Sivi Remley

It was 1983, Sivi recalled, when she first became seriously ill. She remembered flu-like symptoms with a high fever, vomiting, headache and joint pain. Upon examination doctors noted an inflamed liver. These threatening symptoms lasted a couple of weeks. She was hospitalized for a few days and was d iagnosed with juvenile RA and vasculitis, and her rheumatologist recommended treatment with non-steroidal anti-inflammatory drugs.

Ten years later, in 1993, Sivi had a happy and momentous year‹she graduated from college and became engaged. Conversely, when she attended a cousin's wedding in San Diego, she became very ill once again. She remembered experiencing flu-like symptoms and her family thought it was a virus. Her symptoms grew worse-a very high fever, debilitating joint pain, and her family noticed a significant weight loss. She also noticed sun-sensitivity and a rash appeared on her arms, face and legs. She was referred to numerous physicians and extensive blood studies were inconclusive.

She progressively became worse and her fever increased to 105 degrees. Over a two week period of time she visited six doctors. When one of the doctors saw the butterfly rash on Sivi's face he commented "she probably has lupus." They tested her once again for lupus and this time the results were positive. She was hospitalized and the doctor prescribed prednisone and plaquenil. Soon she was stabilized and was able to go home.

The following year, in 1994, she married Jay Remley. Her health remained stable and her doctor advised her to continue with her current medical regimen to prevent a future flare. She became pregnant in 1998 and towards the end of her pregnancy became pre-eclamptic. She had to take magnesium to control her extremely high blood pressure and to ensure the safe delivery of her child.

Her subsequent pregnancy was normal, however, her doctor considered her a high-risk patient and monitored her very closely, including requiring non-stress tests to confirm she and her baby were doing well.

In recent years Sivi remains sun sensitive, experiences fatigue and sometimes arthritis bothers her. Now at 34, she is fortunate, reporting that since 2001 she manages her disease without taking any medication. She gets adequate rest-when the children take their naps, she does too.

To take care of her sun-sensitivity, she uses a lot of sunscreen. She also wears long-sleeved shirts and hats. She has noticed that the sun does cause her to become more fatigued.

Sivi mentioned "I don't know what I would do without Jay. When I am tired he does the grocery shopping, the dishes and whatever needs to be done. I am very fortunate to have such an understanding husband. He is always there for me."

Sivi found the LFNC in the spring of 2003. To learn about lupus, she read many articles and several books from the LFNC library. Sivi said "this information was easily accessible and I found them to be very informative and encouraging."

From the time she was in high school, she always wanted to volunteer. Lupus was her passion now and she decided to get involved with the LFNC. She became a passionate fundraiser and for the past two years recruited large teams of 15-20 friends and relatives to attend the Foundation's annual run with her. She has also been one of the "top sellers" of entry forms for the LFNC's annual Mercedes event.

She also became an active office volunteer and subsequently, when a staff position became available, she worked seven months as the LFNC Development Assistant. "When I was a LFNC staff person," Sivi stated, "I became fully aware of the how vitally important the Foundation's services are to many thousands of people who request services or contact the office."

"It was a delight to work with the LFNC staff," she continued, "they are all so bright and creative. It was such fun to go to work each day. It is amazing how much work is done through the office. The Foundation provides its services so cost-efficiently." Sivi concluded, "Wonıt you join me and my family as we make a generous gift to the LFNC this summer?"