If you are living with lymphedema (LE), you know that heat is our kryptonite. It expands our blood vessels which increases the amount of fluid pushed into our tissues, straining our impaired lymphatic system and causing swelling. If we don’t manage this swelling our lymphedema progresses, causing more pain and creating more vulnerability to infection.
In my case, LE has affected my lower limbs. Since my first lymphedema symptom when I was 13 and my left foot began to swell, I adopted a strategy. This strategy has helped to reverse the impact of heat on my body and to slow the progression of the disease. My secret: I end all my showers with cold water on my LE-affected areas.
As the clock strikes midnight this New Year’s Eve, it will mark the beginning of my 20th year of living, coping and, yes, thriving with lymphedema! In this video, I share the resolution that will help me not just to survive, but to THRIVE, with lymphedema.
Sexy is usually not a word that comes to mind when you think lymphedema. Compression garments. Pneumatic pumps. Bandages. Accessories like these are not likely to be spotted in Vogue’s Fall Fashion Preview.
But last weekend, I met a woman who can make any lymphie feel attractive – and improve their lymphatic flow – by starting with one of the first things they put on in the morning – a bra.
When you have lymphedema or are at risk for developing lymphedema, it is suggested that you avoid clothing or jewelry that restrains lymphatic flow. One of the biggest flow offenders? Underwire bras. The wires, intended to support and shape the breast, can dig into lymphatic vessels, encouraging the buildup of lymphatic fluid in a limb.
So what’s a fashion-forward lymphie to do?
One option might be to let the “girls” go free. At home on the weekends? Absolutely. At the office presenting in front of your staff? Not recommended.
Another option is a well-fitted, wireless bra. Finding a bra – any bra- that fits comfortably is a feat. Finding one without a wire that fits well and looks sexy? That’s gold medal worthy.
Meet the Olympic champion of wireless bra fitting – Ilissa Manes of Peach.
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.
Although June 21st is the calendar start of summer, Memorial Day (in America) marks the unofficial start. For the average person, the season means fun, sun and sandals. For those of us with lymphedema, it can mean swelling, sweat, and praying for September to come early.
When you are a lymphie, heat is a four letter word.
Putting on and then wearing thick, tight compression stockings all day, every day is challenging enough. Add eighty-plus-degree-heat and a bucket of humidity, and we are ready to volunteer for the crew of ‘Ultimate Survival Alaska.’
For women (like me) who must wear full-pantyhose compression stockings, the most unpleasant hazard of the summer heat can be yeast infections.
Yeast infections are not listed as a side-effect on stocking product materials. Neither is your regular doctor likely to warn you about them, because (GROAN) the medical profession lacks focus and funding on our field of study.
Yet I assure you, yeast infections and pantyhose compression stockings go hand-in-hand. Yeast thrives in warm, moist places, causing a fungal infection resulting in itching, redness, swelling, burning and a discharge that looks like cottage cheese. Summer fun, it is not.
So what can you do to avoid developing this uncomfortable medical condition on top of an already uncomfortable medical condition?
Victoria isn’t the only one who knows this secret. Some manufacturers, for an extra fee, can remove the crotch from stockings. Juzo offers this as a regular option in their Soft product line. Unless Dr. Ruth is on the board of Juzo, one would surmise there was a medical function to this design.
An open crotch promotes a cool, dry and airy — how shall we say….”environment.” Don’t negate these positive effects by wearing tight pants or synthetic panties. In hot and humid weather, skirts and cotton panties (or none!) are the way to go. In addition, be sure to change out of wet swimsuits and gym clothes immediately after a workout.
If you are like me and come from the shopping school of “When you find something that works, buy it in every color,” you may have to adjust your purchasing habits. Compression stockings are expensive and they do not last forever.
Stockings are meant to be worn, washed and worn again. If they linger too long in your dirty clothes basket, the fibers begin to deteriorate. But a life of coming home from work and doing laundry every day is pretty depressing – and not always possible.
So the number of stockings you purchase depends on your budget limitations as well as your lifestyle preferences.
Here are five stocking lifestyle profiles. See which one fits your budget and lifestyle the best.
#1 The Optimist If you have the time (and inclination) to wash stockings every night, then potentially you could buy just one pair. But I wouldn’t recommend it. Having only one pair of stockings leaves little drying time after washing – and zero room for error should your stockings get damaged.
