Thursday, March 8, 2018

Influential Women in My Life

Today as I have read many articles, blog posts, and Facebook posts about recognizing the women in our lives whom have inspired us, made a difference in our lives, or empowered us as women, I reflected on the many women I have known and and respected in my life as they touched my life as teachers, mentors, doctors, or friends.  Four women stand out when I think of the women whose influences in my life have been most profound.  I list these women in the order they entered my life.

The first woman on the list of four women whom have most influenced me is my oldest daughter, Keicha.  We always shared an affinity for books.  I remember when she was only in junior high she came home from school with a book she had checked out of the school library for me by Catherine Marshall.  I was going through a painful divorce from her father at the time.  The title of the book was, To Live Again.  She gave it to me to give me hope for my future.  Her insight into my pain, and her response to it showed me just how much this girl had the gift of insight into the needs of others and how she would respond to that need in the best way she knew to respond.  

As a daughter she has been one of the greatest supports I have had as we both grieved the loss of my beloved daughter Julie who was also Keicha’s beloved baby sister.  We talked nearly every day in those early days after Julie’s death.  We cried together and shared our pain and confusion.  We shared books and support materials that we found.  She gave me a listening ear, as I did the same for her.  We seemed to be on the same path as we grieved which was so very helpful to me personally.  We learned that not everyone grieves in the same way at the same rate of speed, but we seemed to walk the same path together.

After Julie’s death from suicide, Keicha joined a suicide support grief group.  She then went on to become deeply involved in doing all that she could to educate others on prevention of suicide.  She has walked in many walks for suicide prevention, raised a lot of money, and written public service announcements.  

Keicha began working as a young teen for a credit union before she even graduated from high school.  She then completed four years of college while working at the same credit union.  She recently retired from that organization after thirty years of service.  

Throughout her adult life, she has been involved in more community events to help those in need than I will ever know.  As a member of junior league she worked on many committees and served on many community boards that included Boys and Girls Clubs and the Ogden City Schools Foundation.  She now is executive director of a community based organization in Utah which provides mental health services for those in need.  

She recently bravely wrote about abuse that she suffered earlier in her life in a blog post. Her courage to confront the painful things in her life inspires me.   I am proud of the way she has used her many gifts to serve her community in a way that brings education and mental and physical health services to those in need.  

She is a woman who empowers other women.  She is also a supportive daughter to me, a supportive sister to her siblings, and a mother who deeply loves and encourages her daughter.  


The next woman on my list is my second daughter Amy.  

Some say Amy is my mini me.  I know that we share many physical and emotional characteristics that have at times made it difficult for us to have a smooth sailing relationship, and yet we also have a bond that is probably one of the deepest bonds I’ve ever had with anyone in my life.  I have a difficult time writing about Amy because she mirrors my life so much that I find I cannot be objective about her when I write.

Amy is is strong-willed woman.  She was born this way.  That has been a gift to her and to me, but it has also presented challenges along the way.  

When Amy was a teen, I was a struggling single mom to Amy, her sister Julie, and her brother Jonathan.  I was barely making a living as a school secretary.  Amy got a job on the day she turned sixteen so she could provide the clothes, make-up, and activities that she wanted to have which I could not provide.  There were times when Amy stepped up and helped with the rent because an emergency here or there meant I was not going to have rent money.  She is sacrificial and always wants those she loves to have the best.  

This determined, independent girl child became a determined, independent woman.  She has a soft spot for others in pain, a smile that lights up a room, and a personality that matches that million dollar smile.  As a daughter, she will tell me “how it is” when I need to hear a word of truth.  She has given me some the best advice about matters of life that I have ever gotten from anyone.  

She has fought hard to come back from incredible loss after the death of her sister Julie.  She and Julie were inseparable, so Julie’s death hit Amy especially hard.  She went through a painful divorce as she dealt with her sister’s death.  Her brokenness has not broken her.  She is strong and resilient.  She is a survivor.  She is more than a survivor.  She thrives as she comes through each phase of her life.

I am incredibly proud of all that she has accomplished in life as an employee, as a partner to her former husband and to her current significant other, as a mother, as a sister, and as a daughter.  


The next person on my list is my daughter-in-law Samantha.  She is married to my son Jonathan.

Dr. Samantha proudly showing off the chapter she wrote in a textbook used in her area of study.

