Original post from: Lymphedema People October 25. 2006 by Silkie
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
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.
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???
You get help a therapist you have a name for this thing doctors told you was your imagination.
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.
But you smile and say I'm fine when what you to do is weep.
You battle to get through each day.
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.
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
HEY MATE YOU COME AND BE ME FOR A DAY THEN TELL ME ITS 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.
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.
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.
* Editor's note: The first and last two pictures are examples of what lymphedema can become when it is untreated.