What’s That in Your Foot?

Before I talk about my hair woes, I wanted to put a picture up I created of me and Eric. I am a HUGE True Blood fan, and I’m really mad that HBO has been keeping me in suspense since I missed the last three episodes of the second season! It feels like its taking forever for them to just get through that first season of reruns. Anyway, Eric is one of my favorite characters from the show and I am posting this picture for my own absolute enjoyment. LOL

OK, Over the last month my hair loss has seemed to go into remission again. I say that with hesitation because it typically takes about six months to know for sure a person with alopecia is in remission. After keeping the swamp cooler off for three months, my circled patches started to grow back in and my hair started to fill out. Its coming in quite nicely again, with very little permanent loss. After shaving it off about three months ago, I had it in my mind to never try and grow my hair out again. It will never look or feel the same as it used to and it would be necessary for me to get some sort of hair system to make my hair look semi normal. I’m not into hair systems or toppers, and I only wanted to get a wig for days that I felt like mixing it up a bit. So why am I growing it back this time around? Well, about a month ago my scalp started hurting very bad. As I’d bic it, it felt like the razor was dulling with each stroke against the scalp. By the time I’d be done shaving it, my head felt like it was on fire and I’d end up nicking my scalp pretty bad. I don’t need any new interesting designs on my beautiful bald head due to razor scars! So I laid off the razor for awhile. As November came and went, it perplexed me as to why my razor would dull so bad and my head hurt like a million needles were being pierced through it.

One of the lovely side affects for some individuals living with Alopecia Areata (in its many forms) is the possibility of growing what looks like translucent hairs. To the ‘lucky’ people that have to deal with this strange phenomenon it is almost surreal to view. Guess who has these hairs growing in? Yup, yours truly. It isn’t a pleasant experience for me to feel them coming through my scalp, nor is it any comfort to feel them on my head. You see, they are like hard plastic strands of see-through hair. Ever hear of see-through hair? They shimmer when light is cast on them…they feel like freshly laid astro turf! There is nothing soft or pleasing, feeling hair you can’t even see. And these rogue hairs are dangerous too! I’d like to share an unbelievably true story that takes place in my bedroom just a few short weeks ago:

Picture this…it’s nightfall and all is well in our house. I settle into bed and Dom comes in the room and is walking around barefoot. All of the sudden, he starts to limp. “Ouch!” He exclaims as he makes his way over to the light so that he may better view the “thing” that has pierced his foot. He looks but doesn’t see anything. Then he says to me “Can you look to see what’s stuck in the bottom of my foot? I think there’s glass in there!” He limps over to me and puts his foot up on my lap. I look and look, and at first I didn’t see anything. I moved his foot closer to the light and I said “Yes! You do have something in your foot.” It was glass like in appearance but thin. I reached to pull it out, and I realized that it was one of those damn rogue translucent hairs! Oh-My-God! It went half way into his foot. I pulled it out and said “Its one of my HAIRS!” He said “No!” and I gave it to him so he could see for himself. My translucent hair is like shards of glass piercing my lover’s foot. How bizarre is that? Now imagine if my hair can do that to the tough underside of a man’s foot, what is it doing to my scalp?

At that point I realized why the blade was dulling on my razor so quickly too. You try shaving something that feels like thick hard plastic strands and see how far you get! The thickness of these hairs is also not the same as my regular hair…its thicker! I’ll be laying off the razor for a while until I don’t have any more pain, but I’m going to have to find either a very sharp industrial blade, or let it grow. I don’t even know how well an electric shaver would work at this point. I love being completely bald, but I can’t risk at this point damaging the skin on my scalp either.

The other issue I have with my hair now is that with these translucent hairs coming in, it looks like I have less hair than I really do. I can’t use conventional hair dyes because they trigger my autoimmune response and they don’t grab the white hair (another lovely part of alopecia) very well. I’ll have to try a henna dye in a dark brown. I’m unsure whether the white hair and the translucent hair would hold color with henna though. I know it would work for my gray hair (I have plenty of those!). I guess all I can do is try huh?

Bald Beauty of the Day

The Beautiful Susan Boyle

By now, everyone has heard about Susan Boyle, the woman who made every one’s jaw drop as she opened her mouth to sing. I LOVE this woman for her absolutely endearing personality, wonderful voice and stunning beauty. That’s right, I said stunning beauty. I have listened to what others have said about this Scottish Lass and I beg to disagree with their charges that she is not easy on the eyes!

