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« on: July 12, 2006, 09:10:01 am »

Personal Lupus Stories
We encourage you to submit your own.

~Kathy

« Last Edit: July 12, 2006, 10:30:00 am by Kathy » Logged


I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #1 on: July 17, 2006, 01:12:53 pm »

http://lupusleftovers.blogspot.com/2006/07/91-profiles-in-lupus-kathy-walters.html
Kathy's Story~Be sure to vist Loretta's writings also on

http://journals.aol.com/lrttklly/LupusLeftovers/

And this one too!

http://blog.myspace.com/lifewithlupus
« Last Edit: November 08, 2006, 09:24:25 am by Kathy » Logged


I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #2 on: October 20, 2006, 06:52:31 pm »

Charms to soothe a savage ache

October 19, 2006



My youngest daughter is a non-stop dancer. She twirls. She spins. She jumps to the rhythm of drumbeats playing inside her head. She sings along to music no one else can hear. And she's happy all the time and bean-pole straight.

I, on the other hand, awake feeling as though sometime during the night I'd been the victim of a car crash. Bones ache. Muscles are knotted. A dull, persistent thumping running from my neck to my hip grinds at me from inside. It's how I start most mornings. And it stinks.

November's Natural Health magazine dedicates several articles to coping with chronic pain and all its ugly hand-maidens, including depression. One suggestion: dance, dance, dance.

"Cardiovascular exercise can increase endorphin levels, which enhances mood," the article quotes Los Angeles fitness instructor Jennifer Galardi.

Watching Kenya shimmy-shimmy-and-shake her way through the house, across the lawn, down the hall, I figure the article has to have some truth to it.

So when Kenya hops into the kitchen twitching twice as fast as the beat of the music, face gleaming with happiness, and announces: "Mom! Look what I can do!" her excitement is infectious. Too infectious. I follow along.

Oh, I can't keep up. I'm a lightweight by comparison. Still, just watching her boundless energy and joie de vivre pumps me up.

My body, already creaky and off-balance, is now bumping and flexing into unforeseen territory. "You're doing it, too, Mommy!" she yells. Yes, I'm doing ... something. But after a few minutes, I do notice one thing:

Pain is not the first thing on my mind. Instead, I feel happier. Now that could just be the effects of an indefatigable 7-year-old dancing like Elaine on Seinfeld. Or maybe it's the power of "the dance."

The doctor who manages my lupus care encourages me to exercise as much as possible.

October is Lupus Awareness month. One day we hope to have as much attention focused on the autoimmune disease that attacks up to a million Americans, as gets turned toward breast cancer every October. Lupus, like many chronic pain and autoimmune diseases, is insidious because it can mimic everything and nothing. Mine has not yet caused any organ failure, but call me crazy -- I'd like to stop it before it does.

A physical fitness plan, says my doctor, is a good way to take care of yourself.

So I do the treadmill; I dance with my kid; and I'm learning to do a lot more stretching. For months I'd watched Turbo Jam infomercials featuring fitness instructor Chalene Johnson. The music is funky, fast-paced and hip. And the moves are off-the-charts. The Turbo Jam Web site describes the workout plan as "calorie-blasting kickboxing, body sculpting, and the hottest dance music -- all guaranteed to give you jaw-dropping results, no matter what your fitness level."

Thinking only of the power of dance, I bought the videos, then was too chicken to try them. Until Kenya eyeballed them and pleaded, "Can I do it with you, Mom? Please!"

So we did.

Comical doesn't begin to describe our moves.

In the history of kickboxing, no one has seen punches so off-the-mark, kicks so pitiful or booty-shakes so perplexing.

Still, when it was all over, we both laughed and fell to the floor. Lauren, my worldly almost-9-year-old, did not appreciate the complexity of Turbo Jam. She asked us:

"Aren't you embarrassed?"

Turbo Jam was fun and made us feel like we were stars, even though we looked like floundering meteors. Kenya and I burst out laughing. "No!" we both said. We felt no shame.

Later, when the endorphins wear off, the pain will seep back into my muscles and joints. But that's later. For the moment, I giggle like a naughty schoolgirl.

Bad dancing, like chronic pain, will not stop me. I will live to dance again.
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #3 on: October 20, 2006, 07:02:46 pm »

Living with lupus
Support helps patients understand and manage baffling disease


IT ALL STARTED in 1969 with a really bad headache.
JoAnne Mendes, then 20, had just arrived in Hawaii with a few close friends and was on the beach to soak up some rays.

The self-professed sun worshiper thought nothing of snoozing on the sandy shores and did just that. But, as Mendes would learn years later, the afternoon respite in the tropical sun was anything but harmless.

When Mendes awoke, she had an excruciating headache and was barely able to walk across the street to her hotel. Initially, she figured it was simply a case of sunstroke, but as the days progressed the symptoms became worse.

"I had these severe headaches and spots from head to toe on my body. I was throwing up and I had a fever of 103,"she says.

After visiting a doctor, Mendes was told she had nothing more than a "bug" and with the help of antibiotics she'd be fine.

Well, Mendes was fine — for a few months — and then the symptoms returned — far worse than ever before.

For the next 25 years, Mendes, who until the age of 20 had been the picture of health, would ride a roller coaster of misdiagnosesuntil she found out that at the root of her physical and emotional pain was an autoimmune disease known as lupus.

"I had all these doctors telling me different things, giving me all these medications that I was allergic to, it was very frustrating," says Mendes, 55, of San Lorenzo. "It was a total sense of relief when I was told it was lupus. Now I had a name for what was causing me all this pain."

Lupus is a disease in which the immune system attacks itself for some unknown reason. It manifests in a variety of ways, from skin irritation and joint pain and swelling to symptoms affecting the brain and kidneys.

There are five types of lupus: systemic, discoid, subacute cutaneous, drug-induced systemic and neonatal, but systemic lupus erythematosus, or SLE, is perhaps the most pervasive. Overall, lupus affects about one in 1,000 and is often more prevalent in the Asian, African American and Latino populations.

The reason it took so long for Mendes' lupus to be diagnosed is that the disease is not well-understood by the medical community, says Dr. C. Michael Neuwelt, a rheumatologist and medical professor at Stanford University and The University of California, San Francisco.

Although lupus is believed to be genetic, Neuwelt says there is no known cause, which means that there is no definitive test for the disease. Plus, the wide array of symptoms makes it difficult to diagnose and treat since it often mimics other diseases.

Despite the lack of new medication on the market specifically targeting lupus, Neuwelt says there are advances in research and a variety of new drugs that are being looked at. On Saturday at Stanford University, Neuwelt will discuss these treatments at the Lupus Foundation of Northern California's fall conference.

That said, as a rule of thumb, a criteria of 11 symptoms is used to help determine whether a patient has lupus. Generally, a person must have four out of the 11 symptoms, which can range from photosensitivity to neurological disorders.

As for Mendes, one of her initial symptoms was photosensitivity, but because her lupus hadn't been diagnosed, she continued to sunbathe, which only exacerbated the disease.

Over the years, Mendes' condition escalated to include a laundry list of illnesses, allergies and medications, which she uses a spreadsheet to monitor.

For the past two years, Mendes has been experiencing a "flare up," or relapse of severe symptoms, which have rendered her unable to work and often unable to leave the house. She says the pain of the arthritic symptoms are so severe on most nights she's unable to sleep for more than a few hours at a time.

"I cry all the time. When you don't sleep your brain can't function. It's hard to do even little things because you're so tired and in so much pain," says Mendes. "It's so hard for me to even take a shower. When I do, I feel like a 90-year-old woman. It takes so much out of me. It takes me pretty much the whole day to recuperate from just taking a shower — it's pathetic."

Beyond symptoms of physical pain and mental exhaustion, which can lead to depression, lupus has been known to impair cognitive functioning.

Patricia Russ, 67, of Oakland, has been experiencing a decline in her ability to think clearly. The former college professor says tasks such as paying bills and organizing paperwork, which she once found simple, have now become an ordeal.

"It's definitely hard for me that I don't function on the level I used to. People can't seem to absorb that certain tasks are difficult for me now. It's also painful emotionally because people start to change and begin to distance themselves from you because of it," says Russ.

What makes daily life difficult for many diagnosed with lupus is that the disease rarely presents any visible physical manifestations, as is the case with Russ. Essentially, lupus patients are suffering on the inside, but appear perfectly fine on the outside, which makes it hard for family and friends to understand the disease.

"I hear it all the time, 'you look great.' Well, I don't feel great. A lot of the time people just don't believe that anything is wrong with you. They think you're making it up," says Joanne Becraft, 64, of Oakland.

Mendes, who is the head of a lupus support group in San Leandro, says one of the biggest challenges patients face is a lack of support from family and friends. She suggests that lupus patients invite members of their support network to meetings where they can learn more about the disease.

For Russ, the most important goal of the support group is to provide hope and show that lupus is not a life-threatening disease. It's a place where patients with all levels of lupus, from mild to severe, can share their stories and learn how to maintain a healthy attitude and keep the disease from ruling their life.

"Don't be afraid, says Russ. "It's OK to be scared. It's OK to learn to grieve for yourself. You just can't give into the disease, you have to keep going."

 

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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #4 on: October 20, 2006, 07:26:05 pm »




At 27, Steph Leadbeater isn’t thrilled to be living in her mom’s basement. Her mother cooks for her, cleans for her and generally makes sure she’s okay but Leadbeater craves a “normal” life – living on her own, going to work for at least eight hours a day and returning home at night to cook dinner, do laundry and maybe even socialize with friends.

Leadbeater can’t have that life, though. Not now, at least.

Working for more than an hour a day is impossible due to the crippling fatigue that overcomes her body, often leaving her too listless to do anything more than sit on the couch. The Port Coquitlam woman hates daytime television and is growing bored of watching movies; the only highlight of her day is the hour or so she spends painting small wooden trinkets such as jewellery boxes and chests. And that’s all her body can bear before exhaustion sets in.

Sometimes, she’ll push it by going out for a drink with friends or spending time in the sunshine but she’s quick to admit that breaking the rules puts her life in jeopardy.

Five years ago, Leadbeater was diagnosed with lupus, a chronic disease in which the immune system becomes hyperactive and attacks normal tissue. Nine out of 10 people diagnosed with lupus are women; some will die of it.

After she lost 75 pounds in three months and regularly experienced such severe “pins and needles” in her arms and legs that the limbs often went completely numb, a blood test in 2001 revealed Leadbeater had lupus, also known as the “disease of 1,000 faces” because its symptoms vary in every person it affects. Although she’s now taking medication that lessens the symptoms, Leadbeater is still in constant pain.

As she slumps on a couch in her dark room, her lack of energy is apparent – but so is her desire for something more.

“I just want a normal life, basically,” she says, noting she used to be active, working three jobs, playing baseball and enjoying a healthy social life.

And although there is no cure for lupus, Leadbeater and her mother, Judy, have made it their mission during the last five years to raise both awareness of the disease and funds for a cure. They launched the first and only Walk a Block for Lupus event in the Tri-Cities – now in its fourth year – which started with five walkers raising $100 and last year, boasted 17 people raising $1,000. This year, Leadbeater hopes 30 to 40 participants will join her cause and raise even more funds to find a cure for the disease that she says often goes under-reported.

“Eventually, I’d like to see this as big as the Terry Fox Run,” she said.
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #5 on: October 20, 2006, 07:48:01 pm »

Blood donors line up to help lupus patient

PASCAGOULA -- A plea for blood donations for Veronica Barlow did not go unheeded Sunday.

Family, friends and the congregation of the Church on the Rock, flocked to a mobile Ochsner Blood Bank parked on church grounds to help the 38-year-old Pascagoula resident, who is diagnosed with lupus.

