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Ryemarkable Jane Riley!

Name: Dr Jane Riley PTDPTMS


Tell us about you and your family:


I am the youngest of 6 children (5 girls & 1 boy) raised in Larchmont Manor.  We grew up swimming for the Larchmont Shore Club. My dad ran the Westchester County Swim meet for over 40 years, hence we all grew up with community as a main focus.


Rich and I have been married for over 30 years and we have been living and volunteering in Rye for 15 years. We have a girl and a boy and I have a step-son and a dog Travers. I have been involved with Rye schools, athletics and professionally in the Rye community.  Some of you may have been involved in the Rye Angelman Syndrome Walk supporting one of our local students.  Now that my children are out of Rye schools I am more involved with the Rye Y.  My husband is in the thoroughbred horse racing business so we live in Saratoga Springs NY in the summer.


What are some of your life’s accomplishments?


I started my adult journey attending the United States Military Academy, West Point. I was recruited for swimming, but the most difficult factor was at the time there were only 4% women admitted. Coming from a class of 36 girls at Sacred Heart in Greenwich, this was a big change.  The West Point women had something to prove, so they were harder on the female cadets than the men. Driving tanks and becoming an expert rifleman were thrilling experiences I'll never forget.


After a concussion left me with less than 20/20 vision, my goal of becoming a helicopter pilot was crushed.  I left the army and finished up at Villanova University, where my father and family attended.  After graduation, I lived in Jackson Hole, Wyoming and worked in hospitality.  After a time I came back to New York and worked as a banking officer for US Trust in Bankruptcy & Reorganization for such companies as Eastern Airlines and Zale Jewelers. 


After 8 years on wall street, I felt as if I was simply transferring money from one account to another.  I wanted to contribute to society.  I left banking to start my 3rd career, by attending Columbia Medical School to earn my Master’s in Physical Therapy.  I was thrilled and honored  to be helping others through difficult challenges in their lives. Then I was helping my 18yo step-son with college apps and changing my 2yo daughter’s diapers! He ended up  attending my family alma mater, Villanova. 5 years later, I was pregnant with my son and at the same time, I went back to Columbia to get my Clinical Doctorate in Physical Therapy.  All of these challenges did not come close to what was to come my way. 


Wow! And what has been your biggest challenge?


At age 16 my daughter was rushed to the ER and had her 1st surgery.  Her ovary was torsed and endometriosis was everywhere.  She lost her ovary and the toughest challenge of my life began. Being in the medical field I thought I knew what endometriosis was.  But I quickly learned no one does.  Often people say, “Oh I had that” or “My sister…..  Isn’t it solved by hysterectomy?”.  Endometriosis has 4 stages.  My daughter is stage 4. My medical side thinks endometrial cells are actually amazing cells.  They can grow anywhere in the body. As a mother, these cells are sucking the life out of my daughter.  They attacked her ovary, appendix, intestines, and worked their way to her spine. 6 surgeries later, at 6 different hospitals, (in 3 different states) and a procedure to donate her eggs at 18yo as a back-up to have children, my daughter has endured all this and is only 24 years old.


Many gynecologists/surgeons claim to know how to treat endometriosis, but they do not. Then when you find someone who is an “expert” they only do research and do not treat or do not take insurance or live in Europe.  Even though endometriosis does not start with the letter “C” (cancer), it is abnormal cells growing all over your body wreaking havoc on the patient and family’s daily life.  Since my son was 11 he has watched his sister literally writhing in pain. How does a mother explain that? We have had unbearable stress on our marriage. We all feel out of control and unable to help.  Every facet of the family is affected.


How are you helping your daughter cope on a daily basis? 


As with most female issues, my daughter lives in silent pain.  She has become an amazing actress.  She copes by hiding her pain.  But sometimes she fails and often has to cancel on “fun” plans, and has to always think ahead and manage her medications all on her own.  One second she looks great and has a lower level of pain, and can even laugh.  The next second she is crying in pain.  Observers don't understand endometriosis, hence are very dismissive.


My daughter and I have numerous daily phone calls to encourage her to get through work, check her list of meds and back up supplies to make it through the day in pain. My daughter has lost her hair due to treatments. She has used eastern medicine and special diets.   She has been put in medical neverending menopause and yes that means the MENOPAUSE that we all complain about but my daughter has to manage in her 20’s. She has procedures every 2 months to cut the pain and imaging to follow the endometrial growth. My daughter just wants to be a normal young 20 something.  She has been fighting this disease through high school, college, grad school and now her job.


SHE IS AMAZING. But she is tired, I am tired and emotionally drained, but I can’t give up hope that one day she will be able to live a normal life.  Not knowing and my daughter being in constant pain is certainly my biggest challenge.  My family, thank goodness there are so many of us, they have been a blessing.  Searching on the internet, making calls, or just giving me respite.  I could not have done it without them.  We have not overcome this, so if praying is what you do, or distraction, all would be amazing support.  Like my daughter, I too just want to enjoy life. Pickleball anyone!


What are some (small or big) ways we can support you? 

 

Thank you for asking.  We push through.  Something small is that I normally have shoulder length hair, and daily my hair is in a ponytail.  Now, with long hair, it is a hassle and every night when I roll over and pull my own hair and I am reminded of my daughter's pain. I am growing my hair until my daughter’s pain is under control for 1 year!  She is not there yet, but when she is I will shave my head and donate my hair  to Soul Ryders.  Maybe the Rye community can rally around my gesture and Ryemarkable Mom’s can film The Big Shave to celebrate the small win with me and continue the spread of awareness!



What should the community know?  


I came from a family where you didn't miss anything when you had your period.  My daughter started  her period at 8yo.  I asked my gynecologist if there was anything I should look out for.  His answer was no.  This is not true, menstruation beginning before 11yo and shorter cycles are increased risk factors for endometriosis.  I should have taken my daughter's early complaints of pain more seriously. 


What I did learn is that her tolerance for pain was so high, when we did get diagnosis it was stage 4 right from the start. Not everyone will have endometriosis, but please listen to your daughters, and do research. On average it is 7.5yrs from onset of symptoms to when someone gets a diagnosis (diagnosis does not mean help). If your gynecologist does not listen to her, take her to another, and another and another. Go to the doctor's appointments prepared to ask tough questions.  Be an educated consumer on all female issues.  Don’t let it get to stage 2 or 3, or god forbid, 4. My daughter does not want to be reminded, or talk about her issues, but I am here for others as needed jwrppt@gmail.com.



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