Posted by: patoconnor | October 29, 2008

Lymphedema Changes Your Life

 “Lymphedema Changes Your Life”

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.

Living with 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 is we as patients are telling lies to hide a deep dark secret overeating lazyitous problem.

You know something is wrong how many times do you go back to the doctors 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 dont believe you.

Your faith in doctors is now zero you will get to the point where you wont even go for the routine checks.

You get to the desperate stage and even think about snake doctor cures.
Anything to help.              Theres no one there 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                
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, your tired , sleep is something you seem to long for but dont get 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 your not to 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 names 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.

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 thats the hard thing to deal with.

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

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

Hugggggggggggggggg

Silks xxxxxxxxxxxxxxxxxxxxx

          

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


Responses

  1. Thank you. My edema has been getting worse and I was wondering if it was causing my fatigue. What you wrote helps. I’ve never been treated for it but I hope to get help soon
    Thank you
    Joann


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