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.

January Health Scare

New Year’s Resolutions

I don’t make resolutions, because I know I won’t keep them, but I do try to evaluate the habits I have that keep me from living life the way I want to live it.  At the beginning of a new year, I think of getting up earlier, being more productive with my time, writing more, losing weight, exercising.  I doubt I’m any different than anyone else.  I just hope to look at the new year through new eyes so I can gain a new perspective. (In the photo below, I am using 2018 glasses as a headband.)   

I had such hopes for the first of year.  I was for sure going to get back to blogging.  I have truly missed it.  I knew the only way I would get back to blogging by reading, commenting, and writing again would be if I made some changes to my daily schedule.  I would have to stop settling in my chair with a cup of coffee, my iPad, and checking out Facebook, and my new time waster,  Instagram.  Honestly, I have wasted, yes wasted, way too much time with this kind of start to the day.

I read two newspapers before I get going, so by the time I even think of getting up out of that favorite chair to make my breakfast, the morning has been whittled away to nothing.

Yes, I resolved, this year, I was going to get up early and get going with being productive in 2018.

On the January 1, 2018, we didn’t get up early because we had been out celebrating too late.  We aren’t kids anymore, so staying up partying until way after midnight means that we start the new year by sleeping in.

The night before on New Year’s Eve, we spent a wonderful night celebrating with my cousin and her husband at their beautiful home.  They have a group of friends from high school days that they celebrate with, so we were happy they invited us to join them.  I said we were the chaperones since these “kids” are half a decade younger.  We had so much fun.  The party was a great success.  Our host cooked a marvelous meal.  After eating, we watched the fireworks that were set off from the top of Pikes Peak, then we drank a bit of champaign, sang Auld Lang Syne, toasted each other and the new year, took a few more photos, and then headed home.

We had plans for the first day of the year that included taking down Christmas.  Jim and I decided that the tree would stay up another day because we were too tired to take it down on January 1st.  In fact, we didn’t take down any of the Christmas decorations.  We would do that the next day, on January 2.

Early in the morning on the second day of January 2018, my husband woke me out of a deep sleep by calling my name in a voice that startled me.  When I was finally able to respond, he said, “I don’t feel well at all.  I’m sweating.  At times I’m hot, then I’m cold, and I am really dizzy.”  I was immediately out of bed and standing next to him at his side of the bed.  Indeed, he was sweating.  He was in a cold sweat.  In fact, his forehead was very clammy.  I asked what he was experiencing, and was told he’d been like this for at least 45 minutes.  He said he’d gotten up and made his way to the bathroom but barely made his way back because he was so dizzy.  

I ran for the blood pressure cuff and took his blood pressure.  It was extremely low.  I asked what he wanted me to do, or I guess I actually gave him two choices: did he want to go to the hospital by car or by ambulance.  I asked about other symptoms while I quickly threw on clothes and shoes.  He said he wanted me to drive him to the hospital and said he had no other symptoms.  (He actually kept a few important facts from me because I think he knew I would have called an ambulance had I’d known all his symptoms.)  His dizziness made it difficult for us to make to the car, but we made it.  The nearest hospital is only ten minutes away, so I wasn’t too concerned as I made my drive, but honestly, I kept wishing I’d called an ambulance.

Once in the ER, he told the nurses that he had numbness in his left arm and left foot.  He also had chest pain.  That is when all the tests began as they tried to find out what was going on with him.  

The hospital near us is a new one, and the hospital and the staff are wonderful.  We had help immediately.  He had a CT scan, EKG, and blood work done in less than an hour.  All tests came back looking good, but Jim continued to be dizzy, and he continued to have severe numbness on his left side.  

He slept from the time I got him there around 7:00 a.m. until 1:00 p.m.  After speaking with specialist at the University affiliated hospital across town, it was determined that Jim would be transported to that hospital for further testing and observation.  It was suspected that he had experienced a TIA (transient ischemic attack).  

