Memorial Day in America is a solemn occasion, but it marks the unofficial start to summer in the United States. As most Americans shed heavy clothes and head for the beach with their family and friends, those of us with lymphedema brace ourselves…and feel isolated.
Our enemy – heat – has arrived. We scour the stores (unsuccessfully) for summer pants that aren’t cropped or in some other way designed to reveal our compression stockings and swollen legs. We seek shelter in air-conditioned rooms. We hope and pray that our “summer swelling” will go back down when the cooler temps return in the fall.
Lymphedema can make us feel like a prisoner in our own bodies. Especially in the warmer temps. This summer – try not to let it.
It’s hard to believe that growing up (pre-lymphedema), summer was my favorite season. But I didn’t love summer because of the heat. I loved it because summer was freedom. I could do what I wanted with my time. Be with my friends. Practice with my synchronized swimming team. Go out on dates. Go to the movies.
Thanks to Winter Storm Jonas and the nearly 30” of snow he left in his wake, I and millions of others along the east coast have been holed up in our homes for 36 hours and counting.
With nowhere to go and a new book awaiting me on my Kindle, I decided to give my legs a snow day too. No compression stockings. Bare legged. A break from the normal 16 hours a day spent cooped up in tight, thick nylon-spandex, from toes to tummy.
What a glorious day! Toes wiggling. Thighs rubbing against cozy Cuddl Duds softness. No pinching, pulling, or squeezing. Freedom!
Don’t wait for a “Snowmaggedon” to give your legs a day off. If you are able, try letting them “air out” for a day, a day of freedom, while still maintaining lymphatic flow.
- Take a load off. Limit the time you spend standing. Keep your legs elevated above your heart as much as possible. The natural effect of gravity will facilitate lymphatic flow. When cooking and preparing meals, try sitting on a stool or chair. Logically, spending significant time on your feet without compression is not recommended.
- Kick your feet up. Literally. Find a chair that lifts your legs up while taking pressure off of your back. Watch a movie or read a book while compression-stocking-free.
- Hydrate your legs. Pampering your skin is a luxury you don’t have while confined to compression stockings; so take advantage of this time. Every few hours, apply lotion to your legs, working it in with upward strokes to encourage lymphatic flow. And don’t forget your feet! I recommend Eucerin Smoothing Repair for Dry Skin or Medi Night Creme.
- Wear cozy socks. Let your feet experience what normal feet do – the luxury of soft fabric directly against the skin. Choose a style of sock that does not bind at the top, cutting off lymphatic flow. Diabetic socks are made with this in mind. Non-binding socks made by Sockwell (pictured right), Soft Fit and Softop are available through Footsmart.com or Amazon.
Next Friday night at a fundraising dinner the Lymphatic Education and Research Network (LE&RN) is honoring me for raising awareness of lymphedema.
As LE&RN’s executive director, Bill Repicci, says, “Although an estimated ten million Americans suffer from lymphedema, this disease remains in the shadows. LE&RN honors Britta for her ongoing efforts to bring lymphedema into the light, champion research and give this cause a voice.
The dinner is on March 7th at 7 p.m. at the Putnam County Golf Course (about an hour and a half north of New York City) and will feature dancing, music and raffle prizes. Tickets are $75 per person (youth tickets $45 -12 and under) and can be purchased by clicking here or by calling (516) 625-9675. All proceeds to benefit LE&RN. Continue reading
Caring for lymphedema can feel like a full-time job. But it’s a position that doesn’t pay a salary or come with benefits.
So, to help pay the bills in my household, I work for an elected official in New York. I do anything and everything I can to help my boss communicate with the public and the press in a positive and straightforward manner. It’s a 24/7 job. That’s not a complaint, just a fact.
My philosophy is: keep the mind engaged and you will forget about the uncooperative body.
From the time my alarm clock goes off in the morning to the moment I shut my eyes at night, I am constantly reminded that I have lymphedema in my legs. When my bare feet touch the plush rug on my bedroom floor and I sleepily stagger to the bathroom to brush my teeth, I savor every step. I think to myself, “God, this feels good.” Spreading my toes a little wider as I stride back across the hard wood floor in the hallway, I try to push out of my mind the thought that within minutes I will once again be encased from my toes up to my waist in compression stockings. My iron legs, as I call them.
On Sunday, September 8th at 11 a.m. the Lymphatic Research Foundation (LRF) will host their 2013 Walk for Lymphedema and Lymphatic Diseases. It will be at Eisenhower Park in East Meadow, NY. Lymphedema Diary is one of the sponsors of this worthy event.
LRF was founded the same year that I came down with lymphedema, so I feel a certain kinship with this organization. It was founded by Wendy Chaite, whose daughter was born with systemic lymphatic disease and lymphedema. Frustrated by the lack of available medical and scientific answers – to which readers of this blog can surely relate – Wendy quit her successful law practice and founded LRF to promote research of treatments and cures. Wendy’s daughter, Melanie, is going into her junior year at New York University and was the keynote speaker at last year’s walk. You can watch a video of her speech here. It is a must watch and only about 5 minutes.
In the summer of 2003, five years after the onset of my lymphedema, my parents gave me a present that has made my life easier every day since — an inversion recliner. If I were to recommend one product to my fellow lymphedema sufferers, it would be this one.
You may have to save up for it though. I’ve seen prices range from $250 to $2,400*, depending on how many bells and whistles you are willing to pay for such as vibrating massage, heat settings and self-inflating lumbar support. But the only feature that is important for our purposes is that the chair gets your legs above your heart. That position allows gravity to drain the lymphatic fluid back towards your heart.
After a shower, a long day at work, or just relaxing in front of the television, this chair gives my legs the lift they need without the help of tight compression stockings or bulky bandages. This chair is an island of comfort in my home and I visit it every day.
It was tough to watch Firecracker Films’ documentary, ‘The Man With the 132-Pound Scrotum’, which aired in the U.S. on TLC last night, but not because of the graphic content and nudity. Rather, my agony was the result of waiting for a moment that never came: an accurate explanation to viewers of what lymphedema is and how it afflicts millions of people worldwide. On the contrary, the producers depicted lymphedema as simply a “mass” that can be “removed” and be done with, as opposed to the incurable, progressive condition that it really is.
This Monday, August 19 at 9 p.m. TLC will air an hour-long program called ‘The Man with the 132-Pound Scrotum.’ The show follows Wesley Warren, Jr., a 49-year old Las Vegas man, who suffers from scrotal lymphedema.
The TLC teaser fails to explain how Mr. Warren contracted lymphedema of the scrotum, but according to Dr. Reid (inventor of the ReidSleeve), the condition can be brought on by heart failure, liver failure, venous obstruction, lymphatic obstruction, or prior surgery or trauma.
As someone who has struggled to live in dignity with primary lymphedema for 15 years, it makes me cringe to think of all the people who might be sharing a laugh on Facebook at the expense of this poor man or gawking at his agony. And it makes me angry that lymphedema and lymphatic disease – a condition that affects millions of people worldwide – only gets attention when it garners circus-freak headlines.
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.”