Peggy, Roy, & The Endo Inn

Peggy Roy small
Peggy & Roy cutting their birthday cake –  July 2015

You may have heard about Peggy Santa Maria on CBS-TV, LA or read about her in the Contra Costa Times or various online blogs.  I bumped into the CBS-TV LA link, which was aired on their 5pm news on December 25, 2015, and just had to know more about her.  The e-mail address on their site didn’t work, so I reached out to my friend, Margaret, at The Vital Health Institute, who got us in touch.

If you don’t know about Peggy and her husband Roy, they host The Endo Inn.  The what?  As Roy says, “Stay at the Endo Inn while you have your Endo taken out.”  They have converted their guest bedroom into The Endo Inn, a room where a woman and her guest can stay while she recovers from surgery for her Endometriosis, free of charge and for several weeks, if needed.  This includes access to all of the house for cooking, doing laundry, entailing everything that covers “living,” and The Endo Inn becomes “their home.”  Roy and Peggy have been doing this since January 18, 2000.

More about The Endo Inn shortly…but right now I want to focus on the beautiful people behind it:  Peggy and Roy.  I had the pleasure of speaking with Peggy several days ago, spending over an hour on the phone with this purely delightful woman.

Peggy has been plagued with Endometriosis since her early teen-aged years.  To be exact, she remembers that terrible summer day in South Dakota : July 27, 1968, watching Lawrence Welk on his weekly Saturday night TV show.  She felt something happening…she had started her period and the pain was a huge “why???  Only 14 years old.  Why this terrible pain?”  She grew up in a small town in South Dakota, which boasted of a whopping 300 people.  In her 20s, Peggy wanted to get a taste of the world and make something of herself, especially in the field of aeronautics, so she packed up and moved to the San Francisco Bay area of California on February 23, 1975, with nothing but a dream in her heart, a few belongings, and her unexplained pain. She had been told it was normal, what every woman goes through…

While staying with friends in the San Francisco Bay Area, Peggy landed her first job on April 18, 1975, as a messenger at a title company.  It wasn’t aeronautics, but it was a job which boasted of a pretty hefty paycheck for a small-town South Dakota girl.  She didn’t even have a California driver’s license yet, and the company hired her on the spot.  While touring the area and visiting the company’s Oakland office, Peggy was introduced to a co-worker, a man in a pea-green suit, long hair down to his waist in a ponytail, working at his desk there…his name was Roy Santa Maria.  And they’ve been inseparable friends ever since.  Their birthdays are even only three days apart…Roy’s is July 4th and Peggy’s is July 7th.

Peggy and Roy each married someone else.  They always remained friends, yes, but they did not know they were destined to be together otherwise.  Peggy was married in 1986 to Mike, her first boyfriend, a man who didn’t seem to understand her pain.  However, Roy was always the one who was there for her before, during, and after her surgeries, even during their marriages.

In 1977, Peggy’s pain was unbearable.  She went to a doctor who told her she needed a hysterectomy, at 23.  Did Peggy want children?  Nope.  Since she was in 8th Grade, in 1968, she decided she wasn’t going to have children…but she was going to have dogs.  So, for her, the decision wasn’t the heartwrenching one that it is for many women. She trusted her doctor when he told her the “pain will be gone forever.”  Her hysterectomy was going to solve all of her problems…When she awoke from surgery, the first thing the nurses told her was that Elvis Presley had died.  And that she had Endo- endo- endometree- – they couldn’t even pronounce Endometriosis, let alone tell her about it. But, she believed her doctor and that she had made the right decision for her body.

However…her pain returned full-force in 1982, which began a whirlwind nightmarish decade of pain, countless doctor’s visits, and multiple surgeries.  On one such visit in 1986, she saw a newly-referred physician for her pain.  His office was gloomy, dimly-lit, and absent of any staff, nurses, or even a receptionist.  Thinking it was a bit odd, but wanting to see this doctor, she entered the exam room when beckoned.  Upon entering, she was assaulted and raped.  Terrified for her life, she couldn’t fight back; only endure his violation.  Once he had finished, the doctor simply dismissed her, told her she could leave.  Stunned, terrified, and diminished, she returned home, showered, and went to work.  She felt dirty, ashamed…alone…and didn’t know what else to do. Her co-workers sensed something was off, but she didn’t say anything.  She told no one; not the authorities, her husband, her doctors, or even Roy.  How could she?

