new member needs help

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new member needs help

Postby Drea » Tue Jul 18, 2006 5:01 pm



Hi there :D
My name is Andrea, you can call me drea. I have Lymphedema in both legs. Stage 4plus. It is Always gettig itchy, red, & infected these last three months. sometimes, I feel like I cant go on!~! I have three beautiful children & a great Husband, who hs been more than supportive. I hate days like today, when my pants wont rolldown my legs, and it hurts to deal . I have a LOT of lil blisters that are seeping out oily substances. Along with All the pain, and lack if mobility, I am EMBARASSED to look like this. I have been in the hospital 3 times in 4 months for infection. NO doctor yet, just the hospital one that was assigned, That told me" YOU need to lose the weight, youare sick because you are FAT!" :oops: I buste out crying my eyes out, and asked him if he meant that I had given MYself this disease...YES was his reply. Is that TRUE? Did I DO this to MYself?? Any feedback would be wonderful, Drea
Drea
 
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Location: Oregon

Postby patoco » Tue Jul 18, 2006 6:50 pm

Hi Drea

Super welcome to our family :D I'm an old Oregonian too...LOL...transplanted down here in Georgia. Portland was my home for over 20 years.

Drea, if you have lymphedema in your legs, you can loose all the weight possible and it is not going to make the lymphedema go away.

That doctor makes me mad as :evil: :twisted: :evil: ...what was his name Kirvorkian?

I've never been more then a few pounds over weight and have horrible stage 4 lymphedema in both my legs too....ask the jerk how I got it.

What we need to do is try to get you in contact with a therapist. Look on the left index under "Therapists - click on it and it will open up. Click on Schools of Therapy. This will provide you links direct to the different schools that train and certified therapists. You can check on their "Find a Therapist page to locate a therapist close to you. Also, you may want to check out "Clinics, hospital affiliated"......also under United States.

Try to get a PCP too and also, please see if you can get a referral to an infectious disease doctor. Mine has been absolutely great at helping me with those horrible infections.

I am so glad you joined us, and very much look forward to getting to know you. Please, don't hesitate to post any questions or any concerns. Take a look at the above and if you have any problems, just let me know.

Big hug to Ya

Pat
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Postby Drea » Tue Jul 18, 2006 9:52 pm

Thank you Pat!! I have been so frustrated, embarassed, and down right sad. I can barely walk, I fal all the time, and I feel ugly as I can possibly feel :( I try to fight it, but the looks that I get...are terrible I developed lymphedema during pregnancy, and I gained 85 pounds after birth. The pain is excruciating, and i was misdiagnosed for 3 years. Please talk to me, and tell me that YOU are dealing, so at least I know that I am not alone. Many many hugs to you Pat. thanx so much for the reply, you made my day. Drea
Drea
 
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Location: Oregon

Postby patoco » Wed Jul 19, 2006 1:02 am

Hi Drea :D

Do you know that pregnancy is a time when lymphedema can begin...I have know a number of women that have had that happen. My own mother had a horrible time during her pregnancies. This shows me even more how little that doctor understands.

The fact that your lymphedema started during pregnancy also tells me that without a doubt your lymphedema was NOT caused by you being "fat." So, please, put that though aside.

Drea, I have had lymphedema every since I was born in 1952 and was actually first diagnosed in 1959 while we still lived in a small town in Florida. After moving to Oregon, I spent half my high school years up at the med school in Portland where the doctors tried to figure out ways to help. They had wondeful doctors there, then, that even had written a paper called Lymphedema from Abdominal Surgery...in 1963. Imagine back then these doctors understood more about LE then most doctors do today. :idea:

It is a tragedy that they have retired and were not followed by other doctors who continued their research.

It has been an interesting experience living with lymphedema all this time. Raised a family, was very active in Portland civic groups and politics, served as student body president of both Portland Community College and Portland State Unversity, my children now are grown and I am expecting my first grandchild in October. :wink: :D

Since 1995 I have also had to deal with a couple lymphomas...but here I am...still going :!: :!: :!:

Just be encouraged that there is hope and treatment and I really look forward to knowing that you are getting help and are better. I am glad too, that your husband is supportive...that is so very important.

Let me know how you do, looking through the info.

Big hug to Ya

Pat
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Re: new member needs help

Postby memphis » Wed Jul 19, 2006 5:00 am

Drea wrote:" YOU need to lose the weight, youare sick because you are FAT!" :oops:


What a TOOL!!!