Lupus is a chronic (long-lasting) autoimmune disease in which the immune system, for unknown reasons, becomes hyperactive and attacks normal tissue. This attack results in inflammation and brings about symptoms, according to the Lupus Foundation of America Inc.

Barbara Barlow, Veronica's mother-in-law, said the response was so great for Veronica that the blood bank ran out of bags before the number of donors was exhausted.

"We ended up with 63 pints of blood and we had nine people who could not give," said Barbara Barlow, who co-sponsored the blood drive with husband, retired Jackson County Chancery Judge Glenn Barlow and Veronica's parents, Will and Marie Borden of Pascagoula.

An additional 25 people were in line to donate when the blood bags were depleted.

"That is a marvelous turnout. We have been elated all day," said Barbara Barlow.

Veronica Barlow is a patient at Ochsner's Hospital in New Orleans.

"Veronica is one of the sweetest people you ever want to meet. She works at Singing River Hospital," Barbara Barlow said.

Veronica Barlow was first diagnosed with lupus two years ago. Her condition worsened over the summer months, Barbara Barlow said.

In the past six weeks, Veronica Barlow has had more than 80 pints of blood transfused, according to her uncle, Robert Dubose of Moss Point.

The blood drive was to replenish Ochsner Hospital's blood supply.

Barbara Barlow said to get the blood unit to Pascagoula, a minimum of 50 pints needed to be collected.

"I don't know why they didn't bring more bags than they did. We could have gotten close to 100 pints," said Barbara Barlow.

Stacy Borden, Veronica's brother, said the blood bank underestimated that his sister has a lot of family and friends.

Ricky Maples, 17, of Moss Point wanted to give but was too young. Ricky's mother, Amy Brown, a close friend of the Barlows and a regular blood donor, said "he wanted to give but couldn't."

Potential donors circled the blood mobile until it was their turn to donate.

"She is my niece and I just come to help out," said Dubose.

Giving is typical of Dubose. Several years ago, he donated bone marrow to a cancer victim.

Mary Dubose said a niece, Yolanda Long, who is a registered nurse, stays with Veronica Barlow from Tuesday through Thursday, "giving her personalized, on-hands care."

Borden said he talked to his sister on Saturday.

"She is in great spirits," Borden said.

Judge Barlow said Sunday's turnout was by people who are genuinely concerned and considerate of other people and live good Christian lives.

Judge Barlow said both families were very touched by the love and generosity shown to Veronica.

"I can't say enough about Roger Bradley and his congregation and staff. They have truly exemplified the love of Christ in their lives by this great service they are doing for this family," said Judge Barlow.

Barbara Barlow said when Veronica was first diagnosed, she did well, with the exception of skin rashes that broke out when she was in the sun.

"About three months ago, it really came down on her hard," said Barbara Barlow.

"They ended up air lifting her from Singing River Hospital to Ochsner about the first of August. She has been in and out of intensive care and critical care 90 percent of the time she has been there. She has lupus, multiple autoimmune diseases and a disease called TTP, which is a result of the autoimmune and lupus," said Barbara Barlow.

Veronica also has undergone a plasma exchange, to stop internal bleeding, which required four or five pints of blood during each treatment over a 35-day period.

The bleeding stopped but Veronica Barlow's platelet count will not stay up, said Barbara Barlow.

To counter this, Veronica was placed on a chemotherapy treatment, once a week for four weeks. The treatment has been completed.

"She is somewhat better today (Sunday), but she still has this problem," said Barbara Barlow.

Also, because Veronica has been completely bedridden for two months, she will require therapy once she gets lupus under control.

"The doctors over there tell us that she is a unique case, that they do not see many people with these type of autoimmune disease sot hey have really been studying her case," said Barbara Barlow.

Seeing their mother so ill has been difficult on Veronica's sons, Mario Robinson, 17, and Alfred Robinson, 18. They last saw their mother two weeks ago. Both young men are in school.

"It's pretty hard and real confusing," said Mario, who attends Pascagoula High School.

"A lot of times we are at the house by ourselves so we are having to do everything by ourselves except when Joe (Barlow), our stepdad, is there. It's hard," said Alfred, who attends Mississippi Gulf Coast Community College in Gautier.

"We tell her we love her and are ready for her to come home," said Alfred.

Veronica's brother, Darrell Borden attends Church on the Rock, said Barbara Barlow.

"Someone had suggested to us that we contact this church because they do so much community outreach. Before we could get it out of our mouths, they said yes, we'll do it. We've done other blood drives. We know how to do this. They've been so gracious. A lot of their congregation as they come out of church has signed up to give blood. It has been a marvelous experience for us. It gives me goose bumps to think about how wonderful they have been," said Barbara Barlow.

David Tadlock, associate pastor, said, "It's to help people. That's what a church should be about. God knows people have helped us this last year. This is a great cause for not only people who have need for blood and are suffering but it is a great opportunity for us to minister to people too," said Tadlock.

"Most people were curious as to why we did this during our church services. It allowed people coming to church to give and people who don't come to church to come here and allow us to minister to them. Maybe they sat in the service and were encourage by the message. It was just a win-win situation for us and the family," said Tadlock.

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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #6 on: October 20, 2006, 07:58:07 pm »

Funds, awareness raised during walk-a-thon
Over $6K raised to support those with autoimmune disease

 With over 145 known autoimmune diseases, almost everyone is related to or knows someone who has an autoimmune disease. Jean Shafer, of Brick, walks for her daughter Rebecca, who has ulcerative colitis, during the Autoimmune Information Network's first walk-a-thon at Brick Reservoir.
 
Marlene Stoever, 48, of Brick, sometimes gets looks from fellow shoppers whenever she parks in a handicapped parking spot.

"To look at me, you'd think I was fine," Stoever said Saturday during the Autoimmune Information Network's (AIN) fundraising walk at the Brick Reservoir. "I have scarring on my lungs, and in the middle of winter, it's hard to breathe. It's asthma magnified. I need to park close to the store."

Stoever was one of 47 volunteers who helped 112 walkers complete one to two laps around the reservoir for AIN despite Saturday's iffy weather forecast.

Stoever was diagnosed with scleroderma on her 40th birthday. It's an autoimmune disorder that results in scarred lungs. How did her lungs become scarred? Her body did it to itself. That's what an autoimmune disease is - the body attacking itself.

"We have problems and no one sees it," Stoever said. "You're not going to stop everyone and tell them your story."

Stoever's story is unfortunately familiar for millions with autoimmune disease.

"It took seven years of testing before they figured out I had scleroderma," she said.

Stoever also has two other autoimmune diseases, Raynaud's phenomenon (diagnosed at age 19) and Sjogren's syndrome (diagnosed five years ago). Raynaud's causes fatigue.

"Doctors told me it's in your head - you have Epstein-Barr, you need a hobby," she said. "When women complain of being tired, people assume they're just lazy."

Sjogren's syndrome is also called the "patriotic disease" because it causes a person's extremities to become numb, coloring them red, white or blue.

Stoever attended the walk-a-thon Saturday with her husband, Jim.

"I'm here because two-thirds of my family is affected by [autoimmune disease]," he said.

The Stoevers' son, who is 23 and healthy now, was diagnosed with ulcerative colitis when he was 18.

"He's fine now," Marlene Stoever said. "He took the stress out of his life and got a job he loves ..."

"But he went through hell," Jim Stoever finished.

"It's very difficult," said Pat Daffan, of Hazlet, who walked with and for her daughter, Stephanie Ritacco, of Brick. "One of the biggest problems is that she doesn't look like she's really sick."

Ritacco, 33, has mixed connective tissue disease, a sort of autoimmune disorder hodgepodge of lupus, dermatomyositis and colitis.

"I suffer from severe fatigue, muscle and joint pain, hair loss, skin rashes, so many different symptoms," she said.

"The lupus came on first, and the other two came on together a year later," she said. "So many times you get one and then you get others."

The Stoevers participated in AIN's walk-a-thon, which raised over $6,000 by Monday with donations still coming in, to raise autoimmune awareness and donate money for the only organization that has really helped their family.

"It's really nice with Barb," said Stoever, who is also AIN's vice chairwoman. "If you have a question and she doesn't know the answer, she'll research your question and get back to you with an answer. Other organizations, it was a job for the woman - you'd ask her a question and there was no followup."

"Barb" is Barbara A. Yodice, AIN's executive director. Yodice, who has five autoimmune disorders, works for free, as does every AIN board member.

"The MS [multiple sclerosis] Foundation, the Lupus Foundation, make money for their administrative costs, Barbara didn't have any of that," Marlene said. "I don't have a salary, Barb doesn't. It's all help."

The CEO of the MS Foundation earns $142,790 annually, Yodice said. Yodice and her husband, Keith, who share the executive director's post, earn $0.

"Nobody draws a paycheck," she said.

That's why when autoimmune patients find AIN, they stay.

"It's a wonderful support group," said Dottie Chapin, of Brick.

Chapin has Hoshimoto's thyroiditis, fibromyalgia and rheumatoid arthritis - all autoimmune disorders.

"It's nothing like you've ever been to," Chapin said of AIN's support group meeting that is inclusive of everyone with an autoimmune disease. "It's upbeat. It's great. Other groups, I hate to say it, are like a pity party. Pity-party people come in, but they don't come back. It's all about finding a better way to deal with it. Barbara's a walking book of knowledge that's irreplaceable."

Terry M. DeVogel, Yodice's sister, shares the vice chair post with Stoever.

She said AIN is the only organization that inclusively connects all autoimmune disease patients regardless of their specific disorder.

"There is a national organization that raises money for research, but they don't help anyone," she said. "We're the only ones."

AIN is also the only group that has ever held a fundraiser at the reservoir.

Yodice said she was apprehensive about asking the Brick Township Municipal Utilities Authority (BTMUA) commissioners' permission to use the reservoir, but that it approved the request almost immediately.

BTMUA workers helped AIN throughout the walk-a-thon, which began at 9 a.m. and ended at noon.

"I can't say enough about the people here," she said. "They cut the grass for us, they helped volunteers lugging tables, driving people back and forth. It's great to see everybody pitch in together."

Jimmy Kay, of Toms River, DeVogel's boyfriend, has multiple sclerosis.

"It's all how you look at it. You ever see a kid with cancer? A 10-year-old? I could care less if I walk a little funny," he said. "This is about awareness. You gotta get it out there and people gotta wake up and learn. You can't quit. You think it's you, like you're the only one who's got it. You're not."

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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #7 on: October 21, 2006, 06:31:00 am »

Saturday, October 21, 2006 — Time: 9:21:52 AM EST

   
 Living with lupus: Illness, which takes on many forms, is hard to diagnose and to treat

Cindy Burget of Bellwood, shown working with crafts, remains active despite being diagnosed with lupus 25 years ago.

 
It happened all of a sudden 25 years ago.

One day, Cindy Burget of Bellwood was fine. Not long after, her body was covered in rashes and she couldn’t walk, prompting a rush to a hospital near Nyack, N.Y., where she lived at the time.

After doctors reviewed her case and symptoms, which included sore and achy muscles, she was diagnosed with lupus, a widespread and chronic (lifelong) autoimmune disease that causes the immune system to attack the body’s own tissue and organs, including the joints, kidneys, heart, lungs, brain, blood or skin.

“It took three weeks to get me up and going,” Burget, now 45, said. “I’ve lost three family members from a mix of lupus and other health issues. I have lupus, asthma and maybe fibromyalgia (widespread musculoskeletal pain and fatigue disorder). I’ve been in remission for lupus for three to five years, but my problem is sore and achy muscles. The symptoms haven’t gotten worse.”

Getting up in the morning can be a challenge for some people, battling sleepiness and a desire to lounge in bed. For Burget, the difficulty is more medical, fighting against her fatigue and achy muscles, not to mention the question in the back of her mind if a certain morning will be her last.