I found it appalling that certain news sources would say something to the effect of this:

“Susan Boyle is an example for all those women out there in the world like her.” What the hell is that supposed to mean? Women like her? Is that their way of saying that she is homely, ugly, a dog? She has been called a spinster, “never been kissed”, and lots of other things. They wanted to do a “make over” on her and her response to them was something that only a perfect person could say. Basically she didn’t want to alter her appearance too much because then she wouldn’t be “real.” She didn’t want to give in to appearances and create a “falsehood.” What an elegant way to stick it to the media!

So, why did everyone think that this woman couldn’t sing? Was it because she wasn’t “perfect” according to society’s standard? She was sassy, had personality, and EVERYONE laughed at her and rolled their eyes. You know, all those people that couldn’t sing, couldn’t bear to be themselves physically and probably altered their own physical beauty to “fit in.” Who doesn’t alter their appearance? But back to the original question…why did everyone think she couldn’t sing? I must be really stupid, because I never believed that vocal chords were directly related to facial features and body size! Wow, I feel so sheepish! Here I was thinking that the discipline of singing had to do with vocal training and years of practice.

Is everyone amazed that she can sing because of the way she looks? Why? That is the most ridiculous thing I have ever witnessed. Was it her age? She is only seven years older than I am! If I got up to sing (and yes I can sing) and people saw me out there, would they laugh at me because I’m a fat 40 year old bald chick? What makes me any different than this siren sensation from Scotland?

Let me tell you what makes her so unbelievably beautiful, not just on the inside, but outwardly too. It is that she is and will always be who God made her to be. It is pure, unadulterated beauty. We suffer from illusions everyday. Women and men are constantly doing things to change who they are physically, and when someone comes along that bucks that illusion, we actually end up adoring them because they do what we only dream of. When someone doesn’t live in the shadows, afraid of what others will think about them, we admire them for their courage, strength and tenacity. Outward beauty they say fades with age, but I don’t believe that either. I think that with time, a person becomes more lovely. Her eyes are lovely and she shows what a real woman looks like. They put make up on her and I thought to myself, “Why?” Is it for our sakes? I think it is. It isn’t that physically she can’t be stomached, its because we can’t take the reality that she is real and we are not. Would she be easier on the eyes with a make over? Yes, but not for the reasons you may think. We have taken on societies twisted and skewed beliefs about what real beauty looks like, and if she puts on that make up, wears some nice clothing, loses some weight then WE will feel better about ourselves. That is at the heart of all of this. It is for the public’s sake that she is asked to do this…not for hers. She is perfect as she is. Her unspoiled purity can not be easily viewed by those who must live according to society’s rules about beauty and appearances. To change her amounts to the Gilding of a Lily.

Bald Beauty of the Day

My Hair Demons

I have been shaving off my healthy hair for six months now, and the thing that usually happens to me during the time that I shave it is the urge to grow it back. I enjoy being bald because I no longer fret about unhealthy looking balding areas and thin hair, but there will always be a part of me that wants to feel my hair. Other women I know who have shaved their heads have expressed feeling that maybe they don’t have the “peace” about it that I have…but what is peace? I think many believe peace is a warm and fluffy feeling with some sort of permanent smile plastered upon the face. That is not the peace I feel inside. My peace is acceptance that I have permanently lost my hair in many areas of my scalp, knowing full well that I could have another flare that will take even more hair from me and there is nothing that can be medically done about it. I have a peace that everything will be ok as a bald woman and that I look beautiful whether I have hair or not. This is my acceptance and this is my peace. But there is another side of me that will always want to grow my hair back. It doesn’t mean there is a lack of peace or acceptance, because I have also accepted that I still do have hair. I can live in both worlds…although the “bald world” is far less stressful for me emotionally. If I decide to grow my hair back, I know the consequences of such a choice. It’s bitter sweet at best. I can once again feel my hair, but how it will look and the texture of it will sadden me profoundly. It means constantly checking to make sure that my balding areas are covered and using a wide variety of products to make it look more full. Sounds like a lack of peace doesn’t it? It is a double edged sword and this sword cuts both ways. I see so many courageous women on the Womens Hair Loss Project Network who are faithful to do what it takes to keep the hair they have. I’m just plain chicken shit! I find it easier to keep it all shaved off and go out bald, than to stand in front of a mirror and attempt to have “normal looking hair.” I lack peace in that department. When I had hair, I could feel my blood pressure rise in the bathroom as I tried to make my hair look halfway decent. It would take hours of messing with it and then I was still not satisfied with the results. Since I also have non-scarring alopecia, I wondered if being out of the moldy house would cause those areas of my hair to grow back as well…but then I shaved my head again, there are the same areas of missing hair to contend with. I’m not sure what I will do at this point. The urge to grow it back is strong, and I guess by writing this entry I wanted to remind myself of the pain as well as the pleasure of having hair again. I don’t know if it is worth all the heart ache. Would I do myself a huge disservice by allowing it to grow? I know there are so many options for women who are losing their hair, from Derma Match that can be applied to the scalp, to wigs, toppers and hair systems. Yet all these options seem to pale in comparison to being bald. I find it hard to imagine myself applying something to my scalp to make it look like I have more hair and I find it equally difficult to imagine myself getting a hair system which is extremely costly and requires maintenance.

