Treatment Funds the Cure: BrightLife Direct and Lymphedema Diary Team Up for LE&RN in Celebration of Lymphedema Awareness Month

2 Mar

What if I told you that your purchase of compression garments could help the fight to end lymphatic disease and lymphedema?  Well, THROUGHOUT THE MONTH OF MARCH, it will.

When you buy your garments from BrightLife Direct during March 2015, one percent of the total purchase price (on all orders that include the coupon code DONATE) will be donated to the Lymphatic Education and Research Network (LE&ARN).
BrightLife-Direct-Products

Why during the month of March?
March is Lymphedema Awareness month.  That means it’s our time to shine — all 100 million of us worldwide who suffer from lymphedema.  It is our moment to collectively raise our voices and demand funding for research to find a cure, adequate insurance coverage for medical treatment (including for compression garments) and full engagement from the medical community to increase prevention and early detection rates. Continue reading

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Coming Soon…a special announcement on Monday

28 Feb
Image via Lymphedema Mavens

Image via Lymphedema Mavens

As I write this post, the actual temperature outside is minus three degrees Farenheit.  Those of us in the northeast United States and elsewhere are anxious to say goodbye to what has been one of the coldest Februaries on record.  But there is another reason to be excited about turning a page on the calendar. March is Lymphedema Awareness Month!

Lymphedema Awareness Month is the time for individuals and organizations around the world to jump up and down, waving their hands to spread the word about our condition to elected officials, the medical community, friends and neighbors.

In celebration of our month, I will be making a special announcement on Monday.  I am really looking forward to sharing it with you.  Stay tuned, or sign up for email alerts to be the first to hear the news.

Until then, so long, February.  Take your time coming back next year.

VIDEO: The Perfect Wintertime Lymphedema Activity

7 Feb
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.

Please share, comment and sign up for email alerts, so you don’t miss any future posts.  Thanks for reading.

Compression Stocking Tip #3: The “Four P’s” of Choosing a Compression Stocking Dealer

1 Feb

HandshakeCompression 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.

I encourage you, as a consumer, to look for the “Four P’s,” when checking out a new compression stocking dealer. Continue reading

Compression Stocking Tip #2: Where to Buy Compression Stockings

11 Jan

Where do you buy compression stockings?  Not at the mall.  And not at your local drug store either.  Sure, just about every CVS and Rite Aid pharmacy carry compression garments of some kind, but the support hose offered there is the compression equivalent of a gentle breeze caressing your leg.  Lymphedema legs require sustained, gale force support.

BONUS TIP: Stocking dealers want your business and may be flexible on price. It doesn’t hurt to ask. I’ve done it successfully. When I found a new dealer I wanted to switch to, but their prices were higher than my old dealer, I told them about the lower price I was getting. They honored the lower price without even asking to see a sales receipt.

BONUS TIP: Stocking dealers want your business and may be flexible on price. It doesn’t hurt to ask. I’ve done it with success. My current dealer honored the lower price of my previous dealer without even asking to see a sales receipt.

Only a handful of companies manufacture stockings globally that support our limbs with enough pressure to be effective.  I have tried just about all of the major brands, including Juzo, Jobst, Sigvaris, Solidea, Medi and Therafirm.  Allegro and Solaris are the only major brands I have yet to try.

However (as an industry norm), these stockings cannot be purchased directly from these manufacturers – only from authorized dealers.

While the term “dealer” may conjure images of shady characters in dark alleys peddling illicit product in ziploc baggies, compression stocking dealers range from mom-and-pop retail pharmacies to online-only providers.

Continue reading

VIDEO: LD Compression Stocking Tip #1: Use the Floor

5 Jan

Like many people with lymphedema, when I was first diagnosed, I was told to wear compression stockings every waking hour for the rest of my life.  But I wasn’t told anything else about compression stockings.  This video kicks off a featured blog series of compression stocking survival tips called, “A Leg Up: Compression Stocking Tips – What the Doctors Don’t Tell You.”  Throughout the series, I will share information that I wish I had been told the day I was diagnosed.

