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.
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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*