I suppose it's time to share my story.

HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil

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I suppose it's time to share my story.

Postby adrienne » Wed Nov 15, 2006 3:25 pm

Hello everyone. My name is Adrienne and I just turned 30. When I was 22, a very large tumor was discovered in my abdomen. It was attached to my right ovary and covered my entire belly. Looking 6 months pregnant I was told I'd have a hysterectomy and probably need a round or two of chemo. The tumor weighed in at 15-20 lbs and slides were sent to harvard for a second opinion {my father was a doctor and on first view they recommended chemo. He wasn't taking that for an answer unless the best said so. Thanks dad..} I was extremely lucky. Not only were they able to save the uterus and remaining ovary, I was in the clear from needing chemo. I've never had such a feeling of complete joy in my life. I felt like I could conquer anything. No one every told me about Lymphedema.

Two years past and I while I've had a chronic cyst problem on the ovary threatening a hysterectomy on more than one occasion, I've never had any new growths.

My father passed away and shortly after, my leg was "all of the sudden" swollen. Having no idea what triggered it, they ran every test they could. They found I had a moderate venous insufficiency, but not enough to cause the amount of swelling I had. The doctors had the notes from the surgery in my chart but apparently didn't see that lymph nodes were removed. The whole process was an exasperating 6 weeks only to be told I'd be going in for massage to "clear the blockage" in my system. My CDT therapist was the one who broke the news. I cried the whole session then screamed and cried when I returned to the car. I just felt like I had been given a life sentence.

It's still hard for me to find acceptance, but this place gives me so much hope that I will learn to live with lymphedema instead of fighting it. It's hard for me to find support where I live, but it's mostly due to my inability to trust people. I'm looking for a good therapist I can feel comfortable enough with to trust, but I don't have that problem here.

It's easy to trust people who share common struggle in life. Especially when they've already been so supportive and helpful. Thanks for being here.
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Location: portland, oregon

Postby silkie » Wed Nov 15, 2006 4:14 pm

Hi Adrienne

I was 52 before diagnosis i was 10 11 years old when i got those frist signs . Many of us are born with this to. It is so difficult to find doctros that recognise this condition although thanks to breast cancer lymphedema is more recognised . Unfortunately i think informing
sufferers of the possiblity of developing secondary lymph still needs vast improvement in some areas.

As i said i was 52 before diagnosis and that was a lymphedma therapist?practioner that helped me so much not a doctor

At the age of 55 i have begun to have faith in a doctor again
My new gp listens asks my opinion as i have to live with this and is so open minded and each time i see him he is more and more knowledgable

Only in the last few years there has been so many changes and i treally hope this continues

Life with lymphedema for me has meant adapting to a different way of life
but i still find life a challange and I refuse to give up on me just because i have to live differently

It is sometimes so demanding and exsaberating frustrating and you do feel alone with no help Then i come into the group my lymph family they life me seem to fill me with a new energy .

We all deal and cope with lymph in our own ways I found not working (i was a workaholic)the hardest hurdle yet now 4 years on i find i get more out of achieving my personal goals than work ever gave me

We are worth the effort, and living your life to the full
reaching your personal limits well
who actually does that in this world continues to reach there personal best
not many . I am very happy with who i am
it is not easy, and many things i cannot do anymore but there are so many other things i would never have tried or achieved if i had not have had to change my lifestyle to live with lymph

Every cloud has a silver lining if your prepared to look for iit

Well i dont know about silver but i have found another way of living my life to the fullest even with lymph

I dont think any one with a cronic condition finds life easy
the challeneges are different but i think each of us are worth
the effort

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