Okay. I tried it. I went to poetry potluck/reading today with safe church people at a private home and, fortified with Bravery Juice, read my 10-stanza poem (which I wrote during the church service...shhh) about coming out with my bald head. I took the wig off at stanza #5. Applause came at the end, but, surprisingly, there were no questions from the uninformed few about what condition I even HAVE! I kept the wig off, and the rest of the readings just went on with no hoopla.…
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Added by Tallgirl on November 15, 2010 at 1:00am —
6 Comments
Okay, Americans: what are this year's ideas besides
Uncle Fester,
Dr. Evil,
Mr. Clean,
Gollum,
Freddy Kruger,
Charlie Brown,
Mace Windu,
Evey from “V for Vendetta,”
Kenneth the Zombie Killer,
Lex Luthor,
John Coffey,
Yoda,
Homer Simpson,
John Shaft,
Dr. Evil, and
Mr. Magoo?
What did you choose? Post photos here!
Added by Tallgirl on October 24, 2010 at 9:00am —
11 Comments
Okay. Enough depression. This blog is for The Bold and The Brave and the Ridiculous! Jump in whenever you JUST did something that was brave to do with alopecia. Let's keep it rolling! Remember...current. Today. Just now. 1-2-3-GO!
(Remember, I have to approve these when I am at my computer, and to make sure the comments are appropriate.)
How can we out-do each other on positive risks-of-ego? :)
Complete the sentence:
Even though I have alopecia, I…
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Added by Tallgirl on October 19, 2010 at 9:00pm —
6 Comments
Most of us can pinpoint The Moment when something big happened (Elvis died, Neil Armstrong stepped onto the moon, Challenger exploded, Kennedy was shot, Princess Diana died, Michael Jackson died, Twin Towers...).
What about the moment you realized you would stay bald forever (or thought you would), and said to the heavens, "Well. Okay, then," and just did what you had to do, from then on, as a person with hair loss...no more prayers, tears, bargaining, shots, etc.? When was that,…
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Added by Tallgirl on September 26, 2010 at 9:30pm —
9 Comments
So what. No hair. Once you are no longer relating to the world like high school, wanting a model or wanting validation about your own looks, you know you will be looking for some human qualities in others that please you and make you comfortable.
We all know that silly list that goes on dating sites about eye color, hair, body type etc. They never ask the real questions.
Likewise, when caught up in alopecia fears, maybe we lose sight of what it is WE have to give…
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Added by Tallgirl on September 17, 2010 at 2:00am —
8 Comments
So, alopecians...do you find yourself putting off going out (to where the opposite sex is), flirting, dates, expression of love, sex, engagement, marriage (hey, my order may be off for some of you...sorry...) until some assumed date that hair will miraculously all grow back? How many great ones did you let get away while doing so? How many Practice People did you waste time with or experiment revealing to, just to "get the experience" before The Real One? Most importantly, however...what do you…
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Added by Tallgirl on September 6, 2010 at 3:00pm —
5 Comments
Even if we each feel like the odd duck out sometimes, we must admit that there are places, people and situations we love that make us forget we even HAVE alopecia. Family cabin around the fire? Reunion at an old favorite hang-out with familiar childhood pals? Coming home to a cozy evening with music known-by-heart, and singing like on stage? Sleeping in and then yakking on the phone Saturday morning? Coffee shop with newspaper? Eating homemade pies with aunts? Fess up. Where, what, whom is HOME…
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Added by Tallgirl on September 1, 2010 at 9:58pm —
4 Comments
What I am wondering is, how many uninformed non-alopecia people out there may harbor a secret doubt about this condition in regards to passing on genes...and skulk away from a Good Thing with alopecians (like the CHICKENS that they are...cluck, cluck!)?
No one else at all in my family has alopecia, and believe me, I have gone back to the 1800s in my research.
But.
After thinking about my dating years ago, I wonder now if some of the haired guys, due to their own…
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Added by Tallgirl on August 22, 2010 at 9:00am —
6 Comments
There are a million stories out there about parents who contributed to angst, but I would like to hear what are the BEST things your parents did for you as a young person with alopecia, aside from medical appointments and wig purchases. How did your folks secretly get you out of a funk about hair loss?
