Wednesday, January 13, 2016

Hair ~ A Journey of Loss

Today, after consulting with one of the specialists at the University of Colorado Anschutz Medical Campus,  I made a decision that I regret not making nearly two years ago.  Now that the decision has been made, I wonder why it took me so long to make it.  I think the main reason for not making the decision was denial and fear.  I am not one to take medicines.  I resist taking medicine until I know I have no other option.

I hardly know where to begin in telling you this story about a journey I have been on that started more than ten years ago.  I've never written about this journey.  Oh, I written many a blog post in my mind, but I've committed none of these posts to writing.  I've only written about this journey in my journal and in my writing group.  Now the time has come when I am finally ready to tell you about my journey into the world of hair loss.

I don't really know when the journey began because it was a completely innocuous journey in the beginning.  I noticed many years ago that I no longer had hair on my arms, but then, I never had a lot of hair, so I thought little of it.  Then, I noticed I didn't need to shave my legs because I didn't have hair on my legs.  Score!  That is a benefit that I get from going through menopause, was my first thought.

Next, as I innocently proceeded on this journey I didn't know I was on, I started noticing that I had a red inflamed spot on the left side of my hair line.  It didn't itch.  It just looked terrible.  I also noticed that hair would fall out when the spot seemed to heal and move to a new spot.  Finally, on April 6, 2006, nearly ten years ago, I consulted a dermatologist.  I told him it looked like I had an infection or inflammation of some type on my scalp.  I somewhat sheepishly told him I didn't know what to do about it so I was treating the area with Listerine.  Seriously, I did that!  My logic was that putting this antiseptic on the weird looking sore would be better than doing nothing.  I had also stopped using the hair product I was using because I thought my scalp was reacting to it.

I was already into a hair loss journey in this photo, but I didn't know it.


Frankly, I was dismissed by the derm.  I think he thought I was a nut job.  I guess I can forgive him for that.  I'm sure he hadn't seen anyone else that was using Listerine on skin problems that day.  He asked me if I had tried Windex.  Funny.  He then said he didn't know what it was.  He'd never seen it before.  He thought it might be psoriasis, but it didn't really look like it.  I have a history of psoriasis, so I accepted his diagnosis.  He did not offer to biopsy the area.  He gave me a prescription for Protopic and sent me on my way.  The Protopic cleared up the worst of the inflammation, and I thought little about it again.

My hair continued to thin.  I fretted, but I also figured it was a part of aging.

I remember that during the summer of 2010, just months after my daughter Julie died, my hair started falling out enough to notice.  My clothes would be covered with fine silver hair.  When my friends or family would start picking it off of my clothes, I called it my tinsel.  The tinsel is falling of the tree, I'd say.  I was told by doctors that stress was causing my hair loss.  "It will come back."

In July of 2011, I was visiting my daughter in Utah during a time of great stress for her.  The morning after I arrived, as I was putting on my makeup, I noticed my eyebrows were completely gone.  They'd been there the day before.  I called to my daughter, "Keicha, come here.  Do you see any hair where my eyebrows should be?  Where have my eyebrows gone?"  She confirmed that the eyebrows were indeed gone.  She didn't know their whereabouts.  This seemed really odd.  Under my breath, I said "I rather liked my eyebrows."

Another doctor visit about the the loss of the eyebrows received this response, "Have you been plucking them?"  Seriously.  In the doctor's defense, I must say that it was actually a legitimate question.  Perhaps, she thought my stress had started manifesting itself with trichotillomania, otherwise known as hair-pulling disorder.

I saw a new dermatologist.  She was a personal friend and knew of my recent loss.  She was compassionate and supportive.  She thought I had a form of alopecia.  She said stress could have triggered it, but she thought we should take a wait and see approach. She said it wasn't really presenting like alopecia areata.

  1. the partial or complete absence of hair from areas of the body where it normally grows; baldness.

Alopecia, a word I couldn't even pronounce if I did remember the term when describing a person who suffered from the condition.

I remember coming home from the appointment and looking up the condition on Dr. Google.  I wrote the term down and practiced saying it.  I didn't want to forget what it was.  (Believe me there has been no forgetting!)  This doctor was the third doctor that I had seen for my hair loss.

I looked up the specialist for alopecia areata on Dr. Google.  I found it was Dr. Norris at UC Health.  I felt I was a bit premature to try to get an appoint with him.

The next time I saw my endocrinologist, I asked her what she thought was going on.  She said that my thyroid was not the problem.  She said that it could be stress that was causing the problem, but she wanted me to get the scalp biopsied.

