Tag Archives: secondary lymphedema

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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Two thumbs up for Wesley, Two Thumbs Down for Firecracker Films

20 Aug

It was tough to watch Firecracker Films’ documentary, ‘The Man With the 132-Pound Scrotum’, which aired in the U.S. on TLC last night, but not because of the graphic content and nudity.  Rather, my agony was the result of waiting for a moment that never came: an accurate explanation to viewers of what lymphedema is and how it afflicts millions of people worldwide.  On the contrary, the producers depicted lymphedema as simply a “mass” that can be “removed” and be done with, as opposed to the incurable, progressive condition that it really is.

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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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