Peggy became the President of the San Francisco chapter of the support groups run by the Endometriosis Association.  Roy always attended, too.  For a while, the support group met at a hospital.  Peggy came to the realization that hospitals are where you go when you feel sick or are in pain – so, rather then meet there, Peggy opened her house for the once-a month-meetings, or they met at local parks and libraries – anywhere that was alive and well.  It was at one of these meetings that Peggy shared her rape and was enveloped in love from those present.  “It was so healing,” she told me.  To this day, Roy and she avoid driving on the road where the building still stands.

Peggy had also heard about the Endometriosis Association’s crisis hotline, where women with Endometriosis could call and talk to someone who knew exactly what they were going through, because they did, too.  She had taken all of the classes and passed here tests, but was waiting to be told she was Certified and could start taking calls.  One night, a distraught woman called her, and Peggy was worried for the life and well-being of this stranger.  Two and a half hours later, in a much better state of mind, Peggy still didn’t want to let her go, she felt bonded…and finally the woman on the other end of the phone said, “Congratulations, you’ve passed!”  She was the head of the crisis caller hotline giving Peggy her final exam.  Peggy still handles crisis calls to this day and is available 24/7.

In 1991, Peggy and Roy both still worked for the same title company where they originally met.  Peggy had made her way up from Messenger to the Senior Escrow Officer.  Roy was the Chief Title Officer.  She’s never forgotten her dreams of working in aeronautics, but Peggy found a very happy life with her job at the title company where she and Roy lunched together every day.  However, that all changed that year.

Peggy could no longer push through her pain, she could no longer perform her duties, so she left her job and she filed for State disability.  When that ran out, she pushed for Social Security Disability.  It became a two-year battle.

One day, after appealing the disability office’s denial of her claim, Peggy received a decision letter from Social Security.  Denied for a second time.  She threw away the letter in tears.  It was useless.  Impossible.  But who was there to scoop it out of the trash?  Roy.  And he gently prodded her to move forward with another appeal…and another.

While at her 4th disability approval hearing, Peggy was in the courtroom before the Judge and had a bout of diarrhea (one of the many complications of Endometriosis).  She fled the room, and the SSI doctor told the Judge, “There’s your proof in action!”  She was embarrassed and mortified, certain she would be denied once more.  But three months later, she received her approval letter and a retroactive benefits check!  And even more importantly?  Peggy has laid the foundation for many women to follow in her footsteps.  “It will be difficult, but it’s not impossible,” she offer words of encouragement for other Endometriosis sufferers trying for disability.

In 1992, Peggy had a scheduled procedure with Dr. David Redwine.  She and her mother drove up, and guess who went with them?  Her husband?  No.  Roy took a one-week vacation and drove them up.  Such a great friend, a great man.

Enter the Age of the Internet.  1994 brought a whole new world to the fingertips of people everywhere.  This new computer age altered the dynamics of their monthly support groups.  People could find information and interact with others online.  They didn’t feel a need to meet anymore and eventually people stopped showing up to the meetings.  But, Peggy doesn’t give up; she’ll always be there for anyone who wants to meet face to face.  You simply cannot replace the sense of love, anguish, sadness, or joy that you get when interacting with another human being, the sense of peace and warmth delivered in a genuine hug.  So, their support group does meet once in the Spring, Summer, and Fall.   Roy is also there to help any men in the group understand the disease and what they can do to help their loved ones.

No longer happy in her marriage, Peggy divorced Mike in 1998.  And she and Roy were married that same year.  As it should be.

In ’99, she met Dr. Andrew Cook of the Vital Health Institute for pain management.  They’ve remained close friends ever since and even refer patients to each other.  Peggy trusts Dr. Cook and knows that any doctor he refers her to is going to be a great doctor, who will not harm her, and will know precisely what needs to be done.  She has no doubt.