I have known Samantha since she was a teenager when she first entered our lives as Jon’s girlfriend.  I have witnessed her grow from a girl who dropped out of high school to a professor of history with a PhD in history from Northeastern University in Boston, MA.  It would be difficult for me to begin to list all of the accomplishments that Samantha has had so far in her professional life.  She was offered a Fulbright Scholarship to study in Bangladesh.  She worked on her doctoral dissertation by doing research and living in Bangladesh with my son her son for a year and a half.  

This past year, she was hired as a tenure-track professor by the University of Colorado at Colorado Springs, gave birth to a new baby, nursed that baby, moved across country to begin her dream job teaching and working where her mentor once worked and taught, worked on a book she is writing, and bought a new house that she is working on.  All this while being physically separated due to educational pursuits from her husband, my son, and her oldest son both of whom remain in Pennsylvania while my son finishes his PhD.  

When Samantha steps into a class on Woman’s Studies to teach, those women she teaches are in for a treat.  She inspires me with her work ethic, her accomplishments, her intellectual acuity, and her ability to do all of this with a nursing baby at her breast.  Samantha, do you ever get to rest?

I truly have admired Samantha for her many gifts, her hard work, her intelligence, and I love to talk to her about a broad range of topics.  I most admire that she is such a loving and supportive wife to my son and fabulous mother to my grandsons while also always supporting her mother.  

She truly seeks to empower other women through education and social activism.


The last woman on this list is my daughter-in-law Sheridan.

I first met Sheridan when she was in college at the University of Utah when she worked at a retail outdoor equipment store with my daughter Julie while they both worked part-time and went to college.  Sheridan took Julie under her wing at work, and then she and Julie became roommates and best friends.  

Sheridan joined our family after Julie’s death when she met and married my oldest son Ryan.

While Sheridan earned a degree in English at the U of U, she also began a business with her sister.  Together, these two women built a business that has been very successful for many years.  She now is the owner of that business, a boutique in Salt Lake City called Hip and Humble.  She has created not just a successful business, she has created a successful brand.  She also works tirelessly on supporting the neighborhood where her business is located while also working to support other small businesses.  She holds leadership positions in the promotion of Small Business Saturday in November every year.  

Sheridan is an entrepreneur who serves women and empowers the women she employees.  She is a smart business woman with an eye for fashion and a gift for marketing.  She is one of the hardest working women I know.  Sheridan, do you ever sleep?

Sheridan is a wonderful wife and mother.  I so appreciate the way she loves,  encourages, and supports her step-children (my grandchildren) and her sons.  Sheridan empowers every woman fortunate enough to meet her.  She always gives me great understanding, love, and support.  


These four women mean the world to me because they are family, but beyond that they truly have enriched and inspired me as a woman.  I am proud beyond measure of what they have accomplished in their personal and professional lives.  They are accomplished women who look out for other women.  They are honest and authentic.  They give to the community.  They have been able to carve out professional successes while also being wives, moms, sisters, and daughters.  I admire them.  I learn from them.  I am proud of them.  I am richly blessed to have these women in my life.  

I love each of you beyond measure.  

Tuesday, February 6, 2018

Life Lessons Learned From Hair Loss

In 2013, I was officially diagnosed with Frontal Fibrosing Alopecia (FFA).  When I was diagnosed with this hair loss condition, I had never even heard of it.  Somehow, after my diagnosis, in my internet search, I was able to find an online support group for those suffering from alopecia.  Within the online Alopecia Foundation site, I found a group specifically formed to support those diagnosed with FFA.  It was by participating in this internet group that I first found answers to the questions I had  regarding my hair loss journey.

June 2013
My hair right after diagnosis for hair loss.

If you have recently been diagnosed with scarring alopecia, or if you have been suffering from it for years, I am writing this post for you because I hope that you will find support from others whom have learned to live with this disease.  If you have not already done so, I hope you will one day be able to look back on the journey and say, “I am a better person because I have this disease than I was before I had it because now I have learned so much about who I really am as a person.”  

When I was first diagnosed with this condition five years ago, I never would have believed I would one day lose over 50% of my hair, nor would I believe that I would be able to say that I that I have gained more from having this condition than I have lost.  The process of getting to this point has taken much time, many tears, much pain, and a lot of searching for answers. 

June 2014
My son’s wedding
I thought I could still hide my hair loss, but then the wind would blow!

