Getting lymphedema feels like your GPS has led you to a dead end in front of a precipice that drops ten thousand feet. There’s nowhere to go. No way out. And there’s no way to get back home.
You’re suddenly stuck in a body that won’t work the way it used to. You can’t do the things you used to be able to do. And you wonder how many other things you eventually won’t be able to do.
Having lived with lymphedema for 17 out of my 40 years, I have come to a decision: There is nothing I can’t do.
I have busted through my dead end. Jumped off the cliff. And I encourage you to jump with me.
There are so many things I thought I’d never be able to do when I got lymphedema, and yet I have done them.
Why didn’t I think I could do these things? Sometimes I let doctors and medical professionals put up the walls. Sometimes I built the barriers myself.
The fact that I have accomplished these things has given me hope.
Here are the Top 5 Things I Never Thought I’d Do with Lymphedema…But Did. If I did them, so can YOU:
1.) Made a Career. I was 23 and an actress in New York City when lymphedema took center stage of my life on August 9th, 1998. Swollen legs, unattractive compression garments, the inability to stand on my feet for long periods of time and to wear certain costumes, the necessity of expensive compression garments with no way to pay for them on an actor’s salary…the curtain came down quickly on my lifelong aspiration to be an actress.
It took me years of sharpening and expanding my skills as a communicator, but I finally found a role where I can shine as a marketing and communications professional in the field of economic development, helping people grow their businesses and to find jobs.
Don’t abandon your talent, because of lymphedema. Re-apply your skills in a market that is in demand for the value you offer.
2.) Ran a 5k. When I first came down with lymphedema, I didn’t think I’d run again. My joints ached when I tried. I was scared. For good reason. The day I came down with lymphedema, I jogged in the hot August sun which was probably responsible for triggering my onset. Thirteen years later, my neighborhood advertised a local 5k race. I gave it another try and began to train (wearing my compression stockings, of course). This time, my joints didn’t hurt. As I trained, my lymph fluid was stimulated by the deep breathing and the frigid air of the cold morning runs. My body was ready to run. Since then, I’ve run three 5k races and dream of someday running a marathon.
Don’t give up on the activities you enjoy. Be patient and keep trying. Sometimes it takes awhile for your body (and mind) to adjust.
3.) Lost weight. To someone with lymphedema, this may seem counterintuitive. Swell and get smaller? It is attainable. I now weigh about 20 pounds less than when I got lymphedema. Compression stockings are more bearable. Lymphedema bothers me less day-to-day. How did I do it? Lots of vegetables, fruits, a low-fat, low-calorie diet and appropriate exercise, especially swimming and yoga.
4.) Flew to China. After my lymphedema diagnosis, I learned that air pressure inside airplanes may impact swelling, potentially worsening lymphedema. After that, hitchhiking on the New Jersey turnpike seemed a more appealing travel option than air travel.
Three months ago, my new boss at my new job charged me with orchestrating a trip for two-dozen business and government leaders to China. That’s 14-hour-plane-ride-away China.
I kept my compression stockings on…elevated my feet in-flight with a blow-up step pillow, wore out the rug walking the plane whenever the seatbelt sign was turned off, kept my compression stockings on and pillaged the drink cart for extra water when the attendants weren’t looking. I survived. So did my lymphedema — and my career.
Don’t let lymphedema hold you back from seeing the world — and expanding your career opportunities.
5.) Moved my life. After living in the New York City area for 18 years, I recently made a new beginning in Maryland.
Lymphedema makes your limbs feel heavy. But it can also weigh down your life too. Finding a doctor who knows what lymphedema is or a quality lymphedema therapist located within a 200-mile radius is tough. Establishing a support network of friends and an exercise routine at a nearby pool can take years.
Deciding to uproot yourself and start all over again is frightening. I took the leap.
In my new community, thankfully, I am finding the support I need for my lymphedema.
Time doesn’t stand still. Neither should you. Just don’t move the boxes yourself.
What are the things that YOU are most proud of doing, since getting lymphedema? What are you most afraid of trying and why? Share them in the comments section.