic since age 10, and I was only recently diagnosed at age 50. Doctors are not educated properly on lymphedema. When they see a patient with edema, they automatically try to blame it on the heart, lungs, liver, kidneys…everything but the lymph system. I know [...]

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Jenna’s Story (part 2)

January 5, 2013

(Part 1 of Jenna’s story can be viewed here.) I continued with my compression therapy, my insurance reluctantly agreed to cover both the bio sequential pumps and 1 pair of custom compression stockings.  After more than 10 months of struggling my legs have healed and for the most part the swelling is contained with stocking [...]

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Zoe’s Story

December 29, 2012

Yesterday, was the third day we visited a lymphedema therapist that my mom was sent to by her doctor for treatment. After unwrapping her garments, doing measurements and doing quick lymph drainage, she started wrapping quickly her enormously swollen feet back. While doing that, she kept saying that apparently this treatment is not working and [...]

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