Thursday, February 28, 2019

Rare Disease Day 2019 ~ My Story

Today is Rare Disease Day.  After years of seeing multiple doctors for strange and confusing symptoms, I was diagnosed with a rare disease in 2013. I have an autoimmune disease called Cicatricial Alopecia.  It is a scarring alopecia which in my case has presented as Frontal Fibrosing Alopecia.  This disease brings both physical and emotional pain.  When hair dies, it hurts.  There is itching, burning, and a sense that the scalp is crawling.  Emotionally, it hurts to lose one’s hair because as women, our identity is often tied to our hair.  Some of you have read my story before.  Others have not.  Here is my story.

**************** 

The completely innocuous beginning of my journey into hair loss cannot be pinpointed. There were early signposts. Inoffensive and unobjectionable, they were not noted. One day, I did notice I no longer had hair on my arms. It certainly didn’t seem like a big deal. Then, I noticed I didn’t have hair on my legs. I surmised the loss of hair on my limbs was a natural part of aging.
Next, as I innocently proceeded on a journey I didn’t know I was on, I noticed that I had a small red inflamed spot on the left side of my front hair line. It didn’t itch. It just looked odd. The spot spread, and it looked as if pustules were forming. I tried several home remedies for treating the area. Then, I noticed that hair would fall out when these strange looking spots healed.
On April 6, 2006, I consulted a dermatologist. I somewhat sheepishly told him about the home remedy I had been using: Listerine. Seriously, I applied Listerine to these inflamed areas of my scalp! I did this because I had concluded that putting an antiseptic on the weird looking sores would be better than doing nothing at all. I think the doctor thought I was a nut job. I can forgive him for that. I’m sure he hadn’t seen anyone else that day using Listerine to treat skin problems. He asked me if I had tried Windex. Funny.
The doctor said he didn’t know what the problem on my scalp was because he’d never seen it before. He thought it might be psoriasis. I have a history of psoriasis. I didn’t think it presented like psoriasis. He didn’t disagree with me. He concluded that he didn’t know what else those sores could be. He gave me a prescription for a topical and sent me on my way. He never suggested that I schedule a follow-up to see if my problem was resolved by using the treatment he prescribed. I felt dismissed but also felt that my symptoms did not merit a legitimate medical concern.
The topical cleared up the worst of the inflammation. This made me happy. I did notice the hair continued to fall out when the area was healed, and that it did not regrow where the pustules had been. My hair continued to thin. I fretted, but again I surmised it was a part of the aging process. I noticed the front part of my hairline did not have the volume that it once had, and I found my old hairstyle no longer worked with the thinner frontal hair.
May 2010
In May of 2010, my youngest daughter died unexpectedly. Just months after her death, my hair fell out enough that fine strands of silver hair covered my clothing. I called it tinsel and joked, “The tinsel is falling off the old tree.” According to my doctors, the loss was temporary and caused by shock and stress. “Your hair will come back,” they said. The hair loss was significant, but not noticeable to others.
One morning in July of 2011, as I was putting on my makeup, I noticed my eyebrows were completely gone. They’d been there the day before. Now, the loss of hair I had been experiencing for the last five years seemed anything but innocuous. I saw my doctor and told her about continued thinning of hair and sudden loss of eyebrows. She asked, “Have you been plucking them?” It was a legitimate question. Perhaps, she thought my stress had manifested itself with trichotillomania, a hair-pulling disorder. I decided it was time to visit a new dermatologist.
A compassionate and supportive doctor, she was also a friend. She thought I had a form of alopecia triggered by stress. She’d never seen alopecia that presented like the symptoms she saw on my scalp. The sudden loss of eyebrows was a mystery to her. She thought we should take a wait and see approach. I went home from the appointment and consulted Dr. Google. Alopecia, a word I couldn’t even pronounce, was not new to me. I’d heard it before, but it was a word I could never remember. I wrote this term down on a yellow sticky note and placed it by my computer. I practiced saying it. I didn’t want to forget the name of the condition nor how to pronounce it. Believe me, since that day, there has been no forgetting!
Not long after that appointment, I saw my endocrinologist for a routine appointment and asked her for an opinion. She said that my thyroid was not causing my hair loss but concurred that stress could have triggered problem. She advised me to get the scalp biopsied. Heaven only knows why it took me a year to get a scalp biopsy. I was in denial about my hair loss. I believed it was temporary. I believed the loss would stop. I believed my hair would grow back.
Meanwhile, my hair continued to fall out. Finally, in March of 2013, a full seven years after my first visit to a dermatologist for hair loss, I saw another dermatologist. After his initial examination of my scalp, he diagnosed me with frontal fibrosing alopecia. He added that he would have to biopsy my scalp for a solid diagnosis. I had never heard of FFA before. The biopsy came back confirming FFA and lichen planopilaris.
He sat me down and painted a grim future for me and my hair. He showed me pictures he had downloaded from the internet. All I could think of was, “Surely this won’t happen to me.” The new doctor said that there was really no treatment to cure the condition. He said that the treatments that might slow it down were not effective and had side effects I may not wish to experience. I chose not to take the oral medications but used the topical Clobetasol prescribed to help with the itching, pain, and soreness.
In 2013 when I was finally diagnosed with FFA, I realized that I had suffered from terrible itching on my scalp for several years. Dealing with loss and grief, health problems of another nature, I did not pay much attention to what was going on with my scalp. I had lamented my thinning hair, but I still believed it was a temporary situation. The trajectory of my journey changed the day I learned about the disease that was not only taking my hair, but also leaving scars behind. I had to determine out a way to accept and cope with the diagnosis and the changes it brought to my journey through life.
2013
The devastating emotional and psychological components of hair loss are not often addressed by the medical profession. My own personal journey with hair loss has been made easier by the support and knowledge I have gained from the Cicatricial Alopecia Research Foundation and from www. AlopeciaWorld.com.
In June of 2016, I attended the 7th International Patient-Doctor Conference sponsored by CARF in New Orleans, Louisiana. It was probably one of the most important things I have done for myself since I began this journey. There, I learned I was not alone. I met some of the most amazing, supportive, and smart men and women I have ever known. Like me, they too are learning to live with scarring alopecia. At the conference, we armed ourselves with information to help fight the battle against hair loss. We learned from those doctors whom have dedicated themselves in helping us on this journey.
June 2016
United, we are joining the battle to win the war on scarring alopecia. Our stories give strength to each other as we journey down this road together. Our stories unite us and make us feel less alone. Our stories validate our experience. At times I think we all feel very alone in a world where it seems every head around us is covered with hair. I hope my story helps someone else feel less alone.