In December that same year, Peggy was walking by the computer room in the house and heard him say, “Stay at the Endo Inn while you have your Endo taken out.”  “What’d you say,” she asked?  And that started it all.  Roy suggested they open their house up to women who are recovering from excision surgeries in their area so they can recover in a stress-free environment.  They presented the idea to several excision specialists in their area (Dr. Andrew Cook of the Vital Health Institute; Dr. Camran Nezhat of the Center for Specially Minimally Invasive Surgery; and Dr. Deborah Metzger), all of whom thought it was a wonderful idea and they would begin to get the word out.  On January 18, 2000, they had their first guest.  Peggy and Roy would have been ecstatic if they ever only had 10 guests, that it would have been worth it just to help 10 women.  But, since they opened their doors, they’ve had 119 guests, and the next guest who stays will be their 120th guest!  The Endo Inn now has 5 1/2 guest books filled with words of love and encouragement from prior guests!

Remember Peggy’s childhood dream to have dogs and not babies?  Molly & Sam were the Endo Inn’s two Dalmatians who loved everyone who came to stay with them.  They were a great healing aid and the Endo Inn’s room is decorated with Dalmations, and Peggy and Roy’s furbabies.  Sadly, they have both recently passed away. Roy & Peggy know that the perfect Dalmatian rescue will come into their lives when the time is right.

Dr. Cook’s office is about 25-28 miles from where Peggy and Roy live.  Dr. Nezhat’s office is located about 35 miles away.  And Dr. Metzger is no longer in practice.  But if you are going to any of these surgeons, or any other near that area and need a place to stay, please consider The Endo Inn.  The rules are simple : 1) you must bring someone with you (could be your family, friend, etc.); 2) if you want get around, you must rent (or bring) a car.  Roy & Peggy won’t taxi you around; and 3) a grocery store is located nearby – you must provide your own food.  Cupboard space is reserved in the kitchen for you to store and prepare your meals.  Many guests stay 1-2 weeks; some stay longer if needed.  There is a large backyard to enjoy and they offer free WiFi, too.  You’re encouraged to write in the guest book and leave notes for future guests.  Peggy leads a bible study at her church they both attend in Alameda once a week and you’re welcome to join during your stay, if so inclined.

In March of 2002, Peggy woke in the middle of the night and was having a really hard time going pee.  As she went to flush the toilet, suddenly a rush of blood filled the bowl.  She woke Roy, who took photographs and they called Dr. Cook.  He referred them to a urologist, and after a barrage of tests and retests, Peggy was told she had been pregnant and suffered a miscarriage.  Wait a minute…she had a hysterectomy in 1977 and had both of her Fallopian tubes and ovaries removed.  But, alas, all of her previous surgeons and doctors had missed one little egg floating around inside Peggy’s pelvic cavity for decades.  But Roy’s sperm found it…The successfully fertilized egg took root in her vaginal wall, but without proper nourishment or an actual womb to grow, it simply could not exist.  And the miscarriage resulted.  This news explained why Peggy had suddenly succumbed to nausea and vomiting in November 2001.  I cannot even imagine the devastation and confusion of this discovery.  I would have absolutely lost my mind.

Subsequent to the miscarriage, Peggy continued to have trouble peeing and passed more blood.  She and Roy went back to the urologist, and after several tests and exams, it was discovered that her urethra was so barraged by adhesions that it was blocked and filling with blood.  Her options?  Surgery or life-long use of catheters.  She didn’t like the risks of surgery with her urethra, so Peggy chose catheters.  For the rest of her life.  Every time she needs to pee…Roy, being the amazing husband that he is, still helps her every time she needs to pee.  She can do it herself when Roy’s not around, but it’s mainly a team effort.  They have even learned to sterilize and reuse the catheters, rather than dispose of them so often.

In 2006, she had three feet of her colon removed due to Endometriosis.  Feeling something isn’t quite right with her digestion, Peggy now has a colonoscopy scheduled for April 15, 2016, to make sure everything is going well in there. As always, listen to and honor your body.