Get a leg up on your lymphedema – click below to watch or read the transcript that follows.  Please share, comment and sign up for email alerts, so you don’t miss any future tips.  My next tip will be on “Where to Buy Compression Stockings.”

Continue reading

Mani/Pedi-mania: lymphedema nail care

8 Sep
Manicure

My manicurist, Ligia, painting within the lines much better than I could ever do. Yes, I took this photo with one hand.

Every Sunday afternoon I treat myself to a manicure. Sure, it helps keep me from snagging my compression stockings by maintaining well-groomed nails. But I’m also more Jackson Pollock than DaVinci with polish, so it’s best left to the professionals. Besides, the hot towel and hand massage are the real joy anyway.

As for my pedicure needs, however, I’m on my own. Aside from my innate aversion to showing my feet in public (that pre-dates lymphedema) and my highly ticklish nature, getting a pedi is something to be highly cautious about for those of us with leg lymphedema.

Here’s why a pedicure isn’t worth it for me: Continue reading

Managing Lymph-tivities

3 Sep

Idina MenzelFor most women, getting ready for work is like preparing for opening night on the Broadway stage. All of the makeup, hair and costume acrobatics performed on a daily basis before 7 a.m. would give even Idina Menzel pause.

For women with lymphedema, getting assembled for the day is even more challenging. Our routines include more than the application of foundation, blush, mascara and hairspray.

What are among the most common activities for lymphedema ladies? Remove compression bandages (5 minutes), roll up compression bandages (10 minutes), shower/dry-off/moisturize/elevate legs (30 minutes), conduct manual lymph drainage (20 minutes), don compression garment or garments (15 minutes), choose the least restrictive ensemble for the day – from the feet up (10 minutes). With all of these added lymph-tivities, it is a wonder anyone with this condition ever makes it out the door!

As a working professional who has been living with lymphedema for 16 years, I am continually looking for more efficient ways to manage my health situation. One lymph-tivity that I have eliminated from my morning routine, saving me valuable time: morning shower and post-shower leg elevation. Continue reading

Dad. My Lymphedema Hero.

13 Jun

A major hurdle for anyone with lymphedema is figuring out that you have lymphedema.  Diagnosis can take months, even years, due to a lack of knowledge, research and awareness in the medical community. It took entirely too long for me to get an accurate diagnosis, and it might have taken a lot longer without the help of my dad.

Although I was a grown adult at the time and living in New York City (hours away from my parents), mom and dad were both actively involved in my life and in trying to solve the mystery behind the sudden swelling in my leg.

When I came home for Christmas, four months after my leg first ballooned I still had no diagnosis, no treatment, no plan.  My Dad, however, had not been idle. He had researched my symptoms through his own channels and online. During my visit, he unceremoniously handed me a medical newsletter he had discovered.  In it was a description that matched my symptoms – “a feeling of heaviness and tightness in the affected limb accompanied by achiness.”  I had used similar words to describe how I had felt!  For the first time, these words were coupled with a name – lymphedema.  And another word: incurable.

Continue reading

Riding in comfort: Finding the right ‘Lymphedemamobile’

11 Jun

Getting lymphedema wasn’t my choice. And yet, nearly every choice I have made since getting lymphedema has been made with the condition in mind.

Shoe shopping? Lymphedema is there to guide me to the non-binding, sensible flat. Sadly, no Jimmy Choos for the fat feet.

Groceries? Lymphedema makes the responsible low-sodium, low-fat selections for me (Although I sometimes manage to slip a bag of sour cream and onion potato chips into the cart).

Naturally, when it was time for Luke and me to pick out a new car, my lymphedema was included in the decision-making process.

TrafficCar choice is important, especially for people with lymphedema. Americans spend nearly three hours a day in their cars (That’s a lot of time for lymphatic fluid to collect in the feet, ankles and legs.)

Car manufacturers offer loads of amenities designed to keep drivers and passengers comfortable – like heated seats, power adjustable lumbar support and dual zone climate control. While these “add-ons” are attractive luxuries, the only features that lymphedema cares about are seat height and leg room

Let’s take them one at a time. Continue reading