When the medical professionals say that lymphedema is a progressive disease, they aren’t kidding. In the 15 years that I’ve had the condition, the development of my lymphedema can be tracked by the compression garments I have worn to manage it.
Compression garments are stockings or sleeves or some other type of clothing that provide gradual compression that pushes the lymphatic fluid towards the heart (meaning the garment is tightest at the bottom of the limb, i.e. the ankle or wrist,and loosest at the top of the limb).
Some lymphedema patients can’t fit into compression stockings due to the severity of their swelling. I don’t know how they can function or bear the pain. For myself, I cannot remain in a standing position for more than a few minutes without my stockings on before I start feeling discomfort. Within a matter of hours swelling would follow and my legs would be back to day one of my onset. Without stockings, I could not function day-to-day. I could not go to work, go for a walk, or do any of the necessary and normal activities of life. These stockings do the work that my lymphatic system is incapable of doing.
So over the past 15 years, I’ve gone from a school-girl knee-high stocking, to a sexy thigh-high length, to a full pantyhose style that extends past my belly button that I have dubbed “The Grandma.”
I probably should have been wearing “The Grandma” from the beginning to prevent the progression from occurring, but anyone who has tried on these stockings would understand why I wouldn’t have done that unless I really felt I had to. And how was I supposed to know I had to?
The worst part about lymphedema has always been the unknown. Is it going to get worse? How much worse? When? Will it ever spread to my arms or to other parts of my body? Will it get worse if I were to become pregnant? If I have children, will I pass it on to them? Am I more susceptible to other diseases originating in the lymphatic system such as lymphoma?
No one has been able to give me definitive answers to these questions, so I’ve chosen to heed my mother’s advice: control what I can control.
Eat a healthy diet, drink lots of water, keep my weight down, exercise regularly, get a decent night’s sleep, maintain meticulous care of my skin, wrap regularly — these are all things that (theoretically) I can control in my daily life. I can also avoid hot baths, sunbathing, carrying heavy bags and wearing any jewelry or clothing that pinches. That’s a lot of things that only I can do and that cannot be accomplished by popping a pill.
If you have lymphedema, remember: You are progressive too, so control what you can control every day to prevent your lymphedema from getting worse. It is not easy, but stay vigilant. Who knows, maybe someday they will find a cure to this condition of ours.
“Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.” – Helen Keller
Lymphedema Diary 
Looking forward to following your blog and sharing experiences.. Helen
Hi Britta, I love the definition in your blog title. So true! I have had lymphedema in my left leg for eight years. I was lucky to have good therapist for the initial onset and learned to wrap at night for reduction and wear a compression stocking during the day. The only time my affected leg is uncovered is in the bath. After five years of twice daily massages I no longer do anything except workout daily and swim three times a week. This has managed to keep the lympo leg almost the same size as my “good” leg. I do worry about it “spreading” to the good leg but the only time I wear “Grandma stockings” as you aptly call them is when I fly. Do you have primary lymphedema if so, do you think that you are at greater risk for it to spread than someone with the secondary sort?
Sherry, that is really impressive! You no longer wear daily compression stockings? I do have primary lymphedema – check out my About page. I can’t say that I’ve seen research on whether primary or secondary lymphedema is more apt to “spread” to other parts of the body. You might be on to something.