Hair demons are difficult to deal with and yet I continue to give them latitude in my thought life! If I do decide to allow my hair to grow back, I know that I will just end up shaving it off again during the next flare up of follicle death. I never know when the next flare up will come, but it usually comes once a year. Mold is a trigger to my flares, and with the mold problem corrected I wonder if I will have a flare this year. If my hair loss goes into remission it will be even more difficult to fight the urge to let my hair grow. There is only one draw back to being bald…not being able to feel my hair! There are so many drawbacks to letting it grow, yet the only reason for me to grow it is to feel it. I wish I had more resolve or strength to grow it back and accept that my hair is just funky, thin and balding. Instead I take comfort in knowing that I control whether I let it grow or shave it off and I continue to fight my hair demons with the hope that someday the urge to grow it back will be no more.

Do Men and Women Feel the Same Way About Hair Loss?

Do men and women struggle with the same issues emotionally when it comes to hair loss? I believe the they do. I asked my husband how he feels since he started to lose his hair, and this glazed over, pale look on his face said it all. Although I have been dealing with hair loss for the last five years, the thought that he could also now be dealing with his own loss has him stuck like a deer in the head lights.

My husband started to develop bald patches in his eyebrows, a quarter sized bald patch in his chest hair, and the hair on his head has started to shed quite a bit. My two younger children have experienced similar hair loss and we believe that they are also affected by the mold that we have in the house we are currently renting.

I wanted to understand what he was feeling about losing his hair, and it was so profoundly deep that he could barely bring himself to talk about it. He has accepted my hair loss and he has embraced loving me as an Alopecian woman, but will he be able to accept himself if his hair loss does not resolve itself? Will he begin to move away from me emotionally and bury his pain deep inside where I can not reach him? His hair is absolutely stunning and creates a softness to his face and features. It is natural for him to feel pain and anguish over losing it but my hope is that he will continue to stay open to me emotionally so that he can move forward with his life continuing to reach toward his goals, dreams and desires. Hair loss has a way of stopping these thing dead in their tracks for a time and the emotionally paralysing affects can bring us into a place of isolation, loneliness and despair.

I believe that men feel just as much torment over losing their hair as women do, it is after all a part of the human condition.

Self Acceptance is a Hard Mistress

I always think of self-acceptance as a “Hard Mistress” if I am not married to it. In our lives during the times of hair loss, we may “mess around” with self-acceptance, but never fully commit to it. This makes self-acceptance a mistress instead a life long lover and partner. We make self-acceptance a temptress, seductive and alluring, but always some how just beyond our reach, calling on her when we are bored with what we have chosen to “marry” and be our life long partner.

I, like so many other people out there chose to “marry” the acceptance that the world and society said was right for me. She was that perfect beauty, ageless, flawless, always fun, carefree and rich. I chose her because everyone around me told me that she was worth it, and that I would be happy if I espoused her and embraced her. But on my wedding night I found that she was not at all what everyone told me she would be. She was cruel, harsh, demanding and full of contempt for my imperfections. She was impatient with my frailties and found them to be totally unacceptable. She mocked me for not looking like the “beautiful people” and said I was less than worthy when I needed her most. Her love for me was based only on what I could give her and how I could make her feel and she gave nothing in return. Her love was an illusion and her beauty faded. I began to avoid her, isolating myself and retreating from all her friends. I feared rejection from her so I kept trying to please her!
But along came this mistress called self-acceptance. She could look deep within my soul and see me for who I was. She had a way of making me feel so special and when I was with her time stood still. She was wise, caring and knew me so completely. When I gazed upon her, it aroused me to be a better person, filled with passion, drive, courage, and life. But she wanted more than I was willing to give and I wasn’t willing to leave the one I married. Feeling hurt, my mistress retreated and hid from me. One day I was filled with jealousy because I saw her with another lover! What could I do to have her back? How do I tell her that she means more to me than the one I chose to marry?

