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Comment by LouiseMadeline on April 22, 2012 at 7:16pm

Thank you....I so appreciate your input, as I know you know exactly what I'm going through. I am only 4 months into my alopecia universalis, my hair fell out extremely quickly. I lost all of my head hair in two weeks, then my body hair in two months. So, I'm just now coming out of shock and I'm not really prepared for the "worlds' assessment". Each new experience is a new challenge...what I once gave absolutely no thought about, now requires careful preparation for. Thank you all for your input and support.

Comment by KimF4L on April 22, 2012 at 4:47pm

I think you should toss out the vanity and do what you said...walk out head high, no lashes, no fake brows, maybe a hat, bandana or scarf at first...but walk out being you and leave the masks behind =)

Comment by Garden Girl on April 22, 2012 at 3:39pm

Hi Louise,
I can understand how uncomfortable that conversation could have been. I was also wondering if in an awkward way, those ladies were genuinely interested and concerned but just really awkward about communicating it.
You mentioned that you were starting to get to a better place with your appearance. Funny, I didn't take it that they were saying you don't look good. I know some women can be catty and there is a criticism couched in a compliment though! Hang in there, we are here for each other!

Comment by JeffreySF on April 21, 2012 at 10:56pm

You're Welcome!

Comment by LouiseMadeline on April 21, 2012 at 9:49pm

Thank you, a really appreciate your kind words.

Comment by JeffreySF on April 21, 2012 at 11:55am

Hi Louise,
Sorry you had a bad experience today.
Being that your alopecia is so new to you Im sure your emotional state is quite delicate. Sometimes people say things without thinking and yes some people are just rude.
Hope you are feeling better.

Comment by LouiseMadeline on April 21, 2012 at 10:10am

Being new to this alopecia universalis, I am still experiencing many emotional issues and am feeling very much alone....

I had a situation today that has left me hurt, confused and insecure about myself.  In a nutshell, my neighborhood lady acquantences invited me to a luncheon at a local restaurant.  Because I am fairly good friends with one of the ladies, I accepted, but my gut was telling me that it was a mistake to go...I ignored my gut and went anyway.  Now, these are neighbors that I don't know well and only see them 3 or 4 times a year.  Well, there we are, 5 of us at a round table in a nice restaurant in Northport, when my neighbor to my right(who is a hairdresser) says, "Louise, what brand of false eye lashes are you wearing"?  I almost died...all the others chimed in with, "you're wearing false eyelashes?".... Oh my God!!! Blah blah blah...I wanted to fade away and disappear, but I held my compossure and told them "Revlon", then the barrage of questions followed about what kind of glue, how long did it take me to learn how to use them....on and on...I held up ok, didn't tell them the truth about my complete loss of head, facial and body hair, but came home and wanted to scream.  How does one woman, who is a virtual stranger to another, think its ok to ask such a personal question in front of a group of other women??? Didn't her mother teach her any manners?? This makes Wisteria Lane look like Maybury.  I have worked so hard on trying to produce a natural look, but now feel like I'm only fooling myself...this journey has been incredibly difficult and just when I thought I had a handle on it, this happens....everyone who knows the truth about what happened to me, says I look great...then a stranger comes along and sees through it all....it's so painful.  I'm not sure if I handled it correctly or if I could have been sharper or wiser or more curt....shit, my first "outting" since this nightmare began, and it only tells me that the nightmare is far from over... I am tempted to walk out of my house, bald head held high, no eyebrows or lashes and screw them all...but I am way to vein to take this drastic step...I just don't know what to do...other than, avoid them all and follow my gut, in the future...I'm all cried out over this one....

Sent from my iPad

Comment by Marisa on April 14, 2012 at 8:19pm

Has anyone ever tried a Gabor wig? I usually get Revlon, since they have a lot of hair...I tried a Raquel Welch and it seemed skimpy on the hair. Just wondering..thanks.

Comment by Alyce Jayne Martin on April 11, 2012 at 9:09pm

I have had alopecia universalis most of my life. Just wanted to share my newest hairpiece.

I purchased a gripper sport from Follea.

I will be traveling to Baltimore April 14th and 15th to show other people my gripper. I will also be in Columbus, Ohio on April 21st and 22nd.

Let me know if you are interested!

Comment by Alayna's dad on April 5, 2012 at 12:04am

Thank you Susan. Yes it would be a dream come true to visit a conference.
My daughter and I enjoyed watching the "Alopecia Girls" perform at the last conference. It was amazing!

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