What I love about networking with fellow endo sisters is that sometimes I get to see into their lives through pictures. Through pictures, I find out about even more endo sisters!
Jenn Meanor, owner of Cure Endo Quilts, is someone I met through an endo group on Facebook. While chatting with her one day and looking through her online photos of family and friends, I saw a photo captioned, “Peggy was the first person in the US to get approved for disability for Endometriosis!”
Really! I had no idea one could finally get approved for disability payments! I had to know more about this Peggy person!
A search of the Internet led me to a couple of articles, and Jenn mentioned that Peggy was also featured in one of the Endometriosis Association’s newsletters. So I went back through my newsletters to find that story. And now you get to know Peggy Santa Maria, too!
Woman honored for hosting the sick
Date: April 16, 2006
Publication: Oakland Tribune
Author: Michelle Beaver, STAFF WRITER
SAN LORENZO — Peggy Santa Maria’s doctors have experimented on her so many times that she often feels like a guinea pig.
“It’s been overwhelming at times, but it could be worse,” she said. “I could be paralyzed or something.”
She is not paralyzed but does have lupus, immune problems, a catheter and the queen mother of all her problems: endometriosis.
She is able to forget all that though, when she remembers the award she won this year. Santa Maria, 52, is the first recipient of the Servant of the Heart Award from the Endometriosis Association.
“I was so honored when they called my name in front of 700 people that I almost passed out,” she said. “I was crying tears of joy, and I was shocked.”
Santa Maria was honored because she and her husband, Roy, have opened their home free of charge 55 times to endometriosis patients who visit from around the country. These patients seek the help of three Bay Area doctors who are endometriosis experts.
Endometriosis is a disorder in which the endometrial tissue usually found in the uterus finds its way into other parts of the body. It can collect almost anywhere — even in the brain — but typically travels only as far as the pelvic region.
The tissue grows and sheds, usually during certain stages of a woman’s reproductive cycle. Unlike tissue in the uterus, however, this “renegade” endometrial tissue has no way to leave the body. It is often painful, and can lead to infertility and complications. The causes are unknown.
According to the Endometriosis Association, about 5.5 million women in the United States have this disorder.
Santa Maria was diagnosed in 1977 when she was 23. Since then she has been through 15 surgeries and on Monday will undergo her 16th. She said that many of the surgeries, such as her hysterectomy, were useless if not harmful. She was in such pain after her first few surgeries that she had to quit her job as a senior title agent and go on disability. She misses her job, but is stimulated by her work at the “Endo Inn.”
“I love helping people,” she said. “I don’t want them to suffer alone like I had to in the beginning of my illness. I can tell them what to expect and I can calm their fears.”
The guests stay in a clean, comfortable room that is filled with Dalmation collectibles. The Santa Marias have two real Dalmations, and they are often a comfort to Endo Inn guests. The room has cable TV and a VCR, and each woman stays an average of two weeks.
“When people find out we do this they say, ‘How do you dare trust someone you don’t know to come into your home?'” Santa Maria said. “I say, ‘Why not?’ We have a lot of love to give. This has really been a wonderful experience and I’m so honored to have won an award for it.”
Patients find support, friends at Endo Inn
Date: March 7, 2007
Publication: Oakland Tribune
Author: Rachel Cohen
SAN LORENZO — Sylvia Mireles looks healthy. And indeed, she is feeling much better since she underwent a surgery last week to remove the endometriosis that was spread throughout her abdomen.
Since then, Mireles has rested at the Endo Inn, the cozy home of endometriosis survivor and advocate Peggy Santa Maria and her husband, Roy. Mireles is the Endo Inn’s 70th guest since it opened in October 1999 under the motto — thought up by Roy — “Stay at the Endo Inn while you are getting your endo taken out.”
After searching for more than a year, Mireles, a Los Angeles resident, found a doctor at Stanford hospital in Palo Alto to perform the surgery. Though scheduled for three hours, it lasted four and removed 80 percent of the disease, so Mireles will return for more surgery in two months.
Mireles found the Santa Marias through the Endometriosis Association, with which she helped start a chapter in Los Angeles, just a month ago. While Mireles researched information about endometriosis online, she craved personal connection.
“I need to see and read faces to feel support,” she said.
According to the Endometriosis Association, endometriosis is a painful, chronic disease that affects 51/2 million women and girls in the U.S. and Canada. It occurs when tissue like that which lines the uterus is found outside the uterus. This misplaced tissue develops into growths that respond to the menstrual cycle in the same way the uterine lining does, but cause internal bleeding and inflammation because it has no way of leaving the body. It commonly causes infertility, bowel problems and often occurs with other diseases like celiac, a gluten intolerance.
The guest bedroom at Endo Inn is filled with books about healing and pictures of the Santa Marias’ two Dalmatians. Rather than stay in a hotel, Mireles stays here for free, takes walks in the neighborhood and keeps her own food in the kitchen.
“Peggy and Roy have been very warm, understanding and casual. They have open hearts,” she said. “They really walk the talk.”
Peggy Santa Maria was president of the San Francisco Endometriosis chapter for 10 years and answered crisis calls for eight years. She knows well how painful the disease can be. She experienced it starting the first day of her period, 38 years ago. By the time she was 28, she had had 11 surgeries, including a hysterectomy.
“I would never had let them do it now,” she said. “It’s your choice to make absolutely sure. It’s so final, you can never get it back.”
Santa Maria was a senior escrow officer in a local title company, where she met Roy 33 years ago. However, the disease forced her to quit her job in 1990. In 1991, she appealed for federal disability payments, but she was turned down. Undeterred, she had friends write letters saying that she was sick, and three appeals later, in December 1992, she was finally awarded five years of payments. Because of her trial and testimony, endometriosis was also put in the federal registry book of illnesses.
“The Endometriosis Association has women call when they are having trouble with benefits,” she said.
Santa Maria advises women to also call their state senators, which she said ultimately helped her. Through trial and error with her own pain from the disease, she is finally pain-free since having a pain pump installed last year.
“I just wish when I was 14 that somebody had been around,” she said. “If we do what we’re doing now, it can be cured.”
When doctors told her that it was all in her head, she would respond with one-liners such as “No, my brain is in my head, let’s talk about what’s down there.”
For now, guest Mireles plans to take her time recovering, self- publishing a book and continuing her regimen of vitamin supplements, swimming and yoga.
“When people look healthy and say they don’t feel well, don’t think it’s all in their head,” she said.
The Inn’s 71st guest arrives today from Texas.
Even Dr. Andrew Cook has a shout out to Peggy Santa Maria on his website:
“The ENDO INN
Peggy Santa Maria has been honored by the Endometriosis Association, the San Francisco 49ers and the many women whom have been touched by her kindness. For those wanting to stay in a loving home environment, the Endo Inn is good option. Please contact Peggy at (510) 276-4205 or via email at email@example.com for more information. Distance to Vital Health Institute: 37 miles.”
Thank you Jenn for telling me about Peggy!