Tuesday, June 6, 2017

It Ain't Easy Bein' a Diva!

This doesn't always occur, however, some alopecians experience not only hair loss, but some types of skin irritatons and nail loss. It depends on the types of alopecia one might have and the individual. Some medications may even cause  these conditions. 

Yeah, I know, boring stuff right?...But for us divas this is major business!

I pride myself on keeping my manicures​ and pedicures up to par! There's nothing like going out with your honey on a romantic dinner date and the lighting creates this ambiance which causes my beautifully manicured nails to glow and my stylishly showcased pedicure in my 3 inch heels to shine like they're on display in a gallery. I don't know why but something about having a fresh mani-pedi, gripping the stem of a wine glass, crossing my legs, and staring into my Honey's eyes makes me glow all over. I would think that my Honey would enjoy this as well.

But I digress...How can you feel good in a setting like this with nails looking like that? ( See photos below). What does one do when these little challenges crop up? Well, I guess it's different for everybody. I can only speak from my experience. I've had a few successful solutions as well as some epic fails to say the least.

Here are some things one could possibly try:

Cancel the date

Ball my hands into knuckles and curl my toes under while. wearing some flip flops.

Constantly lick my lips to distract my Honey from looking down at my hands and feet.

Tell my date the truth about what happened. ( This might make me paranoid. I'd just keep thinking he is staring.)

Some better suggestions:

For on the fly repairs try cutting pieces of tea bag, placing on the nail ( provided there is no infection ) then paint with clear acrylic nail polish. Paint with nail color.

You can purchase store bought adhesive tape for nails which you can do the same thing as the tea bag method.

Most importantly, you must treat the underlying problem by either by treating internally with supplements and antibiotics or topical treatments such as creams or ointments.

As it stands, this disease called alopecia continues to evolve in the most unexpected ways. I'm bald from not having hair and sometimes not having nails. Who knew?

Thank GOD I have skin and the where with all to recognize my blessings!

In the end it's all in a day in the life of an alopecian. 

And Nothing will stop me from being a diva! I just have to work a little differently and a little harder than some.

"Be bald and be happy!"


Love~Crowned Regal

Instagram @crownedregal

Facebook https://www.facebook.com/TheRealCrownedRegal

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@crownedregal11

Monday, December 29, 2008

Standing in Line to Surrender



Usually, I don’t like standing in line for anything! I’ve always been impatient like that. I don’t even like being the first one in line!
Seems lately I’ve been standing in line waiting for yet another phase of my journey to accepting the fact that my type of alopecia is permanent. What? There’s another phase to this? I’ve accepted that my hair loss is permanent and also the way that I look without hair. It’s the unexpected things that seem to crop up with the type of alopecia I have that can get a little trying sometimes.
I’ve accepted so much since the beginning of my hair loss and have gotten through some rough times. That’s all I ever seem to talk about…acceptance, acceptance…acceptance. By nature, it’s what we do when we “hit a wall”, when we can’t go any further, when we have no other choice. What’s acceptance? Acceptance is the fact or state of being accepted or acceptable. That’s the dictionary’s explanation and for the most part, I think it’s a valid assessment. However, what that statement doesn’t address is all the work it takes to arrive at that “state of being”. I can tell you that my own experiences have proven that the road to acceptance was hard work and it’s a work in progress. You’ve got to stay on top of your game. Some days you come out swinging only to get knocked down to the ground but, you do get up.
And some days I get tired of having to accept the fact that I have alopecia. Some days I just feel content with “standing in line to surrender” to everything associated with having alopecia. Having alopecia can come with a lot of baggage such as the negative social stigmatisms, emotional and self-esteem issues and then there’s medical aspect of it all. And for some of us, we are not physically sick in the way most people make the association with diseases. I feel that puts us in a strange position sometimes. I’m finding out that there is no straight line to acceptance. There are peaks and valleys along the way. I realized that some days I’ am not going to feel good about my “acceptance” all the time. This is not a “woe is me” rant about how hard it is to have alopecia. I’m just keeping it real! I don’t feel good about the fact that I have alopecia everyday! I’m human!
I admire and respect all the men, woman and children I’ve met and spoken to who have had this disease all their lives. I think of all the different phases of their lives they’ve gone through and how they handled all those moments that their alopecia comes into question. Losing my hair at age 46, I’ve had to learn all those “little defense mechanisms” they’ve mastered in the course of their lives, all rolled up into one huge “crash course”! This is why I can’t beat up on myself for not “feeling good “about having to accept my hair loss every day. The point is that I do accept it, and with acceptance comes empowerment, education, sharing information, and this list can go on and on.
So for me, “standing in line to surrender” doesn’t mean “giving in” to alopecia.
I think it forces me to look at “what’s good about it” and focus on the positive, documenting, sharing information, working with medical researchers and most of all connecting with people like me who have real stories that I’ve become inspired and empowered by every day. The more we put our stories out there, the easier it will be for the next person who “googles” the word alopecia to put a face and head to this unpredictable disease alopecia.
Just this once…I don’t mind standing in line so much.

