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

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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

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.

Lowering myself onto the corner of an ottoman in our living room, I sobbed.  As a 23-year old woman, I could not yet comprehend the permanence of my new medical reality.  All I knew was that, after months of questions, my dad had given me an answer. Not the doctors. Not the hospitals. My dad.

Thank God for Dads.  They don’t sugarcoat.  Dads generally give it to you straight.  While mothers sometimes try to bolster your ego and shield you from life’s ills, fathers feed you heavy doses of reality before lovingly turning you out into the world.

Dad and me after our dance at my wedding in 2005.

Dad and me after our dance at my wedding in 2005.

I realize now that those early life lessons from my dad prepared me to cope with lymphedema in practical and meaningful ways.

A former Washington, D.C. policeman turned lawyer, my dad can smell a phony from a mile away.  And he taught me never to take nonsense from anyone.  This has come in handy during my many visits with doctors who didn’t know or understand about lymphedema.

An enthusiastic card player, my dad taught me you can’t always choose the hand you’ve been dealt, but you can choose how you play the hand.  I try to remember that as I make daily choices living with lymphedema in dignity.

My dad has always been a people person.  He encouraged me to meet as many people as possible and (literally) taught me the meaning of the word networking.  In fact, the information that lead to my diagnosis  came from a contact he made at John Hopkins Hospital in Baltimore.

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

Moms and Lymphedema

11 May

MomThe greatest wish of every mom is for their child to grow up healthy. When my older siblings and me were born, my dad counted  our fingers and toes, and my parents breathed a sigh of relief.

My Mom enjoyed a blessed 23 years before “her baby” came down with lymphedema. The diagnosis was probably as hard on my mother as it was on me. I know that she would take my pain and frustration on herself, if she could. 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