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Waging war against life-threatening lupus

January 6, 2010

Karen Birney of Narrowsburg is certain there are times people notice her in her motorized scooter — and are convinced there's nothing wrong with her.

Because if she's out and about, it's a good day living with lupus. She'll be wearing jeans, makeup, and chattering animatedly about whatever's going on.

"They don't realize what's going on inside," she'll often say to her close friend, Nancy Esposito of White Sulphur Springs, of the questioning looks she receives from strangers.

But in a matter of a day or two, what's going on inside can flare up and manifest on the outside, as well. Karen's face might suddenly be swollen, and one side a little droopy.

"There will be times when you are OK; and then you are not," Karen says. "You may not even be able to get out of bed."

This most recent flare-up has been particularly challenging, says Esposito of the past three months.

In September, Karen and her husband, Scott, were finally able to take an anniversary cruise.

"She had a few issues while away, but nothing major," says Esposito.

Karen also attended a birthday party in September — walking with a cane and almost glowing, says Esposito.

But a month later, she was barely able to attend the Walk With Us to Cure Lupus fundraiser in New York City. Friends who participated in the walk could not believe it was the same Karen.

Since then, she's been in and out of the hospital. Her leg pain is often excruciating — she's had a pain pump implanted — because of vasculitis. Vasculitis, or the inflammation of blood vessels, can also lead to stroke — which it did, about two years ago, for Karen.

"I just found out that the vasculitis is now in both my legs," says Karen. "This means I will need to go on chemo and Prednisone."

Adds Esposito, "There's also been a new diagnosis regarding her heart, so they're worried about starting chemo, which some lupus patients respond well to with these symptoms. Others don't. Given all the side effects, chemo is risky. "» Karen hates all the medications, but she wants to be there to see her 18-month-old granddaughter grow up."


...
 
Read the full article here
 
Source recordonline.com


Waging war against life-threatening lupus

January 6, 2010

Karen Birney of Narrowsburg is certain there are times people notice her in her motorized scooter — and are convinced there's nothing wrong with her.

Because if she's out and about, it's a good day living with lupus. She'll be wearing jeans, makeup, and chattering animatedly about whatever's going on.

"They don't realize what's going on inside," she'll often say to her close friend, Nancy Esposito of White Sulphur Springs, of the questioning looks she receives from strangers.

But in a matter of a day or two, what's going on inside can flare up and manifest on the outside, as well. Karen's face might suddenly be swollen, and one side a little droopy.

"There will be times when you are OK; and then you are not," Karen says. "You may not even be able to get out of bed."

This most recent flare-up has been particularly challenging, says Esposito of the past three months.

In September, Karen and her husband, Scott, were finally able to take an anniversary cruise.

"She had a few issues while away, but nothing major," says Esposito.

Karen also attended a birthday party in September — walking with a cane and almost glowing, says Esposito.

But a month later, she was barely able to attend the Walk With Us to Cure Lupus fundraiser in New York City. Friends who participated in the walk could not believe it was the same Karen.

Since then, she's been in and out of the hospital. Her leg pain is often excruciating — she's had a pain pump implanted — because of vasculitis. Vasculitis, or the inflammation of blood vessels, can also lead to stroke — which it did, about two years ago, for Karen.

"I just found out that the vasculitis is now in both my legs," says Karen. "This means I will need to go on chemo and Prednisone."

Adds Esposito, "There's also been a new diagnosis regarding her heart, so they're worried about starting chemo, which some lupus patients respond well to with these symptoms. Others don't. Given all the side effects, chemo is risky. "» Karen hates all the medications, but she wants to be there to see her 18-month-old granddaughter grow up."


...
 
Read the full article here
 
Source recordonline.com



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