Alopecia World
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things and stuff, with occasional poignant thought.
I've been away for a while. Busy, with all of those things and stuff, but thought I'd pop in and beam an update into the yonder.
I attended HairExpo2011 this long weekend with the lovely ladies (and men) of the Australian Alopecia Areata Foundation - I've been calling it the AAAF (pronounced "arf" :P ). It was fantastic! I met some of the nicest people, got to spread the good word about alopecia, and hugged some total strangers. A little exhausting, but awesome. It was also the first time in years I've taken my wig off (and on and off and on and off) in public. It was a really lovely atmosphere to do it in - all the people around really got what its all about. I liked that.
I've also since posted m first bald pic on facebook!! I always tend to wear my wig or scarves, but now theres a pic of my very shiny head on show at the expo.
Having done that, I'm planning to step out properly without it. Friday I have training and group work at a friends for drama. I'm not sure about training, but I'm definately rocking up to said friends au naturale.
There was an interview aired this morning on a news show with the girl from Baby Let Your Hair Hang Down (which I'm really looking forward to). A close male friend of mine - i don't often discuss in depth my alopecia with my guy friends - saw it and asked me about it. We had a really good proper talk about the whole thing. It felt really awesome to know that that segment had opened up a real discussion. I hope the same happened all over Oz.
Random thought I had - At the expo, and on here and in the tv segment, everyone talks a lot about treatment. Cortizone and herbs and oils and acupuncture. Yet everyone also says there isn't a cure. I've had this for 14 years now. It ain't going away. I really believe there isn't a cure for the kind of alopecia I have --- I say 'the kind that I have' because alopecia is different for every person and there is every chance that you, dear reader, could be rupunzel next year. But not me. That's just what I believe. I'm happier believing I'm like this for good. When ever I used to try treatments I would get so hopeful only to have them completely dashed. I would go into really deep funks and be completely inaccessible. Now I've got some acceptance.
I was just curious to know if any of you others out there share my thought - I'd rather be trying to get rid of my annoying, patchy, useless regrowth than waste time, money and energy on another snake oil.
And on a side note with nothing to do with my shiny baldness - my school concert band (wind orchestra), in which I play 1st trumpet, auditioned to play at the Opera House. WE GOT IN!!!! Musical groups from primary and secondary schools all over the country are going. It is so very very cool! :D
I attended HairExpo2011 this long weekend with the lovely ladies (and men) of the Australian Alopecia Areata Foundation - I've been calling it the AAAF (pronounced "arf" :P ). It was fantastic! I met some of the nicest people, got to spread the good word about alopecia, and hugged some total strangers. A little exhausting, but awesome. It was also the first time in years I've taken my wig off (and on and off and on and off) in public. It was a really lovely atmosphere to do it in - all the people around really got what its all about. I liked that.
I've also since posted m first bald pic on facebook!! I always tend to wear my wig or scarves, but now theres a pic of my very shiny head on show at the expo.
Having done that, I'm planning to step out properly without it. Friday I have training and group work at a friends for drama. I'm not sure about training, but I'm definately rocking up to said friends au naturale.
There was an interview aired this morning on a news show with the girl from Baby Let Your Hair Hang Down (which I'm really looking forward to). A close male friend of mine - i don't often discuss in depth my alopecia with my guy friends - saw it and asked me about it. We had a really good proper talk about the whole thing. It felt really awesome to know that that segment had opened up a real discussion. I hope the same happened all over Oz.
Random thought I had - At the expo, and on here and in the tv segment, everyone talks a lot about treatment. Cortizone and herbs and oils and acupuncture. Yet everyone also says there isn't a cure. I've had this for 14 years now. It ain't going away. I really believe there isn't a cure for the kind of alopecia I have --- I say 'the kind that I have' because alopecia is different for every person and there is every chance that you, dear reader, could be rupunzel next year. But not me. That's just what I believe. I'm happier believing I'm like this for good. When ever I used to try treatments I would get so hopeful only to have them completely dashed. I would go into really deep funks and be completely inaccessible. Now I've got some acceptance.
I was just curious to know if any of you others out there share my thought - I'd rather be trying to get rid of my annoying, patchy, useless regrowth than waste time, money and energy on another snake oil.
And on a side note with nothing to do with my shiny baldness - my school concert band (wind orchestra), in which I play 1st trumpet, auditioned to play at the Opera House. WE GOT IN!!!! Musical groups from primary and secondary schools all over the country are going. It is so very very cool! :D
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Comment by Tallgirl on June 15, 2011 at 12:41pm
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Selling treatments and shots has to be a good business for people who know that they may have a client for a long time, since there is no real cure yet. I, too, decided to give up on the waiting stress. Now, I just wear a wig, hat, scarf...and go shaved at home. I think the pressure mentally comes more for those looking for a partner, who are wondering how and when to tell, what to wear, what to do if rejected. Or those who may be teased in public or pressured by family. Because I have already been married and have weathered all the above, I move on to other things in life, like job-hunting, going to concerts, etc. The alopecia is no longer a distracter from my life. In fact, recently my experiments with revealing a shaved look have sparked some interesting comments and conversations from friends...all favorable!
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Comment by Georgia Gardner on June 16, 2011 at 7:33pm
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thats really sweet. I agree, being off the young, high-schooling, and single crowd, that those pressures are probably where it comes from. I'm just glad I got it when I was little, not in my teens. That would be such a hard adjustment.
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Comment by Pat on June 17, 2011 at 3:50am
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I agree with you about treatments...I've tried a few with zero results...now I've accepted I'll be bald into old age..omg I'm nearly there, well in just a few years anyway! But that's okay, I have beautiful wigs to keep me company and I'm getting better and better at showing my bald head without dying a thousand deaths :) Congrats on playing at the Opera House..a great venue, you'll be great!
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