 It was not until at least a year after my diagnosis that I first learned of the Cicatricial Alopecia Research Foundation (CARF).  It is a nonprofit organization dedicated to providing patient education and support for this little-known condition.

In June of 2016, still searching for answers, searching for a cure, and searching for that silver bullet that would give me the solution that I believed had to have, I registered for the 7th International Patient-Doctor Conference in New Orleans, Louisiana, that was sponsored by the Cicatricial Alopecia Research Foundation (CARF).  I was interested in participating in CARF, a nonprofit organization dedicated to providing patient education for the little know condition of scarring alopecia or cicatricial alopecia, because it is dedicated to providing “education and patient support,” while also raising public awareness of this baffling disease, and the organization is also dedicated to promoting research into the causes and potential cures for the disease.
June 2016
My hair loss when I attended the CARF Conference could still be camouflaged  by wearing a headband.
Determined to find answers for this strange and baffling condition that had turned my life upside down, I was just sure if I attended this particular conference and had a chance to learn from all the experts in the field of scarring alopecia, I’d find what I was looking for: a cure.  

And so, in 2016, my husband I journeyed to New Orleans, the first time we’d ever been to this wonderful city, so I could learn more about the disease itself, find answers I had about treatment, and gain the support I needed to live with this rare condition that had struck me seemingly out of nowhere.  

While, the world of hair loss was still a very new world to me, I wasn’t a complete novice.  I’d learned a great deal about my condition from the previously mentioned support group for those suffering from Frontal Fibrosing Alopecia that was sponsored by the Alopecia Foundation online.  

I’d even written a blog post about my journey with hair loss that I had posted in the online support group.  From that post, I’d made a new friend, one whom was not a part of the online support group, but she was one whom was very knowledgeable about the condition and led a support group in a major city on the West Coast.  She had directly responded to my blog post in writing and gave enough identifying information that I was able to track her down by sending an email to her support group.  She responded by calling me.  I think we spent nearly two hours on the phone the first time we chatted.  Finally, and for the very first time, I actually was able to speak with a real live person who had the same disease I did, and who knew so much about it.  She was involved in helping with the CARF Conference, and she encouraged me to register and attend.

My ever-supportive husband also encouraged me to attend the conference.  He said he would accompany me and would spend the time I was at the conference exploring New Orleans.  And, so when the conference time arrived, off we went to NOLA.  

I remember not long after we checked into our hotel, Jim left the room to get ice, and returned saying, “You know you are at an alopecia conference when you start seeing bald women.”  I was horrified.  Bald?  My worst fear would be realized if I went bald, I thought to myself.  

Later that night, the night before the actual conference was to begin, anxious and yet hopeful, I put on my rather new custom-made hair piece that I had recently started wearing to camouflage my hair loss, and boarded a bus hired to carry fellow scarring alopecia sufferers to a pre-conference reception that was being held in a meeting room at a fancy restaurant near the French Quarter.  Before I’d even left the bus, I actually connected with women I’d already met online.   Conversations with these women soothed my nerves and made me feel less alone as I faced actually walking into a room where other conference attenders had gathered for a reception welcoming them to the conference. 
Custom made topper 2015
As I walked up the stairs to the meeting room, my mind went back to so many other receptions I had attended during my career in education.   Those meet and greet gatherings were always so enjoyable because I had a chance to mingle with colleagues that I knew and respected from my professional world.  I always looked forward to the conversations we would have that helped us form more personal connections, but this meet and greet with others afflicted with hair loss petrified me.  My confidence in socializing and in meeting new people had always been high, but after suffering from hair loss, I found social gatherings had suddenly become stressful.  I had lost a great deal of the confidence I had always possessed.  I felt very alone in my struggle, and I also felt very alone as I attended the function.  I only knew a few others because of “conversations” I’d had with them online, and I knew my friend I had spoken to on the phone, but she had many duties that night in making sure that all went well for conference attendees, so I didn’t feel I could latch right on to her for support and encouragement.

I’ll never forget entering that meeting room because as looked around, I was struck by how beautiful the women in that room were.  I don’t know when I’ve ever been in a room filled with more beautiful, gracious, and well-put-together women.  And the hair!  I saw the most amazing hair!  All I could think was, Why are these beautiful women with these amazing heads of hair attending a conference for those suffering from hair loss?  Soon, I was being introduced to others by the friends I made on the bus and by the friend that I made on the phone because of my blog post.  The women I met were so authentic and confident, I found myself asking myself as I studied each woman’s hair style, hair line, and hair color, Is that hair real, or is it a wig or hair piece?  Those of you who suffer from hair loss will probably chuckle when you read this because that is what we do.  We study hair lines, don’t we?