2018
With helper hair
2018

Monday, January 28, 2019

Blogging ~ Looking Back on Ten Years of Writing

My blog was created on July 25, 2008, in response to an assignment given when I was enrolled in a summer workshop that was offered by the Southern Colorado Writing Project at Colorado State University-Pueblo.  On the day that this blog was created, those of us enrolled in the weeks long workshop went into the computer lab, signed on to the internet, created an account with Blogger, and then each of us set up our very own individual blogging site.  Blogging was the future we were told.  We needed to know how blogging worked because it could be a great tool in the classroom and in our professional lives.

I had absolutely no inspiration that day when it came to naming my blog, nor did I realize that it might have been a good idea to set up the address for finding my blog to correspond with the name that I finally came up with to give to my blog.  I’d contributed to a closed, family only,  blog my daughter had created prior to me creating my own blog, but I had no vision whatsoever for a personal blog.  Our family blog had a great name, and it had been a fun exercise in informing each other of our various happenings before Facebook came along and changed all of that.

When it came time for me to create my own blog, I named it Retired English Teacher because that was the only title that came to mind when I sat down to fulfill the requirements of the assignment by creating a blog.  I had recently retired.  I had no idea where retirement would take me.  In fact, in many ways, I was not even sure I wanted to be retired.   I planned on working working part-time over the next few years and did not see myself becoming a blogger even though I did want to write and hoped to write a book during my retirement years.

I did see my blog as a place where I could write about my activities so that my children could keep up with what was going on in my life.  (As if they would be interested.)  My own father used to write wonderful long letters to his children and to his siblings.  He would make carbon copies and send out the letters.  I loved getting his long chatty letters about what he and Mother had been doing.  He would sometimes tell stories in the letters.  I loved his stories.  Those letters were filed away and are now great treasures to me.  Perhaps, I was channeling my father and his letter writing ways when I took up writing my early blog posts.  

No one ever commented on my early posts.  I don’t know that anyone even read them.  Now, I look back at them and am grateful I wrote because the few posts do serve as a bit of a journal for what was going on in my life.

