The Top 5 Things I Never Thought I’d Do with Lymphedema…But Did.  And So Can YOU.

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:

Nobody but you knows that my compression stockings are holding me up in this television interview.

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.

My first 5k. Won't be my last.
My first 5k. Won’t be my last.

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.

Made it to the Great Wall of China with my boss Jim Coleman (thanks to the help of compression stockings!).
Made it to the Great Wall of China with my boss and dear friend Jim Coleman (thanks to the help of compression stockings!).

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.

My new paradise. The lap pool within a 7-minute drive from my residence.

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.  

8 thoughts on “The Top 5 Things I Never Thought I’d Do with Lymphedema…But Did.  And So Can YOU.”

  1. I didn’t think I’d get back to the tropics, which I love. I didn’t think I’d scuba-dive again (it actually seems to help the lymphedema). I didn’t think I’d downhill ski again, although I often have to wrap the night after since the leg does get a bit bigger.

    I’ve only had LE for 4 of my 54 years, and I was hospitalized with a raging case of cellulitis right after my diagnosis, so that traumatized me about LE more than I might have been otherwise. With so much unknown, and everybody’s bodies different, all of us have to kind of be explorers with this. I still think there are some things I’ll never do because of the LE – I don’t think I’ll go scuba-diving off Papua New Guinea, as I wanted to – and I do think there are some limits, inevitably. But they’re fewer than we think and there are the new possibilities. I kayak now, which I love, which I might not have gotten into as much otherwise.

    1. I have had Lymphedema since 2004 in both of my legs. I had vaginal and cervical cancer in 1991 (I was 28 years old) where they removed 58 lymph nodes from my pelvis and groin. Lymphedema did not present itself until 13 years after my cancer surgery. I have been a fitness instructor for 32 years; so when I asked the Lymphedema specialist if I could still teach my classes (cardio kick & RIPPED) she said that she didn’t know anyone who did, so she encouraged me to give it a try. I have also been a runner, so I still “jog” in the summer but just not as far.

      I wear the knee high Junzo stockings when I work out, otherwise I wear the thigh high stockings. My legs seem to stay about the same each day. I also have a “ramp” that my husband had made for me, so when I sleep my legs are elevated above my heart. The ramp has really been a great blessing for me. When I wake up each morning my toes are normal in size.

      I have had cellulitis too many times to count and once it turned into a very deadly strep “B” infection in my blood. I closely monitor my legs to make sure I don’t develop cellulitis. I had most of my cellulitis prior to developing Lymphedema, I think it is one of the main reasons I ended up with Lymphedema, so much damage was caused by the cellulitis.

      I would love to hear more about what types of preventative measures you take to keep your legs healthy. I love hearing the positive side to Lymphedema, because it can get depressing at times.

      I am so happy I found this blog. I look forward to keeping in touch with others who have Lymphedema in their legs. Most people I have met have it in their arms.
      Thank you,
      Peri Jo

  2. OK, so I haven’t flown to China, but career? 5K? Yes! Ziplining in Costa Rica? Damn straight! Lymphedema isn;t going to hold me back. Want to make sure I do something? Just tell me I can’t do it. Here are some links about me:

    Here is a video about my journey:

  3. This gives me hope,because I swell when ever I take a long car ride.Now I will try to be active and move aroun d more.

  4. Awesome, very encouraging. .I’m right there with with do you find clothes? Help
    And very good job..let me know any secrets..I am battling and doing good so far, I have it in my left leg for about 8 years now, and I have worked very hard to maintain it, but I struggle with clothes and compression you find this a issue?

  5. I developed this Lovely problem ten years after breast cancer. I do treatments daily, wear the garments and go forward. It is a daily work in progress. That progress got a little harder when I had my second Breast surgery and now have it in both arms. You just adjust and go. It is difficult at times and the word plodding comes to mind. However it is a choice and However difficult I choose to go forward. My husband is my encourages me daily.

  6. In reading your article, I realized my onset was in Navy Boot Camp! We obviously did a lot of marching, running and standing for long periods of time and one day about 5 weeks in after standing in an auditorium for 3 hours I felt the skin around my ankles swell and wrapped around the tops of my shoes!!!! It was frightening!!! My company commander looked at my ankles and even HE got shook up, and they see all kinds of odd things that happens during boot camp! Fast forward to now and I am a 10 year Breast Cancer Survivor and one of the lasting affects is Lymphedema in my left arm and it is constant. In my legs it comes and goes as it get aggravated, but never to the extent of that first experience.

  7. I just discovered your blog. Thanks for sharing what you’ve learned. I’ve had Lymphedema in one leg for over a decade — following surgery for ovarian cancer. And every August, I go on a week-long wilderness canoeing trip. Before retiring, I flew several times a year within the US and to Europe. I always bandage for flying, which means I always get patted down by TSA agents, but otherwise there are no real obstacles, other than my own self-consciousness or self-doubt, to living a full and interesting life. I’m glad to see more and more “lymphies” telling our stories on the Internet!

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