stressed and fed up

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stressed and fed up

Postby VeeVee » Wed Jul 19, 2006 5:22 pm

Okay, so I'm 19 years old and have Lymphedema. No one understands what i'm going through, and I'm so tired of trying to explain the feelings of it, and what I have to deal with. The fact that it's not extremely noticable yet is even harder, because when I talk about.. people think that beause they cant see it, it must not be that bad. I'm trying so hard to deal, but at this point I dont know how. I feel like I'm the only one going through this, even though my family and friends are very supportive. They say "wow, that sucks" and that makes things worse. Gahh
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Postby patoco » Wed Jul 19, 2006 7:18 pm

Hi Vanessa :)

So very glad you join our family here :!: :!:

I really do understand how you feel and have had to deal with probably very similar feelins at several times in my life.

When I was young, it is true I already had lymphedema, but I was one of the most active people you'd ever find with it. I loved playing football, socer...other sports. I could take a football and land it in your backpocket anywhere. Then in junior high I got really slammed...some massive massive infections. No more p.e......and forget any football, soccer or anything else.

Then in my early twenties, the lymphedema stablized and I was able to go back to a lot of my acitivities. Loved walking and hiking...especially in the mountains. I was a gardner with a yard that people would stop to take pictures off. Even dug huge raised beds myself.

This all changed again when I began my battle with lymphoma. This year especially I was just slammed against a brick wall. Can't do anything like I used to....and I'm having a tough time adjusting too.

Never have been a couch potato..or a spectator in life....always like to be active and involved.

My hope for you is that your lymphedema will stablize and you too can go back to doing some of those activities that meant so much to you.

I wanted to ask if you have ever been to a certified lymphedema therapist and actually gone through the manual decongestive therapy? They tried the pump on me when I was 15-17 and it wound up not only not helping, but in the long run causing problems.

I hope you get a chance to look over our section on leg lymphedema and see if there is some info there that might help as well.

BTW..one sport that is super great and really helps with lymphedema is swimming. I always loved the water...born and raised in Florida until I moved to Oregon at 15.

The water acts as a gentle massage (much like the therapy) and helps move the fluids out of your legs, where the good lymphatics can move it out.

Look forward to getting to know you and in your participation. Please don't hesitate to ask any question or express any concerns that you might have.

:wink:

Pat
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Postby VeeVee » Wed Jul 19, 2006 11:26 pm

Thank you so much Pat for boosting my confidence in all of this. I'm trying really hard right now to realize that hopefully someday i'll be able to do the things that I used to do. I've been to therapist, but Im not quite sure that I've been to the one that you mentioned. I have done some manual drainage, but you might be talking about something different. I'd like some information on that. Thank you so much.
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Postby silkie » Thu Jul 20, 2006 11:06 am

Hi Vee

mine started at 11 got the legs straight away only not diagnosed

did most things (lousy runner unless someone had a spider aimed for down my back) Had three children brought them up it was 52 when it hit me. So i suppose you could say like pat mine must have somehow stabalised between 11 and 52

My teens were tough big legs made for big insensative comments
from people bt my friends were and still are friends

Life is about you being happy maybe some things are not possible now
but many things are consentrate on the things you enjoy and can do
and possibly new ideas. Without lymph life changes things you did
are replaced by new often exciting things

I took up painting and sketching again I have sold a few
just for the money to do more but it is great when someone wants one of my pictures i gewt such a buzz from it

my next challenge is trying to make pants that will help slimb my legs
not make them seem even bigger I hate sewing but i want these pants i have an idea for them I can make a pattern just the machines that hate me lol they do there own thing like there is a gremlin inside just having fun with me lol thats my next challenge to conquer that gremlin

i have done some dress designs to i have lipedema as well it basically means i am large from the waist down and much smaller above the waist
So i need to make somthing that will take the eye from the hips

sorry but im feeling excited about this im going on too much i say enthusiastic my kids say mommmmm Boring

welcome Vic glad you found us

hugggggggg

Silks xxxxxxxxxxxx
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Postby Kim » Thu Jul 20, 2006 3:05 pm

OOOOOH Silkie,

I like the sound of those dresses! Keep us updated!! Exciting!

I don't have a creative bone in my body, but I certainly appreciate those who do!! :D

Kim :)
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Postby silkie » Thu Jul 20, 2006 3:14 pm

Hi Kim

Sure will x fingers i hope they will come out ok if they do i can do a pattern i can send it and the trousers to those im really pleased with want to get a friends afvice on materials so they hang correctly

will keep you updated


ohhhhhhh if they look like stalla macCarneys might even do a bit of

posing in them put pics in chat site lol


hugggggggggggggg

Silksxxxxx
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Postby Kim » Thu Jul 20, 2006 6:54 pm

Yes, Silkie!! You'll be our very own model doing a photo shoot in her own designs! :D

Kim :)
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Postby memphis » Sun Jul 23, 2006 4:40 am

Vee....

LMAO, I nearly spit out my water laughjing when I read "Wow that sucks". Man if I had a dollar every time I heard that one :roll:

I have been diagnosed a little over a year I think, problem is its a disease that goes un noticed or assumed that you have to be fat to get it, sad really....

I tend to have a bizzare outloko on things at times...know what? I say to heck with those that want to stare, not understand, etc. I mean the fact of the matter is it will never be understood by some one with out Lymp...do what I do, adopt a care free attitude, keep doing what your doing and dont let it get the best of you...I kicked it in the butt...in fact will be in a Bi-athalon in a few weeks....Lymph holding me back....HECK NO!!!! :wink:
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Postby VeeVee » Sun Jul 23, 2006 5:29 pm

hahahahha you just made my day Memphis! Your attitude is awesome, and I'm so glad that you said all that stuff... it made me feel a lot better. I'm developing that care free attitude more and more each day. I'll notice things that I'll do, that I never would have thought of doing. Keep up that attitude because people like me need to hear those things would in a while :lol: Thank you!!!!!
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Postby Catherine Easton » Mon Jul 24, 2006 1:48 pm

Hi, i'm Cathy I live in Scotland I was born with lymphedema, i'm 40 now and ive never spoke to anyone who has lymphedema.
I've been looking around the site and ive never heard of some of the treatments you get. Ive only had antibiotics when infections hit. It's been really interesting. :o
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Postby joanne johnson » Mon Jul 24, 2006 6:18 pm

Hi Cathy,
Welcome to Lymphedemapeople! Most of us never knew anyone else either and you can feel desperately alone. This site is absolutely wonderful. You will learn so much and never feel alone again. We all have the same unique challenges that go with this condition and understand the victories and frustrations, Hang around, you will be happy that you did!
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Postby silkie » Tue Jul 25, 2006 12:37 am

Hi Cathy

Glad you found us. It is fantastic when you findand can chat with people like yourself with lymphedema

I am in England i adore Scotland any excuse to go there

Actually i have had help from the practioners at Glasgow when i was in Falkirik And Scotland has a pretty Good Record in lymphedema help

Therapists and Doctors Not brilliany but Amongst the best in UK

Any questions please ask as you see always a friendly helpful response here

and Pat is Brilliant so much he knows

hugggggggggggg

Silks xxxxx
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