Tag Archives: secondary lymphedema

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

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

Happy Lymphedema Awareness Day

6 Mar

Lymphedema Awareness DayThere is nothing joyful about having lymphedema, but today there is reason to be glad.  Why?  Because today is National Lymphedema Awareness Day.

And now it’s official here in New York thanks to the dedicated team from the Lymphatic Education and Research Network (LE&RN).  LE&RN’s staff traveled to the state legislature in Albany this morning to be on hand as two resolutions were read: one to honor Connor Looby as LE&RN’s Youth Ambassador and another to recognize March 6 as Lymphedema Awareness Day in New York.

Since more people in the U.S. suffer from lymphedema than multiple sclerosis, AIDS, muscular dystrophy and Parkinson’s disease combined, it’s about time we got a day.  Maybe we should have asked for a month! Continue reading

Bringing lymphedema ‘into the light’

26 Feb

LE&RN LogoNext 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.

Britta Vander Linden

Me blushing

*blush blush*

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

Go with the Flow: Tips to Manage Lymphedema at Work

8 Jan

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.

workSo, 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.

Continue reading

Give to a Cause You Know

30 Dec
Connor Looby is LE&RN's Youth Ambassador and suffers from a rare lymphatic disease (intestinal lymphangiectasia) and lymphedema. Connor is only 7 years old, but he has joined in raising awareness of his disease and helped to raise funds to find a cure. Will you join Connor and make a generous end of year donation?

Connor Looby is LE&RN’s Youth Ambassador and suffers from a rare lymphatic disease (intestinal lymphangiectasia) and lymphedema. Seven-year old Connor has helped to raise awareness and funds to find a cure for the millions who are afflicted with lymphatic diseases. Will you join Connor in his fight and make a generous donation today?

If you are thinking about giving a charitable donation before the end of the year, I recommend considering the Lymphatic Education & Research Network (LE&RN).  This organization recently changed its name from the Lymphatic Research Foundation and expanded its mission after 15 years of providing hope, inspiration and progress to the millions of people who suffer from lymphatic disorders like me.

Simply put, LE&RN has done more to put lymphedema on the medical radar and to directly sponsor lymphatic research than any other organization of which I am aware.   Continue reading

There’s no place like home

19 Nov

I owe my lymphedema an apology.  Over the past 60 days I have put it through the wringer.  I’ve done just about everything we are told not to do as lymphedema sufferers.  Work 12 hour days, 7 days a week? Check.  Subsist on pizza, coffee and Halloween candy? You bet.  Exercise?  Nope.  Meditate?  Nah-uh.  Wrap?  Not a chance.

Why did I put my lymphedema though this abuse?  My chosen profession is politics, which means that every September and October is a test of endurance.  The last two months before election day are a sprint with much at stake.  This year, the future of the county in which I live (as well as my own immediate financial well being) hung in the balance.

Judy Garland, Jack Haley, Ray BolgerFilm SetWizard Of Oz, The (1939)0032138

Everybody needs help getting back on the Yellow Brick Road. After times of stress, try to surround yourself with people who will help you heal.

Thankfully, this time we came out on top.  My boss handily won re-election, and I still have a job. My lymphedema, on the other hand, came in dead last.  My body had been so neglected that my lymphatic fluid felt more like lymphatic solid.  I was so stiff, I made the Tin Man seem like Stretch Armstrong.

Subsequently, my immune system surrendered to a cold that had been lying in wait for weeks.  Getting my body moving  and whole again would take more than an oil can.

Continue reading