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Lymphedema Changes Your Life

Original post from: Lymphedema People October 25. 2006 by Silkie

Dorothy Mooney

A Question was asked on Lymph Friends unfortunately I cannot respond to it there so I thought I would do it here.

A Lifetime of Lymphedema

It starts with a swelling.

You go to a doctor, and too many of us deal with indifference, ignorance and many times disbelief as if we as patients are telling lies to hide a deep dark secret of overeating and obviously a lazy person problem.

You know something is wrong. How many times do you go back to the doctors before it gets to the stage where you are either thought a manic depressive, or a hypochondriac.

By this time your thinking your paranoid. Your self esteem went out the door years ago

Where do you go for help when Doctors don't believe you. Your faith in doctors is now zero you will get to the point where you won't even go for the routine checks.

You get to the desperate stage and even think about snake doctor cures. Anything to help. There is no one there and your limbs are huge so painful, there is water leaking out of them and still they say your overweight what does it take to get help???

Finally there is a light on the horizon you find people that do listen, that do understand.

You get help a therapist you have a name for this thing doctors told you was your imagination.

PRIMARY LYMPHEDEMA you weren't crazy or paranoid its real and finally it is recognised

The MLD works, you take care of your limbs, you do everything right then you get hit by infection

cellulitis months of weeping edema open wounds, pain, more damage to your lymph system.

You walk more slowly, you are tired, sleep is something you seem to long for but don't get and the smallest task wears you out.

But you smile and say I'm fine when what you to do is weep.

But you battle on because how else do you manage?

You battle to get through each day.

You have to make sure you are not too tired to do your self care wrap your legs, eat, or wash your hair.

Lymphedema does change your life, you have to learn a new way of living to get the best out of your good days, to care for yourself when things are bad and above all to keep going when all you want to do is stop and say enough is enough.

It is a whole new way of living.

Your read what the expects advise trying to find out more and more how to help yourself.

Some person with more letters than the alphabet after their name tells you lymphedema is not painful


So many with so little help, and before they can get help they have to fight for insurance companies to cover their treatment or medicare to pay for supports.

More and more stress which is a big factor in causing lymphers problems and then someone tells you you can live a normal life after treatment.

What planet are they on??????

Lymphedema is a cronic dibilitating condition. We don't want sympathy, we want to live our lives without ignorance and insurance companies that make you jump through hoops backwards to get as much as coverage for a bandaid.

Is that so much to ask??????

Lymphoedema changes your life, you have to adapt and learn a new way to live, but much more than that you need the present powers that be to recognise this is a debilitating condition that over the years will get slowly worse.

We can handle the day to day living with lymph. But it is the ignorance and the indifference that is the hard thing to deal with.

Lymphedema is for life. You learn ways of adapting and living it as fully as you can.

It is the lack of understanding of the needs medically of lymphers that breaks you heart.


Silks xxxxxxxxxxxxxxxxxxxxx

* Editor's note: The first and last two pictures are examples of what lymphedema can become when it is untreated.

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lymphedema_changes_your_life.txt · Last modified: 2012/10/16 14:40 (external edit)