After spending years quietly managing my lymphedema and focusing on spreading information on sarcoidosis, I have decided to begin a new venture. Not only will I be sharing information on lymphedema, but I will also be learning new ways to manage my own case of it. (For years, my doctors have just squeezed my legs, confirmed that I was wearing compression hose, and sent me on my way. Not once did any of them mention physical therapy, wrapping, or pumps. I don’t know if I’ve had lymphedema too long for these things to be effective, but I won’t know until I find a new team of doctors.) Welcome to a new season of my life.
WHAT IS LYMPHEDEMA?
The following links take you to sites that describe it better than I could:
Mayo Clinic– great general information
WebMD- more general information
Signs and Symptoms of Lymphedema (including information on stages)
WHAT IS THE DIFFERENCE BETWEEN PRIMARY LYMPHEDEMA (the kind that I have) AND SECONDARY LYMPHEDEMA?
National Lymphedema Network gives a good description. The oversimplified answer is that primary lymphedema occurs at birth, puberty or adulthood on its own. Secondary occurs as the result of a something that impacts the lymphatic system such as an infection, trauma, or cancer (directly or as a side effect of cancer treatment).
WHAT IS THE NEW VENTURE?
This week I made the decision this week to become a Lymphedema Ambassador for the National Lymphedema Network. An ambassador serves as an advocate, mentor, educator, and supporter. Unfortunately, I seized the opportunity prior to getting my blog filled with helpful information for those who have lymphedema. Be patient with me as I get more information posted on this site. I have been using lymphedema-related hashtags on Instagram under my the_s.o.u.l._inspiration account.
Here’s my bio as posted on the Ambassador page:
Primary lymphedema diagnosed at age 11
I was diagnosed with lymphedema in my left leg in 1978 at the age of 11. The only information that my parents and I received was that the condition was chronic, and I’d need to wear a customized “elastic stocking.” I complied with the not-so-flesh-toned (i.e., beige) stocking because I had no choice (and because it got me a permanent Get-Out-of-Gym-Class-Free card). Once I went to college, I ditched the stocking, preferring to be cute although uncomfortable.
Over the years, my lymphedema gradually worsened, and by the time I was in my mid-30s, both legs were affected. It was time to give compression hose another try. From then until Spring, 2015, I wore black compression hose religiously. No one knew that I was wearing them because I wore long pants year round. When I headed to the gym, I wore my hose under long leggings or yoga pants.
In Spring, 2015, I learned about Deborah Cordner Carson, an accomplished Crossfit athlete with lymphedema. While I was impressed with her athletic ability, what really changed my life was the fact that she wore her compression hose openly. As I started following her story and that of other young women with lymphedema, I made an important discovery: We no longer live in a society which expects you to hide your conditions.
I now wear shorter skirts and capris. At the gym, I wear shorts. I have an assortment of compression hose: (genuinely) flesh-toned, dressy, and sporty. The younger generation lured me out of hiding, and I’ve never felt freer to be myself.