In May 2007, Peggy was watching Good Morning America after Roy had left for work.  She noticed her left eye was blurry and she decided to go to the eye doctor.  They found a “huge cataract” on her left eye and surmised it grew due to her weakened immune system.  She had surgery to remove the cataract, and a second surgery for her right eye shortly after.  In her excitement to me, Peggy nearly shouted it was the best thing she could have done for her eyesight (it was an adorable display of passion).  She no longer wears glasses.  But Peggy believes that if she had a strong immune system, not weakened by Endometriosis, her cataracts wouldn’t have developed at such a young age, if at all.  She now suffers from Lupus, which she feels is also due to her weakened immune system.  We discussed my recent diagnosis of a cataract on my left eye, and both agree that Endometriosis, and medications, can weaken our immune systems and make the body susceptible to attack.  And…steered our conversation to everyone’s favorite : Lupron Depot.

Peggy was prescribed Lupron Depot the first year it came out.  She was taught how to inject herself at home, and took her dose every day as instructed by her doctor.  Every day…for one full year.  She strongly believes it’s poison.  But she also understands that the decision to start Lupron Depot is up to every woman. She will be frank with any woman who asks, and give them a strong dose of “Peggy Love” and suggest to them not to take it, but understands it is their choice; their body. Every woman is different with their Endometriosis and symptoms. And every woman is different with how she responds to treatment.  It’s an individual disease, “It’s not Endometriosis, it’s Peggy’s disease.  It’s Lisa’s disease.  Peggy doesn’t have Lisa’s Disease and Lisa doesn’t have Peggy’s Disease.  But we both share Endometriosis.” She summed it up perfectly.

Roy was laid off from the title company in 2007.  He found work from 2012 to 2013, but was laid off again. Now he and Peggy only receive their Social Security Income, and yet they still do not want any money from any guests.  The Endo Inn is their gift of love and hope to others.  “It wouldn’t feel right,” Peggy told me.

Her pain persisted through the years, and in 2008 or 2009, Peggy had a Medtronics pain pump surgically installed in her tummy, right under her belly button, the size of a hockey puck.  Roy named the pump “Gracie.”  Gracie feeds her pain medication on a regular basis (not Morphine; which she is allergic to, so Fentanyl is used).  And she has been pain-free since.  She needs to have the medication refilled every four months, and Gracie needs to be replaced every seven to eight years, replacing with a new upgraded battery.  But, Peggy is pain free.

Peggy has terrible problems with her feet and the problem was confirmed a year ago when a sore on the bottom of her big toe on her right foot would not heal.  She and Roy went to the emergency room at the County Hospital in Oakland (she and Roy don’t have medical insurance) and the doctor wanted to amputate her right foot.  Peggy told him, “not in your lifetime.  That is my foot and I am keeping it.  Do something with medication to get this healed.”  They prescribed her antibiotics and it healed, but was confirmed then that Peggy has Osteomyelitis in her bones of both of her feet, which will be present for the rest of her life.  She now takes medication and does exercises that strengthen her bones.

Let’s go back to the Vicodin pain medication that Peggy was prescribed by doctors back in 1977 all through 2008 or 2009 when her Medtronics pain pump was surgically put in.  She thought she would no longer need Vicodin since she had the pump, so Dr. Cook started to wean her off of the pain pills.  Peggy’s brain was not liking this and she began to have seizures, so Dr. Cook worked with Peggy and Roy and decided that Peggy would have to take Vicodin for the rest of her life to keep her brain happy.  However, with the concern of all of the Tylenol in the Vicodin, Dr. Cook was able to help and they now have been taking her prescriptions once a month for Hydrocodone to a compounding pharmacy.  They remove the Tylenol from the medication, taking care of that part of the issue, making Peggy’s brain very content.  Peggy says, “Another part of our journey with medication is that we must be very careful, as it will do long term damage that cannot changes things for the good in life.”  In May of 2015, Peggy missed taking her 4:00 am dose of medication and two hours later she had a seizure.  Roy was there and everything turned out okay, but confirmed that Peggy must be taking it as prescribed for the rest of her life.  They again thank Dr. Cook for the awesome care he has given to Peggy and he continues to give.

