A Trip to Philadelphia ~ Memorial Day to the Fourth of July ~ Part Two

These days, I do not travel alone.  I may go to Utah without Jim to visit my children, but other than that, as I have gotten older and have had a few health challenges, I do not like to travel alone.  Utah is a place where I spent many years living, and I have spent all of these thirty plus years since I left Utah returning at least once during the year for a visit, so I am very familiar with my surroundings there.  It is like returning to my old hometown. 

Also, I have friends and family there, so I never feel adrift when I am there alone.  I no longer drive to Utah alone.  I make the one hour flight so easily that I often wonder why I don’t make the trip more often.   Once I am there, I generally rent a car so I have my independence while visiting friends and family.  

Philadelphia 

This year, I made decision I rarely make these days. I decided to fly to Philadelphia alone so that I could attend conference. When we were working, Jim and I went to different destination spots to attend educational conferences. It was always fun to make those trips where we would learn new things, meet new people, and explore new places.  This trip to Philadelphia was different from many of those professional conference trips that we once made.  The conference I planned on attending in Philadelphia, while educational, was a medical conference where I would learn the very latest about living with and treating a medical condition that I have called Frontal Fibrosing Alopcia.  

Jim always so supportive of me in dealing with this condition, encouraged me to attend the conference.  I wanted to make a trip out of it for both of us, yet when we discussed the trip, we decided that he really would not enjoy being at the conference with me, and since the conference was being held at a hotel at the airport, it would be difficult and expensive for him to make trips into the city from the conference hotel to explore the historical sites found in the city.  We even discussed extending the trip so that we could explore the area together once the conference was over. We thought we might rent a car and drive to Scranton, Pennsylvania, to visit my son and his family.  

Flights, rental cars, and hotels are very expensive in the east during the first of June, so that also was a factor that we considered when we thought about making this trip together.  As it turned out, my son and his wife were going to be packing up and getting ready to move back to Colorado about the same time I would be attending the conference.  In the end, it just made more sense for me to travel alone to Philadelphia.  

If you have read my blog before, you may have read my accounts of living with alopecia.  I first wrote about my journey with hair loss in 2016.  You can read that post here:  Hair: A Journey of Loss.  The most recent I wrote can be read here:  Life Lessons Learned from Hair Loss.  

CARF
Cicatricial Alopecia Research Foundation

I attended my first CARF Conference two years ago in New Orleans.  When I was in New Orleans, I made great friends among the wonderful people whom also have some form of scarring alopecia.  One would never aspire to join the CARF community, yet one is so grateful to have a group that offers so much support when one is hit with scarring alopecia.   It is a shock to be hit with alopecia!  I often welcome new members to the scarring hair loss community by saying, “This is one of those clubs you never wanted to join, but you will find it is one the best clubs you can ever join because it is where you find so much understanding, support, and friendship.”

When I finally left for Philadelphia, I could hardly wait to meet all my friends that I had met in New Orleans two years ago.  Some of these friends, from all over the country, have been there when I have called them on the phone and we have talked for over an hour at a time sharing hope and help when it seemed no one else even knew anything about the disease we share.  We send emails, and we support each other online forums. We have an awesome community!

You won’t see photos of my alopecia friends in my posts because this is a condition many choose not to share with others.  I honor and respect the privacy that others wish to have.
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I posted the following on a private internet support group page when I first arrived in Philadelphia:

I’m here in Philadelphia attending the CARF Conference. Ben and I have a lot in common. I never thought I’d end up looking like him, but FFA hit me, and now he and I have a real connection. I’m looking forward to learning more about this condition from the shared wisdom of this awesome group of people.



Good old Ben and I really do have a lot in common these days.  We share the same hairline.  Actually, Ben’s hairline is not as far back on his forehead as mine is, and he has more hair in the back than I do.  

My forehead is not even a “fivehead” anymore.  It is more like a “sixhead.”  In other words, I need the width of six finger to measure how far my hair has receded.  This is not the look I was going for as I aged!

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Once I landed in Philadelphia, I boarded a bus to take me to the hotel and happily realized that my dear, dear friend that I officially met two years ago was on the same bus.  She was the first person I ever spoke to by phone who also had the same form of scarring alopecia that I have.  We “met” over the net because I wrote a blog post about my condition.  Someone else with this condition read my post, called this friend to tell her to read my post.  Once this person read my post, she commented on my blog about what I written.  I read her comment, and then tracked her down, sent her an email, and then we spoke by phone for nearly two hours!  That was two and a half years ago.  I now count her among my dearest friends.  
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I saw little of Philadelphia itself.  Most of my time was spent at the conference.  I hope to write about the conference itself later.  I did however make three short trips into the city.  

