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04/03/2008 17:42
PamelaG
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Out of all the people I sent it to I only heard back from 4, and 2 of them must have CRS really bad because they talk like there's nothing wrong with me. And one of the 2 that do know for sure wrote back and said:

Sweetie when you get to that point let me know so I can say good-bye

OUCH! Did I take that wrong??


Pamela {please}

I wish tons of love and hugs!

Favorite sites besides MDJunction:
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04/03/2008 17:50
JamClarks
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wow thats's horrible! no you didn't take that wrong I would have taken It that way also!Thank goodness we all have each other because I am starting to feel that people, are just down right stupid and just don't get It!

Jamie

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04/03/2008 18:14
cadburry
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Pamela

I think I would send them an email back and tell them, I'm not to that point, but now is a good time to go ahead and say good bye because if I ever get to that point I certainly don't want to waste some of my last momments on you.

Why are people and doctors included, so heartless?

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04/03/2008 19:11
Mydragonfly
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That was a very hurtful thing to say to anyone.

Comments like that is why we need to get the word out and help educate people.

dragonfly

The Dragonfly brings the light and color of transformation into your life.
To learn more about Fibromyalgia
www.fmaware.org ***
www.webmd.com/fibromyalgia *** www.niams.nih.gov/hi/topics/fibromyalgia/fffibro.htm ***
www.painfoundation.org *** www.rheumatology.org/public/factsheets/fibromya_new.asp ***
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04/03/2008 19:21
Maineiac

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Pamela, whoever said that to you is totally insensitive. If that was me, I'd write them back and say "Well I'm at the point now where I'm going to say goodbye to you anyway."
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04/03/2008 19:25
PamelaG
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Thanks ladies, I thought maybe I was just being emotional.

A couple of the friends I 'used to have' would say things to that effect, well, actually worse, but they're not communicating anymore. I wasn't sure if I ran them off because like you hear so much, people can't seem to stand people who won't ever "get better", or if I was just over emotional.

Thanks again bunches!!


Pamela {please}

I wish tons of love and hugs!

Favorite sites besides MDJunction:
http://www.invisableillness.com
& the Fibro Store at:
http://www.cafepress.com/artisticability
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04/04/2008 05:22
AngelBooze
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Pamela,

I would of taken it that same way. People are very insensitive when it comes to something that they know nothing about. Sometimes I feel that they do not want to know either. At least we do have each other and can understand & be there for each other.

Do not let it get you down. They just do not want to get smarter they want to stay dumb to things that do not affect them. Do not worry about them blow them off.

Rita

AngelBooze
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04/04/2008 23:03
schmitty
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I just sent a e-mail to Oparh. I also posted the link on thier also. Hopefully one of us will get a reply. It would nice for people to understand what we go thru & what Lisa went thru.

Post edited by: schmitty, at: 04/09/2008 17:16

From: Lucas Schmitter
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04/04/2008 23:06
PamelaG
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I agree Schmitty. Welcome to the group! Hope you find what you are looking for, as well as some good helpful friends!

Pamela {please}

I wish tons of love and hugs!

Favorite sites besides MDJunction:
http://www.invisableillness.com
& the Fibro Store at:
http://www.cafepress.com/artisticability
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04/08/2008 15:17
cadburry
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Her pain, his ache

For a while, Tommy Varillas couldn't understand his wife's misery. Now he knows.

By Rodney Thrash, Times Staff Writer

Published August 28, 2007

------------------------------------------------------------ --------------------

OLDSMAR - For 10 years, pain ravaged Lisa Varillas. For two of those years, her husband, Tommy, would say, "It's all in your head." Lisa had fibromyalgia, a condition that doctors often mistake for depression because the people affected look healthy. Recently Tommy held a picture of his wife. The date on the back - 5/22/00 - was three years after the pain began. In the picture, Lisa floats in a baptismal pool. "The best day of her life," he said. She hoists her fists in the air, like a V. Her smile is wide. "This," Tommy said, "does not look like pain."

* * *

There were things the picture didn't capture. How simple things - hugging, sitting, standing, cooking, cleaning, wearing bras and closed-toe shoes - hurt. How, at 53, Lisa wore diapers.

How she couldn't sleep more than four hours a night because her inflamed ears turned apple red. How she and Tommy, affectionate in the beginning of their marriage, couldn't hold each other or sleep in the same room. How her fingers swelled so much she stopped wearing her wedding ring. How her cries echoed through the couple's villa all day and all night. How seven years, two months and seven days after the picture was taken, Lisa decided she couldn't deal with the pain anymore.

Tommy really believes his wife killed herself so he could get on with life.

"She was a very unselfish woman," he said. "I think she was feeling she was holding me back from being happy."

Tommy and Lisa met 20 years ago on Long Island, N.Y. She walked into his hair salon, which offered free haircuts before noon. Tommy had an open chair. "Fate, as it turned out," he said.

She rested her head against the shampoo sink and stared at Tommy with those blue eyes. Those eyes made him melt. Tommy asked for her number and two years later, her hand in marriage.

They took sailboat trips up the East River. They dined on lobster at Old Westbury Gardens. And they decided, like a lot of New Yorkers do, to sell Tommy's business and move to Florida.

In the beginning, they'd go out, take spontaneous trips to the beach. When the pain began gnawing at Lisa's body, all that - the nights on the town, the cruises, the road trips - stopped.

Tommy didn't believe Lisa's pain was real for good reason: "This one doctor said, 'I think maybe you should go see a psychiatrist about this.' "

Lisa grew irate. "This is nothing that's in my head," she told the doctor. "This is pain that I have in my body."

Lisa unleashed on her husband, too. "You're listening to them," she said, "instead of your wife."

Tommy pushed her to stay active.

"Clean the house.

"Go in the back yard and do the weeding.

"Take a walk down to the beach.

"Go shopping.

"Lisa, come on. You got to get out. You can't stay home."

He just didn't understand what was bothering her. No one did. He didn't want her to sit at home and waste away. He thought if she had any shot of getting better, she had to stay busy. She tried, but the more work she did, the worse she felt.

One day, Tommy described Lisa's symptoms to a customer with similar signs. "Sounds like fibromyalgia," the customer said. Tommy had never heard of the word. He bought books and read that 95 percent of those with fibromyalgia are women. He consulted other doctors. The customer - and Lisa - were right.

* * *

On Aug. 6, the St. Petersburg Times published a columnlong tribute to Lisa. Tommy wrote it the week she committed suicide. "This is my legacy to my wife," he said. "To let people know that people that look healthy don't have to be healthy inside."

He is saddled with guilt.

"I betrayed her by listening to others instead of listening to her. We've gotten so conditioned in this world that doctors know best. That we don't know as good as they do. This is a case that they were wrong. They were very wrong."

His tribute to her is filled with grief, but also relief.

"For the first time in 10 years, my wife has no pain. I'm happy for me because I can get on with my life like she wanted me to. I can go be with my children like she wanted me to. I can get on with doing the things that she wanted me to do that she felt she was holding me back from."

Like selling the house and moving back to Long Island, where his three children and four grandchildren still live.

The day his tribute ran, he picked up the urn with Lisa's ashes. He set it on the dresser next to his bed.

Rodney Thrash can be reached at 727 893-8352 or rthrash@sptimes.com.

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