THE QUICK FIX ? OR A CRONIC CONDITION MADE WORSE?

FLU SHOTS, trusting doctors, stomach swelling, compression garment fitting, perception of lymphedema, anger, shoulders, shoulder blades, pantyhose, benadryl, TB test, shaking leg

Moderators: jenjay, Cassie, patoco, Birdwatcher, Senior Moderators

THE QUICK FIX ? OR A CRONIC CONDITION MADE WORSE?

Postby silkie » Wed Dec 27, 2006 2:49 am

Hi Everyone,

I have been reading for some time now of
surgery as a means to correcting lymph
or machines that can suck out the crap and make my legs better
of machines that can clear my fiberous tissue

of my government adovcating Gastiric bypasses for the youth of my country that are overweight (i wonder how many are being misdiagnosed as overweight that have lymph and lipedema)

All these amazing wonderful invasive methods to deal with lymphedema
wow we have had a breakthru? from a only a few years ago when lymphedema was only something you got with breast cancer some doctors still think that ( i was in ER not long before christmas with doctors an nurses checking me out because they didnt know you could be born with lymph)
from when doctors (only last year) were saying thin people don't get lymphedema ( from a lymph doctor in kent UK)

Did i miss something here?

i was diagnosed in 2002 thats 5 years ago after 40 years of not one doctor recognising in your face history that yells out lymph and lipedema

I have members in my group heck ! we have members in all our groups struggling to be diagnosed and get the simplest of daily routine help

We evan have members that have to take in information to give to doctors to know what we are talking about

And yet there are surgical procedures for something we havent got???
there are machines that have been developed and reserched for years
for something we havent got?

and we can have big chunks of out bodies taken away and the surgeons avoid damaging more of our lymph system?

I feel like rip van winkle i have woken up after a long sleep and this has all happened?????????????????

u can even go to a cosmetic surgeon now and get liposuction the chances that he knows about lymph and lip well if your lucky you might get one
or if your extreemly vigilant and check everything out

WE HAVE A CRONIC DEBILITATING CONDITION AND SUDDENLY I FEEL LIKE A COSMETIC EXPERIMENT

you can by creams and herbs and chinese potions all for lymphedema
if they are so wonderful and used for thousands of years why do people doctors still not know of lymphedema and lipedema?
why if there so amazing have we not heard of the fantastic cures before?

and as for gastric bypasses well why have we got members with lymphedema due to this surgery
why does the this procedure not work for so very many people

WE HAVE ALL GOT BRAINS WE HAVE ALL GO THE ABILITY TO QUESTION
AND THINK BEFORE ANY INVASIVE SURGERY PLEASE PLEASE THINK VERY LONG AND HARD YOU DO YOUR RESEARCH RESERCH THE DOCTORS THE INFORMATION THE SIDE EFFECTS HAVE IT ALL TO HAND
THEN DECIDE DONT TAKE ALL THIS HYPE AS GOSPEL

NOTHING IN THIS WORLD IS WITHOUT CONSIQUENCES CHECK OUT WHAT THEY COULD MEAN TO YOUR BODY

hUGSSSSSSSS
SILKSXXXXXXX
User avatar
silkie
 
Posts: 383
Joined: Fri Jun 09, 2006 4:43 pm
Location: England

So Called cures.

Postby Cindy » Thu Dec 28, 2006 6:16 pm

I have had lymp in both legs for at least 15 years. I have been told that it was because I was fat. And all I have to do is loose weight and all will be well. :x I keep trying to find a Doc. who really cares to find out about lymp. They get really affended if I question them. Sometimes I just give up. I am suprised that Doctors tell you you can't have lymph. because your not fat! I wish someone really cared to study our problem and have some sure answers. I am so glad you are here and share the things you all know. Thank You all.
Cindy
 
Posts: 41
Joined: Mon Aug 21, 2006 12:16 pm
Location: Wa. State

Postby silkie » Fri Dec 29, 2006 4:54 am

Hi Cindy

So many of us unfortunately have had similar experiences
this is what concerns me if so many doctors can get this wrong

We have such research into Lymphedema that we can have all these
invasive surgeries yet no one is bothering to teach the doctors that lymphedema is a cronic dibilitating condition and how to diagnose it???