Mine let me quit piano lessons and enroll in a special summer drawing class (I am really a visual artist) at Cranbrook Institute. They let me go to all the summer camps and weekend…
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Added by Tallgirl on August 18, 2010 at 9:00am —
2 Comments
Isn't it remarkable that in 2010 we can put out our alopecian thoughts and fears (be they medical, personal or social) online...and that someone, somewhere, whom we have never met, from anywhere in the world, may be reading and answering at any time of the day or night? That someone, somewhere, may be putting out a little thought of hope or prayer for our situations, or have the very answer we need? Imagine how amazing it is for those of us who went through MANY years of no computer at all…
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Added by Tallgirl on August 12, 2010 at 10:45am —
35 Comments
Oh, the comfort!
The inexpressible comfort
Of feeling safe with a person,
Having neither to weigh thoughts
Nor measure words,
But pouring them all right out,
Chaff and grain together;
Certain that a faithful hand
Will take and sift them,
Keep what is worth keeping,
And with the breath of kindness,
Blow the rest away.
Added by Tallgirl on August 1, 2010 at 4:00pm —
5 Comments
Seems to me we need to come up with some uplifting songs as therapy. Some of you have found great ones for your profile pages, but there isn't one place to collect them all. I wonder if we can list some of the songs that saved us, gave us hope, reassured us, etc. and see if rj and Cheryl can come up with a way to click on them as we do with photos and videos. If not, we can always Google the You-Tube videos or recordings.
I'll start with six:
Don't Let the Sun Catch You…
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Added by Tallgirl on July 25, 2010 at 10:00pm —
45 Comments
I suppose if one is afraid to try anything new due to reasons like tiltable wigs, social insecurity, or irrational fears (like bridges and highways, insane clowns or kapusta festivals), then one might avoid all sorts of open-air, windy, or active endeavors, and stay safe with indoor hobbies. (ME? Reading, talking, art, music, movies, study, work). As a wearer of elastic-held wigs (caps too hot in California), I can understand the trade-offs that I have made in life.
You gals who are…
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Added by Tallgirl on July 21, 2010 at 1:30am —
29 Comments
I know some of you ladies on this site are stressing lately over having that perfect man unconditionally love you with your alopecia. Don't forget, however, that YOU are still the princess, the woman, the jewel, the future mother to his children, his future companion, etc....and that there is more to consider than that one-hour initial revelation. HE may be a philanderer, addict, poor manager of time and resources, and so forth...so YOU should be the choosy one, not him! Chances are you have…
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Added by Tallgirl on July 10, 2010 at 1:30pm —
4 Comments
Alopecia may be the most visible thing about your body that differs from others from the neck up, but if that VISION is what bothers you, you can change the vision to something you will accept for yourself, even if it is not "original" or "perfect."
Instead of concentrating on only ONE aspect, however (sight), you can assess your other senses as well (sound, smell, taste, touch), plus aspects of heart, mind, humor, empathy, creativity, musical or artistic talent, movement, verbal…
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Added by Tallgirl on June 13, 2010 at 10:54pm —
4 Comments
I just bare it in certain places, not in others. Why does it have to be all or nothing? It's your head. You get to choose where and when and with whom and for how long you will feel comfortable!
Added by Tallgirl on September 6, 2009 at 9:14pm —
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Another "What If?" came to mind. What if we were to put alopecians on The Bachelor or The Bachelorette, where true personality would rule instead of hair? Where the public and private dates had to focus on true acceptance and support, and where the home dates put alopecia forth to family members and best friends? Wouldn't it be great if all 30 candidates had alopecia...and the main person looking for a spouse did, too? What a lesson that would be for America! I invite brainstorming comments…
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Added by Tallgirl on July 6, 2009 at 11:39pm —
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What if we got this so we COULD experiment with looks, love, acceptance and changes in ways others cannot? If so, then what is so strange about totally changing what hair texture, color, curliness, etc. we were born with to something totally unique, or to a dream style? What if we are the ones allowed to have fun with hair and not have to constantly get cuts, perms, etc.? What if we are the ones who can get out to work sooner by plopping a wig on? What if we can avoid the gray long after all…
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Added by Tallgirl on July 6, 2009 at 9:45pm —
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Okay...two blog posts in one weekend on rude women in stores who comment on children, and on bosses and co-workers who (doctors, yet!) exposing an alopecian in front of staff...I have to say something. These insensitive people need to be held up as poor examples so they can know what they do to others, then be educated in empathy and medical facts. Others in town need to recognize and help them in our behalf if we are shy. We would be doing them a service if we can get them to STOP hurting…
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Added by Tallgirl on March 8, 2009 at 1:50pm —
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