After nearly twelve hours in the emergency room of the original hospital where I had taken him, he was transported to Main by ambulance.  I was skeptical that anything would happen that night in the way of talking to a neurologist or of having tests.  I could not have been more wrong.  

Jim was admitted to a room in a new wing of the hospital devoted only to stroke victims.  On the very day that this new Comprehensive Stroke Center for southern Colorado was announced in the news, Jim became one of its patients.  We could not have been more impressed.  He was barely in his room when he was visited by the neurologist who already had been speaking with the ER doctor and had seen his tests from the ER.  Soon, a hospitalist was at his bedside also.  That night Jim had three MRIs and was constantly monitored while also being evaluated for stroke symptoms continually.  He was also given many tests for his heart.  

Thankfully, all tests came back not showing a stroke, and his heart also checked out well.  (Jim had a heart attack when his LAD was 95% blocked in 2011.)(click the highlighted area to read about this event) As a result of all of the testing and his symptoms, it was determined that Jim most likely did have a TIA.  The first twenty-four hours after such an event are the most dangerous, so he was monitored until late in the day of January 3, then after making a few changes in his medicine, he was discharged, and we went home with grateful hearts because it all could have been so much worse.  

I did not expect to begin 2018 with a medical scare.  We both have had a big wake-up call when it comes to listening to our bodies.  A word of caution to us all:  If it seems things are really off, if dizziness is nearly knocking one to the floor, if blood pressure is extremely low, if parts of the body are numb, then get to the hospital, preferably via an ambulance.  Time is of the essence if one is experiencing a stroke.  Also, a TIA is not to be dismissed as a small matter.  Within the first 24 hours after such an event one is at risk of a stroke.  Also, one is more highly at risk of having a stoke after experiencing a TIA.  

We have both resolved to focus on making better choices when it comes to our health.  Jim is working hard on his diet and is losing weight.  I am trying to do the same.  We are trying to eat at home more and eat out less.  We are trying to get to bed a bit earlier.  We are exercising.  Jim is always better at that than I am, but we both are trying to do better in 2018 than we did in 2017.  

Here’s to a healthy and happy 2018 for us both!

Today, we took it easy and rested.  I didn’t want to go to church with all the flu that is out there.  I also felt we just needed to rest up because yesterday I felt like I was fighting off some bug.  Thankfully, today whatever was making me achy and chilled and tired headachy and sick feeling left me.  We went for a nice walk this afternoon.  As we walked, linking my arm through Jim’s, I said, “You know I don’t take this ability to walk together on this crisp January afternoon lightly.  We are so blessed to have each other and to be healthy enough to walk and enjoy life.  That opportunity has been denied so many from our same age group."  We’ve lost friends and acquaintances in the past year to heart attacks, cancer, falls, and other illnesses.  

One thing I know for certain:  we have absolutely no guarantees in life.  Resolutions may be the thing we think we should do at the beginning of the year, but I have decided that for me instead of worrying about how I am spending my time, I’m going to focus on being grateful for the time I have to spend.  I think gratitude is a great informer when it comes to making choices on how to spend time.

Each day is a gift.  Each moment we have to share with each other is a treasure.  If we spend too much time staying up late reading, that is ok.  At least we can still read.  Besides, we love sitting side by side reading late into the night.

If we sit and sip coffee all morning and don’t accomplish anything, that too is ok.  We love our morning routines of chatting, reading the newspaper, and catching up with the world.  

If Jim has to hustle off to work, I try to hustle off to do something productive while he is gone.  I’m grateful he can still work and that he loves his work so much.  

On our way home from our walk today, we changed up the route a bit.  It threw Boston off his game.  He is used to our same routine and route.  As we approached our home, he threw us off a bit too when he suddenly jumped up on a bench in our neighbor’s yard.  He used to love to jump up on walls and benches as a pup.  Today, I guess he felt young at heart and just had to jump up on that once favorite bench of his like he did when he was younger.  Or maybe, he just wanted to have a closer adoring look at his master.  Maybe he too was grateful for walk on a beautiful Sunday afternoon in January and he just want to make sure his master knew it.  These two love each other.  This photo is priceless.