That said, welcome Drea.....I doubt I can tell you anything that will change your life but if you'd be so kind as to sit there and read my little blurb maybe that will give you some insight as to how I deal with it and how I have totally accepted and at this point am glad I got Lymph...

The quick version.......... :wink: and I want to preface this with the fact that this worked for me and is no cure all for the disease.

At my heaviest I was pushing 370 pounds..I wont pull any punches here, I was morbidly obese, no doubt about it. I noticed one day my leg swelling and it finally got to the point where I could no longer walk because it was just too darn painful. The following day I went to the doc's and they did all kinds of tests on me, I remeber lieing there and was crying thinking what have I done to myself. Easily I was 170 pounds overweight, I let myself go and was lost. My main fear, the one that got my butt in gear was my daughter, how could I possibly risk dieing and not being here for her.

So, my diet/life cahnge started out as an attempt to loose weight, not to get rid of the Lymph. The abriged version of the story is this, I have lost over 100 pounds of fat, my medications I was taking for hbp have decreased a a ton, I feel better, I look better, and most of all I like who I am again. I am not going to bore you with my food plan or the very little excercise I did but I will tell you this, I made a decision to change my eating habits and made some drastic changes. The funny thing was that as my body changed so did the Lymp. Initially my leg was big, looked like I had a thigh all the way down to my invisible ankle. Now my leg looks darn near normal and you have to look really really close just to see that there is a slight size differance in the other leg. Again I am not saying this gets rid of Lymph but I find no other reason for my situation that it changed.

As far as how I deal.......I just dont care!! LOL. I know I have a family that loves me and kids that look at me and think I huunbg the moon. I suspect you do as well so your off to a great start.

To make changes in your life, as was in mine, you do not need will power or a power diet or a gym membership...you need to do one thing. Make the decision! Make the decision that you are ready to make a change and go for it.....

Feel free to shoot me an email if you wanna chat
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Postby silkie » Wed Jul 19, 2006 5:14 am

Hiya Drea
Big Hug hun and welcome

I know the hurt and anger and frustration, the feeling like some

alien with legs that look horrible, and doctors that look at you in disbelief

and that sneer of disgust

If for years and years your body has been building up fluid on fluid

how much goodness knows for your legs to get to stage 4 then the chances are you gained weight the Good thing is hun you can lose it

i wonder if these doctors can develop awareness of lymph sometimes i doubt it very much

but its not your fault this is not self inflicted over eating did not cause this

You probably were born with it The Doctors are unbelievable.

Do as Pat advises get help the fluid can be helped out of your legs

it will take time and patience and a good therapist and then you will need to do selfcare for the rest of your life to keep it under control its not so bad massage wrapping althought the supports are not Dior but they
are to me worth there weight in gold

I lost 8 inches of my ankles in two weeks seeing my therapist

she got my doctor to give me the ab's for the infections and taught me how to care for my legs . with the reduction of infections and fluid
your mobility will improve the redness and blisters will go

you can do simple stretching maybe swimming and then you can try
to get your weight reduced to what it was in your own time simple good food it takes time but you can do it but the weight hun thats somethig

thats not important unless you decide it is after your legs are sorted


You are not to blame for your legs

you were more than likely have lymph lots of lymphers print of information from here and take it with them to doctos , ER's

I am 55 have had big legs since puberty i was diagnosed 2002

i have weight problem that wasnt self inflicted it was a problem caused by fluid and compounded by years of ignorance

I am glad you found us If you want to blow of steam come tell us

if you want to scream it out come see us if you feel sad and low

come see us. We know what its like we have had the black days

come see us

Hugssssssssssss

Silks xxxxxxxxxxxxxxx
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Postby Drea » Wed Jul 19, 2006 8:39 am



Oh my Gosh, I thought that No one was gonna talk to me...I am crying all OVER this keyboard, because FINALLY....some one relates. I Know that you all know how low you can go, and I am there right now, clawing at a way out. I need to go collect my thoughts, and stop CRYING!! Then I will be back to the forums. I have prayed EVERY DAY for people like you, And thankfully, I was awarded. Hugs to Y'all. Drea
Drea
 
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Location: Oregon

Drea

Postby PamelaS » Wed Jul 19, 2006 8:57 am

Hi Drea,

Very glad that you have found this site. These people here, esp. Pat and Silkie have a great deal of understanding about this condition and resources to deal with it - they have been a Godsend to me.

First of all - forget about being "fat". It totally amazes me what doctors do not seem to know or choose to acknowledge about this condition - makes me angry also. From my understanding, pregnancy can be one of the contributing factors to lymphedema.