Monday, December 8, 2008

What Are You Staring At?



A while back I was walking through the West Palm Beach airport in Florida and spotted a bald woman walking in front of me. She was scheduled to take the same flight as me. At the time, I had a head full of hair. I remember thinking, “Did she choose to look like that? How could she walk out the door like that? I would have covered up, worn a wig or something. “She appeared to be healthy and was dressed attractively. I also remember feeling sorry for her. I just couldn’t imagine having to walk around in public like that. I assumed then that this had to be her choice... I pictured her to be an “artsy” type of person…you know the type…folks that march to a different drum than everyone else…creative people that don’t mind calling attention to themselves. How narrow minded of me to have these thoughts.
Since becoming an alopecian, there are times I find myself becoming agitated when people stare at me the same way. I’ll even become angry and wonder what they all find so amusing that they are unable to take their eyes off of me. Are they just staring at my strange fashion sense when looking at my colorful head wraps?... Or are they staring today because I have long curly hair and yesterday I had a sassy looking short hair cut? Maybe they are thinking that I’m some “backwards chameleon” looking to get attention on a busy work day morning. Nonetheless, I get agitated and sometimes grow weary of the stares. Sometimes I get so angry that I think, “I’m just going to freak them all out tomorrow by going “topless”, meaning nothing on my head that is!
Recently, I thought of the lady in the airport. Wow, I used to be like the people that stare at me. I’ve been so hard on those people, always wondering why the hell they were looking at me. I would get so angry at their curiosity.
Now that the shoe is on the other foot I see things much differently. People are going to stare and wonder. It’s only natural to do this if in the mundane routine of their day, they see someone or something that is different. With the type of alopecia I have it is sometimes impossible to put on a wig or hat to blend into the crowd.
AND…How about this novel idea? Maybe they think my bald head is beautiful!
Trying to control how people react to me is a waste of my time and energy. It serves absolutely no purpose to do this. That’s way too much weight to carry on my shoulders. I have enough baggage in trying to deal with the ramifications of protecting the thinning skin on my scalp from the heat and cold environments. For me, it’s about perceiving myself in a positive manner. Everything else is conducive to that very thought. I need to rely on my own voice of integrity in order to turn that negative energy I was feeling into a positive one…But, how does one go about doing this in a society that views having hair as a sign of health, beauty and status? I believe different answers to that question exist and the answers are as different as the individual posing the question. For me…, BE HEALTHY! I’ve decided to love what’s left of my body. There’s so much more to my physical being than my hair. As far as what I possess inside of me, well there are so many layers there, they are too numerous to mention, lots of which I have yet to discover.

