Hi - I'm new to the website

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Hi - I'm new to the website

Postby sunshinenmyheart206 » Fri Nov 10, 2006 1:56 pm

First, what a great website y'all have! I was first diagnosed with leg lymphedema bilaterally in the summer of 2004. Before that, I thought I just had really fat legs, and no amount of dieting helped at all. A bout with cellulitus landed me in the hospital, where my right leg ballooned so impossibly large - never thought a leg could get so big. Fortunately, I was able to get into therapy shortly after discharge, and by the grace of God, had an excellant therapist, cause both of my legs were in bad shape then. Since that time, I've moved twice, and where I am at now, the closest clinic for lymphedema is about a 4 hour drive away. I'm fortunate to have a doctor who knows what lymphedema is and is willing to be flexible with me with the antibiotics. I take a minimum dosage daily, and increase it immediately for any scratch, etc. Again, fortunately, I've not had any re-occurance of the cellulitus.

Since finding this site, I've learned more about lymphedema than I've ever known. One thing really hit home is the fact that while i've been able to get away with just wrapping my lower legs, I do need to be more mindful of my thighs, too. During therapy, after about a month, the therapist did wrap my upper legs, but before discharge, she'd said if I could keep my lower legs wrapped mainly, that was the most important thing. Well, I've been attempting to wrap my upper legs lately, without the best of results. The probelm? Get them wrapped, and within a very short time, they loosen and fall down. How the heck do you keep them up? I've been wrapping them in a figure 8, as I've found that works best with my lower legs, but the wraps just don't stay up or in place long on my thighs.

At the initial time of discharge from the therapist, I had lower leg assists to use in place of the wraps, but since that time, I've lost a large amount of weight, and while I still use them from time to time, the wraps are my main form for containment. I'm on a limited income and little means to purchase the stockings. Even replacing the wraps can make things kind of tight at times, but I will do all I can to prevent having my legs get worse like they were before.

Again, thank you for such a wonderful site!

Marian
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Postby silkie » Fri Nov 10, 2006 3:10 pm

Hi Marian

Big Welcome. I have similar history to you

And same problem I think on it as a posative If they are coming down there is some reduction (thats my story and i'm sticking to it lol)

Lisa aka Gottahavesun has a great way of doing a figure of 8 round
her groin and hip to keep them up

She will probably post it here very soon

I agree with you this is an amazing forum

We are family from every part of the world lymphfamily

Glad you found us Marian look forward to hearing lots from you

Hugssssssssssssss

Silkie xxxxxx
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Postby sunshinenmyheart206 » Sat Nov 18, 2006 5:44 pm

Thanks Silkie, for your reply and welcome. I have continued to read more and more of the posts and articles, and continue to be amazed at how much so many of us have in common.

I appreciate your optomistic attitude towards this condition we have. it would be so easy to let it get the better of us, but I want to live life to its fullest - even if its with lymphedema.

And that brings me back to my original question - anyone have suggestions of how to keep the leg wraps up? Yes, I'm thrilled they are doing their work but it remains so frustrating - some days I just don't have the energy to know that shortly after they're on, they will be coming down, meaning I'll have to mess with the wraps again.

Again, ty for you kind words of encouragement!

Hugs,
Marian
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Postby silkie » Sat Nov 18, 2006 7:07 pm

Hi Marian

I wear mine overnight and supports during the day

that helps the problem

some also put a tubular (we call it yellow stripe) over the top of the wraps

the herringbone fig of eight seems to stay up better too

Sorry i cant be of more help

Silksxxxxxxxxxxxxxxx
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Postby sunshinenmyheart206 » Sun Nov 19, 2006 1:37 pm

Thanks for your reply Silkie. What exactly is a tubular or yellow stripe? I've not heard of either. And I do agree - wrapping in a figure 8 does help them stay up better - even if they do fall down so fast...lol.

Hugs,
Marian
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Postby silkie » Sun Nov 19, 2006 3:04 pm

hI Again

its a bandage very light thin soft on a roll.
you cut to the length you require then open it up and pull it on your leg like a stocking with no feet a tube of bandage

Thats all it is

i find it helps me


Hugsssssssss

Silksxxxxxxxxxx
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adhesive

Postby mick sasse » Mon Jan 15, 2007 9:22 am

Hi Marian, I am lucky that I get my stockings free from the NHS (UK), but had problems even keeping them up until My new ones arrived which are much better. However, when I had the problem I used an adhesive for stockings by "Sigvaris". I doubt it, but you never know that may work with the bandages as well. Good luck
Mick
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Postby silkie » Mon Jan 15, 2007 11:11 am

Hi Marion

I call it skin glue that Mick is talking about it is very good but i unfortunately got a skin reaction to it so do a test area frist on non lymph limb


Huggggggggggggg

Silksxxxxxxx
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Postby gottahavesun » Tue Jan 16, 2007 3:23 pm

Marian,
Wrapping the thighs is perhaps the trickiest places I wrap(I have all over LE) but I have found a technique that works for me. I've been up in NY for a long weekend, so just now getting caught up on reading the boards.

I do the figure 8 at the knee, even with the first bandages going up my thigh. When I work on my upper thign then I use my hips as my anchor. What I do is wrap my thighs around a couple of times and then bring the bandage up and circle my hips before bringing back down to finishing up wrapping my thigh. So lower thigh-knee as my anchor, upper thigh, hips are my anchor. After I'm done wrapping, I will put on a pair of exercise shorts or you could use a legged girdle-this holds the bandaging in place. I think just because most of our thighs are so big and we get up and down it causes them to slip, so we all have problems with the bandages slipping. Let me know if you have anymore questions regarding wrapping and I'll be happy to answer them.
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Postby coyote » Sat Apr 07, 2007 10:59 pm

thanks for posting this, Lisa, it gives me a few ideas!

Julie
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