I wrote eleven posts that first year.  Just before the end of the 2008, I contemplated the future of my  blog, a blog that had never generated even one comment, by writing a post called, To Blog or Not to Blog.  I ended the post by writing the following:   

As of today, the jury is still out. I am not sure of the benefit of this blog except for serving as a place where I can create a bit of a history of what is going on in my life at the moment. I am newly retired. I struggle with my new status at times. I miss the academic life, and yet I am also happy to leave the daily demands of it behind. I miss my students. I miss the interaction. I miss my audience. That is one thing a teacher always has - an audience. As I used to say, "Just give me a stage!" But, I also like to think that my classroom was a place where we were all learning together. I like to think that I created a more generative, constructivist type of classroom. It wasn't just like the classrooms where I went to school. My classroom was interactive and interesting. Certainly, if a blog is going to be successful, it must be all of those things too. At the moment, I think my blog mostly serves as a place where I can contemplate and explore where I want to go with my life as as a retired teacher. I don't necessarily need an audience to do that. I only need a place where I can record my thoughts and activities so I don't get lost. So, for now the blog continues.

I wrote even fewer posts in 2009.  I did write a post in April of that year entitled, My Life As An Educator.  In January of 2010, that post generated its first comment, in fact it was the first time any post had ever generated a comment.  A woman, also a recently retired educator, had also just begun blogging, had found my blog, and something I wrote resonated with her, so she wrote a comment.  We began communicating with each other, and I became an avid reader of her blog and some other blogs I found out there.  

Quite honestly, I most likely never would have continued to blog if it had not been for Jann, #1Nana, my very first blogger commenter.  Her encouragement was key in my blogging journey.

 In February of 2010, I turned 65.

Retired English Teacher, AKA Sally, on her 65th birthday in February 2010

I was still working part-time by teaching English as A Second Language.  I needed to work in order to keep my insurance going until I turned 65. I seldom took the time to blog during those days, but I was looking forward to the end of the school year when my teaching obligations were over and I could spend more time writing and blogging.  Jann, kept bugging me to write.  (Thank you, Jann.)

My husband and I took a trip to Europe to celebrate our full retirement in May of 2010.  I contemplated the direction of my life and blog while we traveled.  I knew that the retirement years were going to finally open up for me, and I hoped to spend that time writing, gardening, and traveling.  

Instead, just ten days after our return from Europe, my youngest daughter, Julie, took her life at the age of 34 on May 29, 2010.  My life went into a tailspin.  I had to rethink life so I could make sense of a new reality that made no sense whatsoever to me.  

Thankfully, I had a journal and a blog where I could turn to try sense of the great loss that had come into my life.  I wrote a blog post called Life Altering Events soon after Julie died.  The blogging community reached out to me with love and support like no other support system I had in place at the time.  I had family, and I had friends, wonderful, supportive, loving and caring friends and family, but it was through writing that I was able to sort out what was going on in my broken heart.  I wrote about my private grief in a journal, and I shared much of my grief journey through blogging also.  Writing helped to heal my heart.  Blogging gave me a new community with which I could share my story of heartbreak and loss.

Blogging introduced me to an entirely new world.  I never would have imagined where my blogging journey would take me when I wrote that first perfunctory post to complete a class assignment in July of 2008.  Since that time, when I began blogging in earnest, I have so often been inspired by bloggers.  I have learned new things from bloggers.  I have traveled to places I will never go in person by reading blogs.  I have learned insight about life.  I’ve seen nifty ideas for decorating.  I’ve found new recipes.  I supported others through loss and heartbreak.  I have laughed at blogger humor as I read their funny stories.  I read accounts of fighting cancer.  I have cried for blogger's losses of love, children, financial ruin, and even of days before loss of life.  I have prayed for blogger in times of trial.  I’ve celebrated their victories with them.  Many bloggers have become my dear virtual friends.  I have met some of them in person.  

In fact, the core of my community of bloggers from back in 2011 and 2012 decided to meet in person in 2012.  Jann, my very first reader, commenter, and blogging friend and I would meet when she and I and four other bloggers decided to rent a house on Vashon Island in Washington so we could meet in the flesh.  We dubbed ourselves the Vashionistas, and Jann would joke about wondering which one of us would be the “ax murderer.”  We did take a risk, I guess.  None of us knew each other except through blogs before we met on Vashion.  