“Sometimes I have trouble sleeping and I wonder if I’m going to wake up the next day,” she said. “Just live every day like it’s your last. I have a 17-year-old daughter (Katie), so I want to see her grow up.”

Three or four times a year, Burget sees Dr. Alan Kivitz in Duncasville for a checkup that will determine if she needs medication. While some days are better than others, Burget can’t do things others may take for granted, like going on hikes and riding a bicycle.

Still, she finds joy in painting designs on mailboxes, making wooden crafts and spending time with her daughter and friends at Valley View Nursing Home, Altoona, where she works in the snack shop and at New Life Assembly of God Church in Pinecroft.

“I’ve crawled and pushed through,” she said. “God is my strength. I’m a church girl and I believe in the power of prayer. I believe my lupus is meant to help others deal with it.”

According to the Washington, D.C,-based Lupus Foundation of America Inc., about 1.5 million Americans have the disease. There are several forms of lupus, including discoid (cutaneous), systemic (the type Burget has), drug-induced and overlap syndrome or mixed connective tissue disease.

Achy joints, fevers and rashes — symptoms of lupus — often mimic other less serious illnesses, making a diagnosis difficult, said Duane Peters, vice president for advocacy and communication for the lupus foundation.

“We did a survey in 2000 and more than half said they showed symptoms for four or more years and saw three or more doctors before getting diagnosed,” he said. “Eight out of 10 new cases are of women ages 15 to 44 when serious chronic illnesses are not suspected and lupus (symptoms) in itself comes and goes. It’s not until a doctor is able to put all the pieces together that they’re able to make a diagnosis of lupus.”

Add in not having one diagnostic test for lupus or a known cause, and the situation gets trickier. Instead, diagnoses are usually made by a careful review of a person’s entire medical history and a physical examination, coupled with an analysis of the results obtained in routine laboratory tests and some specialized tests related to immune status. Effective treatment can minimize symptoms, reduce inflammation and maintain normal body functions, Peters said.

“There are therapies in various stages of development and a number offer a better quality of life for people with lupus,” he said. “It’s a serious illness, but the bright side is we’re getting better at diagnosing the disease and treating the disease. We’re optimistic.”

In a perfect world, lupus would be simple to diagnose and people would present the classic findings of lupus — rashes, complaints of intermittent pain, joint inflammation or pain and lab findings with signs of inflammation and anemia. But, the world’s not perfect, leading to a need for more awareness and knowledge in doctors and patients, said Dr. Thomas Burk, an internal medicine physician at Mainline Medical Associates in Altoona.

“The key (for doctors) is maintaining a relationship with the patient,” he said. “From the doctors point, keep an open mind about connective tissue diseases like lupus. Rapid office visits make it easier to treat the prevailing symptoms, but that is not conducive to diagnosing a chronic disease like lupus.”

Over the past 10 years, Burk diagnosed no more than 25 cases of lupus in his patients. But in the diagnoses, he said a major piece of the puzzle was a patient’s medical history.

“They (patients) may not remember that five years ago their knees swelled and two years later they had a rash,” he said. “The history helps you to think about lupus.”

Different forms of lupus

 Discoid (cutaneous) lupus is always limited to the skin and is identified by a rash that may appear on the face, neck and scalp. It accounts for approximately 10 percent of all cases.

 Systemic lupus is usually more severe than discoid lupus and can affect the skin, joints and almost any organ or system in the body. Approximately 70 percent of lupus cases are systemic. In about half of these cases, a major organ will be affected.

 Drug-induced lupus occurs after the use of certain prescribed drugs. The symptoms of drug-induced lupus are similar to systemic lupus. The drugs most commonly connected with this type of lupus are hydralazine (used to treat high blood pressure or hypertension) and procainamide (used to treat irregular heart rhythms). The percentage of individuals using these drugs who develop drug-induced lupus is extremely small and the symptoms usually fade when the medications are discontinued.

 In approximately 10 percent of all lupus cases, individuals will have symptoms and signs of more than one connective tissue disease, including lupus. A physician may use the term “overlap syndrome” or “mixed connective tissue disease” to describe the illness.

~Causes of lupus

** Lupus is not infectious, rare or cancerous.

**While scientists believe there is a genetic disposition to the disease, it is known that environmental factors also play a role in triggering the disease.

**Some of the factors that may trigger lupus include infections, antibiotics, ultraviolet light, extreme stress, certain drugs and hormones.
 

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« Reply #8 on: October 21, 2006, 06:54:04 am »

Education, interrupted

They sparred verbally-the slender mom with a brunette, pixie hairdo, and the third-grader with bright blue eyes (from her grandfather), long, blonde locks and the pacing of a honey bee.

“We are very close. We fight a lot. I think we argue a lot because we're a lot alike. She's the one who always starts the fight-we fight over cleaning up my stuff,” Grace said.

“And I was the meanest mom in the world because I told her to clean up her room,” laughed her mom, Shelley Andersen. “Grace is a leader and I wasn't really a leader. She is outgoing and outspoken, but sometimes I don't know how she feels about things.”

However, the pair, along with dad Scott, have been through some very tough, very scary times together.

 
 
 
 
In fact, having Grace was against doctors' orders.

Though Grace only had to pick up her room, Shelley had to pick up her life in the mid 1990s, after an assault by Lupus. A $2,000 scholarship from the PEO Sorority's Program for Continuing Education is helping her pick up the pieces.

Lupus is a chronic inflammatory disease that can affect various parts of the body-especially the skin, joints, blood and kidneys. It is an auto immune disease in which the body loses its ability to tell the difference between foreign substances and its own cells and issues.

Scott and Shelley had moved down to Champaign. She had completed her general education college credits and was enrolled at Parkland College. After working as a dental assistant for several years, Shelley had decided to become a dental hygienist.

She was then struck by Lupus just before the semester started.

“I hadn't been diagnosed. It was really scary - I had no energy. I could sleep for days and I lost a lot of weight, had tingling in my limbs, a bad headache. It felt like getting the flu but never getting better, and I had cognitive impairment, big time,” Shelly said.

As she tried to cope with the disease, Shelley was helped by “a wonderful doctor at the University of Chicago.”

She also has joint pain, is on prednisone, and takes a low-dose “chemo drug.”

During the whole experience, the doctors agreed on one thing: don't try to carry a baby.

But that's what Shelley really wanted, so she took a chance, became pregnant and got a nice surprise.

“During the pregnancy, I was in total remission,” she said. “I never felt as good as when I was carrying Grace. Some people with Lupus have a flare-up. Pregnancy can make it better or worse-there are different degrees. If affects African Americans and Asians more. Some people have died from the disease.”

Then the remission was over “After Grace was born, I was very sick and in the hospital for a week. I had seizures.”

Eventually, the little family came back to Genoa, where Shelley grew up. They are in the process of remodeling their Victorian home. Lupus has been in remission and Shelly hopes it will stay that way, though losing her father earlier this summer didn't help, and stress is an enemy for both Lupus and fibromyalgia, for which she's been diagnosed.

“My dad was very protective of me, because I was the youngest of four children.” she said.

Younger college students often don't have a clue about what they want to do when they grow up. Grown-ups don't have the luxury of such indecision.

Shelley's goal at Kishwaukee College is very specific. She wants to complete a certificate program for Medical Transcription, and then complete the program for Medical Billing and Coding.

The PEO scholarship, geared for women whose education has been interrupted, is making that possible.

“I want to be able to work at home and still be available to my daughter,” Shelley said.

Another reason is to give Scott a chance to change occupations. He finished high school and was lucky enough “to fall into a machinist position,” he said. He's done that work for 17 years. Now, he would real like to teach-somewhere between middle school and junior college.
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
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« Reply #9 on: October 21, 2006, 07:01:23 am »

Gift aids Georgians with lupus


It wasn't like her not to be in touch.

Tomica Gill and her sister, Darcel, talked almost daily. If they didn't talk on the telephone, they e-mailed.

And when Tomica wasn't e-mailing her sister, she was sending messages to nieces and nephews.

That's why it was odd when she didn't respond to any of them.

After three days of silence, of not one message, after three days of their phone messages being herded into voice mail, Darcel began to worry. She called a cousin and asked her to check on Tomica.

She found her lying in bed. No one knows for sure when she took her last breath, but the 32-year-old was gone — dead from a heart attack.

For most of her life, Tomica had been ill, said her sister, Darcel Gill-Knowles, in a telephone interview from her home in Inkster, Mich.

She was 5 when doctors diagnosed her with lupus, a debilitating autoimmune disease that for unknown reasons attacks the body's own tissue and organs. Five years old.

Darcel remembers the moment doctors gathered her family in the hospital room and broke the news. They told them Tomica wouldn't live past 10.

Yes, I will, Tomica told them. I have things to do.

Sure enough, Tomica always had something to do. Even when she was sick, when the disease put her in the hospital for the umpteenth time, when the medication caused huge weight fluctuations and the children teased her for being overweight, she got things done.

When it looked like she couldn't, Tomica figured out a way.

Once during final exams in high school, her hands and joints were so swollen it was impossible to write. Tomica simply used her toes.

Having lupus, she told Darcel once, was like having a battlefield on the inside.

That was true for Tomica and it was true for her family. When Tomica went into the hospital, and she went a lot, their lives stopped. They hurt too.

"Lupus is the hardest thing in life you'll ever deal with," said Darcel. "If we had a cold, she caught a cold and went into the hospital."

Tomica graduated from high school in 1991 and then from West Virginia State.

By 2000, the Michigan winters and arthritis were more than she could take. Doctors suggested a warmer climate might be easier on her.

Tomica moved to Atlanta. She was the student coordinator at the Art Institute of Atlanta. In her spare time, she volunteered in the community and was active with her sorority, Delta Sigma Theta.

In May she graduated from Argosy University with a master's degree in psychology.

She was planning to pursue a doctorate. When her cousin found her July 31, the application was still on the dining room table at her Dunwoody apartment. A list of unanswered e-mails blinked from her computer screen.

As their mother entertained the grandchildren, Darcel packed her sister's belongings in preparation for her final trip back to Inkster.

That's when she found the $50,000 insurance policy.

The family could have used the money. It was the one thing they never had enough of. But they understood why Tomica made the Lupus Foundation of America the sole beneficiary. "She wanted a cure really, really bad," Darcel said.

The enormity of Tomica's gift is "rare and was incredibly well-timed," said Maria Myler, head of the foundation's Atlanta chapter.

Not only will the donation help reach out to the 55,000 other Georgians suffering from lupus, she said, it will help raise awareness.

Darcel said her sister, who would've celebrated her birthday today, never shared her plans with them because she never talked about death.

She was always too busy living.
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« Reply #10 on: October 21, 2006, 07:10:34 am »

Taking charge of her health


HOW I DID IT

Name: Bernetta Smith

Age: 28

Home: University City

Occupation: Computer assistant at Riverview Gardens High School

What she did: With the help of diet, exercise and medicine, she has
controlled her lupus and subsequent kidney problems.

Quotable: "I was scared because I knew about it, but I didn't know a
lot about it."



Busy mom Bernetta Smith tried a diet, as well as exercise, with new medicine to
help control her lupus and kidney problems.

Shortly after the birth of her daughter seven years ago, Bernetta Smith started
experiencing the first signs of lupus.

She thought it was just part of being a new mom.

"I was always tired, and I hurt, but I thought it was just because I had two
kids, and I was a single mom and going to school," she says. "I thought that's
just how it was."

She dealt with exhaustion and joint pain for about five years.

More than two years ago, she got in the shower and clumps of hair started
falling out.

"I had been shedding for a while, but I figured it was just because I used too
much hair dye," Smith says with a laugh. "But that day it came out in clumps; I
knew something wasn't right."

She was left with patches of baldness around the sides and back of her head.

She called her mom, who took her to the hospital.

Diagnosis

"I was scared," she says. "I thought 'Oh my god, I think I'm dying.'" At the
emergency room in Missouri Baptist Medical Center, doctors ran test after test
on her.

