Tag Archives: lymph nodes

Sexy (and Safe) Support for Lymphedema

6 Sep

Sexy is usually not a word that comes to mind when you think lymphedema. Compression garments. Pneumatic pumps. Bandages. Accessories like these are not likely to be spotted in Vogue’s Fall Fashion Preview.

But last weekend, I met a woman who can make any lymphie feel attractive – and improve their lymphatic flow – by starting with one of the first things they put on in the morning – a bra.

When you have lymphedema or are at risk for developing lymphedema, it is suggested that you avoid clothing or jewelry that restrains lymphatic flow. One of the biggest flow offenders? Underwire bras. The wires, intended to support and shape the breast, can dig into lymphatic vessels, encouraging the buildup of lymphatic fluid in a limb.

So what’s a fashion-forward lymphie to do?

One option might be to let the “girls” go free. At home on the weekends? Absolutely. At the office presenting in front of your staff? Not recommended.

Another option is a well-fitted, wireless bra. Finding a bra – any bra- that fits comfortably is a feat. Finding one without a wire that fits well and looks sexy? That’s gold medal worthy.

Meet the Olympic champion of wireless bra fitting – Ilissa Manes of Peach.


Ilissa Manes, Peach Personal Stylist, showing me Peach’s bralette line.

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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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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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