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.
Hi my name is Gina. I found you on IG. My 14 baby girl was just diagnosed with lymphedema and I’m desperate to find help for her. Your story is very inspirational. She’s very athletic and has sky high dreams. Any advice?
I’d recommend finding the most knowledgeable medical professionals that you can. Find a good lymphedema therapist who can explain the options that are available for managing and minimizing the swelling. The right garments make all the difference in the world.
Everyone is different, of course, but lymphedema does not necessarily mean limiting athletic pursuits. My favorite athlete with lymphedema is Deborah Cordner Carson.
If you haven’t already, definitely check out http://www.lymphnet.org. There are a ton of stories and resources on that site. Hope this helps. Feel free to ask more questions!!
Soo… I have been looking for ages for people with lymphedema who share their story, but had no luck for a while. So I decided to share my story by building a website. I’ve been soooo insecure about my lymphedema and our stories are similar especially when it comes to these doctors.
So glad I found this blog.