They sent her home and sent the results to her regular doctor. A week later she
got the diagnosis: systemic lupus, a chronic autoimmune disease in which the
immune system, for unknown reasons, becomes hyperactive and attacks normal
tissue. Symptoms can range from skin rashes and hair loss to seizures and
abnormal blood clotting.

Lupus can occur at any age, in either sex and to people of any race. Nine out
of 10 people with lupus are women, however, and African-American women have a
three times higher incidence than Caucasian women, according to the Lupus
Foundation of America.

An acquaintance of Smith's had recently died from complications of lupus. In
addition, she has a cousin with lupus and had seen everything the cousin went
through: blood clots in her heart and lungs, and extended hospital stays.

"I always felt sorry for her, and I thought, 'Now I'm going to be that person
that everyone feels sorry for.' I was scared because I knew about it, but I
didn't know a lot about it."

She went on medication to help her control the lupus, and all seemed to be
going well, but at one of the many, many doctor visits she found that something
was wrong with her kidneys. After a kidney biopsy about a year ago, she learned
that her kidneys were failing.

"It really didn't scare me like I thought it would. I thought we'd figure it
out as we went along."

She had to start chemotherapy drugs, a treatment for noncancerous kidney
problems, right after that. First in a pill, then in an IV. The chemo made her
sick, and she hated that her son, 13-year-old Demonte, and daughter, 7-year-old
Yasmine, had to see her go through that. Her fiance, Malik Campbell, watched,
too.

"And my fiance was so good about helping out, but they couldn't help feeling a
little helpless," she said.

Unfortunately, those chemo medications weren't helping her kidneys. In
addition, they were making her gain weight. She had gained about 50 pounds in a
matter of months, mainly because of water retention.

"That was the depressing part," she says. "That bothered me more than anything
else. By the end of February (after about two months on the drugs), I couldn't
fit into any of my clothes. And I didn't get to get fat having fun, eating
cookies and cake. I just got fat."

Another effect of the drugs was infertility. The doctors told her she probably
wouldn't be able to have any more children.

"But that was OK with me at the time. I had two. My fiance was OK with it, too."

Making changes

Last spring, Smith decided it was time to take charge. She had been reading
about natural herbal therapy and thought, "If it came from nature, it wouldn't
hurt to try."

She stopped drinking sodas and stopped eating candy, white bread, processed
foods and fried foods. She bought a juicer to juice her own fruits and
vegetables and switched to soy milk.

Her primary care physician had suggested this type of natural diet might help
to relieve some of the swelling.

"I thought, 'Why not try it?' I really believe that cutting out all of the salt
helped the swelling."

As the swelling went down, she began to exercise more. She walked while her
daughter rode her bike in the neighborhood.

"At first it was really hard with all that extra weight on me still," she says.
"I was wobbling around like I was nine months pregnant. I said I see why bigger
people have such a hard time exercising."

At night, she'd try to stretch out her muscles.

Around the same time, she tried a new chemotherapy drug.

Success

Smith believes the diet, exercise and drug treatments combined to help with the
kidney problems and the lupus.

The swelling has disappeared, and she has returned to her normal size. She has
more energy. Her joints feel better than they have in years and, despite what
the doctors told her about infertility, she's pregnant.

"I call this my miracle baby," she says. "It wasn't supposed to happen, but it
did."

Her pregnancy is considered high-risk, but at about four months along, she and
the baby are doing fine.

"My fiance was worried that everything wouldn't be OK, but the doctors say
everything is fine. I'm so optimistic about this. I think every day, things are
going to be just fine. This baby wants to be here."

Being pregnant, she can't continue the chemotherapy drug treatments, but so far
that hasn't affected her.

"I've had no flare-ups, and the numbers for my kidneys are good. It couldn't
get any better to me."

Now Smith is trying to finish her communications degree from Lindenwood
University. All that remains is her senior paper.

She is also preparing to participate for the third year in the Walk for Lupus
Now event. "It's important to make people aware of what lupus is and to raise
money for it," she says.

Her struggles the past couple of years have taught her a few things. "What I've
learned through this is to know when to pull back. I wanted to prove lupus
wasn't going to affect me. I just wanted to prove I could do it all - work,
school, raising kids, going to the doctors. But I realized that it's OK to say
I have to leave this for now. I can't have so much on my plate, and lupus does
take up a large part of that plate."

For now, she's concentrating on her family. "I can't wait to tell the baby all
of this, about this miracle."

She also wants to set an example for her kids.

"My son tells me every day, 'My mom's so strong,'" she says. "Maybe I can be
their role model. They don't need to look to Beyonce or anybody else. Look at
Mommy for inspiration."
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« Reply #11 on: October 21, 2006, 10:18:18 am »

**See the info in RED below.. She had Lupus made her more prone to fighting the infection.
Dirty foot spas a danger in pedicures
California and federal health officials move to protect consumers from aggressive bacterial infections at nail salons

State and federal regulators and health officials are moving to protect salon customers from dirty footbaths that can harbor dangerous bacteria, which a lawsuit alleges led to the death of a Sunnyvale woman who became infected after a whirlpool pedicure.

Scores of other salon customers have been infected in outbreaks in Northern California and elsewhere, state consumer officials say.

The dead woman's mother last week sued a Mountain View nail salon that she blames for her daughter's year-long battle against an infection associated with the aggressive bacteria transmittable through foot spas. The lawsuit is the first of its kind in the state.

A state inspection of Top Hair and Nails on Wednesday found nearly a dozen violations, ranging from improper disinfection to "dirty foot spa chairs." The state Board of Barbering and Cosmetology, which regulates the salon industry, also launched an inquiry on Wednesday into whether the salon has been properly licensed.

San Jose attorney Anne Miller, who represents Top Hair and Nails, said the salon denies any wrongdoing. "They have never received a complaint about their salon from any other customers."

The salon also disputes the findings of Wednesday's state inspection, Miller said. "Top Hair & Nail endeavors to follow all mandatory cleaning procedures for the salon."

In an indication of the increasing attention being paid to an aggressive and disfiguring strain of bacteria that has struck nail salons in the last six years, a hearing will be held today on emergency legislation by Leland Yee, D-San Francisco. The bill seeks to impose tighter controls and tougher penalties on salons that violate state regulations.

States around the country have started adopting stricter regulations on cleaning whirlpool pedicure footbaths after a death in Texas and outbreaks of mycobacteria and staph infections in numerous other states. In California, health officials over the last two years have investigated outbreaks in Santa Cruz, Santa Clara and Contra Costa counties.

This fall, the federal Environmental Protection Agency, with the Centers for Disease Control, plans to issue a set of recommendations to consumers as well as salon owners and operators. The EPA regulates disinfectants.

The recommendations will suggest ways "to prevent pedicure foot spa-associated nail infections,'' said EPA spokesperson Enesta Jones.

Diana Mears of Iowa filed the wrongful death lawsuit on Aug. 3 in Santa Clara County Superior Court on behalf of her daughter, Jessica. The suit says Top Hair and Nails failed to follow basic hygiene practices when its employees gave Jessica Mears a pedicure on Nov. 24, 2004.

The result, according to the suit, was an ugly 4-by-6-inch lesion on her left calf, diagnosed as a mycobacterium fortuitum infection.

Mears, who worked in biotech as an executive assistant, died on June 20 in El Camino Hospital in Mountain View. She was 43.

Mears had visited the salon as a birthday treat, said her cousin, Geri Nave. "If she had three pedicures in a year, it was a lot,'' Nave said.

About a week after the salon visit, Mears noticed a bump on her leg, said family attorney Robert Bohn Jr.

What she initially took for a bug bite grew and grew, Bohn said. Antibiotics didn't cure the infection, and neither did surgical removal of the dying flesh, which was necessary to prevent gangrene.

Salon attorney Miller said that Jessica Mears had a long and complicated medical history with lupus, a chronic disease that impairs the immune system.

"She had been hospitalized on numerous occasions prior to the pedicure for treatment of lupus and other debilitating diseases," Miller said. "She was quite ill for many years. Although her death is unfortunate, there is simply no known medical evidence that the pedicure she received at my clients' salon played any role in her death."

Bohn acknowledged that the lupus made Jessica Mears more susceptible to infections.

"But her health didn't take a major dive until she had this infection on her leg," Bohn said.


The Santa Clara County Coroner never performed an autopsy, according to Bohn, and Jessica Mears' remains have been sent to Texas for burial by her family.

Diana Mears, the dead woman's mother, could not be reached for comment.

Top Hair and Nails -- tucked in a pink stucco strip mall on Middlefield Road that also houses a coffee shop and a dentist's office -- was open for business Wednesday.

Only one customer -- Ronald White of San Francisco -- was in the Mountain View salon during the lunch hour.

"I've been coming here for four years, and I've never had a problem," said White, 48, as he reclined during a pedicure. "This is a very clean shop."

White, who commutes to San Jose for work, said he heard about the lawsuit on a radio newscast and came in Wednesday to show support for the salon owners.

"I believe in Vanessa," White said, referring to Trang Van, who goes by Vanessa and owns the salon with her husband, Than Phan.

Looking at a row of empty hair dresser chairs and pedicure recliners, Trang Van said business had slacked off since news of the lawsuit emerged.

"That's why today it's slow," she said. "It hurts my business because people are scared." Some customers had called to voice support and promised to continue their patronage, Trang Van said.

"They said, 'Don't worry,' " Trang Van said.

In recent years, three bacterial outbreaks were reported to the state Board of Barbering and Cosmetology, board spokesman Kevin Flanagan said.

The first occurred in 2000 in Santa Cruz County. Santa Clara County was hit in 2004, and in 2005, Contra Costa County experienced an outbreak.

The Santa Clara County incidents involved 143 customers and 33 salons. Top Hair and Nails was not among those salons.

After the 2000 outbreak, the national Centers for Disease Control and Prevention swabbed 30 footbaths in 18 nail salons from five California counties and found mycobacteria in 97 percent of them.

"The 2000 outbreak might have been a warning of what can happen again if this emerging infection is not adequately addressed," the report said.

The state Board of Barbering and Cosmetology, which licenses 290,000 manicurists and cosmetologists in California, heeded that warning and adopted new regulations in May 2001, requiring nail salons to follow more specific cleaning and disinfection procedures.

In 2005, the board created a task force that developed additional foot spa safety regulations -- complete with more detailed instructions on how to clean the spas -- which recently were approved by the board but have not been implemented. They have yet to make their way through public hearings and a state approval process, which could take a year, Flanagan said.

The new regulations would increase fines to $500 per foot spa chair that isn't clean enough, require remedial training of staff and allow the board to put a licensee on probation for up to a year if found in violation of health laws.

While the Mears case is the first known death blamed on a pedicure in California, it's not the first in the nation. Texan Kimberly Kay Jackson, whose heel allegedly was cut with a pumice stone during a pedicure, developed a staph infection wound that wouldn't heal. She died in February of a heart attack triggered by staph.

Meanwhile, consumers should learn how to protect themselves, said Flanagan of the barbering and cosmetology board.

"It's a lot like going to a restaurant," he said. "If the place looks dirty, get out."

Thursday's hearing will cover a legislative proposal to establish minimum safety standards for pedicure equipment and accountability procedures.

"This bill is a good first step, but the one piece of the bill that we wish was in it was a warning to consumers," said Adam Keigwin, a spokesman for Yee.

"If a salon is found in violation, we think a sign should be posted by the door. Consumers should not assume that just because they may be paying $100 for their pedicure that it is safe. And they should not assume that just because a place charges less, that it is not safe. Most salons are doing the right thing. But some, both high-priced and less expensive ones, are not.''



More information
For information about a particular salon, you can call the state Board of Barbering and Cosmetology at (800) 952-5210 or visit the board's Web site at www.barbercosmo.ca.gov.