Life truly is best lived in the moment.  Treasure each one you have with your loved ones.  Let them know it by giving them one of those adoring looks when you gaze in each other’s eyes. Or, you might just want to kick up your heels and do what you used to love to do when you were younger.  Moments like these are something to bark about.  

Daughters ~ A Mother’s Treasure

Few in life “get me” like my daughters.  Few in life understand me like my daughters.  There are no other women in my life to whom I am closer than my daughters.  I trust them implicitly.  They are wise beyond their years and have spoken truth and wisdom into my life at times when I most needed truth and wisdom spoken to me by someone I respected and trusted.  My daughters are those women.  I can’t even imagine my life without my daughters.  Thank God, I was blessed with three of them.

Tomorrow is my oldest daughter’s birthday.  

Keicha Marie Christiansen graced my life with her birth 

on the 25th day of January over forty years ago.  

(I’m not telling you her age because I don’t know if she wants me to tell you.)  

Her entrance into my life seemed to be a metaphor for her life.  Born a day before her due date, she was early.  She is always early.  She never runs late.  Her birth was easy.  I had three hours of labor before she was born after there were only three hard labor pains.  She then presented herself with great efficiency. She is still efficient.  She doesn’t waste time or energy.  She just gets things done.  She was a petite baby.  She is still petite.  She was beautiful, and she still is.

Keicha and I on her 40th birthday

This past week, Keicha and I were chatting by phone as she left work and headed home.  In the midst of the conversation, she said, “Oh cool.  They have the shelves up in the new library.  That is so exciting.  I can’t wait to go in and see the new library.”  I asked where the new library was.  She then told me it was the old library that been remodeled.

My mind went back to those early days of Keicha’s life and my memory recalled days of watching her run into the building to get books with such great excitement.  I remembered her holding my hand and walking along the wall to jump off at the end and run to playground that was nearby.  I remembered how from her earliest days she loved books and libraries.  Keicha is a reader.  She always have been.  It did this mom’s heart good to hear how excited her adult daughter was to get to go back into that old library now made new to explore the new surrounding and find new books.

I guess if she has one downfall it would be that after checking out stacks of books for summer reading, she would stash them under her bed and forget to return them.  She read Gone With The Wind and the age of thirteen and that began a very long fascination with all things related to the book and the movie.

Keicha and I have shared many books, book talks, and ideas from books for so much of our lives.  I love that about Keicha.

It has been said that a daughter is a little girl who grows up to be a mother’s best friend.  There is much truth in that statement.  As a young mother, I had no idea that my baby girl, my toddler, my teenage daughter would someday become such a treasured and trusted friend.

Keicha is many things to many people.  She is an awesome mom to Gillian.  She is a much loved sister to her siblings.  She is a wonderful companion to her significant other.  She is a competent, hard-working employee.  She has worked hard within her community over the years through volunteering for Junior League, Boys and Girls Club, Ogden City School Foundation, and she works tirelessly in the area of Suicide Prevention.  There are more organizations and boards that she has served, but I don’t even know what they all are.

I’m very proud of all that she does for so many, but most of all I am just very proud to call her my daughter.  I don’t tell her enough how much she means to me.

Keicha, you are truly a treasure to me.  I do not know what I would do without you.  We have traveled down some very rough roads together.  We have had to stand shoulder to shoulder on the very worst days of our lives, the day we lost your sister Julie, and those hard, hard days that came right after that day that changed our lives forever.

Together we walked through those dark, dark day after Julie’s death.  Together, we cried, we screamed, and yes, we even laughed hysterically at a very inappropriate time not long after Julie died.  We have stumbled through seven and a half years of learning how to live after great grief.  For whatever reason, the two of us, you and me, seemed to always be on the same wave length as we dealt with our great loss.  How would I have made it without you?