Shall I go home to the one I married, miserable and defeated? Or shall I find my mistress and take her once again and make a committment to love her and adore her…to cherish her and show her just how much she means to me.
She will accept nothing less than that, and that is why she is such a Hard Mistress.

Shh!!! I’m Hiding!

For five years I have looked at having alopecia as something to be ashamed or embarrassed of. I often felt that horrible feeling but never really explored what it meant to me personally. What was it exactly that I was so embarrassed of? Was it the loss of my hair? Maybe that was part of it, but that wasn’t all of it. Losing my hair was a big deal, but does that mean I was vain? At the time I thought so. I hid it away, where it sat and festered like an angry boil, hot and throbbing…I began to hate myself for thinking I was vain. Loathing the very idea, that, as someone who has never cared about the appearances of others’, I couldn’t stand to look at myself. How did that happen? Was God bringing me through some test to reveal hidden vanity? I searched my soul, and yet I couldn’t repent. Was I in denial? I have always loved who I am, but now, my world was rocked by this fear that I was in fact vain! Why couldn’t I repent? I searched some more, and realised that it wasn’t vanity…it was my hiding.
I have always believed in being who I was no matter what. I cared very little whether people accepted me based on my looks, personality, spirituality or mental ability. But I became duplicitous. I became a false witness unto myself, and decieved everyone around me.
I repented before God for my duplicitousness and the shame and embarrassment melted away.
So where do I go from here?
I have read through many comments and blogs, and some of the things that I have gleaned from this beautiful Alopecian family of mine, is that many wish they could “come out.” They have hoped for a way to let others know that they do not have cancer, and wished that they didn’t have to keep explaining to everyone that was curious. They longed for a way to be able to spot a fellow Alopecian in the crowd, just to send a smile or even be able to approach them. But how do we do that?
I believe there is a way. Isn’t it possible for us to tell others “I am an Alopecian?” Instead of always having to say “I have alopecia?”
As I was thinking of those two sayings, I realised that to say “I am an Alopecian” conveys a feeling of acceptance that “this is who I am physically.” And to say “I have alopecia”, well, it sounds like a it could be contagious. It leaves a feeling of fear with the person who may have never heard of it before. Words are powerful. They can hurt, but they can also heal.
Can we in some way legally make Alopecians yet another tribe of people? There are laws that are created for people with disabilities, sexual orientation, race, religion, and even animals. I know that all of us fit into many of these categories, but I think that the law should be revisited for Alopecians.
I believe that as Alopecians, we can be proud of the fact that we can blend into the world around us, and we can also stand out. It is our right. To tell others “I am an Alopecian”, is to inform them of two simple truths…first, that our hair falls out and sometimes grows back and second, that we change. It gives women and men the freedom to wear what feels most comfortable for them on their heads and it gives them the option to go aunatural if they want to. I think by saying to others “I am an Alopecian”, we are no longer trying to fit into their mold of perceived beauty, and we make it “normal” to blend or stand out whenever we feel like it.
This leads me to a question for all of you…
Would you be interested in adopting a symbol to represent the Alopecian? I would love to start an international campaign to not only to bring awareness to alopecia in its many forms, but also to be officially known as Alopecians. I would like to adopt the chameleon for the campaign, because we can blend or we can stand out! It could be a beautiful pin, a necklace or some sort of jewelry…a tee-shirt or symbol on a hat. Whatever you would like to wear, that can be identified by other Alopecians out there. How many suffer in silence? I think it can be a clever way for others to know…AND for us to find each other out there.
What do you think?
On a personal note, I feel really exposed right now. LOL I wanted to share my personal deep feelings, and I, in no way am saying that others that may have read my personal confession are just like me. My desire was to share where I came from, and where I want to go from here. But I can’t do it alone, nor do I want to.