How we face our daily challenges with lymphedema

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How we face our daily challenges with lymphedema

Postby patoco » Sat Jun 10, 2006 1:53 am

How we face our daily challenges with lymphedema

This is hard for me because so much of what I do and how I cope has become sort of an automatic routine. I have had to really think on what I do.

For me the biggest issues have become keeping the infections at bay, pain that is ungodly and exhaustion. A lot of things we should do with lymphedema are actually things that anyone should do to stay as healthy as we can.


There are only a few real rules I follow. Fortunately for me I have never had to watch things like cholesteral, food allergies, blood pressure issues etc. Usually, I'm referred to as "Mikey will eat it" (remember that commercial?

Because low albumin and protein levels can be a problem for those with lymphedema, I do eat a high protein diet. The concept of Atkins is nothing new to my dietary habits.

For protein I eat a lot of poultry, cheese, fish and pork.... not so much beef anymore.

I am on continous anatibiotic therapy. Each day I take (2) 875mg augmentin. This can play havoc on your stomach and digestive systems. The antibiotic kill no only the bad bacteria but the good. To replace this sometimes I will take acidophlous tablets and I eat yogurt. (Love that stuff). However, I do have to also take Prilosec every other day. Otherwise, the old indegestion is like a volcano.

I also am a firm believer in vitamins. The lymph system is the "waste removal system" for our bodies. So, included in my vitamin regimine are signifcant anti-oxidant vitamins and beccause of my immune system, I include vitamins that help that as well.

I have some bad "drinking" habits. We are told to avoid caffeine - but I have to have my coffee - and it is strong - use 16-18 tablespoons of coffee for a 12 cup pot.

But I do drink the necessary amount of liquids too. Love ice tea and juices. Even with lymphedema, you can become dehydrated and if that happens, it actually impairs lymphatic flow and hampers your body's ability to clean itself out.

One thing I decided to give up was a lot of eating out. My immune system is so severly impaired that I have become really cautious about restaurant food.


This is so critical for lymphedema. Every extra pound is extra body area that your lymphatics must deal with. Plus morbid obiesity can cause secondary lymphedema. I maintain a careful watch on that weight. This is important though for anyone - with or without lymphedema. Very pleased that I can still fit comfortably in a tuxedo I used to perform in some thirty years ago.

Skin care

I am very careful about caring for the skin on my lymphedema limbs. Every day after showering I am faithful about using a lotion which has zinc, aloe and vitamin e. If I don't, I face immediate cracking weeping, sores and potential infections.

If despite all this I do getting a leakage, I immediately treat it with diaper rash ointment that has zinc in its ingrediants. Also, I use a pressure wrap that includes rollwed sterile gauze and short stretch bandages. I never - ever - use any type of tape on my legs.


This is one area that pretty much should be followed by anyone. Keeping your home clean and bacteria free is essential in helping to avoid those infections.


I love double pleated pants. Not only is it simply more comfortable, butit helps make the lymphedema not so very obvious.

In buying shoes, I don't worry about buying expensive special made stuff. I buy regular shoes - centered on comfort and support. Because of the edema in my feet, I buy shoes that are two sizes larger than my actual foot size - and as wide as I can get.

I don't wear sneakers/athletic shoes. These are famous for harboring and breeding foot infections and fungus. Also, I use a fungal powder in my shoes.


I have always been an active person, except more and more I am limited in what I do. But I still believe in trying at least to keep fit. Low impact, muscle stretching exercises are great. You can do them even while sitting at your desk at work. Lymph fluid flows through your body via muscle action. So while I can not a lot of physical activity - I can still do these type of exercises.


I am an avid gardner.... always got that "yard of the month" designation. But even there I have had to adapt. I use knee protection when I am bent working on a flower bed. Always use gloves too - for planting seedlings these regular garden gloves just don't work. So there, I will wear surgical gloves. These protedt my hands from bacteria in the dirt and are skin fitting and enable me to handle those delicate seedlings.