These women, my Vashionistas, and I would meet more than once at Lavender Hill on Vashion Island.  We would write, explore, share, laugh, eat, cook, and we created wonderful memories together.  Some have stopped blogging; a few remain faithful blog writers.  All represent to me the wonderful world of friendship that blogging opens up to all of us willing to send our words out into the world for others to read.  They represent a very important chapter in my blogging life.

Blogging has changed so much in the past few years, and so have I.

I no longer think of myself as a retired English teacher, even though I am one.  My journey through the last ten years has been one of loss, of heartbreak, of pain, of illness, of broken relationships, and it has also been one of great joy, of growth, of self-discovery.  I have aged.  I have slowed down.  I dealt with heart issues, auto-immune issues, and hair loss.  My faith has grown through this process in ways I never could have imagined.  

I have a story to tell.  It has been written over a lifetime of living one day at a time, and thankfully much of it has been recorded in diaries, letters, and notebooks.  I hope to get it organized enough to leave a legacy of hope for my grandchildren.  

For that reason, my blog will be taking a new direction. Yes, the time has come to retire Retired English Teacher.  I have loved this space, this blog, for so many reasons, some of which I have recapped above, but just as the times have changed, so have I.  I need a new focus.  

I will be creating a new design and and new address for my blog.  THAT IS SCARY!  Writing down a goal makes it real, and that makes it scary to me because that means I must make strides towards reaching my new goal.  

This is not good-bye.  This is hello to something new.  I hope you all will follow me as I continue on my journey of writing and blogging at a new address.  

My husband I will be taking an extended vacation over the course of the next month.   When I get back from that, I hope to get the work done to move on to creating my new blog address and blog name.  

Thank you all, dear readers for your loyalty and support.  I love you all.  An announcement of where to find me next will be forthcoming.  

Watch this space.

XO
Sally
Retired English Teacher




Tuesday, January 22, 2019

Are You Stuck? Or Do You Just Think You Are Stuck?


A seed from a pine tree found itself eaten by a squirrel, or maybe a blue jay. The seed believed that this was a terrible way have its future ruined. Now, the seed, so full of potential, was stuck in the stomach of an animal or a bird. Soon, however, the seed was dispersed by the creature that ate the seed, and she found herself deposited in a crack in a huge rock. 

“Great.” The seed thought. “Now I am really stuck. I would like to have been dropped on that beautiful valley floor below me. There I would have had room to plant myself, become established, and grow. Here I am stuck in this rock!”

The seed had nowhere else to go. She was stuck where she was. She had no choice except to dig in a little deeper into the broken place around where she had found herself deposited in the rock. 

Soon, she broke through her shell that surrounded her. From there, once her own shell was broken, she sprouted new growth. 

Next, she put down some roots, and she grew upwards towards the sun. 

She now realized that she had not been stuck in this place, a hard and rocky place, that looked like a place where nothing could ever grow. She discovered she could grow where she was planted. In time, she grew into a beautiful pine tree.

Passersby were amazed at her resilience. “How did that tree grow out of a rock?” they would ask as they walked by.



Saturday, January 19, 2019

Brainstorm Overload




BRAINSTORM

Too many days of brainstorming on too many topics have left me in a fog.  

I’m exhausted.

My body aches.  

My body is in an inflammatory flare.  

My brain truly is in a fog.


Thursday, I saw one of my doctors, actually my doctor’s physician assistant, as a follow-up for health problems I don’t want to even think about, let alone discuss.  I showed her my latest blood work, and I still see her face as she stared at my inflammatory markers.  Yes, if she had been an emoticon, she’d have been the one with the great big eyes. Then, she composed herself and said, “We must get you into one of our rheumatologists.” “We need some more blood work.  We need another _______ study for _______.”  I walked out of her office with a fistful of papers for medical testing.  

I felt so grateful for her compassion and need to hear me and see me and for putting her best medical background to work to understand what is going on in my body.  There is much hope that comes from finding a new partner in brainstorming about what is going on in my body.  This body of mine that suffers from being attacked by autoimmune disease needs all the help it can get.  

Brainstorming is where I live most days.

I deal with a rare form of hair loss called Frontal Fribrosing Alopecia, so I am always brainstorming on ways to minimize, live with, afford the fixes for this devastating and disfiguring disease that has robbed me of my hair, my identity, my health.

One autoimmune disease leads to another.  It seems my body is out to acquire more than autoimmune diseases than it already has.

Brainstorming on ways to deal with health problems, healthier living, family problems, and life in general always seems to be going on around here. 

