Tag: Primary Lymphedema

News

Happy Lymphedema Awareness Day

Britta

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 “Happy Lymphedema Awareness Day” →

News

Bringing lymphedema ‘into the light’

Britta

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 “Bringing lymphedema ‘into the light’” →

Motivational

Guest Column: Primary Lymphedema since I was six years old

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

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.

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

News

Give to a Cause You Know

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

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

Britta

Randy GlasbergenThe 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” →

Motivational, Tips

Want to feel like you don’t have lymphedema?

Britta
My oasis.
My oasis. It’s a salt water pool located five minutes from my home – close enough that I can make it without compression stockings on the drive to and from.

From the time my alarm clock goes off in the morning to the moment I shut my eyes at night, I am constantly reminded that I have lymphedema in my legs. When my bare feet touch the plush rug on my bedroom floor and I sleepily stagger to the bathroom to brush my teeth, I savor every step.  I think to myself, “God, this feels good.”  Spreading my toes a little wider as I stride back across the hard wood floor in the hallway, I try to push out of my mind the thought that within minutes I will once again be encased from my toes up to my waist in compression stockings.  My iron legs, as I call them.

Continue reading “Want to feel like you don’t have lymphedema?” →

News

Lymphatic Research Foundation: 15 years of hope, inspiration and progress

Britta

On Sunday, September 8th at 11 a.m. the Lymphatic Research Foundation (LRF) will host their 2013 Walk for Lymphedema and Lymphatic Diseases.  It will be at Eisenhower Park in East Meadow, NY.  Lymphedema Diary is  one of the sponsors of this worthy event.

Melanie Chaite (right) and me at the 2012 LRF Walk.
Melanie Chaite (right) and me at the 2012 LRF Walk.

LRF was founded the same year that I came down with lymphedema, so I feel a certain kinship with this organization.  It was founded by Wendy Chaite, whose daughter was born with systemic lymphatic disease and lymphedema.  Frustrated by the lack of available medical and scientific answers – to which readers of this blog can surely relate – Wendy quit her successful law practice and founded LRF to promote research of treatments and cures.  Wendy’s daughter, Melanie, is going into her junior year at New York University and was the keynote speaker at last year’s walk.  You can watch a video of her speech here.  It is a must watch and only about 5 minutes.

Continue reading “Lymphatic Research Foundation: 15 years of hope, inspiration and progress” →

Tips

Turn your world upside down, everyday

Britta
HoMedics Anti-Gravity Massage Recliner with Heat
HoMedics Tony Little DeStress for $246 through SaleStores.com

In the summer of 2003, five years after the onset of my lymphedema, my parents gave me a present that has made my life easier every day since — an inversion recliner.  If I were to recommend one product to my fellow lymphedema sufferers, it would be this one.

You may have to save up for it though.  I’ve seen prices range from $250 to $2,400*, depending on how many bells and whistles you are willing to pay for such as vibrating massage, heat settings and self-inflating lumbar support.  But the only feature that is important for our purposes is that the chair gets your legs above your heart.  That position allows gravity to drain the lymphatic fluid back towards your heart.

After a shower, a long day at work, or just relaxing in front of the television, this chair gives my legs the lift they need without the help of tight compression stockings or bulky bandages.  This chair is an island of comfort in my home and I visit it every day.

Continue reading “Turn your world upside down, everyday” →