New to support groups

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!!!

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

New to support groups

Postby patoco » Mon Jul 10, 2006 12:16 am

Super welcome to our family :!: :!:

Do you remember when exactly the swelling started and/or if there was anything that happened at the same time?

From what you are describing, sounds almost as if you have primary lymphedema. Sounds hard to believe but we have members of our groups that went undiagnosed for decades.

Be sure to check our our section on leg lymphedema and click on the
"Treatment Options" topic line on the left. There is a page on decongestive therapy that will describe the standard protocol treatment.

I'm just thankful now you have the diagnosis and can move ahead with getting all this under control. The decongestive therapy will make a major difference.

Look forward to getting to know you and please, don't hesitate to ask any questions or express any concerns, that why we are here :wink:

Pat
Last edited by patoco on Mon Sep 04, 2006 7:07 am, edited 1 time in total.
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Re: New to support groups

Postby NetterBug » Mon Jul 10, 2006 12:40 am

Welcome I joined here today and already people have made me greeted me warmly and made me feel comfortable. There is so much information here that you can get lost literally for HOURS! Just ask me ... I did. Ha.

I do hope that by the holidays you are able to be comfortable and are healthier.

Blessings,

Netter Bug
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Postby joanne johnson » Mon Jul 10, 2006 11:38 am

Hello & Netter bug,

Welcome to both of you! Glad you found us here at the lymph family. Yes, there is alot of great information on this site, all good stuff. We all have the same problems to work with. All the other lymphers are terrific and we just want to help each other live our daily lives as comfortably and happy and healthy as possible.

I have had lymphedema in my legs for 25 years so I can relate to the baggy pants and hard to find shoes. Hope to get to know both of you better through postings.
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Postby NetterBug » Mon Jul 10, 2006 12:36 pm

Hi Joanne! Thanks for the warm welcome!!
Twenty five years, eh? Wow! For some reason I thought that LE went away after a period of time and treatment, but that is not the case, is it?

To be honest, I am obese, so baggy pants are fine by me anytime! :)

Although I don't have LE I do have edema and at times there is not a shoe on earth that fits right, and I am all about comfort so I often walk barefoot, or with socks on. With hardwood floors walking barefoot is not a good thing, my feet are UGLY on the bottom these days. LOL

Take care,
Netter Bug

joanne johnson wrote:Hello Netter bug,

Welcome to both of you! Glad you found us here at the lymph family. Yes, there is alot of great information on this site, all good stuff. We all have the same problems to work with. All the other lymphers are terrific and we just want to help each other live our daily lives as comfortably and happy and healthy as possible.

I have had lymphedema in my legs for 25 years so I can relate to the baggy pants and hard to find shoes. Hope to get to know both of you better through postings.
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Postby joanne johnson » Mon Jul 10, 2006 2:52 pm

Hi Netter,

Yes 25 years is a very long time to have lymphedema and unfortunately it does not ever go away. Wrapping etc. can temporarily decrease the swelling but it is only a means of control. I think we can learn to live with anything that is thrown at us.

As far as shoes are concerned it is very challenging to find comfortable shoes. I live in N.Y.and have found 2 shoe stores that cater to feet that are hard to fit. One store is Foot Solutions and the other is the Rugged Boot. They always find something comfortable. The shoes are quite expensive but they do last a long time and they are worth every penny to be comfortable. Look in your phone book under shoes and some ads will say hard to fit shoes. Give it a try. Good luck!
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Postby joanne johnson » Mon Jul 10, 2006 10:36 pm

Hi

Where do you live? Are you in New York. Foot Solutions is in Rye, N.Y. and Rugged Boot is in Mohegan Lake, N.Y. I don't know if they are part of a chain. Look in your phone book. Actually sneakers don't really give your feet good support. Your feet may hurt less in shoes.
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Postby kathy » Wed Jul 12, 2006 1:28 pm

hi
your sneakers sound like the type of shoe that i wore when i was bandaging 24/7. i ordered mine online at: payless.com

they have all kinds of shoes and sneakers and are pretty cheap. they have a store in our mall here in pa and if you have them delivered to the store and you pick them up yourself, i don't think that there is any shipping charge added. see if they have a store where you live.

hope this helps,
kathy :)
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Postby Catherine Easton » Wed Jul 26, 2006 7:10 pm

Hi Kathy, Why did the bandage your legs 24/7 did the swelling not come back when you took the bandage of. Did it help getting them strapped up
ive had lymphedema all my life I'm 40 and ive never had treatments like that

Cathy
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Postby kathy » Thu Jul 27, 2006 12:18 pm

HI CATHY,
I ONLY HAD MY LEG BANDAGED TO MY KNEE. WHILE I WAS GOING THROUGH INTENSIVE THERAPY (EVERY DAY), THE ONLY TIME I TOOK THE BANDAGES OFF WAS WHEN I WOULD GET MY MASSAGE ON MY LEG. SHE WOULD THEN BANDAGE MY LEG BACK UP. NOW THAT I AM DOING THIS AT HOME, I ONLY BANDAGE MY LEG BEFORE I GO TO BED, AND AS SOON AS I GET UP, I REMOVE THE BANDAGES AND PUT MY SUPPORT STOCKING ON.

DURING THE DAY, MY LEG WILL SWELL A LITTLE, BUT NOTHING LIKE IT DID PRIOR TO BANDAGING. I DON'T HAVE TO USE ANY KIND OF STRAP BECAUSE IT IS ONLY TO MY KNEE.
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