Imagine your joints swelling up so bad that one side of your body - from your toes, up through your ankles and into your lower back - shuts down from time to time.
Now imagine spending five years not knowing why it's happening.
Laurie Ourada was diagnosed with Linear Scleroderma in 1983 - a very rare auto immune disorder that causes the body to turn against its own immune system. The progressive disease affects the skin, arteries, kidneys, lungs and joints and results in various complications.
"I couldn't move," Ourada recalled. "I couldn't bend any joints on one side of my body; it caused blood clots and I had some life-threatening situations with those. It seemed like it would get bad, then get better, so throughout the years I just learned to deal with it. I was sent to Sioux Falls, then to the Mayo Clinic because they hadn't seen anything like it in Sioux Falls."
Ourada remembers feeling like a guinea pig at the Mayo, with dozens of doctors coming through to study her body. They wouldn't talk to her, she said, just feel and touch her. Although the process is no fun, Ourada continues in the program in hopes of helping others who are facing a similar situation. She has learned of one treatment for her disease, but one of the side effects of it is blindness.
"I thought, 'Nope, I'd rather have this and only this then treat it and face the possibility of losing my eyesight,'" she said. "It's very frustrating, because the doctors, they just hadn't seen it."
Ourada has been in remission for a number of years, but with all the health issues she has faced since March, the disease has taken its toll. Because of numerous abdominal surgeries and atrophy her abdomen had to be rebuilt with decelluized pigskin graft - two-and-a-half sheets worth at $30,000 per sheet. Complications have resulted in life-threatening medical issues, the worst having come since March when Ourada had a hysterectomy.
"I think that's when we woke some things up inside me," she said of the hysterectomy. "When my tissue is cut into, it won't heal back."
Ourada herself was woken up in July when she and her daughter, Andrea Bond, and her 3-year-old granddaughter, Cadynce, were returning from a trip to Texas. It was then, outside of Joplin, Mo., when Ourada experienced a propulsion of tissue which caused her intestines to start coming out of her body because her abdomen had deteriorated so badly.
Just like that the three found themselves on the highway in need of immediate medical attention with a truck that had just broken down.
"I was already on the phone with a doctor and just said, 'Hey, something's not right here. I'm feeling some goofy stuff going on,'" she said. "They were puzzled and told me I needed to get to emergency care."
That care came at Kansas City University, where Ourada learned of the pigskin graft treatment. After a one-and-a-half-hour ambulance ride to KU, Ourada eventually had surgery, which lasted more than eight hours. Doctors rebuilt her abdominal wall by placing the pigskin graft under her fascia to form her new abdominal wall. The surgical team also found a large pouch of hematoma, fluid and infection near the hernia repair site that was removed.
Bond said her mother's situation is "scary'" but that she has the "strength and determination to overcome and stand above the disease. I think what is so important to remember is that life is short and that anything can happen anytime, even if you don't have room on your schedule for it."
Ourada's hope is the treatment will allow her tissue to grow into the pigskin and form a solid mass again.
In the meantime, Ourada - fresh off three surgeries in the last five months - is adjusting to a new, more sedentary lifestyle, one she definitely doesn't think much of. Ourada, who has had to give up her day care business, describes herself as an active mother, and for 10 years, she organized Captain Dan Days, an annual event that honored her son Dan, who was killed in a car crash in December 2001.
With a long road to recovery ahead, she admits to pushing herself too often, something she knows she shouldn't do since these days a simple sneeze could do a world of internal damage.
"I'm having a real hard time dealing with it," Ourada confessed. "My life is just tipped upside down. I can't work at all, I have a restriction of 10 pounds to lift. No long walks, no exertion of any kind. I had 14 kids in my day care, now I have nothing."
That's not entirely true. Ourada has strong faith and a support system firmly in place, made up of family, friends and the entire Lucan community who were always there for Ourada after Dan's death and who never missed a Captain Dan Days weekend. Those are the same people who have planned a benefit for the Ouradas on Sept. 8 in Lucan.
Ourada said she was humbled to the point of saying no to the event but is glad she didn't.
"They said, 'You're always helping other people; this is a chance for others to reach out to you,'" she said. "Everybody that has touched our lives with Captain Dan Days, they're here again for me. It's overwhelming. Someone in the whole chain of people we met through Captain Dan decided to do a card shower for me, and now my mailbox has had 10 to 15 cards in it every day for the last two months."
She has also received help at home from friends who stop by to tend to her garden and take care of other chores. As much as she appreciates the assistance, she admits it's difficult watching someone else pick up her load.
"It's very hard, but these people appreciate and respect that it's hard for me to watch someone else do my work," she said. "But I've just got to step back and let it happen. The help has been constant. It's amazing - you'd think they would go away after so long but they don't."
Ourada's personal struggles in coping with the loss of her college-aged son made her a stronger person, she said, and has helped her deal with what life throws at her. She said God will continue to embrace her the same way her son was embraced.
"I hope I'm on the road to healing and that God's plan for me is to get healthy again and get back to work and be an active part of my family again," she said.
As a special side note to next weekend's benefit, a film crew from Hollywood will be in Lucan to tape a documentary on Laurie's daughter, Andrea. Bond is a military veteran who was offered a job with Southwestern Energy out of Houston, Texas, through America Wants You, a nationwide program developed to help unemployed veterans find jobs.