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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
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« Reply #12 on: October 26, 2006, 08:57:09 pm »


Lupus diagnosis a relief, of sorts
After years of strange symptoms, woman glad to know why

Rachelle Weston and her dog, Max, enjoy a quiet moment at their Louise Road home. Weston, a mother of four, has lupus, but she controls the auto-immune disease's debilitating effects with medication. She also uses chiropractic care, vitamin supplementation and nutritional guidance to keep her disease in check.


Rachelle Weston was the toughest aerobics instructor at Houston Racquet Club. Even men high-fived each other for making it through her class.

So how is it possible that Weston had a debilitating, life-threatening disease, even as she taught aerobics classes? How can it be that now, at age 47, she can walk only short distances before paralysis takes over the left side of her body?

 
"Going to the mall is like running a marathon for me, and even when I do, I pay for it for several days afterward," Weston says.

The "pay for it" period involves aches throughout every muscle and joint in her body, intense fatigue, nausea and low-grade fever, similar to flu symptoms.

The mystery disease that allowed Weston to be intensely active for years but keeps her on a short leash today?

Lupus.

Lupus is an auto-immune disorder in which the immune system attacks the body rather than foreign invaders. Inflammation, pain, swollen joints, prolonged fatigue and skin rashes are the most common symptoms. Some people also have kidney problems, painful breathing, sun sensitivity, hair loss or seizures.

Knowing the grim possibilities of the disease, Weston's reaction when she got her diagnosis seemed strange.

"I said, 'They think I have lupus,'" Weston says. "My friend said, 'Rachelle, why are you smiling?' I said, 'Because if I died today, I know I'm not crazy.'"

Dealing with doctors
One of the biggest frustrations for many people who have lupus is difficulty in getting a diagnosis. People spend months, even years, going to different doctors, never getting an answer to explain their strange, seemingly unrelated symptoms.

"They kept telling me I have too many symptoms," Weston says.

In Clarksville, Nashville and Cookeville, Weston saw 26 doctors before she got an answer. Between the births of her older children, Alexandria, 21, and Ian, 17, and the births of her younger children, Christin, 8, and Cole, 7, Weston had three miscarriages. Another son, Noah, who would be 13 now, had one of Vanderbilt Medical Center's first neonatal surgeries to try to save him, but he died the same day he was born.

Knowing the traumas she had endured, numerous doctors told Weston, "Your baby died. You're sad," and handed her a prescription for Prozac. Weston refused the prescriptions, knowing her symptoms were not those of depression.

"Don't give up. Persevere," Weston says. "Don't listen to people who want to tell you nothing's wrong. You will go through many doctors. Find someone who will listen to you. They're hard to find."

Weston has a multitude of horror stories about doctors who wouldn't listen, told her it was all in her head, or even yelled at her and berated her. Most common was being told, "I can't help you. Find another doctor."

"You get so defeated when doctor after doctor tells you, 'I don't know,'" Weston says. "My husband, bless his heart, he would be so frustrated because we'd go from doctor to doctor and literally be turned away."

'The gift in the letter'
Finally, an unusual stroke of luck pointed Weston to the true cause of her problems. After her father died four years ago, Weston was cleaning out his bookshelf, when a letter fell out of a book.

She read the letter, written in 1991 by a young woman, Teri Ghent. In the letter, Ghent urged Weston's older sister, Nannette Mishler, to go to Mayo Clinic to have her health problems evaluated. Ghent suspected Mishler may have lupus.

"She said, 'lupus.' That was the gift in the letter," Weston says.

Weston asked her mother about the letter and Ghent, but her mother told her the disease had killed Ghent a few years earlier, when she was in her mid-30s. Saddened but undeterred, Weston called the Lupus Foundation of America, Mid-South Chapter. Sherry Hammond, president and CEO of the organization, answered the phone.

"She listened and she listened, and she believed me!" Weston says. "That was huge. She believed me."

Hammond suggested some doctors Weston might want to see, and she chose Dr. Winn Chatham at the University of Alabama. That's where she finally got the diagnosis that made her smile.

Weston's care is now managed by Dr. Gary Cole in Clarksville, with annual visits to Chatham in Alabama. She also uses chiropractic care, vitamin supplementation and nutritional guidance provided by Dr. Kenneth Gilman to keep her disease in check.

Keeping disease's effects in check
The problem with lupus, however, is there's no sure way to keep it in check.

"I woke up this morning, and I didn't know, is it going to be a good day or a bad day?" Weston says. "You can have years where you're fine, and years where it just won't leave you."

Weston has been so weakened by the disease that she was unable to leave her upstairs bedroom for days. Other times, she's much closer to fine, but still unable to walk very far or spend time in the sun without suffering the consequences. She says her family keeps her going.

"I have to raise these kids," she says. "I can't just lay down and die."

Weston had to retire from nine years as director of Cumberland Presbyterian Church's preschool, due in part to her need to avoid exposure to germs. Like sunlight, exercise, stress or hormonal changes, infections can lead to an attack of lupus, called a flare.

Further, Weston uses immune-suppressing steroids, which make her even more susceptible to illness, to minimize auto-immune attacks. She says she is thankful to God that her diagnosis was a long time coming. Its delay allowed her to have her children without doctors telling her she couldn't or shouldn't have them. But Weston also remembers all too well the letdown of having yet another doctor tell her it was all in her head.

"Why did it take a lifetime to be diagnosed?" Weston says. "Lupus is not on the forefront. How many people are undiagnosed and die with it?"

Weston is concerned for people who don't have the sick leave, insurance, babysitters or family support necessary to go to dozens of doctors before they get an answer.
 

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« Reply #13 on: October 26, 2006, 09:13:45 pm »

Joan Steitz: Her work may lead to progress in diseases like lupus
Oct. 26, 2006. 11:25 AM



A summer job in the Minnesota laboratory of cell biologist Joseph Gall rerouted 2006 Gairdner Award winner Joan Steitz from medical school to the lab.

After that fateful summer, Steitz decided to forgo her acceptance into Harvard University's medical school and, at Gall's urging, took a spot instead in Harvard's graduate program in biochemistry and molecular biology. She never looked back.

"All of a sudden I got completely turned on," she told the Star in an April interview. "It really, really got me and I couldn't believe how much fun it was making discoveries."

A top scientist in her own right, Steitz is best known for discovering the function of small nuclear ribonucleoproteins (snRNPs), which could lead to breakthroughs in auto-immune diseases like lupus.

In the 1970s, scientists realized one of the forms of ribonucleic acid (RNA) — called pre-messenger RNA — contains stretches of nonsense called introns that interrupt the coding parts of genes. Messenger RNA contains the "recipes" for making proteins, critical for carrying out all of the body's most basic biological processes.

Steitz, who works at the Howard Hughes Medical Institute and the Boyer Center for Molecular Medicine at Yale University, discovered that snRNPs take out the introns from the pre-messenger RNA and put back together the correct or good parts, which are then made into proteins.
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« Reply #14 on: October 31, 2006, 10:59:47 am »

Making strides for a cure
Walkers hit the streets to shed light on lupus
Adam Draper and his girlfriend, Shannon Brundage, participate in the Walk-A-Block lupus event in Halifax on Sunday. Brundage, 26, was diagnosed with the auto-immune disease when she was 19.

Amid a crowd of about 40 people, Shannon Brundage and her boyfriend Adam Draper walked hand in hand along a Halifax sidewalk on Sunday to help raise awareness and money to find a cure for lupus.

Ms. Brundage, 26, was diagnosed with the auto-immune disease when she was 19, although she suspects she’d been suffering undiagnosed for about a year before that.

She said doctors first thought she had rheumatoid arthritis.

"It mimics a lot of other diseases," which makes it difficult to diagnose, the Halifax woman explained.

"Each person with lupus can show any number of different symptoms, it’s not just a set list of things that could be wrong with you."

Ms. Brundage is often plagued by stiff and painful joints and fatigue. She said she also has to avoid too much sunshine and cold weather.

She braved a little of both on Sunday for the Walk-A-Block event, an annual fundraiser organized by Lupus Canada.

This is the first time a walk has taken place in Halifax.

Brian Gunn, whose mother was diagnosed with lupus in the late 1980s, said he’s been involved with the Nova Scotia Lupus Society for several years and decided "to take the bull by the horns" and organize the Halifax event.

In just three weeks he managed to drum up lots of local support, putting the society well on its way to reaching a target of $2,000.

"The response has been great," he said Sunday, looking around at the dozens of participants chatting at St. Lawrence Parish Centre in Fairview.

Starting at the parish centre, the group made the short trek along Dutch Village Road to Deal Street, before looping back to St. Lawrence.

"It’s only a short walk," Mr. Gunn acknowledged, "but what counts for us is getting people out and exposing lupus to the public."

More common than multiple sclerosis, leukemia or muscular dystrophy, lupus affects at least one in every 2,000 Atlantic Canadians, most often women.

"You can’t tell by looking at someone that they have lupus," Mr. Draper said, using his girlfriend as an example. "I mean, Shannon looks good some days but feels terrible."

"And some days I look terrible and feel terrible," Ms. Brundage added, laughing. Despite the pain, she said, it felt good to see so many people turn out for Sunday’s event.

"That’s really the bigger goal here rather than fundraising, to throw some light on it and tell people what it’s all about," she said.
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« Reply #15 on: November 01, 2006, 09:42:20 am »

Mystery disease: Little known about cause, cures for lupus


 Helen Lamb peers out the window above her sink at her flourishing backyard garden. Potted plants hang from awnings and a large banana tree sprouts from the ground.

There was a time when Lamb would have been outside, pulling weeds, patting down potting soil or carefully pruning plants.

Today, a glimpse through the kitchen window is as close as she gets.

In 1993, Lamb was diagnosed with lupus, an incurable, autoimmune disorder that causes joint pain and extreme fatigue. The disease robbed her of energy, and she was forced to abandon her successful office cleaning business and go on disability.

"If I was the crying type I would have cried," Helen said about hearing the diagnosis. "I was in shock and disbelief. It's hard to imagine you had something and you didn't know it."

Lamb, 65, is among 1 million Americans living with lupus. More than 16,000 new cases are diagnosed each year, according to the Lupus Foundation of America.

Not much is known about the disease, but health officials hope to change that each October, which is Lupus Awareness Month.

"It's one of those diseases that doesn't have a good press agent," said Dr. James "Brownie" McLeod of the Arthur J. Robinson Medical Clinic. "If you don't have a friend or family member ... rarely do you see or hear much about it."

Lupus is a chronic inflammatory disease that affects various body parts, particularly the skin, joints, blood and kidneys. The immune system of a lupus sufferer can't differentiate between foreign substances and its own cells and tissues. The immune system therefore makes antibodies against itself.

"It's an army with no leader," Lamb said. "It can do anything it wants to. It just picks a spot and goes."

The body of research on lupus is slim. There is no lupus gene, and only about 10 percent of lupus sufferers have similarly afflicted family members.

McLeod sees lupus cases that range from mild to debilitating. Symptoms include achy joints, fevers of more than 100 degrees, arthritis and prolonged and extreme fatigue.

There are no definite causes of lupus, McLeod said, but certain patients appear to have dietary triggers. Blacks and American Indians are the most at-risk.

McLeod said that lupus is a difficult disease to live with because it's chronic, but doesn't always manifest itself.

"It waxes and wanes and people are not as sensitive to diseases that come and go," McLeod said.

At one point, Lamb was sleeping 22 hours a day.

"It makes you exhausted, totally, totally exhausted," she said. "It was my roughest time."

Lamb's condition has steadied since her initial diagnosis, but she's had to modify her lifestyle considerably. She avoids the sun and stress, and she cannot drive or go shopping. Most days she can do little more than vacuum a few rooms in her house.