Heaven only knows why it took me a year to get a scalp biopsy.  There are legitimate reasons:  I had a fall that resulted in a head injury.  I suffered from visual vestibular disorder and couldn't drive for a year.  I had heart problems I was chasing down.  I had digestive problems I was trying to solve.  We sold our house.  We moved.  I had a lot going on.  My hair continued to fall out.

Finally in March of 2013, I saw another new to me dermatologist in Colorado Springs. He immediately diagnosed me as having frontal fibrosing alopecia, but he said 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 planopliaris.  He sat me down and painted a grim future for me and my hair.  He showed me pictures from the internet.  I was in shock and disbelief.  "Surely this won't happen to me."   He said that there was really no treatment, and he said that the treatments that might help were dangerous.  Plaquenil was mentioned as something I could try, but he thought the risks out weighted the benefits.  He said nothing would bring my hair back.  The plaquenil just might stop the process of loss.  I chose not to take plaquenil.  He prescribed clobetasol as a topical to help with the itching, pain, and soreness.  Yes, FFA and LLP are quite painful.  The pain is physical and not just emotional.

I saw Dr. Norris at UC Health in early to mid 2014.  He wanted to give me plaquenil.  He also prescribed finasteride, using its non-generic name of Avodart.  He said, "Avodart is being seen as having success in fighting FFA in the literature coming from the research being done at Duke University.  It is given to men with enlarged prostate, but it seems to stop the progression of FFA."  I was in shock, and quite frankly, I thought to myself that the man was grasping at straws.  Well, I was too, but I wasn't quite ready to be a lab rat.  Later that evening, I received a call from the pharmacist.  "I just received a prescription for finasteride for you from a doctor at the University hospital.  I've never seen this prescribed to a woman before.  I think there has been a mistake."  I assured him it was not a mistake.  I asked for his input.  In the end, I decided against taking any oral medications.  I did not want to be a science project.

I found another dermatologist.  This one prescribed topical steroid treatments.  I also began getting Kenalog shots in the scalp.  I broke out in rashes from the shots.  I broke out in rashes from all the traditional steroid treatments.  I took pictures of the rashes to show my doc.  He said "No more steroids for you."  My hair continued to fall out.

I learned how to cover up a lot of the loss with headbands, scarves, hats.  Then, I bought a hair piece.  I then bought three different wigs.  I cut up the wigs and made my own hair pieces.  I had a hair piece handmade for me to match my hair loss pattern.  I had not counted on having the loss spread even more to the crown of my head over the last couple of months.  I was truly in denial that it would ever get that bad.  I no longer can disguise my condition.

Below is a selfie of my new hair piece that I had designed and made for me.  Only the bangs and the top part of the sides are not my real hair.  The back of my head is covered with my own hair.  I love the solution that my amazing cranial prosthesis hair dresser at made for me.  My eyebrows are drawn on everyday.  I must do a pretty good job because I've fooled more than one doctor when I've told them my eyebrows are gone.

After Christmas, I called Dr. Norris and made an appointment.  I was now willing to take finasteride and plaquenil.  My doctors at National Jewish encouraged me to try these medications and assured me of their safety.  I was told I had to do something about the inflammation levels in my body.  Inflammation has  destroyed much my hair by causing it to to fall out and leave behind scar tissue that will never again produce hair.  I don't need inflammation to destroy my heart or my joints or any other part of my body.  I have several auto-immune diseases now.  Two of them are quite rare.  I don't need any more.  I have made my decision.  I'm taking the medicine.  I giving this terrible, disfiguring, destructive disease a good fight.  I hope to stop the loss.  Who knows, maybe I will even grow back a bit of my hair.



Joanne said...

Sally, I have never heard of FFA before. I hope and pray the meds work and give you back some hair. I have to say though in that last picture you look so beautiful! I would never ever be able to tell the difference between your hair and the hair piece.
Blessings, Joanne

Margaret Adamson said...

Wow! sally what a story and many thanks for sharing it with us. You certainly have been through the mill over the past few years so i do hope these mediciines wil make a difference to you and your hair.

The Furry Gnome said...

Well, i've never worried about hair loss, though i've gone from being a hairy monster, shaggy beard and all, to being an old bald guy, but i do have to take several medicines. It's frustrating, but i intend to stay alive enjoying life as long as possible!

DJan said...

Since I haVe seen the condition on you when you showed it to me last October, I know how much it had progressed in the five years I've known you, Sally. I love that pretty wig, and it sure doesn't look like one at all. It looks like your hair when I first met you. I hope this treatment works for you, but in the meantime you have found a wonderful cosmetic solution. Sending you big hugs! :-)

Jeanie said...

Oh Sally, what a bumpy road. I've heard of hair loss but never like this before and I can understand how it would be very frightening (not to mention painful and annoying.) Well, you must have good hairpieces because in every photo you've ever shown you could have fooled me, too.