I wish this bond we have which was forged out of grief had never had to happen.  I wish we could have just had more and more days of you three girls laughing together while making your mom a bit crazy, but that was not to be.

We have learned that we can do hard things.  We learned that together.  You have inspired me, made me proud, and always been an honest sounding board.  You have told me the truth when I needed to hear it.  You are smart, funny, have a flare for making your surroundings beautiful.  You have style.  Oh do you have style.  Your taste is exquisite.

Keicha, you are my daughter, my beautiful daughter.

I am so blessed.

Happy Birthday!

2017 - A Reflection

2017

A year I won’t soon forget.

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A year that in many ways, I’d just as soon forget.

 2017

A year captured in photos and in my journal. 

January

We share a footstool.

We share a life.

One cold evening in January, as my husband and I sat side by side, I snapped a photo of our feet as we shared a footstool together.  He is, as is typical, wearing a pair of his unique socks.  I love this side of his personality: he wears interesting and cool socks.  I am barefoot, but my nails are done in a shade that I wore most of the year: most likely Senorita Rosalita by OPI.  

Perhaps, in many ways, this is my favorite photo of the two of us for the year.  It captures much of our unique and very different personalities.  It gives a glimpse into our tendency to sit side by side sharing a space as we share our lives, and it represents the deep comfort that comes to me as we share not just our home and hearth, but how we share our lives in a mostly peaceful and contented state.  Evenings spent side by side, find us reading, recapping the days news developments, or I might write in my journal while Jim watches some movies, or t.v. programs on his iPad. This to me is true bliss.  

I began a teaching job in January.  I worked five days and became very sick on the third day.  I resigned on the fifth day.  The rest of the month I was sicker than I had been in years with a virus that ended up giving me bronchitis that seemed to hang on forever.  

In January, on my son’s birthday, I learned that he and his wife were expecting a new baby, a boy.  It was the great surprise, and the great blessing of the year.  

February

We planned a get-away in February for a combined Valentine’s Day and birthday celebration for me, but bronchitis hung on, and I was not well enough to leave home.  Needing a bit of cheer and some flowers to brighten my days, I bought some miniature violets to add to an arrangement on the living room coffee table.  Flowers bring hope of spring in the midst of winter.  

I’ve learned I can’t live without flowers in my environment.  

Jim took me out for a special Valentine’s Day lunch at the Cliff House in Manitou where I saw crocus blooming in the garden as we walked in for lunch.  I couldn’t believe how much joy I felt upon seeing the early indicator of spring.  Later in the month my daughter Amy and her daughter made the journey to my house so we could celebrate our birthdays together.

March

The weather improved.  My health improved.  I was able to get out of the house and exercise.  I’m so grateful for the beautiful place where I live.  Our home is only fifteen minutes from major shopping areas, but when I am in the neighborhood, I am surround by amazing rock formations, trees, and views of the mountains.  Some of my happiest times are spent walking with Jim and Boston in our ‘hood.

My journal records the work I was doing in becoming “unstuck.”  As I have progressed through the grief journey I have been for the past seven years, at each stage of the journey, there have been times when I felt that I was getting stuck in one or another area of grief.  Working with a therapist has helped me greatly as I have mentally, spiritually, and emotionally processed the death of my daughter Julie.  

I clearly remember a day in March when these words words that Julie had left on sticky note on her desk came back to me: 

Live Well!

As I have struggled to become unstuck, these words spoke to me so often in 2017.  The words spoke to me as I continued to fight through the effects of living with autoimmune diseases that have brought changes to my health, my appearance, and my ability to function fully.

Words can become touchstones in my journey through a year dotted with political unrest and division, broken relationships, compromised health, and the effects of an aging body.

I often write quotes or scriptures on 3 X 5 cards that I keep next to my reading chair.  I pick these cards up and re-read them when I am feeling anxious, overwhelmed, sad, or in need of wisdom.

Not long after Julie passed away, I wrote these words from I Peter 5:10 on a slip of paper and placed the note on my refrigerator.  These words are a daily reminder on how God through Christ continues to restore me, make me strong, firm, and steadfast.