"I'm very, very limited," she said. "You just get so tired. You have to lead a kind of relaxed lifestyle."

Planning trips to someplace as simple as a neighborhood yard sale is difficult because she can't predict if she'll be able to go.

"Today I just sat on the couch," she said. "Sometimes it takes me two weeks to get caught up on the ironing."

Lamb takes about six pills in the morning and various pain pills throughout the day.

"Sometimes getting the medication right takes a while," she said. "If the pain is too bad, I have to go into the (doctor's) office for injections."

Lamb said the lack of information surrounding the disease makes it difficult for sufferers.

"In the beginning, people complain they're tired and people say they're lazy," she said. "I was lucky, my doctor believed me."

Lamb said it is important that family and friends understand a person's limitations. Her husband, James Hubert, helps with the gardening and vacuuming. Her five children, Clayton, Glenn, Judy, Paul and Charlene, researched the disease and participate in charity walks that raise money and awareness.

"My family was in a state of shock when they found out," she said. "Then they all pitched in and compared notes. They were very supportive, and we've learned a lot."

James Hubert said he didn't know much about the disease before he met Helen, but he is glad to help her however he can.

"It only bothers me because it bothers her," he said. "I help her out with anything she needs."

That includes the medical bills, which tend to get pricey because there is a lot of trial and error, he said.

"They give you something, and they don't even know if it works," he said.

Lamb said that dealing with the mental side of lupus is almost as hard as the physical suffering. Lupus sufferers have to come to terms with the fact that they can't do all the things they used to do.

"It's hard to admit I have this," she said. "If I could get up every time the preacher said to, I would love it.

"I would love to take care of my garden," she said. "Now I have a girl that does it."

Lamb is determined not to let lupus run her life. She enjoys crocheting, needlepoint and reading.

Most of all, she wants to spread awareness about lupus, and said she is always willing to speak to someone about her condition.

"There's got to be something I can do other than hang out and be sick," she said.

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« Reply #16 on: November 02, 2006, 06:59:24 pm »

November 3, 2006 - Achy joints, skin rashes, a fever and fatigue. Those are all symptoms that could be a simple virus, or suggest something more serious - an auto-immune disease called Lupus. It generally targets young women, but men are also vulnerable.

Curt Nugent is a 21-year-old college junior studying to become a teacher. But in his freshman year, sickness nearly derailed his plans.

Nugent says he "started getting joint pain in my elbows and hands, knees, bottom of my feet, and I really thought nothing of it 'cause I was active playing basketball a lot."

Curt ignored his worsening symptoms for four months, until he was hospitalized and diagnosed with the mysterious auto-immune disease Lupus.

"For reasons we don't fully understand in auto-immune diseases, the immune system begins to target itself and in lupus that attack can be on any or all of the internal organs," said Dr. Susan Manzi.

Lupus has no cure and it is not easy to diagnose. There are no definitive tests and its symptoms mimic many other illnesses. Plus curt is not the usual lupus patient.

Dr. Manzi says, "It is a disease that primarily targets women. So for every ten women, one man will develop Lupus."

Another challenge is finding effective treatment for Lupus.

"There have been no new drugs approved for Lupus in 40 years and we borrow all of our medications from other subspecialists."

A chemotherapy drug and a drug transplant surgeons use to suppress the immune system helped slowly get Curt's Lupus under control. Now he tells people about the disorder every chance he gets.

"Make them aware of it, to explain, like, the symptoms of it. So in case they have it, they wouldn't take it lightly like I did."

Curt's living proof that Lupus can affect anyone.

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« Reply #17 on: November 06, 2006, 09:11:25 am »


Two years ago, it seemed that life for Marie Nadur was going down hill – and fast.

Her body was bloated, her face and ankles were swollen, and her bones were aching.

And, the worst part is that she didn't know what was happening.

She was worried.

"Nobody knew what was going on with me. Doctors couldn't tell me what was wrong," said this 46-year-old sales executive at Digicel.

It was only when she made a trip to Miami last July that she was diagnosed with lupus. This took her by total surprise.

It wasn't a word she was familiar with, nor was it an illness of which she was particularly knowledgeable.

"I had heard about lupus, but I didn't really know a lot about it," she said, while speaking to the WEEKEND NATION on Tuesday morning at her Hastings, Christ Church office.

Surprisingly, Marie still doesn't want to know too much about the illness that has her grimmacing and crying out in pain.

"That's just how I am. I don't want to know too much about lupus. I know enough about it. I know it can attack your organs and shut them down. I know it can kill. I know I can die anytime."

Marie doesn't even know how bad her lupus really is. She admitted that thankfully it hasn't started to affect her organs. She continues to pray that it doesn't.

Her smile never vanishes.

Marie said she left all the research on lupus via brochures and the Internet to her daughter, son and other relatives.

After being diagnosed, Marie was in a deep depression and felt she couldn't find her way out of the dark hole that consumed her entire being.

She had given up.

After hearing the grim news, she couldn't go into the sun, she wasn't socialising, her face was swelling, her body was swelling, she was taking medication twice a day. Then, to compound matters, as steroids were being pumped into her body, she gained about 60 pounds.

A mouthful - but that was Marie's reality after she learnt she had lupus.

Then something happened to change her outlook on life.

She found God.

"God came into my life when I was about to give up. I really felt like giving up," she said.

Marie says he has been her rock and strength.

It was only after that, that Marie remembers having a couple months when she felt normal – almost like her old self. Her lupus was in remission from October 2005 to April this year.

But then after a spinal problem and subsequently major surgery, she had to put a stop to the steroid use.

Then what followed was a worsening of her lupus.

Marie purses her lips for a couple seconds. She admits she is in some pain during the interview.

Still, she fought through, continuing to talk even though she was also conscious that her lips were swelling.

Alot has changed for this usually vibrant and fun-loving woman. "I don't do much now. I am not very sociable. I don't do a thing," she said.

"I can't do what I am accustomed doing. I now depend on others to help me," she added.

Marie is still grappling with her diagnosis, but she flashes a smile and says she takes every day as it comes.

Now, she wants to help others who were recently diagnosed with lupus.

"I just want to help others," she saidl recognising the high cost of treating lupus.

"Blood work is expensive, the medication and the checkups all add up and it is costly," she said.

Right now her aim is to give something back.

Marie knows how far her support and encouragement from her family, her close friends and her company has gotten her.

It is because of them that she can smile.
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
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« Reply #18 on: November 08, 2006, 09:23:14 am »

Andrea #2 (Cheymarie)
http://www.lupusmctd.com/index.php?topic=833.msg4300#msg4300


Mek Mek (her brothers' story)
http://www.lupusmctd.com/index.php?topic=759.msg3864#msg3864


Ashleigh35 from Australia
http://www.lupusmctd.com/index.php?topic=866.msg4632#msg4632

Amy (Amybean)
http://www.lupusmctd.com/index.php?topic=741.msg3571#msg3571


Beth (BethSala)
http://www.lupusmctd.com/index.php?topic=729.msg3445#msg3445

Tesa (LupusJoy)
http://www.lupusmctd.com/index.php?topic=746.msg3602#msg3602
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« Reply #19 on: November 11, 2006, 08:13:37 am »

Living with Lupus, One Day at a Time

ViAngela Roach prepares to take her daily medication. Roach, 19, was diagnosed with lupus in 2004.
Imagine a good day: You feel rested. You have the energy to run to class and stay out late with friends.

Imagine a bad day: Your joints hurt so much it's hard to get out of bed. You can't keep your eyes open in class because of fatigue. You can't stay outside because the sun will irritate your skin.

Now imagine that you have a disease most people have never even heard of, a disease in which your body's immune system is attacking your own body's cells and tissues, and that there's no cure.

That's the situation that Faith Smith, a nursing junior at North Carolina Central University, and ViAngela Roach, an elementary education sophomore at the school, live with every day.

Smith and Roach both have a chronic, autoimmune disease called systemic lupus erythematous. It is commonly referred to simply as lupus. The disease principally affects the joints and the skin, but it also can damage other systems of the body, such as the kidneys.

Lupus is not infectious. According to the Lupus Foundation of America, about 1.5 million Americans suffer from the disease. It is two to three times more likely to strike people of color, and it is 10 to 15 times more likely to strike women.

Despite the unpredictable nature of lupus, Smith and Roach are determined to live normal, enjoyable lives.

Smith was diagnosed with lupus in November 1999 after being admitted to the hospital for dehydration. A kidney biopsy, a tool used in determining whether a person has lupus nephritis, showed the disease had inflamed and scarred her kidneys.

"Emotionally, I was terrified," said Smith.

"I never heard about lupus before."

Smith's mother, Elouise Payton, described the news as "devastating," but said that she was committed to helping her daughter navigate through life successfully.

"I believe it can be managed with proper rest . . . and by being knowledgeable [enough] to take control of lupus flares," said Payton.

Smith said that managing lupus is difficult.

"By being so active on campus, I don't have the time I would have if I was in high school," she said, adding that it's easy to get distracted. Smith's lupus was in remission when she was in high school, but that changed when she came to North Carolina Central in fall 2005.

She said being away from her family created stress, causing her lupus to flare.

"The best thing for me was to push myself and become physically active with proper rest and diet," Smith said. Smith now works out four to five times a week and eats foods high in potassium to prevent joint pain.

A typical lupus sufferer has a medication regime that includes steroids, calcium and iron supplements and an ibuprofen-based anti-inflammatory.

When she was in high school, ViAngela Roach led a very active—and sometimes stressful—life.

"I ran cross-country track up to my junior year in high school," said Roach.

"It was work, track and school. I was home at 11, just to be up at 5 the next morning."

Then, one day, her joints started aching. Shortly afterward, she collapsed in her bedroom. She remembers her father lifting her into bed—and then waking up in the hospital.

"I was in a coma for three days," said Roach. She said she remembers having a seizure and then being in the hospital.

"I am blessed to be alive. I could have died," she said.

Roach's blood pressure had jumped and she had developed anemia, a pathological deficiency in the oxygen-carrying component of the blood.

She was diagnosed with lupus in April 2004.

Her mother, Dianna Roach, didn't know what to think.

"At first I was upset," said Dianna Roach. "I didn't know much about lupus.

Dianna Roach said she's determined to help ViAngela see it through. "She'll always be mama's baby, regardless," the mother said.

Like Smith, Roach takes a regimen of supplements and medicines.

"I try to take it one day at a time," said Roach, who is active with Project SAFE, an HIV/STD peer education program, and other activities.

"The more I do, the less I think about getting tired," she said.

Roach said lupus has helped her become more tuned in to her body. "I'm more health-conscious now," said Roach. "You need to know if your body is changing, like if your hair starts to fall out or if your blood pressure starts to rise."

Roach said it is vital for her to communicate effectively with her doctor.

Dr. Mary Anne Dooley, director of the Rheumatology Clinic at UNC-Chapel Hill, is optimistic about future treatment for lupus

According to Dooley, six medicines are in trials for the disease. "The outlook on medical care is improving," Dooley said.

"People are living longer because we are able to diagnose and treat patients earlier."

While they wait for treatment and medicines to improve, Smith and Roach are determined to make the best of a negative situation. "It could have been worse," Roach said. Smith said having lupus has helped her realize how precious life is. "People look at lupus as a disability, but I don't want my lupus to be an excuse for anything," said Smith.

Smith said she plans to become a nurse. She said her experience led her to a deep appreciation of the profession.

"Lupus reinforced my purpose in life," she said.



Candice Mitchell, a student at North Carolina Central University who has lupus, writes for the Campus Echo.
 

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« Reply #20 on: November 16, 2006, 09:29:43 am »

Lupus Patient Shares Medicare Experience of Getting Through the Doughnut Hole in 'Success' Podcast

Beneficiary on Track to Save $8,000 by Enrolling in Medicare Drug Benefit, Encourages Others to do the Same

Seniors and their caregivers will now be able to download the latest podcast episode in the "Success" series that was released today, in which Anita Fricklas, a Medicare beneficiary from Denver, Colorado, shares how she moved through the doughnut hole in Medicare's drug coverage to take advantage of the catastrophic care benefit.

