Posted by: Budger | October 7, 2010

Are those Leg Warmers?

Living with Lymphedema in Texas is not for sissies.   What I wouldn’t give to be able to go bare-legged and in flip-flops.  Shorts are out of the question.  I have Primary Lymphedema, predominantly in my legs, but a little in my left arm.  Most people know Lymphedema as the Secondary type that occurs after surgery or intensive radiation – most commonly in Breast Cancer patients.  The Primary type of Lymphedema is hereditary, and symptoms generally occur at a young age. 

So what is Lymphedema?  Lymphedema is a localized edema caused by the retention of fluid due to a compromised lymphatic system.  Primary lymphedema is a result of problems with development of the lymph vessels.  Left untreated it can lead to fibrosis of the tissue and breakdowns and infections.  The typical look of Lymphedema of the leg is a leg that takes a columnar shape.  No definition between the ankle and the calf.  I believe this is where the term “cankles” came from.

I have always had large legs.  And I noticed early on that my legs always felt heavy and tired.  I started wearing over the counter support hose when I was 20 because my legs would feel better.  But my doctors just told me that I needed to lose weight.  It was always attributed to a weight issue.  But 4 years ago, I had lost 65 pounds, and I noticed two things.  One – although every other part of my body was smaller, my legs were not, and two – my left leg was noticeably larger than my right one.  I went to my doctor, and he took one look and said, “I think you have Lymphedema.”  According to my doctor, Lymphedema is more common than people know, but because of it being attributed to a weight issue, it is often not diagnosed.  There is no cure, and the most common treatment is medical compression stockings.

I wear a special kind of hose when I ride my bike.  I wanted something cooler than regular hose, but then I discovered that it had the benefit of being a little stronger.  The benefits – I don’t have to worry about sunscreen on my legs.  The cons – if I’m not careful they can snag on my chain ring.  The most common question I receive…are those Leg Warmers?  When it’s cold, riders look at them in envy.  When it’s hot, riders look at me like I’m crazy.  Either way, my hose, over the years, have brought a lot of stares.  But they are a part of my life – like my Gluten Free diet and my pacemaker.  My riding hose used to be silver, and so every year before the big Bike MS ride my friends would sign my hose.  But the manufacturer has reformulated them, and so they are a little more natural looking this year.  And, unfortunately, not as cool as they were before, and they won’t look as cool when signed. 

The other benefit – when there are 2,500 other riders on the road, my team can always spot me.  And there is a volunteer Police Officer that helped me my first year, and remembers me every year. 

If you would like more information about Lymphedema, please visit the National Lymphedema Network.  And if you’re out on the back roads between San Antonio and New Braunfels this weekend, look for me and honk.  I RIDE FOR MO!

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Responses

  1. Can you tell me more about the hose you wear? Brand etc? I have lymphedema also and am curious about them. Thanks.

    • Hi Crystal – the hose in the picture are Juzo Silver. They used to look like what you see, but now they are a nude color with the silver weave. I like the older style better. I get all my hose online at http://www.ameswalker.com/. I think they have the best prices, and these hose aren’t cheap. But they hold up really well. Are you Primary or Secondary? Thanks for visiting. Rhonda

  2. Thanks for the information. I am primary, but where it was “manageable” when I was younger, it has really gotten worse in the last few years. I have been using the bandage wrapping method all this time – I tried a circaid “contraption” lol and I didn’t have much luck with that. The bandages work okay but they are so bulky and uncomfortable at times, I am always looking for something new that will work and be cooler and maybe easier to use. I completely understand people questioning what the heck you are wearing on your legs! Good job on your cycling – and have fun!!

    • Crystal – have you talked to your doctor about Farrow Wraps? http://www.farrowmedical.com/ My doctor suggested them to me last time I saw him, and I am seriously thinking of trying them for when my legs are worse. Also I wear a JoviPak http://www.jovipak.com/ at night. I cannot wrap my legs during the days as I cannot wear the bandages under my slacks for work.

  3. ohmygosh – the Farrow Wrap looks so awesome – lol (- oh how my fashion standards have sunk!) The jovipack looks interesting too. Thank you so much for those links! I am going to take these to my doctor and see if they will work for me – seriously – thank you so much!


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