When I water (usually early morning or evening - mosquito time), I make sure I have insect repellant on.

I no longer have the ability of digging up the ground to create new flower beds. So... when I want a new bed I pile about 6 inches of that bagged manure/compost on top of the groun and plant my flowers in it. Actually works great - within a seaon or two the dirt underneath this has soften and filled with earthworms to create a great flower bed.

In the Autumn, time for the leaves and pine needles to fall. I used to rake the yard because I love the exercise and love being out in that refreshing crisp Autumn air. Had to give it up, just can't be on my feet that long, so I have gone the lazy way of resorting to a leaf blower.

The house we moved from a couple years ago had a deck - and no matter how good the quality of your water proofing, it has to be done every couple years. I couldn't be on my feet again, long enough to do it - nor could I have my knee bent for that long. So, I actually just laid down on my side and would restain the entire deck lying down. Works great!!


For me this presents a different problem. It would be devastating for me to have a breakdown and have to walk any distance. Keep the basics on that car taken care of and am never without my cell phone.

Because of nerve damage due to my surgeries, my left leg is especially vunerable to the cold of winter. During those months, I make sure I have a big winter coat and muffler in the car - just in case.

At work

Keep a small foot stool under your desk. For me this helps not only the swelling but the pain. Again because I can't feel cuts, scratches and such on my left leg, I make sure there are no poking out screws, nails, splinters on desk etc.

During the past couple years, I have had serious systemic infections requiring IV antibiotics. No problem there either. I just take my equipment and supplies and hook myself up during lunch hours.


Because of a bad problem with fluid on the lungs, I have to sleep with a wedge under the front of the bed. This is so contrary to what helps lymphedema. Our legs should be equal to or higher than our hearts. But forced with the choice, I had to resort to this otherwise I experience terrible drowning like episodes as the fluid shifts while in bed.

In General

The hardest part for me is in adapting to ever changing health situations and accepting what I can and can no longer do. I use be able to have my hose spotless by 7:30 am Saturday - the yard immaculate by 10:30 and the car detailed by 12:30.

Now I can only do one of these on a weekend. My car is no longer detailed - don't like it being dirty - but I have had to learn to accept it.

The yard isn't as pristine as I would like it and the hose is not as immacualantly perfect as I like it. But I have learned either you let everything drive you nuts - or you accept it.

If I can think of more later, I'll post it.

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Postby silkie » Sun Jun 11, 2006 1:29 pm

Hi Pat,

My biggest challenge is frustration.

And it is usually the little things, like planting a primrose

or lifting the Chrsitmas Turkey in and out of the oven.

any joint for that matter.

not being able to take a long soak in a hot bath with bubbles anymore

but showers grrrrrrrr

The walks on my hills those are my biggest challenge not getting
frustrated and angry at my limitations. For anger and frustration lead to
me stressing and that in turn does have a big effect on my limbs

So i try as best i can when i am feeling frustrated to find something that i still feel has not changed in my life like being able to work here at the PC

or writing or my painting

I have my raised beds in the garden now so hopefully i can get my hand tools out and use the walls of the beds for support and a sit down when i need to take 5

i am getting there just a change of priorities

Will the world come to an end if i don't manage to make all the beds?

or buy made pastry instead of doing my own?

i sit to do my ironing

i have a typist seet in the kitchen to move along the cupboards

and i have a stick to walk adapting to achieving in a different way

It has been hard and it is never ending but if there is a way without

compromising my progress with my legs then i find it and feel great satisfaction



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Postby Lefty » Fri May 11, 2007 1:15 pm

I am new to this forum, recently diagnosed. At last, after 20 years of suffering, through a routine referral to a podiatrist, a concerned podiatrist felt my inner pain and embarrassment at my oversized left foot and leg. He referred me to a LE therapist and from that point a new door has opened for me. There is a wealth of information in this forum. I wish I could sit all day long and read everything at once. Thank you is such a small word but it is filled with mountains of appriciation. Thank you for your information.
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