"Success: The Benefits of the New Medicare Drug Plan" is a Medicare podcast featuring the personal experiences of Medicare drug coverage beneficiaries. It can be found on Senator Bob Dole's Medicare campaign Web site, http://www.bobdoleonmedicare.com, as well as on iTunes and other podcast directories.

 
 Fricklas, a Lupus patient who takes 15 prescription drugs a day to manage her chronic illness, expects to save more than $8,000 in 2006 because of her decision to enroll in a prescription drug plan through Medicare.
 Prior to Medicare's drug coverage she did not have prescription drug insurance and in 2005, paid more than $13,000 for her daily medications.

"When I found out there would be a prescription drug plan through Medicare, I examined it carefully and found a plan that would work for me and that would cover all of the drugs I am currently taking," said Fricklas.

After making sure her drugs were on the plan's formulary, Fricklas determined that a plan with a low premium would be better for her since she had such high drugs costs. Such a plan would allow her to reach the catastrophic care level quickly and Medicare would pay for 95 percent of her drug costs.

Fricklas said, "I went to the pharmacy at the beginning of May and had three prescriptions to fill, and I got the bill and it said $15, and I said, 'Wait a minute, there are three prescriptions in here. There's a mistake here. It's $15 for three drugs, and she (the pharmacist) said you've reached the catastrophic level and that's all you have to pay ... so I said, 'This is unbelievable.'"

Fricklas believes that all seniors should take advantage of Medicare's drug benefit and enroll in a plan, even if they don't currently take any prescription drugs. "I would recommend for someone who hasn't signed up yet because they take few or no prescription drugs that they sign up for a plan, sign up probably for the least expensive plan they can find," said Fricklas. "They need to get into the system because at some point when they may need an insurance plan it will cost them more and they will be penalized because they're not already in the system."

To listen to this or other "Success" podcast episodes, visit http://www.bobdoleonmedicare.com. For more information about the Medicare prescription drug coverage, beneficiaries should call the CMS hotline at 1- 800-MEDICARE, or log onto http://www.medicare.gov, the official CMS Web site.

This podcast was derived from former Senator Bob Dole's nationwide speaking tour and interviews with Medicare beneficiaries, and is sponsored by Pfizer Inc.

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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
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« Reply #21 on: November 16, 2006, 09:46:20 am »


**From the Yakima Herald Republic Online Newspaper
(If you can help)


Single mom caring for two children also faces illness

A single mother with two children has an extra burden this year -- she's been diagnosed with lupus.

Struggling to provide for her 5-year-old daughter and her 2-year-old son, she could use the community's support.

She needs a gas card so she can get to her doctor's appointments, and her children need clothing and age-appropriate Christmas toys.

Her daughter wears size 5T clothing and size 11 children's shoes, and her son wears size 2T and size 6 toddler shoes.

The family also needs household items -- bath towels, pots and pans, drinking glasses, toiletries and personal hygiene items.

If you can help, call La Keenya Norris at Epic Youth Services, 969-4617. The agency is open 24 hours a day, seven days a week, including the Thanksgiving and Christmas holidays.
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« Reply #22 on: November 19, 2006, 11:03:17 am »

POINT MADE: Verity Young's trips to hospital with mum Laura are easier after reading Sandy the Starfish Meets Doctor Dolphin.



Just what the doctors ordered

FIVE-YEAR-OLD Verity Young's fear of needles meant she had to be dragged into hospital kicking and screaming.

Nothing would reassure the youngster, who needs regular blood tests, as she suffers from the auto-immune disease Lupus.

Her mother, Laura, tried taking toys to hospital and even playing nurses at home in a vain attempt to calm her fears.

Then the mother-of-three hit on an idea to help the Cargilfield School pupil beat her fears. And it turned out to be an idea which is now promising to help youngsters across the Capital.

Inspired by the youngster's love of the sea, Mrs Young decided to write a book which might help Verity work through her fears.

She invented the character Sandy the Starfish with the idea of creating a book in which the colourful character overcame his own fear of injections.

Mrs Young talked about her idea to nurses, paediatric consultants and a phlebotomist - medics who take blood tests - before committing her idea to paper, with the help of her husband John and illustrator Jeff Appleton.

The result was Sandy the Starfish Meets Doctor Dolphin, which Verity loved.

Mrs Young, of India Street, New Town, found that Verity enjoyed looking at the illustrations and lifting up flaps in the book to see how Sandy was feeling.

Going through the experience mentally while she was in a safe place meant Verity was soon happier about her hospital visits, no longer panicking before she reached the door.

The mother-of-three decided to market the book for other children and paid for it to be produced by publishers Fromanteel.

It has proved so popular that copies have been snapped up by the Sick Kids hospital and Stockbridge Health Centre for young patients to read before they go in for their appointment.

It is also widely available in bookshops.

The 38-year-old, who is hoping to secure sponsorship so the book can go into every children's hospital and health centre in Scotland, said: "When we took Verity to the doctors, we noticed that it wasn't just our daughter who was being hauled down the corridor. Other parents were there ashen-faced as their children were screaming and crying.

"I think for many children who are poorly, they don't realise they are ill and they don't understand why they are being assaulted by people with needles or coming out of the hospital in pain when they weren't in pain before.

"All the books about being in hospital show kids who have a plaster on a broken limb or have spots.

"There was nothing for chronically-ill children to show what a visit to hospital might entail. That's why I think it would be helpful if this was available for children to read in hospitals and health centres across Scotland."

The short picture-book shows children what happens when Sandy the Starfish meets Doctor Dolphin in hospital. Sandy must endure a consultation and blood tests and the book shows children what they can expect when they are admitted to hospital.

Verity was diagnosed with Lupus when she was just three, after her parents noticed her legs and joints were swollen and sore.

Doctors first suspected that the youngster was suffering from leukaemia, but, following bone marrow tests, they determined that Lupus was the cause.

Lupus causes Verity's immune system to create antibodies which attack the body's own tissues, instead of protecting the body from viruses. It means the youngster must take a variety of medicines and must have blood taken frequently to monitor her condition.

Lesley Jolliffe, a practice nurse at Stockbridge Health Centre, said she felt that children enjoyed teading the book, which helped to prepare them for their pre-school injections She said: "I think the pre-school age group are particularly difficult in terms of getting them in the door and out the door happy. If they are better prepared, it is less stressful for them and their parents. If you can maintain a pre-school child's confidence, then it's better for them in future when they have to come back to us.

"From a professional point of view, if the child is calm it certainly makes my job is made easier. "

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« Reply #23 on: November 19, 2006, 11:11:58 am »

**THE LETTER

Published July 11

Your smoking affects all those around you

Editor:

I had the opportunity to attend a summer girls' league basketball game recently at Derby Park in Hudson Falls. I was greatly enjoying the game of Hartford against Queensbury. However, it was short-lived. A gentleman came over and stood behind me smoking a cigar. I was not in the position to just get up and move due to a recent knee replacement, and my girls had placed my chair in a good viewing section.

The smoke from the cigar bothered me so much that one of my girls went over to a recreation supervisor to ask if smoking was permitted at the park.

Unfortunately, evidently, if you are over the legal age you can smoke.

Although the gentleman was definitely over that age, all the children at the park inhaling secondhand smoke were not over that age and did not have a choice as to whether they wanted to inhale the cigar fumes!

There were toddlers, pregnant women, elderly, children of all ages -- including Coach Smith's baby. What choice did any of them have?

I am not a prude. However, I have had serious health issues due to my Lupus, including recently being diagnosed with Lupus Shrinking Lung Disease.

If people want to continue to smoke, please do it where you are not affecting so many people with your secondhand smoke! It is not fair to others.

I have just had to call my neighbor to bring my girl to tonight's game. I had to go to the doctor early this morning with the effects of

secondhand smoke. This a very serious issue to the public.

JANET H. DONALDSON

Hartford


Saturday, November 18, 2006 6:20 AM EST

HUDSON FALLS -- This village of 7,000 people is the first in the Capital Region to make a municipally owned public park smoke-free, said Janine Stuchin, project manager of the Southern Adirondack Tobacco Free Coalition.

The change all started with a short letter to the editor.

"I did not know I was going to cause such a revolution," said Janet Donaldson, laughing as she spoke on the phone from her family's home in Florida.


 Donaldson wrote to The Post-Star because she was irritated by cigar smoke during her 15-year-old foster daughter Shavonda's recreation league basketball game.

In her letter, the Hartford woman mentioned that she had the autoimmune disease lupus and could not move her seat because she was also recovering from knee replacement surgery at the time.

The letter caught the eye of Janine Stuchin, project manager of the Southern Adirondack Tobacco Free Coalition, who brought the issue to the attention of Hudson Falls Mayor David Carter.

Carter and the Village Board then raised the issue during several public meetings.

Two girl basketball players spoke in favor of the move at the Village Board meeting Monday.

"I told them it isn't good for me because I have asthma," said Hayley Leclaire, 13.

"I said our younger siblings go there, and then they would see it and want to smoke," said Alexis Perryman, 14.

Both girls said they were nervous about addressing the board but felt obligated to speak up for what they believed in especially because their health teacher asked them to.

"These are venues where we are trying to promote the health and wellness of children and families," Stuchin said. "Tobacco use just wasn't consistent with that."

The policy applies to Derby Park and Paris Park. Derby Park is used by soccer, softball and baseball teams run by Kingsbury's Recreation League.

The policy also affects Paris Park, a small lot behind Village Hall. It is used for carnival rides during Sandy Hill Days and could also be used for ice-skating this winter, Carter said.

Though it will be six weeks before signs are posted and cigarette butt disposal cans are put outside park gates, the policy is effective immediately, Stuchin said.

Because it isn't currently a law, police officers will not be writing tickets for smokers, Carter said.

The village could eventually pass stricter regulations, but for now, enforcement is on the honor system, he said. Residents can feel free to ask smokers to leave the park or extinguish their smokes.

Juckett Park, in the village's busy traffic circle, won't be impacted because it doesn't contain playgrounds or ballfields used by children and families.

"We're not trying to restrict people completely," Carter said.

Efforts targeting smoking are especially important in economically depressed areas like Hudson Falls, where smoking is ironically statistically more common, Stuchin noted.

In Hudson Falls, many children receive free or reduced lunches because their families are living at or below the poverty level.

"If we can get our kids to exit our doors without becoming a smoker, the chances of them becoming an adult smoker are really reduced because most start by the time they are 18," said Michelle Burke, chairwoman of the Margaret Murphy Elementary School Health Advisory Council, which has a membership of school officials, teachers, students and community members.



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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
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« Reply #24 on: November 21, 2006, 08:49:47 am »


Web helps student getting lupus treatment


FARGO — Senior Amanda Moyer spent time after anatomy class doing the same thing she and the other students usually do while waiting for the bell — hanging out, catching up on gossip, trading good-natured barbs.
The only difference was that Moyer, 18, was in a Chicago motel room about 900 miles away, communicating with her classmates at Fargo High School through video technology on the Internet.

The next day, she was scheduled to begin an experimental treatment for the lupus that has relentlessly attacked her body since the eighth grade. But for an hour, at least, Moyer and the other six members of the Class of 2007 could forget about that and enjoy their time together.

The cutting-edge Internet video technology that allows Moyer to attend class while receiving her treatment is not just a way for her to keep up with schoolwork. It's also an important psychological bridge to her world, a daily dose of idle frivolity for a girl wizened beyond her years because of an implacable disease.


The disease
"Amanda was diagnosed with lupus the day after her 15th birthday," said her mother, Kris Ann Moyer. "I remember looking at the doctor and asking, ‘What's that?'"
Since then, the family has become familiar with the disease, which often strikes women.

