Another newbie!

Welcome to all our family and friends. Patients, families, caregivers, therapists, nurses, doctors, anyone with a concern for and interest in lymphedema is most welcome!!!

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Another newbie!

Postby h_festa » Sun Oct 08, 2006 2:45 pm

Wow, I'm really thrilled that there is an actual site with actual people who actually have lyphedema!
I'm 26 years old, I've had this since I was 21. Currently working only part-time and that keeps excessive swelling at bay. I'm not on a regimine at this point for it, but there hasn't been any problems (other than not having any ankles)
It will be nice to talk to some of you. I do have a question though. I have not had a history of any type of cancer. How did this happen to me? The doctors I have seen told me that it's because of my weight but I have a difficult time believing that. I have lost some weight, and my legs are still swollen.
To whomever created this group, thank you so much! I'm looking forward to talking to all of you. :)

Heather
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Postby patoco » Sun Oct 08, 2006 3:07 pm

Hi Heather :)

Super welcome to our family :!: :!:

You can get lymphedema from cancer, cancer treatments, removal of lymph nodes, infections and more but there are also several types that are considered "primary" lymphedema.

Milyroy's lymphedema - usually evident at birth

Lymphedema Praecox-Meige - generally starts around puberty

Lymphedema Tarda - starts at middle age or later.

With Praecox-Meige and Tarda there is no swelling at all...then boom...it starts seemingly out of no where.

As your looking through the info, please don't hesitate to post any questions...remember we're here for ya.

Pat
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Postby h_festa » Sun Oct 08, 2006 3:17 pm

I know that it's lyphedema praecox, I saw that on a evaluation sheet one of the doctors who treated me filled out. I was happy to know that what I had....had a name!
I come to listen a lot to my body. When I sense a cellulitis infection, it's normally too late and I go right to the hospital for IV antibiotics. Fortunately, I only made it there twice this year. In years previous, it was more than that. My last visit, it also showed that I had MRSA-which is a staff from what I understand.
There doesn't seem to be anyone that I know around my neck of the woods who specializes in the diagnoses/treatment of this. But, I keep looking. I can't be the only one in CT who suffers from this.
Thanks for the warm welcome Pat!

Heather :D
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Postby silkie » Mon Oct 09, 2006 12:03 am

Hiya Heather

Big welcome Glad you found us.
It is great to get a name for this swelling i remember the Feeling of sheer relief

I am in the UK The mrsa is something a friend with LE is dealing with
Over hear we have what we uses to call district nurses/practice nurses they come to you home.

She has them come they do 4 layer bandaging with the mrsa i know how difficult it is

She has the special liquid to use on her hands etc gloves and has to do it every time she touches her limbs
.
The practical care for her lymph cannot be done sometimes because of the mrsa but she is winning the battle slowly

The lymph i had the tree trunk legs and was misdiagnosed for years

to anyone finding they have lymph after waiting for diagnosis for any length of time

I would say learn all you can about how to care for your limbs
skin care is essential and nail care as early as possible later it might be to late to save help the general condition of the skin like the elasticity

Pat has great info on skin care

learn to elivate your legs whenever possible and excercise especially
stretching the limbs learn a good breathing technique both will help[
the lymph move slowly in your limbs

eat a good healthy diet or the pounds creep on

and try to stay off your feet (i mean take time our to have a little walk if you have a sitting job and a sit down if you have a standing job)

if you sit at work try to get your feet off the floor a small box or keep your feet moving shuffleing

all helps the lymph building up thru the day

extreemes of heat or cold are not good

see the 18 tips for lymphers really helpful

there is so much info here all first class researched and with links to
all information

there is a lot but plough thru it you will learn more here than anywhere else on the net

and the members are more like family
and Pat is fantastic

huggggggggggggggggg
welcome again to the family

silks xxxxxxxxx
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hi heather

Postby ang » Mon Oct 09, 2006 1:26 am

my name is angela a friend of silks

i have primary and mrsa

i live in the uk i found it very hard having the lymph and mrsa at first but i am slowly getting there

i found silks about 4 months ago shes been a great help with all the support and info

all the info is here on pats site hes great to but if u need to talk about mrsa we can and i can try and help you out if i can you are the first one that has lymph and mrsa that i have heard of so i would be nice to talk to some one else so get i touch if you want to have a chat i dont know how but pat or silks can help you find me ok

and i am glad you found us

cuddlesssssssssssssss

angxxxxxxxxxxxxxxx
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Postby patoco » Mon Oct 09, 2006 2:10 am

Hi Ya Ang :)

And here is a very special welcome to you too :wink: :D

This MRSA, frightening bacterial infection. Across the pond here, there have been continous news articles on its spread. Now it is literally everywhere you can think of.

We even had several high schools in Georgia (where I live) that had severe outbreaks in their gymns.

I wish you the very very best and am lookforward to getting to know you. :!: :!:

Pat
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Postby bouncedrealitycheck » Mon Oct 09, 2006 10:06 pm

Hey Heather! It's Michelle from MySpace...so glad to see you here! This is a great site and so many of my questions and concerns have been answered. It's so nice to know someone else had the exact question I needed to ask, and Pat and Silkie and EVERYONE here is fantastic!

Hope y'all have a fabulous week.

Michelle
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Postby XrayGirl » Wed Oct 25, 2006 8:26 pm

Hi Heather!
I'm new here tonight, too! I really don't have any answers as to WHY this has happend to me, either. I get so angry when I think for years my doctor just blew me off whenver I tried to address my swollen legs with her! :twisted: I never really knew lymphedema existed, except for after breast cancer! Although I am only 43 yrs old, I feel I am WAY to young to be suffering from this! I am sure that you must REALLY feel like this, too! I get really upset thinking about what my legs will look like in another 10-20 years...and even if I will have my legs! THAT is what scares me into doing all I can to keep my swelling down. That is what should keep all of us on a strict regiem!! I will keep you in my prayers tonight! Hope to hear back from you soon!

Nancy
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Postby silkie » Wed Oct 25, 2006 9:12 pm

Hi Nancy big Welcome to the family

I was 52 when they finally said PRIMARY LYMPHEDEMA

What a day that was like a middle finger to all those doctors

that said There were no fat people in Belson yup a doc actually said that


I take care of my limbs and my skin as you say i want it as good as possible for the later years

I don't honestly thing about having my limbs later

Que sera sera i might be gone of other causes tomorrow

So i take care and leave the what ifs in the future enough to worry about getting thru today

But i do so understand where your coming from

What lymph has taught me is a more laid back approach to life

i dont have to do everything right now things that are uninportant are not
major issues now in my life

hugggggggggggggg

look forward to hearing from you soon

Silksxxxxxxxxxxxx
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