Soon, I learned each woman there was there to learn the same hair secrets I wanted to learn, and I learned we were there for each other.  In fact, by the end of the meet and greet, I was actually asking others, “Is that your bio hair?”  “How much hair have you lost?”  “What has your journey been like?”  “How have you disguised your hair loss?”  “Where DID you get that AMAZING hair.”  Others were asking me the same thing. 

Suddenly, I had a whole new group of friends who knew and understood the journey I had been on.  I could relate to them.  They could relate to me.  We were interested in each other’s stories.  Finally, I was not alone. 

The next morning, the conference finally began.  There was an impressive list of doctors and experts in the field of hair loss listed as speakers.  Always the student, and having attended so many educational conferences during my professional life, I was ready to learn as I entered the conference presentation room armed with my registration packet, a newly purchased composition book, and writing utensils

The first speaker gave an overview of the basics of cicatricial alopecia.  I took few notes, as I already knew the basics:  cicatricial alopecia is a form of hair loss accompanied by scarring.  I knew this.  I was attending the conference to learn more than just the basics about this condition, or so I thought.  Really, deep down inside, I was attending because I was just sure I would find a cure, a solution, something to STOP this dreadful disease from playing havoc with my life, my appearance, and my emotions.  

The speaker giving the overview had my attention, my pen was ready to take notes, but my mind could not seem to accept what I heard her say, “permanent and irreversible.”  I wrote those words down almost against my will.  Even as I knew these words were true, I could not fully accept them as truth.  As she spoke, I found myself thinking: She is a specialist in the area of hair loss, chairman of the board, and she knows all there is to know this awful condition, so how could she start off the entire conference program by saying scarring alopecia is permanent and irreversible? Wasn’t there something she could say that would give me hope?  I didn’t come to the conference to hear that I had a permanent and irreversible condition.  Those words confirmed what I already knew but could not accept.  

In truth, once scarring has taken place where hair once grew, the condition is permanent and irreversible.  The goal is to stop the progress before scarring has occurred.  There was so much unknown about the condition I had that I just could not begin to process it all.  Perhaps, whenever one is diagnosed with a disease that is life altering, it takes time to process what the condition or disease means to the person with the disease.  Words on a screen after doing an internet search that describe a disease or condition or disorder do not convey the full impact that diagnosis has on one’s psyche, nor do those words speak to how difficult it may be to accept and live with a diagnosis.  

Case in point: I attended the CARF Conference two years ago, and I am just now able to write about the impact it had me on my blog.  As a blogger, I had written about my family, the death of my daughter, health issues I had regarding my heart, and about a disastrous fall I had taken which resulted in six months of putting my life on hold, but I could not write about experiencing hair loss.  I had to process much of what I learned for years before I could write in depth about it.  I sank into a pretty deep depression.  I cried.  I hid.  I spent money on wigs, toppers, scarves, headbands, and hats, but I could not write about it all.

When I attended the CARF Conference in 2016, I was sure I would find the perfect treatment option for me so I could stop the devastation that comes from losing one’s hair, and so I could stop the sometimes “severe itching and burning” in the scalp that accompanies this disease.    

I did not find a cure for this disease at the conference.  No one has.  I did not find the silver bullet that would stop my hair loss.  My hair continued to fall out.  Today, much of my scalp is now covered with scar tissue that is permanent and irreversible.  

At some point in my journey, I decided that if I could even find a treatment or solution for the itching and burning that accompanied flares to the scalp that I’d be happy even if the hair continue to fall out.  Somehow, I did finally come to a place where most of the time I do not often suffer from intense pain, burning, or stinging in my scalp.  My scalp rarely feels like it is crawling these days. In fact, my dermatologist recently told me that my scalp is the “quietest” it has been in all the years he has been treating me.  But, I am not cured.  I may finally be in more or less remission, or my disease may have more or less “burned out.”  Only time will tell.  