Many of us don’t realize how much we hide behind our hair every day. It’s what frames our face. It makes us feel good especially when each strand is laying just the right way.
Framing my face still seems like the natural thing to do some days since I wasn’t bald all of my life. So, sometimes I overcompensate by wearing colorful head wraps, makeup, jewelry and clothes. It’s how I deal with some of my buried emotions regarding not having hair. I admire people who have had alopecia all their lives and appear to take not having hair all in stride. This is a learning process for me but I’m happy with just realizing that losing my hair in this stage of my life is just that…a learning process.
From time to time I may find the negative thoughts creeping back, that’s only human nature. Being able to put things back into the proper perspective is not always an easy feat for some of us. Maybe, I will learn to master this skill, hopefully to perfection. If not, I’ll just be content at being, “human”.

Thursday, December 4, 2008

New Philadelphia Alopecia Support Group



THE PHILADELPHIA ALOPECIA MEETUP GROUP

Crowned Regal, Founder of CROWNEDREGAL.COM has formed a local alopecia MeetUP group in Philadelphia dedicated to offering support and resources for people who have hair loss due to the autoimmune disease alopecia. The group was founded on December 1, 2008 by Annette Moore aka Crowned Regal. It's purpose is to provide face to face meetings for people with alopecia in the Philadelphia and nearby surrounding areas. Ms.Moore has plenty of experience regarding this disease. She knows first hand what issues "alopecians" are faced with on a daily basis. She was diagnosed with two forms of alopecia in 2007. She also brings with her, experience as a motivational speaker. Her story was recently featured on a local ABC affiliate television station and is dedicated to spreading awareness to alopecia through her official website, crownedregal.com, YouTube videos, awareness workshops and events and now as the founder and organizer of the Philadelphia Alopecia MeetUp Group.
Read more

Wednesday, November 26, 2008

Some Woman's Online Dating Profile






SCREEN NAME: beautyinsideandout


PROFILE PICTURE: Not Available



I'm a compassionate and loving person.

I am spiritually grounded and sensitive to other people's needs.

I enjoy sports, especially football and like the outdoors.

In the past, I have handled adversity well.

I don't require much to be happy, I want someone to love and respect me, care about me, someone respectable and appreciates the basic necessities of life.

Meeting people is something I enjoy.

Everyone has something important to say.
Give me a topic of conversation and I'll find something interesting to say about it. If you can't come up with a good topic, I'll find one that is interesting to both of us.

I'm a great listener.

I've made some huge mistakes in my life but have learned from them and moved on to better things.

I am an honest and supportive person.

Computer forensics, graphics, website design and building computers is one of my favorite pastimes.

I love tech stuff like iPods, Smart phones, podcasting, blogging, YouTubing, Googling, forum surfing and social networking .

I'm a loyal friend.
People usually confide in me to help with things they may not share with those closest to them.

Give me a fully stocked kitchen and watch me work some magic on your favorite dish.

I've always been a creative person.

I can dance my butt off.

I love music, period!

I love to have fun and feel happiest knowing and encouraging those around me to have just as much fun as I am.

I like quiet moments at home and believe you don't have to spend a lot of money to enjoy the good company of someone.

I'm a a responsible financial planner and great at managing my household.

I don't mind compromising in a relationship as long as neither partner has to compromise who they are.

I love to dress, sometimes classic, sometimes, professional, sometimes runway stylish, sometimes funky, sometimes unique but always stylish and tasteful.

I've been told that I am a very attractive woman. My legs are my best feature and I have been told that shoe designers had me in mind when making those great pair of high heeled pumps you see on the catwalk and runways.

I'm intelligent and have been successful in my career.
I have a great work ethic.

I love to snuggle and hug and make my partner feel important. I love to sneak away for spontaneously romantic moments. It's one of the things I do best.

I am open to my partner's ideas, suggestions and am willing to be flexible and try new things. I believe that in a partnership each person can contribute their own unique, positive and strongest of qualities.

I love to decorate a room.

I appreciate other's artistic abilities.

I love jewelry and accessories.

I like to smell good.

I absolutely love children.

I'm an aspiring writer.

I'm confident and positive in my thinking.

I have alopecia and I am completely bald.

Saturday, November 15, 2008

Tuesday, August 5, 2008

Thanks for Thinking of Me


I can't tell you how many times in the course of my day that people tap me on the shoulder and say" I thought of you today."

