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Postby silkie » Tue Oct 24, 2006 11:19 pm

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
that 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 get to the stage where
you are either thought a manic depressive, or a hypercondriac.

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

Where do you go for help Doctors dont believe you
your faith in doctors is now zero you will get to the stage where you wont even go for the routine checks

You get to the desperate stage 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 wern'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
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 wash your hair even

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 lymphedem 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 dont want sympathy, we want to live our lives
without ignornace 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??????

Lympohedema 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
its the ignorance and the indifference thats the hard thing to deal with

lymph is for life . You learn ways of addapting and living it as fully as you can.

its the lack of understanding of the needs medically of lymphers that
breaks you heart

Silks xxxxxxxxxxxxxxxxxxxxx
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Postby patoco » Wed Oct 25, 2006 12:14 am

Hi Ya Silkie :D

Not sure why you couldn't post this in Lymphedema Friends....but..I went ahead and posted it for you.

Well said :!: :!:

When other members here and Friends respond, I will be sure the author of the Q&A article gets their responses.

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Postby silkie » Wed Oct 25, 2006 2:27 am

Hi Pat


I look forward to seeing your reply

I hope our family in both forums respond

I am lucky I had a one in a million practioner in Denise and my new

one is looking of the same calibre as Denise.

And finally i have a GP (40years wait) that wants to learn more and more of lymphedema

but the lymph worldeness is a demoralising place still for so many
thank goodness for our family that have come together on our forums


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Postby annelicious » Wed Jun 02, 2010 3:38 pm

Hi i am new here. I can relate to what you said. I go through that every single day. It is a battle, trying to deal with all the changes that lymphedema causes.
I graduated with my first degree and worked as a Chemist , just to realise my legs could not carry me anymore so i had to change careers. Now i am back at varsity doing Computer Science which i dont have much passion about. It has such a huge effect on my life . Not to mention the heart break that it caused me and yes it was all because of lymphedema. Even worse no one around me understands, they have never heard about lymphedema. It is depressing. It is a feeling i try to fight everyday.I am now 28 . I sometimes feel like , it has taken away the life from me , it is a feeling i fight all the time, hope to get it right someday.
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Postby patoco » Thu Jun 03, 2010 8:48 am

Hey again Anne

Left you a long note on your first post.

If you are not much motivated by computer science, what does motivate you in the career sense. Wow, if you had a degree in chemistry you must be pretty smart. Think about what other career would motivate you and go for that one. Don't try computer science because someone told you it would be a good idea. You have to choose based on what you want and what helps bring purpose to you.

Big hug (again) :)

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