In Diane Keaton's book "It Isn't Pretty"(that's not quite right but close) she talks in one chapter about hair and her hat passion. It's a good read.

Well, I hope the new meds work compatibly with your other stuff and that they are effective. The good thing is that you have quite the cadre of docs and I suspect that at the first sight of something bad (or good!) you'll be working with them to make sure it is the right thing. I would be doing that, too. Sounds like exactly the right decision.

Jeanie said...

I admire your attitude toward this and many other problems that you have faced.I like that you do the research, make a decision and just get on with it. I hope the medication works well for you without side effects. Your hairpieces look really good. I hope it feels good that you have shared this.

thisisme said...

I wish you well with the treatment, Sally. I can imagine how worrying all this has been for you. You do look beautiful in your selfie pic. I pray that things will turn around for you.

dkzody said...

I wish you well with the meds. I too do not like to take medicines as the side effects always seem to knock me for a loop. My dr says I'm drug-adverse.

Your hair piece is beautiful and makes you look gorgeous. How wonderful that there are hair artists out there who can weave their magic.

As for the inflammation, have you tried giving up all dairy, red meat, and sugar? Those three things really do a number on our inflammation rates. Terry had a shoulder problem that was diagnosed as inflammation. It convinced him to give up dairy (we eat almost no red meat and he consumes very little sugar) and sure enough, the inflammation went away. I also take oil of oregano to keep the inflammation down in my arthritic knee. Works well for me, but I know, each body is different.

Hoping the meds work and perhaps will reverse your hair loss.

Jackie said...

Thank you so much for sharing your story.
I read every word and admire you for your tenacity and perseverance with this condition.
I smiled at the Listerine application.
Sounds good to me!
You are a sweet friend, and I wish you all the best as you begin the medication for the treatment of FFA.
Please, keep us posted.
And....your hair piece looks do your eyebrows.
Kudos to you!!
Hugs and love,

Pat @ Mille Fiori Favoriti said...

Sally, it was very brave and helpful for you to share this journey with hair loss, as many women go through degrees of this for different reasons and will be encouraged by your story.
You look very pretty and your hair piece looks very natural. I have a few friends who had their eyebrows tatooed on. I have very sparse, light eyebrows and thought about doing that, but for now I use a pencil to enhance them.

Arkansas Patti said...

I would never know that is not your real hair. It looks wonderful. I too have been thinning and have attributed it to aging. I didn't know there might be a medical treatment.
This was a very informative post. Thanks so much for sharing.

Barb said...

I remember us writing to each other about this condition, Sally - in fact, I saved your E-mail. As you know, my son suffers from Alopecia and has periodic flairs of hair loss on his body/eyebrows and in a circular pattern on his head. At present, he feels he's more stable - some small patches of loss at the back of his head but new growth on his body and his eye brows are growing back. He attributes the new growth to watching his diet and to Magnesium supplementation. He's also been to several DR's including my dermatologist who I think is the best. He declines to take steroids. I'll be interested in your success with the new meds. Good Luck! My son is worried because he doesn't want any of his children to suffer from the same problem. Hugs from Barb.

Linda Reeder said...

Goodness, that's quite a story.
You have done well in seeking help and a true diagnosis and treatment, and in assuring that you look good so you can feel good about yourself.
Well done, and good luck with the treatment.

Cape Cod Kitty said...

My dear friend, I am so sorry you have been going through this. I have read about alopecia but have not known anyone who is experiencing the trials of it all. As always, you have written so eloquently about the challenges so well, and helped us all to understand what is like to have this affliction. I must say you have been handling it so well, and you look so wonderful. I love the hairpiece you have created - making the best of it all, and your resilient spirit shows beautifully in your smile. Wishing you continued strength with the journey, and do keep us posted on your progress. Much love, Marcia

Lin Floyd said...

thanks for sharing your story and for posting on my blog. I'm dealing with macular edema in my left eye now caused by high blood pressure. Just discovered it after cataract surgery which went well but then I couldn't see out of the left egy afterwards. Went to a retina specialist and am getting ocular injections (shots in the eye) for it which seems to be working. It's difficult not to feel sorry for yourself but you can always have gratitude that you aren't dealing with something else like cancer, etc.

#1Nana said...

Good for you! I was surprised when you talked so openly with us at Vashon...and didn't wear your hair. It's great to see that your personal journey has taken you to this new level. I hope the new medication helps, but with hair or without, I love you for the beautiful person you are!

Nancy/BLissed-Out Grandma said...

