Tag Archives: lymph

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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Want to feel like you don’t have lymphedema?

12 Sep
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.

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

27 Aug

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.

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Turn your world upside down, everyday

22 Aug
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.

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‘The Man with the 132-Pound Scrotum’: No such thing as bad publicity?

15 Aug
TLC to air 'The Man with the 132-Pound Scrotum" Monday, August 19 at 9 p.m.

TLC to air ‘The Man with the 132-Pound Scrotum” Monday, August 19 at 9 p.m.

This Monday, August 19 at 9 p.m. TLC will air an hour-long program called ‘The Man with the 132-Pound Scrotum.’  The show follows Wesley Warren, Jr.,  a 49-year old Las Vegas man, who suffers from scrotal lymphedema.

The TLC teaser fails to explain how Mr. Warren contracted lymphedema of the scrotum, but according to Dr. Reid (inventor of the ReidSleeve), the condition can be brought on by heart failure, liver failure, venous obstruction, lymphatic obstruction, or prior surgery or trauma.

As someone who has struggled to live in dignity with primary lymphedema for 15 years, it makes me cringe to think of all the people who might be sharing a laugh on Facebook at the expense of this poor man or gawking at his agony.  And it makes me angry that lymphedema and lymphatic disease – a condition that affects millions of people worldwide – only gets attention when it garners circus-freak headlines.

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I’m so progressive (medically, that is)

12 Aug

When the medical professionals say that lymphedema is a progressive disease, they aren’t kidding.  In the 15 years that I’ve had the condition, the development of my lymphedema can be tracked by the compression garments I have worn to manage it.

"The Grandma", as I call it, in Juzo's advertisement

“The Grandma” compression stocking, as I call it, as pictured in Juzo brand’s advertisement.

Compression garments are stockings or sleeves or some other type of clothing that provide gradual compression that pushes the lymphatic fluid towards the heart (meaning the garment is tightest at the bottom of the limb, i.e. the ankle or wrist,and loosest at the top of the limb).

Some lymphedema patients can’t fit into compression stockings due to the severity of their swelling.  I don’t know how they can function or bear the pain.  For myself, I cannot remain in a standing position for more than a few minutes without my stockings on before I start feeling discomfort.  Within a matter of hours swelling would follow and my legs would be back to day one of my onset.  Without stockings, I could not function day-to-day.  I could not go to work, go for a walk, or do any of the necessary and normal activities of life.  These stockings do the work that my lymphatic system is incapable of doing.

So over the past 15 years, I’ve gone from a school-girl knee-high stocking, to a sexy thigh-high length, to a full pantyhose style that extends past my belly button that I have dubbed “The Grandma.”

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Happy Anniversary to My Lymphedema

9 Aug

My brother, mother and I set out on the sizzling summer morning of August 9, 1998 for a jog across the Brooklyn Bridge.  Mom had always wanted to do that.  She was visiting from Maryland that weekend.  I remember the date, because we were anxiously awaiting the arrival of my nephew who came into the world later that afternoon.

Despite the warm weather, we stopped in at our local gym for a quick sauna afterwards.  Then it was back home for a hot shower before heading into the city to show Mom some of the sites.

We capped off our sun-soaked march around Manhattan by cooling off in a Greenwich Village movie theater to take in Saving Private Ryan.  By the end of the movie my left knee was aching badly.  When the lights came back on, I could see my leg was swollen from the knee down into a column shape – couldn’t make out my calf, couldn’t see my ankle.

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