I do not know what caused me to be at this stage in the physical manifestation of the form or scarring alopecia that I have now apparently entered.  I dabbled in using many of the drugs known to help with the disease, but reactions to the drugs, or unwanted side effects caused me to not use the treatments.  I stopped all medications and treatments except for the rare days when I have flare.  On those days, I apply a small amount of clobetasol solution, or tacrolimus to inflamed area on my scalp. 

When I was diagnosed, my disease was so advanced, and there was so much scarring that really there was little I could do about the condition. I had an advanced case before it was ever treated because I was not diagnosed until I had significant scarring.  Early diagnosis and treatment is thought to give the patient with scarring alopecia a better chance for stopping or at least slowing down the progression of the disease.

Since those early days in my journey into the world of hair loss, I have learned there is more to this journey than just finding the right medical treatment.  This journey involves doing a lot of work in the innermost parts of the mind, the heart, and the emotions.  As I have sought healing for this condition, I have learned healing is an inside job.  I have learned I must heal from the inside out.  

February 2015
My 70th Birthday
Wearing a hat which is pulled down to hide my hairline at the beach in Florida.

As I look back on the nearly two years since I attended the CARF Conference, I have to ask myself what I have learned about myself.
  • I have learned that my journey with hair loss is similar to the journey of loss that I experienced after the death of my daughter.  Certainly, the loss of one’s hair can never be compared to the loss of a loved one, but the journey itself is one also marked with five to seven stages that have been identified as the stages of grief.
  • I’ve learned that my identity is not found in my hair, my appearance, or how I present to the outside world.  Learning this truth, is a gift.  I have more freedom in self-expression now than I had when I had a head covered with hair.  My identity has nothing to do with how I look or how others see me.  
  • I have learned that I am resilient.  Resiliency can’t be taught.  Resiliency is only achieved when one goes through loss, trial, or hardship.  Resiliency is also a gift because according the definition to resilience in Mirriam-Webster, it allows one to adjust to and easily accept misfortune or change.  I don’t think that most of us actually easily accept misfortune or life altering change, but I do think that once we learn that we are resilient, we find it much easier to be resilient each time we meet misfortune.
  • I’ve learned that the fear of losing most of one’s hair is much worse than actually losing a large portion of one’s hair.  Quite honestly, in those early days after I was diagnosed with FFA, and after I saw the photos of what might happen to my hair, I was consumed by fear.  After the initial shock of the diagnosis, I went into denial.  I told myself I would have a different outcome than the poor women in the photos illustrating FFA which can be found in the literature about this disease, yet when my appearance began to resemble that which I feared most, I no longer was afraid over how I might look.  
  • I have learned that as in so many other areas of life, acceptance is the first step in getting on with the hard things in life.  Acceptance itself is a process.  It takes time.  It takes making peace with those things over which we have no control. 
My New Wig
November 2017
Recently, as I spoke with another hair loss sufferer, we spoke of how we are almost thankful that we have had to have this journey because we have learned so much about ourselves on the journey.  We have learned resilience and authenticity.  We’ve learned to adapt and live life to the fullest anyway.  We’ve learned that reaching out and helping others along the journey gives us joy and enriches our lives.   

I am passionate about being involved in educating others about this disease.  Beauticians and doctors are on the front lines when it comes to being the first to observe what might be happening when a woman first begins to show signs of losing hair, but unfortunately most beauticians and many, far too many, doctors have never seen scarring alopecia and don’t recognize its symptoms.  I consulted the first dermatologist six years before I was diagnosed.  During those six years, I consulted three more dermatologists.  None recognized my disease until I finally insisted on a biopsy.  By that time, I had advanced and significant loss.

I am passionate about research for this disease because I do not want my daughters, my sons, my grandchildren, my nieces or nephews, my cousins, my siblings to have to suffer from this terrible condition.  I don’t want anyone to go through the effects of this disease.  It breaks my heart when I read of each new diagnosis.

I am passionate about providing support for others whom have been diagnosed with scarring alopecia.  I am so very grateful for those whom went before me because of the way they have taken an affliction and turned it into ways to help others.  There are so many of you out there that have led the way for me.  Thank you.

For all these reasons, I intend to write more about the hair loss journey I have been on. I will add my voice to all those others suffering from little known orphan diseases.  Scarring alopecia or cicatricial alopecia is just one of many immune disorders that qualify as orphan diseases. 

This is my disease.  I own it. I will not let it own me.

Girl Friend Party
Christmas 2017
Wearing a wig and my favorite boots - a winning combination.