When I look into the mirror each day, I think of me too, but it's different from what others see. On most days I see a woman who is a work in progress...Always trying to find out what she needs to do to improve herself inside and out. I believe that one should make it part of their daily routine because it helps one to achieve their goals, fix what needs fixing, make sure things are in check, so to speak.

So when someone says to me in passing, "I thought of you today", I like to ask them "Why?". Recently, someone said to me, "I thought of you today because my friend is going through some hard times and has been feeling a little down because she's been ill. She's on chemo right now. My friend doesn't have what you have, but I thought she could relate to you because you seem to have accepted what has happened to you (referring to my baldness)."

WHAT? How does this relate to me?

When I asked, the person said, "Your story is inspirational in that it had to be difficult to lose your hair and somehow overcome it all. I couldn't have done that. It seems you have taken the bull by the horns, you've certainly made lemonade with no lemons." I said, "I lost my hair, and it was hard and I feel for your friend. But your friend is very ill and while I feel honored that you would look at me this way, I am so very surprised that you would relate to my story in this way."

If only I had a dime for every time that scenario has been presented to me...

Below are some other thoughts people have shared with me:

I thought of you today because I didn't have courage to shave my head for 20 years and I did it today. I feel liberated.

I thought of you today because I saw Robin Roberts on Good Morning America reveal her bald head on national television and she looked beautiful and courageous.

I thought of you today when my friend contacted me today and is being told that she may have scarring alopecia and she’s devastated.

I thought of you today because my mom has been receiving chemo and has lost all of her hair.

I thought of you today because my aunt wears a wig and hasn’t taken it off for years and I HAVE always wondered what was underneath that wig of hers.

I thought of you today because I relate to you so much. I’ve come to a place of acceptance since being released from rehab.

I thought of you today because, I am having a hard time trying to get through the day. My husband has been cheating on me and says that I am too fat. Your husband doesn't mind that you are bald and still loves you...If you can accept what you look like than so can I. I know there is someone who will love me for who I am.

I thought of you today because my 8 year old daughter has alopecia and is being teased at school.

I thought of you today because, my little girl saw a picture of you bald with a red dress on and wanted me to print it because she was so happy that the lady in the red dress looked like her.

I thought of you because I think that you should attend my workshop on hair alternatives.

I thought of you today because I would like you to attend the next center for disease control convention, they should know about your story. You should come with me...and the thoughts keep coming.

It's not just about me and only my struggles anymore. I have found that losing my hair isn’t just about me losing hair, it’s a gift that has been given to me to use as a tool to help inspire others to move past obstacles they are facing. Who knew?...Who knew that my bald head, my new identity, the very thing that I used to find so difficult to accept would be the very thing that would ultimately help to inspire others in their struggles in any way they choose to relate to my it.

So from this point forward, on the days that I continue to struggle with accepting the way that I look; be it my bald head or some other part of my body I feel needs some fixing;... I will think of the fact that there are people in this world who are thinking of me in a positive light. Now I can appreciate the person staring back at me in the mirror that much more.

What a wonderful gift my alopecia has been...and "thank you for thinking of me".

Saturday, March 29, 2008

Look What's Blooming! It's Springtime Again!




It's my favorite time of year. I love the anticipation of each day growing longer, love growing stronger and sifting through all the brightly colored clothing I missed wearing during the cold and gray winter months. It's also that time of year where I can't wait to see the flowers bloom and I begin to shed the layers of sweaters, coats, hats, gloves and heavy foot gear.