Silksxxxxxxxxxxxx
User avatar
silkie
 
Posts: 383
Joined: Fri Jun 09, 2006 4:43 pm
Location: England

Postby Cindy » Fri Dec 29, 2006 7:44 pm

Hi again. I wonder how many of the people in our state are overweight like me and how many are small like you??? They insist {the docs} that this my fualt because I am fat. And all the surgerys and other conditions I suffer from have nothing to do with it. If they are right then how come there are others like you????????? How many normal size people suffer from this problem? I Would like to know.
Cindy
 
Posts: 41
Joined: Mon Aug 21, 2006 12:16 pm
Location: Wa. State

Postby silkie » Fri Dec 29, 2006 10:01 pm

Hiya Cindy

Oh hun i am sorry for giving that impression i am not small
im a larger than life mama

my legs and butt are bigger than my upper body about 3 sizes

as i have lipedema as well as lymph

but fron 10 years old i have been tiny waist huge hips and big legs

tree trunk legs
my mum would have to change waistbands on all my skirts
i could not wear dresses the top was always enormous compaied with the hips

three children and 40 years on i also have my lymph handles and yes weight problems to the weight finally i am losing very very slowly
but with weight lose my now useless skin hangs more and more
im not sure what is worse big tummy or hanging tummy

I do believe there are many many people out there that are diagnosed over weight that have lymph and lip
Weight does not help our conditionit can make for more problems
but i feel many of us would not have the wieght problems if ealry on in life we had been diagnosed with these condtions and learned early on how to help it the best we could

Hugsssssssssss
Silksxxxxxxxxxx
User avatar
silkie
 
Posts: 383
Joined: Fri Jun 09, 2006 4:43 pm
Location: England

Big

Postby Cindy » Sat Dec 30, 2006 6:55 pm

:lol: Well at least I am not alone. I laugh with my friend(on the outside) because you can see me conning and going. Big butt and stomach thighs legs(sure) and upper arms. Strange thing my legs stomach butt and thighs getting bigger. I gaining weight but my hands are smaller. Can't wear my wedding rings they fall off. I thankfully have friends who make clothes for me so I am not forsed to go naked. But no shoes socks nylons. Can't even wear womens slippers must buy mens. Have to be very carefull to get deep and wide enough. And not to high because my ankles roll over so much. Oh by the way I am the one who wrote about my dog scraching my leg open so bad. That was 2 weeks ago today. I am healing OK. Is it wise to us Ebson salt? I have not this time. But when I didn't know what I had I did because I thought the open drainage was infection. It seemed to help. Now i wonder. Hope all is well with you. I read what you say and you inspire me. You make me laugh rather than dip into self pity. Thanks
Cindy
 
Posts: 41
Joined: Mon Aug 21, 2006 12:16 pm
Location: Wa. State

Postby joanne johnson » Sun Dec 31, 2006 1:43 am

Hi Cindy,
I'm glad that you enjoy reading some of the stuff we all write about and share with each other. It's important to be able to laugh. I run around the house in men's slippers all the time. They make my feet look so huge, sometimes I don't know if I should laugh or cry. I prefer to laugh :D Hang in there Cindy, you definately are not alone!
joanne johnson
 
Posts: 165
Joined: Sat Jun 10, 2006 12:23 am

Laughing

Postby Cindy » Tue Jan 02, 2007 3:01 am

I want you to know I don't laugh all the time It is not funny . But I most often laugh with tears going down my face. I like how you face life with lymph with courage. It is so important to me to learn the best ways I can help myself. I learned about a good bandage on here. It is a kotex. I laughed :lol: I tried it it works really good. But I wear long skirts. I live in fear of my skirts flying up and :oops: :oops: . well you know.
Cindy
 
Posts: 41
Joined: Mon Aug 21, 2006 12:16 pm
Location: Wa. State

Thin with lymph

Postby suzeeq » Tue Jan 02, 2007 3:20 pm

Hi Cindy, I just wanted to respond about thin people having lymph but the doctors saying just overweight people having LE. I am 5'7" and my normal weight before I was diagnosed was around 130#. I gave you my before weight because now I'm around 140#, mostly because of the swelling in my leg. At one point in my life, several years ago, I actually got down to 117#. So I don't mean to be vain, but this extra weight and the appearance of my leg is very depressing for me. I used to wear alot of skirts and had nice legs, but now can't. But I have accepted this condition and am very compliant with all the aspects of treatment. I am not clinically depressed, just sad that I used to look good and now I don't. I'm 52 and still have alot of good years ahead. The rest of my health is good, I'm still working and am blessed that this condition was diagnosed early and I started treatment immediately. It is so sad that so many people are not being diagnosed properly and suffer for years. Take care!
suzeeq
 
Posts: 81
Joined: Mon Jun 19, 2006 7:05 pm

Postby joanne johnson » Tue Jan 02, 2007 3:53 pm

It definately is sad to remember the way we looked before lymph. But it is good not to actually get depressed over it.

My legs and feet are huge. If I need to look dressy I always wear long skirts. I usually wear slacks which I have to have made for me as I cannot buy off the rack as they are not wide enough. I have to buy expensive shoes which are extra wide. Styles I would never wear but I have to buy what fits, not what I like. These are adjustments we have to make and to make the best of our situation. I have a good attitude and always feel things could be worse.
joanne johnson
 
Posts: 165
Joined: Sat Jun 10, 2006 12:23 am


Return to Lymphedema Family Talk

Who is online

Users browsing this forum: No registered users and 3 guests