Oh, Sally, it's just one thing after another, isn't it? I'm glad you're able to write about this now; I take it as a positive sign from a woman who knows how to find the positive in all things. I hope the meds' side effects are tolerable, and I love the hairpiece. When you mentioned inflammation, I thought immediately of sugar, which I need to cut down because of inflammation. Per the above comment, red meat and dairy can also cause it. You may already have cut down on all of them because of your other autoimmune issues. I'm going to be writing about my fibromyalgia flareup, and I know (sadly) that diet is a big part of managing it. Still, hair loss brings a whole other dimension to the struggle and I thank you for your forthright post about it. Live well.

Olga Hebert said...

Sometimes it seems as though you have had more than your share, but you continue to be so brave and so wise. In sharing your stories, you are touching more people than you can possibly know.

Barbara Torris said...

I just wanted you to know that I read this. I did not realize that the type of hair loss you are talking about was a symptom of something much more dangerous. I know several women with it here in my RV resort.

Take such good care of yourself. I am counting on you getting better soon.

Much love,


troutbirder said...

My admiration for you fortitude. Based on appearances your looking real good. Getting rid of the itching and other symptoms though would be a great step forward if the meds do the job...:)

Kay said...

I've heard of alopecia, but not everything else. I've always worried about myself too since I've had quite a bit of hair loss and mentioned it to my doctors. They said mine is just the regular aging thing though. Thank you so much for sharing all this valuable information. So many of us leave things off too. You look wonderful and I'm envious of how beautifully you're able to draw in your eyebrows. Many ladies in Hawaii have it tattooed on, but I'm not that brave.

Anonymous said...

Please check out Cicatricial Alopecia Research Foundation's website.... Your diagnosis of FFA (Frontal Fibrosing Alopecia) is the lymphocytic form of Cicatricial Alopecia (CICAL). The other form is neutraphylic which is bacteria based. Biopsies of this form all appear as Lichen Planopilarus under the microscope. Learn tips and tricks patients use in the biannual free newsletter. From the home page open For Patients, then open Newsletter and then click on "here" for the current edition. If possible attend the Patient-Doctor Conference in New Orleans June 3-5, 2016. Cicatricial Alopecia Research Foundationn (CARF) offers support groups and Patient Outreach Volunteers to provide support and current information about this rare condition. I was diagnosed with Cicatricial (sick ah trish ul) Alopecia (hair loss) in 2007. I was lost until I attended the San Francisco Support Group. Over the years I've made lasting friendships with others suffering from CICAL. They understood my emotional and physical journey becasue they were walking the same path. Check out the San Francisco Support Group newsletter article to learn discussion highlights. These meetings are monitored by doctors whose expertise is hair diseases.

Perpetua said...

Thank you for writing with such courage and honesty about your difficult medical condition, Sally. I really hope the medication can help. If it's any consolation, I would never have guessed from any of your photos. You look wonderful.

Linda P. said...

Thank you for writing with such honesty about FFA and lichen planopliaris and the difficulties they are causing you. Writing about your experience must have taken some courage, but I hope you feel rewarded by the response from your friends and blog-community acquaintances. I took Plaquenil as an adjunct to the biologics I take for an autoimmune disease and had no problems with it. I hope that your experience is the same. The added benefit is that if malaria ever makes it up into Colorado, you're good to go!

I have added another rare disorder to my diagnoses this year: trigeminal neuralgia. Such difficulties bring moments of acceptance and moments of grief as we come to terms with reality. I wish you more moments of acceptance and even joy in your ability to cope than moments of grief, although both play their part in living a full life.

Nancy said...

Hi Sally, I came over from Barb's and it's so nice to meet you. I am sorry that you have been through so much the last few years. I certainly hope this treatment will help you and give you some relief from the hair loss of the last years. By the way, you have a lovely smile....

Anonymous said...

From your pics.....I would never have known.
You look fabulous !

Barbara said...

This is very interesting. I keep getting a little rash on my head that the doctor's keep shrugging about. I think I will take it a little more seriously.

Terra Hangen said...

You are brave and are helping people by posting this, since many people including me had never heard of this condition before. Your hair solution looks really cute in the photo and I pray you will have wonderful results with the new treatment you are trying.

Anonymous said...

Hi Sally, I read your blog and the hair loss journey, diagnosis and treatment sounds all too close to my experience. I am not sure about the drugs either, as I might not be able to break them down, and eliminate them. I guess stress and toxins have played a big part in my life as well. I have been researching hairpieces, but choice is very limited here in Australia. Your hairpiece looks so natural, I don't think anyone would be able to tell. I am now getting very self conscious especially when it is windy, so no doubt the hairpiece will be a big adjustment. Thank you for posting, it is a great help to not feel alone.