March was a hard month where I saw so much division in relationships.  I personally experienced great loss of a relationship which I value greatly and hope to see restored.  

Psalm 42,  a Psalm my pastor preached on in March, spoke so deeply to me.

From my journal:  “Mark says we are not to ruminate about our problems.  We are to talk to God about them.”  I began to ponder how I ruminate.  I  have sought to turn my focus on God, talking to Him about my problems.  My roommate from college, wrote a poem based on Psalm 42.  She wrote:

Why are you cast down, O my soul?

Why this unrest within me?

Hope thou in God, for I will give praise

For His answer, whatever it be.

The Psalms & Ecclesiastes in  Poetry

by Elizabeth Cary Bishop
Published by Gospel Folio Press

April

April, what a glorious month.  April brought me the best gift of the year.  My eighth grandchild Leon Roberts Christiansen was born in Scranton, Pennsylvania, to my son Jonathan and his wife Samantha.  He was also welcomed home by my grandson, and Leon’s big brother, Atticus.  This is a photo of this precious child after his first bath.  

In April, Jim and I took a trip to New Orleans.  We needed to get away.  What an escape this wonderful trip was for both of us.  We stayed in a wonderful B & B called Ashtons.  Our room was spectacular.  So was the food, the ambiance, and the company of others staying there.  The flowers on the fireplace in our room were the perfect touch.  

The B&B has the most amazing porch.  We, two who love to porch sit, spent a lot of time on this fabulous porch.  Jim took my portrait.  One is me before I was ready for the portrait.  The other is the official portrait.

May

My two October babies, the grandchildren born 36 hours apart in 1998 graduated from high school this year.  I flew to Utah to spend time with daughter Keicha and to celebrate Gillian’s graduation.  Her mother gave her a nice party after graduation.  Here is the beautiful Gillian with her mom and dad.  

A few days after Gillian’s graduation, Gillian, Keicha, and I flew to Colorado for Mason’s graduation.  Here is a photo of my very happy daughter Amy with her handsome son, Mason.  

June

In June, Jim and celebrated twenty-five years of marriage with a trip to Santa Fe, New Mexico for a long weekend touring both Santa Fe and Taos.  I snapped a selfie of us as we headed out of town on our anniversary trip.  

As with any journey, who you travel with can be more important than your destination.

I have been very, very blessed to have this man, the love of my life, as my constant, steadfast, supportive, loving, and most caring companion on the journey we began twenty-five years ago.  We are hoping for another twenty-five years together!

July

In July, the other great event of the year took place.  My son Jonathan and his wife Samantha returned home to Colorado.  Samantha was hired to teach history in a tenure-track position at the University of Colorado at Colorado Springs.  We are so excited to have these two and their two sons back home in Colorado.  Jon won’t officially move here until this coming spring as he finishes up his PhD in Scranton, PA.  

A mini-family reunion was held to meet new grandson Leon and to welcome Jon, Sam, Atticus, and Leon to Colorado.

A mini-family reunion

Atticus, Samantha, Leon, and Jonathan

August

A few years ago, Jim and I built a small patio in our front yard.  This has become my favorite spot to spend summer evenings.  We sit and rest there after our summer evening walks, or sometimes we even head here to eat a light supper.

In August, the eclipse was experienced and viewed from this patio.  I was fascinated by the designs cast on the stones by the shadows made by the sun and and the moon.

During much of late spring and all through the summer, I experienced the unpleasant and unwanted effects of high levels of inflammation in my body due to the inflammatory condition which I have developed that has caused me to lose much of my hair.  I was in pain throughout my body, tired, and felt generally unwell.  I went on the medication Plaquenil.  It brought down the high levels of inflammation and it even helped with the pain I had in my hips and shoulders.  However, the side effects of intolerance to heat, to the sun, severe gastric problems, and drastic drops in insulin levels caused me to stop taking the drug.  I now am not treating my auto-immune condition with any medication and am doing well.  I find that I have times when I have flares, and then I have times when my system is “quiet” and I seem to be in remission.  I’m learning to live with and cope with having a chronic health condition.  I’m learning to take the good with the bad and hope for the best.  

