“I have Lymphedema in both of my legs – for 26 years in my left leg, and 9 years in my right leg. At the same thing that I developed Lymphedema, my dad died. Having Lymphedema can certainly be difficult at times, but, I think it can make us stronger individuals. Yes, we can be happy and live satisfying and rich lives. I used to use my Lymphedema and the death of my father as a crutch, but after completing a triathlon (at my pace) in 2009, I know that I can do anything that I set my mind to – I may just have to work at it awhile.
2011 was a big year for me. Not only did I complete my Bachelor’s Degree in Labor Studies from the National Labor College, get published in an upcoming book about Lymphedema to raise funds for patients with Lymphedema who need help to get garments (for more info: http://lighthouselymphedema.org/Home.htm), and relocate to Brooklyn, NY, I was married on October 1, 2011 to my best friend and long-term partner, Doug. We haven’t gone on our honeymoon yet, but, we hope to go someplace far away like, Japan. I enjoy doing yoga and I recently started volunteering in a Child Life Unit at the hospital where I was born in Brooklyn, NY.
Giving back by playing and creating art with children who are sick is rewarding. I get back so much more than the few hours I put in each week. Plus, I’m considering a career change from what I currently do now – office work, to become a Child Life Specialist. That would mean going to Grad School, which is what I’m considering for the near future. Another dream for the future is to start a Lymphedema Support Group in New York City.”
October 2011
I enjoyed hearing your story. I was diagnose with lymphedema in my right leg about 9 mos ago after undergoing chemotherapy for ovarian cancer. So it is relatively new to me. What I really was interested to hear was about your running. How does that affect your leg? Do you run with a stocking? Does the running increase the fluid in your leg and make it larger? Does your doctor have any reservations about you running? Hope you don’t mind the questions but I would love to try running again but have been afraid it would make my leg more swollen? If you care to share, I would love to know how it feels for you.
Hi MilAnn,
Thanks for your feedback and sorry for just now seeing your post!
Whenever we do any type of exercise, it is extremely important to wear some form of compression garment, be it wraps or stockings!
My physical therapist at the time that I was training for the triathlon told me that my measurements were down in all areas of my legs. My doctor eased my mind by telling me that other than having Lymphedema (LE), I am a healthy woman and gave me clearance to participate in the triathlon.
Having LE shouldn’t disable us, rather it should enable us to take the best possible care of ourselves so we can live a high quality of life. My feeling is that if running makes you happy, you should at least try it again and monitor your condition.
Running, and other forms of exercise may make our lymphedematous limbs increase in size temporarily, however, exercise is very important in the maintenance of our condition because when our weight is normal our lymphatic system functions more effectively. Walking is very good and I find myself doing a lot more of walking (even long distances) these days.
Striving to live a life that is not sedentary is key.
Always remember to listen to your body and drink many glasses of water each day, even though you may not be thirsty. This, along with exercise, will aid in the circulation and draining of excess lymphatic fluid.
All the best, Rosie
Thank you so much for your feedback. I do wear my stocking when I walk but want to work back to jogging. I do need to drink more water and i plan to build that into my regimen. My doctor has always encouraged me to exercise and says my lymphadema is quite slight but I do plan to check with a lymphadeama therapist as well. You are giving me encouragement and I really appreciate your note.
Mil Ann
You’re welcome, Mil Ann! I’m glad that I was able to help and hope that my message not only encourages you to do the form of exercise that you love to do but other lymphies, as well!
P.S. If some of us can do triathlons and CrossFit, then some of us can enjoy jogging and running! From what I read from others online, adding extra compression, be it from another stocking and shorts/pants/socks, may be helpful to keep the swelling down. Wrapping our legs afterwards will also help.
Hello,
Thank you for your story. It was strange to read your story. When I was 19, my father died. I did not leave the house for a while cus I was so sad and not feeling into fun things. Four months later some friends of mine convinced me to go on a trip: it was a very hot summer… I came back and saw a swelling in both my feet: primary le in both lower limbs….I could manage well, but ten years later I fell hard on one leg: a huge swelling appeared up to my knee. I have been visiting all kinds of doctors. I also notice a swelling in my upper leg, but maybe my good leg is getting more skinny from all the efforts and it is not like my ‘bad’ leg is getting bigger… no idea.
At the moment I am considering to have a lymph node transfer. I know it is risky, but in the end I am so tired off this… I am willing to give it a shot.
Take care! You are really an inspiration with everything you achieved!
Sorry for the much overdue response as I am just reading this for the first time today. Thank you so much for sharing your story! I agree there are a lot of similarities and parallels in our lives regarding the onset of lymphedema and the death of our fathers.
Thank you for the kind words! :)
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