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.

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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

Guest Column: Primary Lymphedema since I was six years old

20 Feb
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.

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.

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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.

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Sex and Lymphedema

9 Oct

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.

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