Lymphatic disease – Page 2 – Lymphedema Diary

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 “Compression Stocking Tip #2: Where to Buy Compression Stockings” →

Tips

Mani/Pedi-mania: lymphedema nail care

September 8, 2014March 22, 2015 Britta

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 “Mani/Pedi-mania: lymphedema nail care” →

Tips

Riding in comfort: Finding the right ‘Lymphedemamobile’

June 11, 2014March 22, 2015 Britta

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.

Car 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 “Riding in comfort: Finding the right ‘Lymphedemamobile’” →

Personal Stories

Moms and Lymphedema

May 11, 2014March 22, 2015 Britta

The 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 “Moms and Lymphedema” →

News

Bringing lymphedema ‘into the light’

February 26, 2014March 22, 2015 Britta

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.

*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 “Bringing lymphedema ‘into the light’” →

Motivational

Guest Column: Primary Lymphedema since I was six years old

February 20, 2014February 20, 2014 Britta

One Strong (and photogenic) Family. Kimber and Scott Strong with their three children. — One Strong Family. Kimber and Scott Strong with their three children.

Meet Kimber Strong. Kimber and I have much in common. She is in her late thirties, has a home in Maryland not far from where I was raised, and lives with primary-onset lymphedema.

But, while I was trying on prom dresses and running lines for the school plays (unaware of the ticking time bomb in my lymphatic system), Kimber was wearing hospital gowns and enduring a steady diet of antibiotics and bad medical advice.

Kimber Strong has had lymphedema since she was six years old, barely out of kindergarten.

She is indeed “strong.” Despite her rough road, she remains optimistic and has enthusiastically embraced a recent, cutting edge medical procedure. The procedure involves transplanting lymph nodes from one area of the body to compensate for malfunctioning nodes in another. Kimber has since had this procedure, called lymph node transfer, and reports progress in her condition. Ironically, Kimber was made aware of this procedure, not through the medical community, but through a blog written by a fellow “lymphie.”

Kimber’s story reaffirms for me that maintaining our LE network is critical. We are our own best hope.

Kimber’s Story in her own words.

Kimber’s thoughts the night before her lymph node transfer surgery.

Kimber five weeks post-surgery.

Motivational, Tips

Go with the Flow: Tips to Manage Lymphedema at Work

January 8, 2014January 8, 2014 Britta

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.

Continue reading “Go with the Flow: Tips to Manage Lymphedema at Work” →

News

Give to a Cause You Know

December 30, 2013January 8, 2014 Britta

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 “Give to a Cause You Know” →

Motivational, Personal Stories

There’s no place like home

November 19, 2013January 8, 2014 Britta

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 “There’s no place like home” →

Motivational, Personal Stories, Tips

Sex and Lymphedema

October 9, 2013February 3, 2018 Britta

The first time my husband Luke and I became intimate, he didn’t know I had lymphedema. Since the swelling in my legs is mild, it’s not something he would have easily noticed (especially since he was quite distracted!).

Funny, it wasn’t the lymphedema as much as the compression stockings that I wasn’t ready to share with him. Laying naked in bed baring your body’s imperfections, even if it is a foot or arm that is fatter than the other, is beautiful – that’s what intimacy is all about. But for someone with lymphedema, getting to that state can feel less than sexy. There was no Dance of the Seven Veils for Luke.

In the movies, when they get hot and heavy, they don’t do a closeup to reveal the ingenue’s compression garments and watch while she takes a time-out to strenuously remove them. And that’s not a scene I wanted to play out either. At some point when we were getting close, I excused myself to the bathroom, yanked off my stockings, put my clothes back on and rejoined Luke.

Continue reading “Sex and Lymphedema” →