Today, I decided to pull out my brightly colored scarves and beautifully printed head coverings, light weight hats and short wigs. Doing this today, reminded me of the warm weather months to come and I thought to myself, "Not only is it time to shed the layers of clothing, but it's also time to reveal your head again. It's going to get too warm to tolerate the heat from wearing any of these head coverings". After going through one summer already, and one winter season as an alopecian, I thought I would be prepared to take on the world a a bald woman. Instead I found that sense of shame creep back inside of me. I was confused by these thoughts of shame I was having. I was on a train into work at the time and eerily felt the same as I did in the beginning stages of loosing my hair. This confusion kept knitting away at me like a needle to the brain. Why was I having these thoughts after all of the accomplishments that I've made toward acceptance? The only thing that I could come up with was that I had never been through the transition from the winter season to the spring season as an alopecian before. You see..., during the winter months I was able to cover up under suede hats and wigs on top of hoods and hoodies. I had developed a false sense of confidence regarding my feelings of being bald. It seemed that the confidence I had built up last summer by exposing my bald was lost. The only analogy that I can think of would be that of a child that had just taken a nasty fall off his bike and was afraid to get back on again. And to make matters worse, I moved to a new neighborhood with a new route to work, a different train, filled with different people. I have to get used to seeing them and they have to get used to seeing me, the bald woman in the neighborhood...but its OK. I'll find a way to reach down and pull on the same boot straps that got me this far in my journey to acceptance. I am ready for the stares, the comments, the sad faces, the giggles and snares! I have my "I LOVE ME" armour on and ready to rock! They will never have to know the turmoil that I still struggle with internally. I'll work it out somehow and keep forging on...all the while I will keep them all thinking, "LOOK WHAT'S BLOOMING! IT'S SPRINGTIME AGAIN! ISN'T SPRINGTIME BEAUTIFUL!"


Monday, March 17, 2008

New Social Network Launch - ALOPECIA WORLD!


Alopecia World is a new and exciting social network for those who have alopecia and their loved ones...or maybe you just want to stop by and see all those BEAUTIFUL bald people all in one place. The network is rich in content which includes the most up-to-date features found on a social networks today. Some of the many features include the ability to set up your own space (or web page), chat room, forums, groups, photo and video gallery. Let's not forget the best feature of all...a place to find and connect with fellow alopecians all over the world. This type of social network is the first of its kind and is quickly becoming the #1 place for alopecians and their loved ones. You will find men, women, children and their parents (includes support for parents of children with alopecia).

This unique and well put together social network was founded by Cheryl Carvery and her fiance Richard Jones. It's clear to see the passion, hard work and dedication that has gone into this project in the short time since its launch on March 8th, 2008. Membership is free provides an easy to use customizable look for its members. Visit Alopecia World at www.alopeciaworld.com.


I'm a proud member of Alopecia World. I have a feeling that we alopecians will be saying someday, "What did we all do before Alopecia World!". Kudos to its founders as well as its members!

Sunday, February 10, 2008

COULD LIGHTNING POSSIBLY STRIKE TWICE???


The answer is yes. Lightning definiately did strike twice for me regarding my alopecia diagnosis. You see, I was diagnosed with two different types of alopecia. I have Cicatricial Centrifugal Alopecia and Alopecia Totalis. What???...yeah, that was my reaction too. When diagnosed, I asked, "Wait one minute, you can have more that one type?...at the same time?" I didn't even know that there was more than one type. Well, not only is there more than one type; there are a couple of different catagories and under each catagory there are several types of alopecia.

Well, as my sister always says, "You can never do anything on the DL (the down low)." She's right. My diagnosis falls under two different catagories with two different types. Here's the deal, I have both scarring and non scarring alopecia. The Cicatricial Centrifugal Alopecia is of the scarring type while the Alopecia Totalis is of the non-scarring type. Alopecia Cicatricial (scarring) alopecia refers to a group of rare disorders which destroy the hair follicle and replace it with scar tissue, thereby causing permanent hair loss. Complete scalp hair loss is alopecia totalis (non-scarring type). Lucky Me!

I had the wonderful opportunity to meet some beautiful ladies who have alopecia over the weekend. They were all stuggling with lots of the same feelings and experiences as me. I was so inspired by each and every one of them. So not only does lightning strike twice in the same place, it can strike more than once at the same time and all over the world. It was so comforting to know that someone else out there looks and feels just like me. Like I said, "Lucky Me!".

To read more about alopecia visit http://www.crownedregal.com/links.htm