#2 The Obsessive Compulsive The minimum number of stockings I recommend is three. Two of the three pairs are for regular wear (interchangeably every other day). The third is to be kept as a spare and worn only in case of emergency. An emergency is when one of the first two have been damaged and are no longer wearable. An emergency is not when you are too tired to launder the other two pairs. Beware that having only two pairs of stockings in the rotation means you have to stick to a daily or every-other-day washing routine.
#3 The Athlete If you are very physically active, consider buying four pairs. Two for regular wear, one for exercising and one for emergency use only. With the exception of swimming, all exercise should be performed while wearing compression stockings. If you can afford the expense, then you will enjoy the convenience of having a fresh pair of stockings to change into after going for a run or taking in a yoga class.
#4 The Fashionista Beige can get old real fast. Luckily, stocking vendors have caught on and now offer garments in a variety of shades. If you want to add color to your legs, then factor that into your budget. I get a lot of use out of black stockings during the winter, in addition to beige-colored stockings. That means I order about twice as many stockings in the cold months as I do in the warmer weather.
#5 The Hoarder: Ordering in Bulk I’ve had a recurring nightmare about my favorite compression stockings being discontinued. I wake up in a cold sweat, refreshing Juzo’s product website until I fall back asleep. If you win the lottery, you might be tempted to stock up on your stockings. Resist. For two reasons.
One, stocking return policies usually extend only 30-to-90 days from the date of purchase. If you crack open a pair that you have been hoarding for six months and discover an issue with the fit or have some other issue, you may have difficulty securing a replacement or refund.
Two, compression stocking technology is constantly improving. The style you are in love with now might be even better in a year’s time. The stockings I first donned in 1998 feel like sandpaper compared to the updated version I wear today. Over time, improvements are made to just about every aspect of the garment.
Earlier this year, Juzo made a change to the waistband of the Soft garment I wear. No more bulky elastic to thread through the waistband. Now it’s smooth and fitting. More comfortable and less conspicuous under clothing. If I loaded up on Softs, I’d be kicking myself for not being able to enjoy the new model.
For those of us with lymphedema, compression shopping lacks the fun and spontaneity of regular shopping. Our choices involve more than color and style; our choices directly affect our comfort and health. Making informed purchases of compression stockings should help to eliminate financial or emotional “buyer’s remorse.”
This stocking’s too tight. This one’s too loose. This one’s juuust right. Sometimes searching for the right compression stocking can make me feel like Goldilocks. But finding a stocking that fits well, looks decent and prevents swelling is no fairy tale. It is possible.
First, you have to learn how to recognize the feel of a good compression stocking fit. Compression stockings are designed to improve the way the body feels (and operates). They should make you feel better, not worse. My happiest days of the year are the days I crack open a new pair of compression stockings.
So what do I feel, when I pull on a pair of stockings that are juuust right?
Compression stockings alone do not move lymph fluid. They help prevent more fluid from collecting. Only exercise (combined with compression stockings), massage and therapeutic devices can propel lymph fluid through uncooperative lymph vessels back toward the heart, where it belongs.
I do my best to exercise regularly, because exercise stimulates lymphatic flow. In the wintertime, however, it is more difficult for me to get motivated to exercise.Here in New York state, we have had a great deal of the fluffy white stuff this winter. If you live in a similar area, you might want to try an exercise that’s fun, great for lymphedema and sure to keep you moving during these cold months. It’s called snowshoeing.
(Click below to watch the video for a demonstration – or read the transcript that follows – to see how snowshoeing is a perfect lymph fluid-moving wintertime activity.)
Special thanks go to my mother and brother, who gave me the snowshoes and poles as a Christmas present this year. My family has always encouraged me to try new things as I cope with lymphedema. You never know what new activity, product or routine could make an impact in the successful management of this condition. I am very lucky to have cheerleaders to keep pushing me past my comfort zone, and to make sure I never lose hope that we all can find a better way to live with lymphedema.
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Compression stockings squeeze you enough. Your stocking dealer shouldn’t squeeze you as well. So, how do you choose a business that will provide you with products at a fair price with good service that you can count on?
When choosing a compression stocking dealer, always remember -you are a consumer, not a patient. Stockings are a product – an expensive product – and you are a consumer paying money (usually a lot of money) for goods. You deserve courtesy and satisfaction in your purchasing experience.