September

We made the second trip of the year to Grand Junction to see my 101 year old mother in September.  She is still doing remarkably well.  

October

Jim and I traveled to Chicago in October to celebrate his birthday. This was our first trip to Chicago, but I doubt it will be our last.  We loved our time in Chicago! Even though it was his birthday trip, Jim surprised me by getting us a room on the top floor of the Thompson Hotel.  We had a view of Lake Michigan and of the shopping and restaurant area that was located right outside the door of the hotel.  In the nearly weeklong time we were there, we spent our time eating, walking the Magnificent Mile, exploring the many museums in Chicago, shopping, and because my son Ryan was in town for business on the last evening we were there, we even go to have dinner and spend some time with him.  We also were able to get tickets to see Hamilton.  

November

Thanksgiving Break meant that son Jonathan and his son Atticus were able to take a break from their academic studies and come to Colorado for a reunion with the Jon's wife and baby.  We also were able to spend time together as a family.  I can’t wait until the academic year is over and Jon and Atticus move here permanently.  

For Thanksgiving, Jim and I traveled to Northern Colorado to spend the weekend with daughter Amy and Jewett in their brand-new home.  This mom is so happy to see her daughter happy.  This year has brought so many blessings to our family, and this happy relationship between Amy and Jewett is one of the great blessings of the year.  It was also great to see my grandchildren Mason and Hannah.  

December

Right after Thanksgiving, I noticed that the overachievers around town already had their homes brightly lit and decorated inside and out for Christmas.  I began early with a bit of decorating, and then decided to cut the decorating I normally do in half.  I only set out Christmas decorations in the upstairs part of the house.  I also took the time to ponder what activities would bring me the most joy and the least amount of stress as we went into the hectic holiday season.

From a  December 12 entry in my journal:  

4:00 p.m. Tuesday afternoon.  The light is fading, but the glow of the afternoon fellowship brightens my heart while my body sinks into my cushy chintz chair.  The light on the page comes from the Christmas tree next to me. So often I long for friendship, fellowship, and yet seldom do I provide the hospitality that fosters such connection.

These moments of contentment need to be captured.  Snapshots of my surroundings are sent to my memory bank, yet while I love my comfortable home, it is when it is filled with others that I have the most joy.  

...The ladies (ladies from my Bible study group), six of them came at 11:00.  They left a bit after 3:00...Everyone made themselves at home, they were at ease, and open.  

...As the ladies left we talked about how this is such a busy time of year, but it is nice to set aside time for fellowship, for connection with others...It truly was a day when we focused on being present rather than on giving presents.  (I took no photos that day.  It is good sometimes to just connect and not record by taking photos!)

So much of December was like that for me.  It was a time when I tried to be present with myself and with others.  There were many gatherings.  One with my high school friends.  Another with the couples from the neighborhood.  Then there was a smaller gathering at the home of a neighbor.  Our writing group, which had not met through all of 2017 met for lunch at the home of one of the ladies.  All in all, the month did bring me a great deal of joy and little stress.  

In December, I tried to focus on that which means the most to me:  my faith, my family, and my friendships.  I am richly blessed in each of those areas.  

Jim and I spent Christmas Eve with his daughters and their families.  We then had a quiet Christmas Day at home alone when our plans to drive to Erie, Colorado, to be with daughter Amy had to change when she woke up terribly ill.  While we were disappointed not to spend time with Amy, we made the most of day and went to a movie.  We saw The Darkest Hour.  

We did get one Christmas photo taken when we went to view the light and decorations at the Broadmoor Hotel on the Friday before Christmas.  

The year 2017 had its challenges, but as I reflect upon the year now gone forever, I am filled with gratitude for all of the goodness that another year brought into my life.