People have been asking me “so what are you going to do now?” Well I am still going to promote lymphedema awareness as much as I can, I am organizing a Nova Scotia Lymphedema Support Group and I am in the planning stages for the 2nd Annual Lymphedema Awareness Seminar for next year but what I feel that I need to do most is FIGHT for LYMPHEDEMA COVERAGE.
From the moment I started looking for treatment, many years ago, I was told that there was nothing that was covered by the province. If I wanted treatment I had to pay for a private therapist, pay for my wraps and pay for my compression garment. I had insurance but it would only pay for $250 of my therapist (my bill was thousands), it would not pay for my wraps (close to $1000 if I remember correctly) and it did pay for the custom stocking). I did not have the finances to do as much therapy as I needed, I tried to rush it so it did not work as well as it should have and my legs never did get to a size or shape that would work with the compression stocking (the stockings that were specially measured still cut off my circulation, no matter what type I tried).
I had known that there were a couple of lymphedema therapists at the hospital but I had always been told that the only people who could go there were people who got their lymphedema from cancer treatments. They have now allowed me to see them. I will still have to pay for supplies but I will not have to pay for the therapist. I have been going since Thursday and we are taking it slowly so we are only doing 1 leg at a time ( which is fine with me since I am not paying for the therapist…). It is being wrapped with special compression wraps. The difference in my leg size and feel in one weekend is amazing. This is something that should be offered to everyone who has lymphedema and my goal is to find out why it is not and how we can change it!!! (by the way, New Brunswick does offer this to everyone with lymphedema).
Stay tuned…I am not done yet!!!