I hope that you can get a therapist as well as a good primary doctor who will tackle this head on and help you get back in control of your life - the best thing that could happen.

My own situation is that I'm a breast cancer survivor who had 18 lymph nodes removed under the right axilla (underarm). I developed lymphedema in the right arm about 1 year following my surgeries and chemo/radiation. It is amazing that only my radiation oncologist mentioned the possibiliity of Lymphedema. My surgeon and Medical Oncologist never once even mentioned the possibility. It took a friend at work to notice the swelling in my arm. Thankfully I am only a Stage 1, practice MLD and wrapping daily, as well as wear a sleeve/gauntlet.

Welcome Drea - we are glad to have you here and hope you are doing better really soon.

Pamela
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Postby memphis » Wed Jul 19, 2006 9:27 am

Drea wrote:[b]

I am crying all OVER this keyboard, because FINALLY....some one relates.


Dont shead the tears, wasnt long ago I came here all freaked out after I was diagnosed....people here are tons of help so if your having a good day a bad day or something made you laugh..post it, we are here for you :D
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Postby silkie » Wed Jul 19, 2006 9:48 am

Hey Drea
Wipe those tears
You want premature wrinkles as well as lymph

my brown days i get the music on very loud and wobble my bits round the house (very slowly) but i got the hips to wobble


Today is a good day Drea your not alone
today is when you are going to search for a lymph doctor and a therapist

if you have no luck with the doctors a therapist probably could recommend someone

or visa versa

I am in the uk so sometimes our time differences mean im asleep when people post but i will always try to get on and answer to me
thats what made this lepeople so wonderful there is always someone that will answer. The people here are like family Drea there here for us

lets know how the search in your area goes


huggggggggggggggggggggggggg

Silks xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
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Postby angieboo401 » Wed Jul 19, 2006 10:42 am

Hey there .. so glad you found this place. It is wonderful and noone understands this like people that are also dealing with it.

GRRRRRRRRRRRR at that Twit doc who doesn't even need that title. I am going to hold the expletives I am thinking about him... would the idiot think someone chose to have Cancer???? No, of course not .. and none of chose to have LE but guess what we do. My PCP was totally ignorant about LE.. I had asked her for several years why my left leg was getting so much bigger than the other one... she kept saying just lose the weight and it will take care of itself... WRONNNNNNG ANSWER! Luckily I got cellulitis in January and went in the hospital and got diagnosed. Now she is just totally blown away that there is treatment for Lymphedema... I will say this though she apologized profusely for her ignorance regarding it which says a lot about her. Anyway .. hang in there! Keep looking til you find the right doctor and therapist and do NOT give up!!
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Postby Drea » Thu Jul 20, 2006 8:01 am



I do feel as if I have stumbled into a group af angels, with all of your kind words and help and HUGS!!~! :D Thanx so much for taking the time to help me out. I am going to search for a doctor, I DID have a PCP, until My insurance changed, but HE never iagnosed the Lymphedema. My pain Management specialist and Physician Assistant knew what it was. Thankfully, they gave me a name for it, and a few pointers. Since the old dr dropped me, I have been in the Emergency room, and admitted for a week at a time each time for IV antibiotic treatments. THAT is where the Dr that told me that I was going to die was, Mr. "It is YOUR fault, and YOUR decision to be like THAT". So, now I need to get back up on that horse, & ride it to a better Dr, one with a CLUE. :roll: I wanted to ask a question that I am fearful of....Can I DIE from Lymphedema? Sometimes, I feel that I will.
Drea
 
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Location: Oregon

Postby patoco » Thu Jul 20, 2006 8:07 am

Hi Drea

Thankfully, it is rare that lymphedema itself becomes life threatening. The biggest danger most of us have is from the repeated cellulitis infections. They can be life threatening and can have serious complications as well.

I have known many lymphers who have lived to ripe old ages. My own grandma died at 80 and she didn't pass from lymphedema.

So :wink: :D jump on that horse...find a good doc...get treatment
and you'll be surprise how much better it can be.

Big hug to Ya

Pat 8)
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Postby Catherine Easton » Tue Jul 25, 2006 6:24 pm

Hi Drea,
I'm Cathy im new on here to I was born with Lymphedema i'm now 40 and I think its discracefull that a doctor would tell you that your sick because your fat. Ive put on weight now since I stopped smoking five years ago I never weighed any more than 8stone and ive had infections on and of all my life and weight had nothing to do with it. It's obvious that the clown know's nothing about Lymphedema. The guy's and arse.
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