On September 30, 2011, Peggy was honored by The American Red Cross and given the “Act of Kindness & Philanthropy Hero Award” at a ceremony at The Hilton in Oakland, California.  This award honors individuals in communities who have made a difference through “acts of extraordinary courage and kindness.”  In March 2012, Peggy was recognized by the Daily Review/Contra Costa Times with the Hometown Heroes Award, which was also presented to her at a ceremony in Oakland.

What does Peggy want other women with Endometriosis to understand?  She feels that Endo is like a “benign cancer..it grows like cancer. Everywhere.”  It’s not limited to just our reproductive parts like some doctors would have us believe.  Doctors need to understand and treat the disease as a whole, remove it as a whole, and work toward better treatments and a cure. “Be cautious.  Be careful,” she told me, “Be your own advocate; your own doctor.”  Also, Peggy tells me that she is the conductor of her train in life.  “Don’t let your train derail…keep your train on the tracks,” she says.

Peggy will turn 62 this July.  And she’s dedicated her life to making sure women know they’re not alone with this disease, and that she and Roy are making a difference in so many lives.  And?  She’s beyond thankful for all of the opportunities she’s had to touch the lives of so many women.  Full of “Peggy Love.”  Peggy Love.

Peggy wants to write a book about her Journey with Endometriosis and the lives that have touched hers along this Journey.  She has a Cornwell clock on her mantle that she bought at Macy’s Department Store in 1976.  It’s been with her for this very long roadtrip.  “If that clock could talk…,” Peggy says…”if that clock could talk.”  Well, one day it will in the form of Peggy’s memoirs.

Through all that she has been through : the pain, the heartache, the rape, the surgeries, the let-down, the joys, the miscarriage, the victories, and her life with Roy, Peggy’s faith in God has remained steadfast.  And grows stronger every passing day.  She is a Born Again Christian, isn’t afraid to share her faith, but will also never push it on anyone.  She is about love.  Loving others and living her life with love.  That much was so evident during our phone conversation.

I know that if I ever head up north, whether it be for pleasure or perhaps seeking the services of Dr. Cook, I will have a place to stay at The Endo Inn.  An hour on the phone with this woman, and I know that we will never stop being close friends, bonded Sisters.

If you would like to reach out to Peggy, she has asked that I share all of her contact information.

The Endo Inn is located at 179 Via Bolsa in San Lorenzo, CA  94580.  You can talk to Peggy on the phone at (510) 276-4205 or email her at endonme@att.net.  And if you’d like to help Peggy and Roy with expenses, please feel free to donate to (and share) their fundraising campaign : https://www.gofundme.com/jbpj34ec

**

I will never be able to thank Peggy enough for opening up to me, a complete stranger, over the phone.  Her Journey is a horrific and terrifying one, yet completely full of love and hope.  She and Roy are an inspiration.  Selfless, full of love and a desire to only help others.  We need more Peggys and Roys in this world.  Thank you, to the both of you, from the bottom of my heart.  I look forward to hugging you both one day.  ~Lisa

 

 

 

 

 

5 thoughts on “Peggy, Roy, & The Endo Inn

  1. My goodness. Peggy has endured more horrific experiences and loss than any person should ever have too. Her bravery, and her compassion and dedication to helping other women with endometriosis is astoundingly kind and generous, and I’m so glad that it is beneficial and healing for both her and her guests. And it makes my heart fill with joy to know that Peggy found such a supportive, loving, and kind partner in Roy! Thank you for sharing their story, Lisa!

    Liked by 1 person

  2. Reading Peggy’s story…oh my god. The fact that she’s smiling and has chosen to use her pain for something good is inspiring. I love that she and Roy have had each other this whole time. They’re adorable.
    I’m digesting this post and your other post on the history of endo. It goes back 4 generations on one side of my family and possibly the other side as well. I eat a plant based diet, work out 7 days a week, am hilariously optimistic; I even meditate! Guess what? Sometimes it feels like my own body is trying to kill me. Who knows. Stress, trauma, Eve’s curse or a genetic mutation. Either way, thanks for sharing all this solid information. If privileged white men had periods I wonder if there’d be a little more clarity? 😉

    Liked by 1 person

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