"They're still trying to figure out what exactly causes lupus," Kris Ann Moyer said. "What triggers it, what causes your immune system to turn on a dime and start attacking you.

"It tends to strike at points in your life when you're going through hormonal changes, primarily puberty, childbirth and menopause. For Amanda, it was puberty."

Amanda Moyer succinctly describes it as "when you get sick, your immune system attacks the bad stuff. When I get sick, my immune system also attacks me."

Early symptoms included joint pain, headaches and vision problems. Then it got really bad.

"It got to the point where I was having neurological issues. It was scary. My brain swelled, and I was seeing and hearing things that weren't there," Moyer said.

In many cases, lupus responds to treatment, and in the ensuing three years, she was subjected to virtually every method, from chemotherapy to steroids.

None of it worked for long. Eventually the symptoms would return, and she would continue to worsen.


Like rebooting a computer
During one of Amanda Moyer's many hospital stays, a doctor referred her to a pioneering program at Chicago's Northwestern Memorial Hospital, where the patients' own stem cells are harvested from bone marrow, and their immune system basically is destroyed through intense chemotherapy.
The harvested stem cells are injected back into the body to hopefully regenerate a lupus-free immune system. First performed in the United States in 1997, the stem cell transplant boasts a five-year survival rate of 84 percent, according the Northwestern Memorial Hospital.

For the Moyer family, it offered hope. The procedure itself was arduous and risky. After the stem cells are collected, it takes a full week of powerful chemo to kill off the body's immune system. The patient then has to wait another week before the stem cells are reintroduced to the body.

During this time, Moyer, who began chemotherapy last week, is particularly vulnerable and kept in a completely sterile environment while her immune system slowly rebuilds itself.

"They liken it to rebooting a computer. That's the analogy they gave us," Amanda Moyer said.

In early October, Moyer and her parents made the trip to Chicago to prepare for the procedure while Amanda's two younger brothers, Luke, a sophomore, and Clay, a third-grader, stayed with friends and family in Fargo, a community of about 330 people west of Woodward.


A virtual senior
Amanda Moyer won't be home until December at the earliest, and she will miss out on much of her senior year. For someone who loves school and sports, especially softball and basketball, it was a bitter pill to swallow. She would be so far away from her home, her friends, her school and her basketball.
That's when Fargo Superintendent Mike Woods came up with an idea.

A self-described technology junkie, Woods long has been a proponent of distance learning in the classroom. Woods reasoned that with a laptop, a Web cam and the right software, there was no reason Moyer couldn't at least attend some school virtually from Chicago.

"The superintendent of Howe Public Schools in eastern Oklahoma is a friend of mine, and we collaborate on a lot of technology projects," Woods said. "They actually own the server and software that allows us to connect Amanda to the classroom."

Microphones placed in the ceiling of the classroom allow Moyer to hear everything said in the classroom. A Webcam allows her to see the entire room. Her image in turn is projected onto a whiteboard for the class to see.

"It's all done in real-time," Woods said. "There's a slight delay and the video is a little choppy, but it's very good quality."

Moyer is taking three classes, but anatomy is the only one she dials in to. For the others, she corresponds by e-mail.

For Moyer, being in class helps her cope with her illness.

"It's the closest thing to being there," she said. "It's helped me so much being able to see everyone together. The side effects of this are pretty awful sometimes, but the hardest part for me is knowing what I missed out on. Every time you get sick, you have to start all over again. It's really hard to feel normal after that, and that's where your friends come in. They help a lot with that."

Moyer's friends say the technology is nice, but it does have its limits.

"Well, we can't squeeze her," classmate Jennifer Woods said with a laugh.

"She also scares us sometimes," classmate Chelsea Ogden adds. "We'll be sitting here real quietly doing our work, and she'll suddenly say something through the microphone and we'll jump."

Although Moyer won't be able to log on as often now that her chemotherapy has begun, Kris Ann Moyer said they will connect as often as her daughter feels up to it.

"It's a lifeline for all of us, really," she said. "One day, her brother Luke wandered through the classroom, and we got to see him. Little things like that keep us up. Our prayer and goal is that she can go through graduation ceremonies with her class. That will be a real victory for us."

Doctors have told Amanda Moyer that if all goes well, she'll be home by December. And she vows to make that happen.

"I'm basically an optimistic person, but of course it's not always like that," Moyer said. "Sometimes it gets bad, and what sustains me when it's like that is knowing what normal feels like — that even if you don't feel like being happy now, you know that eventually you'll get back to it."

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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
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« Reply #25 on: November 27, 2006, 08:02:12 am »

Illness teaches lessons in everyday living


(November 26, 2006) — If there is a silver lining in every problem, then I have found one of mine. Time management has never been my forte. Being a procrastinator and an enthusiastic people-person has been a bad combination for me. I have gone through periods of feeling overwhelmed with paperwork or social commitments or with my own desire to be a Super Mom and Super Teacher.

Loving friends even warned me that God would slow me down if I did not do it myself. I always promised them and myself that I would prioritize my life and slow down just as soon as I finished up everything I had already started to do. Of course, that day never arrived.

Time management and prioritizing the work to be done has become a major focus in my life, however, and this is due to my lupus. I have had lupus probably since 1998 but did not know it until 2001. Lupus is an autoimmune disease that causes ups and downs in my energy levels, and it can knock me right out with arthritis and fatigue when I am in a flare. There is no chance to play Super Mom in flare. I am just Super Tired.

Now whatever I do and plan out is focused by the reality of this illness. Everything in viewed in terms of the energy needed to accomplish the task and the value of doing the task in the first place. Instead of simply jumping in and saying yes to everything that comes along, I must decide which of my choices is truly more important in the long run.

I have also learned to work slowly but surely, chipping away at paperwork and housework instead of trusting in that adrenaline rush that lets procrastinators like me sneak in just as the deadline ticks down. My old ways of working under pressure won't work during a lupus flare; it is impossible to hurry up and finish the job when just keeping your eyes open requires Herculean strength. Besides, the stress of living that way triggers flares of the illness in the first place. Reforming myself is still a challenge, but on most days I am able to be more like the tortoise than the hare.

Lupus is not fun. I do not like feeling like I am 103 in my 40s. However, lupus has taught me the importance of planning my life and of being thoughtful about living. It has caused me to be like a marathon runner, pacing myself instead of always sprinting to the finish line. These are lessons I struggled to learn earlier in life. I am beginning to learn them now. Ironically, living with a chronic illness has taught me how to truly live. That is what I call a silver lining.

Melanie A. Savidis lives in Gates, and both she and her husband, Mike, teach in the City School District. They are the parents of three boys: Yianni, Walter and Adonis. She is an active member of the Lupus Foundation of America.

 

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« Last Edit: November 27, 2006, 08:51:05 am by Kathy » Logged


I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
lindam
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« Reply #26 on: January 06, 2008, 11:00:31 am »

My story started 15 yrs ago....diag with Ulcerative Colitus....went on to a 2nd doctor...found additional problems of a parasite in the colon....was on numerous meds...went down to 100 lbs....had a feeding tube put in to gain some weight....then finally after my 4th doctor, we found a surgeon...I had my entire colon removed....total of 6 months to recoup....and another year or so to feel great again....from there.. I developed Lupus on my shoulders...treatment cleared them for a short time....then was on an antibo for another problem...next thing I know I was admitted to a burn center...for 4 days ..my entire body was like a harsh sunburn, from head to toe.....possible reaction to the antibio....that took its toll on me...lost my hair and to this day...have none...I wear a wig...(which was the best decision I ever made)...I found a wonderful Rheumy doctor who follows my health to a tee.......my stress level is the best its been in a very long time.....I had Carpal Tunnel surgery 3 yrs ago....and the death of my husband...turned me into a total life spin...I know I have to deal with what my health is at this time of my life....I'm 59 yrs old...and I pray every day....that I have a good day....and lots of time left to spend with my children, grand-children, family and friends.
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« Reply #27 on: January 06, 2008, 11:11:51 am »

My story started 15 yrs ago....diag with Ulcerative Colitus....went on to a 2nd doctor...found additional problems of a parasite in the colon....was on numerous meds...went down to 100 lbs....had a feeding tube put in to gain some weight....then finally after my 4th doctor, we found a surgeon...I had my entire colon removed....total of 6 months to recoup....and another year or so to feel great again....from there.. I developed Lupus on my shoulders...treatment cleared them for a short time....then was on an antibo for another problem...next thing I know I was admitted to a burn center...for 4 days ..my entire body was like a harsh sunburn, from head to toe.....possible reaction to the antibio....that took its toll on me...lost my hair and to this day...have none...I wear a wig...(which was the best decision I ever made)...I found a wonderful Rheumy doctor who follows my health to a tee.......my stress level is the best its been in a very long time.....I had Carpal Tunnel surgery 3 yrs ago....and the death of my husband...turned me into a total life spin...I know I have to deal with what my health is at this time of my life....I'm 59 yrs old...and I pray every day....that I have a good day....and lots of time left to spend with my children, grand-children, family and friends.
(((LINDA)))
Your story is a terrible one, I am so sorry your health went through so much! I pray you will continue to be stable. CandleSmilie

I am sorry to hear about the loss of your husband, as I worry about what will happen to me if mine were to pass what would I do? how would I survive? I depend on him for too many things.

You are now officially part of our family. You come here anytime 24 hours a day, 7 days a week to read, there is entertainment (medical videos, music videos,Podcasts, recipes, and now we have Karaoke for thise who love to sing!)

I try to make this site to where we can come for a variety of reason, support is my #1 goal.
My health motto has been "We Understand What You Are Going Through!".
Some stories are the same, some are different, but at least we all do understand each other's health issues when others don't.

WELCOME ABOARD LINDA!!!
Kathy 


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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #28 on: December 27, 2008, 10:11:23 pm »


I am 30, 31 tomorrow actually! I suffer from fibromyalgia, fibrocystic breast disease, thyroid disease, heart arrythmia, migraines, tremors, chronic pelvic pain and chronic hemmoragic ovarian cysts among other things.

I am married, I have 3 beautiful daughters. I had 2 c-sections and had a hysterectomy in Jan 2006 that removed my cervix and uterus. Later I had a few laproscopics to remove scar tissue, a mass and my left ovary so I only have one ovary left.

I am on a slew of medications.....

For a few years now I have tested positive ANA but the doctors wanted to wait on completly diagnosing Lupus due to the fact that I had alot of the criteria but not all of it. Lately my illnesses have been progressing and I just had an MRI that showed a lesion on my lumbar. Inflammation on my spine. They at first thought MS for sure until they saw the area the lesion is located so it looks more like CNS Lupus.

I went tonight for another MRI of the brain and cervical spine to rule out anymore lesions there. That would be more likely to be MS or even could be both. I am just so frustrated right now because I dont feel good and everytime I turn around there is something new going on.

My questions to you all if you dont mind me asking is what type of Lupus are you suffering from? How did you feel and react to your diagnosis? What was the process for you while you were being diagnosed? My mind is in a million different directions. I am trying to stay so strong, I know the only thing that will keep me healthy is my strength. I feel like a 30 year old girl trapped in a 90 year old body!!!
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« Reply #29 on: December 27, 2008, 10:16:44 pm »

I think I posted in the wrong type of forum...I am so sorry I am new to this!
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LupusMCTD Founder & Patient
Former Domestic Violence SURVIVOR
Kathy A. Patterson

Author of the Upcoming Memoir Book:
"Fighting From The Inside Out"..
A lupus patient fights the beast within her immune system and the beast at home....

e-Booklet filled with photos and videos of what abuse was, signs to look for,
where to turn to for help, and much more to help others like me...


For more information
Call the National Domestic Violence Hotline at 1−800−799−SAFE(7233)



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