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Author Topic: Personal Lupus Stories  (Read 53264 times)
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« Reply #30 on: December 27, 2008, 10:23:47 pm »

Quote
I am 30, 31 tomorrow actually!
Hello and welcome!!!
I'm 49 right now come midnight I turn 50!!!!

You asked how we felt being diagnosed. For me it was a relief and I was happy. I had been ill since I was 16 yrs old (seizures, pnumonia, migraines, pluerosy, etc)

I was not dx till I was 44 yrs old! So you can see why I was so happy I knew I had a name for the hell I had been living, it was a mtter till a Dr said the name of what it was and put the clues together. But that all started back in the 1970's. Cat Scans were new back then, I don't recall MRI's being at our hospital till the late 1980's early 90's.

You are lucky the machines are available now to give early diagnosis and faster treatment.


I hope you have a supportive family as that is what is very helpful living with lupus (or any other illness)
Thank you for joining us and HAPPY BIRTHDAY to you & to me! (Dec. 28)
Kathy  brthday
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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:
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« Reply #31 on: December 27, 2008, 11:35:49 pm »

 wink  HAPPY BIRTHDAY TO YOU ALSO THEN! That is awesome!

I know what you mean that feeling of "just give it a name already". I have been suffering for so long now and I also have had pleuresy many times. The symptoms are so tough to deal with at times but I know with strength I will get through this. I have the best husband anyone could have ever asked for. He is by my side for everything! Thank God for him.
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« Reply #32 on: February 15, 2009, 12:28:32 pm »

Men account for only 10 percent of Lupus sufferers


Matt Johnson of Porter was diagnosed with Lupus at age 16. He is now the Board Chair of the Lupus Foundation of America Indiana Chapter.

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints and/or organs inside the body). The Lupus Foundation of America estimates that approximately 1.5 million Americans have a form of lupus. Ninety percent of individuals diagnosed with the disease are women.

Kevin Brown, Rick Clark, Pat Hurst, and Richard Simko are among those who make up the other 10 percent -- men with lupus.

Brown, 46, lives in Gary and was diagnosed with lupus in 1997 -- after two years of being misdiagnosed with various ailments.

"It ran the gamut," he said.

Brown works in a lab, so when he developed a lupus symptom of a butterfly-shaped rash across his cheeks and nose, doctors blamed a possible spill at the workplace. Then he got sores on his legs.

"Now they were like 'something's wrong,'"Brown said.

Clark, 53, is a Portage resident who was diagnosed three years ago. Up until a year prior to his diagnosis he was pretty healthy. Suddenly a decline in health led to constant visits to the doctor.

"Nobody could diagnose it," Clark said. "It was a dermatologist who finally did. He said, 'you've got more problems than just open sores on your body.'"

Those problems include hardly being able to walk around the block anymore.

"I could barely get in the doctor's office," Clark said.

Hurst, 39, like Brown, was diagnosed with lupus in 1997. The Crown Point resident and waste management worker fears the lupus-related flare-ups that get so achy "it's just too much."

It's his biggest frustration with the disease. Flare-ups can be triggered by ultraviolet rays from the sun.

"If I go outside all day and it's sunny, I'm going to pay for it," Hurst said. "I try to limit myself. My wife wants to go the pool with the kids and stay all day. I'm like, 'no, I can't go.'"

Simko, 75, is in the house all day -- and he can't stand it.

"I would love to be outside," he said.

Simko was diagnosed with lupus in 1984, but believes he was misdiagnosed for 20 years prior to that. He lost his job at U.S. Steel.

"That was tough right there," he said. "We had five children" The "we" would be Simko and his wife, Phyllis, executive director for the LFA, Indiana Chapter.

"It's a tough situation, lupus," Simko said. "Some days are good, some days are bad."

Those bad days may not be so obvious to others.

"You look healthy, so why are you dragging," Brown said, recalling what people have said. "You have to remind them that you have a chronic illness."

It's especially hard on men who have a disease that affects mostly women.

Hurst recalled visiting his doctor, asking questions about how other men with lupus are handling their disease and coming to grips with it.

"He said he didn't know who to compare me with because he had no other men with lupus," Hurst said.

On the flipside, Brown believes men seem to respond to treatment "pretty well."

"I guess that' s a good thing," he said.

It is for Clark, who after three years is just getting back to activities he left off when he was diagnosed -- like tennis.

"Every year I feel stronger," he said.

Flare-ups, and fears, will always exist. Fears like life expectancy, and for Hurst in particular, having to undergo an organ transplant.

"I don't hide the disease I have," Hurst said. "I let people know, just for awareness. It's something I have to deal with."

SOURCE: Google
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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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LupusMCTD Founder & Patient
Former Domestic Violence SURVIVOR
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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...


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