 Who has time or energy for brainstorming about writing?  

I brainstorm on ways to cope.  

I pray.

I read my Bible.  

I journal.

I write “to do” lists. 

I brainstorm until my brain says, 

No more storms in the brain.  Take a break.

Breaks are good.

The fog will lift.

The sun always comes through when one is in a storm, in a fog.

I will feel better.

I have to let the brainstorming go for a bit. 

My brain needs a rest, so does my body.  




Friday, January 18, 2019

Editing ~ What to Keep. What to Let Go.




EDIT 

A few weeks ago, I met a woman whom had been recently diagnosed with  with the same rare autoimmune condition which I have.  She said she was making herself crazy by “editingeverything out of her life.”  Everything in her life became a suspect. Could this food, shampoo, lotion, or make-up have triggered an inflammatory response?  Could this person, activity, thought pattern have caused the stress in her life that triggered inflammation?  

I was struck by her use of the word edit as she described her response to a recent life altering diagnosis.  Edit is a word that I associate with writers, teachers, English majors, editors.  It is not a word I associate with the general public, and yet it seems that in these times, so many in my circle of friends, family, and acquaintances are working on  editing something of the other out of our of living experience.

Everyone seems to be tidying up.  Instagram and Facebook are filled with photos of folks cleaning out closets, or they post photos of newly folded clothes.  It seems this act of editingunwanted or unloved “stuff” out of our lives is the new thing to do.  

In writing, and in life, the question is often created in our minds:  What do I keep, and what do I let go?  

Could it be that before we can become good writers, we must learn the art of letting go, or editing, all that impedes our ability to write?  Writing requires good editing, but perhaps before we even begin to write, we must edit all that gets in the way of writing. 

Henry David Thoreau said, “Our life is frittered away by detail…simplify, simplify.

Are you working on editing something out of your life right now?  If so what?  Why did you decided you needed to make this change?


Tuesday, January 15, 2019

Morning ~ A Reflection

Morning




 That song, an old hymn made popular in the 70’s, is running through my mind, “Morning is Breaking.”  

We do not often think of the words morning and breaking together,  and yet the two do belong together.  The sun comes up at dawn to create a division, a split, between two very different parts of the twenty-four hours each of us are given. We go from darkness to light in dramatic fashion at daybreak.

This break, the division between darkness and daylight, speaks of the hope, the promise, the freshness that is ours each new day.

The painting that I have included in this post is called “Dancing with Dawn.”  I purchased this painting as a retirement gift to myself.  Looking forward to all the days where I hoped to sleep in, I jokingly said this would be the only depiction of dawn that I would see after I retired.  

There were those mornings where I leisurely read my newspapers while I sipped my coffee, or I frittered away the morning by scrolling through Facebook, or Instagram, or I read blogs.  Then the morning would be gone, and I would feel as if the day were wasted.  

Mornings are a gift not to be wasted.  I think of the artist that created this glorious rendition of daybreak.  He did not fritter away the morning.  He had to have gotten up very early to go to this spot, a spot I know well, to set up his easel in preparation for painting.  His time of creating a thing of beauty was best done in light of early morning.  The name of the painting denotes how he approached morning.  He said he was dancing with dawn.  

The two artists I am thinking of today, the writer of the hymn “Morning is Breaking,” and the painter of my “Dancing with Dawn,” both saw morning as a time to be fully awake, a time not to be missed, a time to create. 

 Each morning is a first.  It is a time of newness.  There is a break between the old things of yesterday, and newness of the day before us each morning.  Each morning brings us a reminder that God’s mercies are new every morning.  

There a sense of the holiness of each new day when one arises early in the morning to see the day break.  As the song says, mornings are “God’s re-creation of the first day.”  

Monday, January 14, 2019

Hibernation


Hibernation


The sky is blue.
The snow is melting.
The paper whites are fading.

Winter.
Is is it over?
Colorado,
you confuse me at times.
The view from my window says come outside and play in the sun.
Are brumal days and nights over?

Is Mama Bear being tempted on this fine winter morning to emerge from her hibernaculum?
Her secret winter home,
 dug within the hillside
covered with majestic Ponderosa pines
that I see outside my window,
may also be heating up in this weather.

Will she be out today?

Or will she, 
like I,
prefer to stay tucked inside a cozy den 
where one does not have to deal with the vicissitudes of weather and life?