The first day I in Philly, one of my friends and I took an Uber into the city, did a little bit of walking, and ate lunch while we caught up with each other about life and about our shared hair condition.  She took a photo of me while we were in town.  That’s me wearing one of my wigs while I am standing in front of Independence Hall.  


I learned from ConstitutionFacts.com, that those wig-wearing men whom frequented Independence Hall when our country was first founded were wearing wigs made of goat and horse hair.  Those wigs were seldom washed properly, smelled terrible, and tended to attract lice.  (Yuck)  That is why these wigs were called  “powdered wigs.” The wig wearer sprinkled a powder that was made of “finely ground starch and scented with lavender” over their wigs. (Was this the first dry shampoo?)

I can’t even imagine how heavy those wigs must have felt, and it makes my head itch to even think of having goat hair or horse hair next to scalp.  Scratch, scratch, scratch.  

Ben Franklin was truly a wise man.  He rocked his bald head.  He did not wear a wig.  

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My next trip into the city came when on the second night of my conference my son surprised me with a phone call saying that since the flights bringing his wife and baby to Pennsylvania had been disrupted by late flight connections, she was now flying into Philly.  He and his oldest son picked me up after my conference Saturday night dinner, and took me into town for dessert at Max Brenner’s.  What a fun time that was!  I didn’t think I’d get to see these two when I was in PA, but it turned out we had a special adventure of driving around downtown Philly at night while looking for that special place where chocolate addictions are fed by wonderful concoctions heavily flavored by chocolate. 


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On the last night of the conference, after nearly everyone else had gone home, one of my dear friends with scarring alopecia whom I met in New Orleans and then was able to spend time with again in Philadelphia, asked me to join her and her mother on a trip into the city for dinner.  We took a taxi to Reading Terminal Market.  What a fun place!  We ended up eating dinner at a place called Molly Malloy’s.  The hamburgers there were seriously the best I have eaten in a very long time!

It had been raining when we arrived at Reading Terminal Market, but since the rain had stopped when we finished eating, we decided to do a bit of a walking tour of Philadelphia.  



I recognized a few of the landmarks from my trip into town with my son Jonathan, so I suggested we go to Max Brenner’s for dessert.  I thought that Google Maps would help us find the way.  I think I also must have been thinking that the guy on the horse was pointing in the direction we should go.  


My friend took a walk through the water fountain...


We then got out to the street where we were supposed to go, but I learned that I am very challenged about direction in big cities.  Actually, I already knew that.  Also, I learned that when following Google Maps, one should make sure that the “walking” instructions are on instead of the “driving” instructions.  Oppps.  There are a lot of one way streets in Philadelphia, so the driving instructions kept telling us to turn when we should not have turned while walking.  

We were very turned around, and we were walking in the opposite direction from where we wanted to go.  My friend and her mother suggested that it seemed we were heading into a neighborhood that didn’t look too safe.  They were right.  Thankfully, a couple came along, and we asked them for directions.  Yep, we were truly walking in the opposite direction from our destination.

We turned around and soon we arrived at Max Brenner’s where for the second time, I enjoyed a wonderful chocolate dessert.  

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On my last day in Philadelphia, I only had time for breakfast at the hotel before I had to leave for the airport.  I was sure everyone from the conference had left when I went downstairs, but I was wrong.  As I headed to the restaurant, I heard the familiar voices of a few of my friends.  We all were so happy to have one last time to share a meal, some conversation, some words of support.  Departing hugs were given, and we all promised to meet again in two years for our next conference.  

My trip to Philadelphia was memorable for so many reasons.  I reunited with so many friends, and I made new ones.  As I have said before, some of the most intelligent, successful, and beautiful women I have ever met are the women I have met whom also suffer from scarring alopecia.  There are also some men in this group whom have given so much to make sure we have the support and information we need to deal with this disease.  I can’t imagine having this disease without the support of all of the wonderful people associated with CARF.  I’m so grateful I had the opportunity to attend this conference and spend some time in Philadelphia.

More on the conference itself later...

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.



2011

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.


Alopecia
al·o·pe·ci·a
ˌaləˈpēSH(ē)ə/
noun
MEDICINE
  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.


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