0

Lee

43, Female

Arlington, VA

United States

Profile Information:

Relationship Status:: Engaged
About Me:: hey Im Lee! I had AU since Oct '07, don't like it but I am dealing! I tried everything...nothing is working...so I gave up and I'm doing things that make me happy ; ) I love talking to people about this because it makes me feel like I'm not alone. I live in NYC and I LOVE music..its my life! I'm in a band (website: http://www.myspace.com/betterthanstatic) where I sing and play guitar. I guess thats me in a nutshell ; )

Update...moved to Arlingon, VA...not in a band anymore ; ( and I have asthma now...so, trying to deal with that the best I can. Would take alopecia over asthma ANY DAY!
Do you have alopecia?: Alopecia universalis
Are you age 18 or older?: Yes - I am 18 or older
Your Website (Leave blank if you don't have one):: http://myspace.com/leanna1127

Comment Wall:

Load Previous Comments

Nezz

Hey Lee, I'm Inez.
Nice to "meet" you, I just wanted to say hi, you look lovely. I was reading one of you entries about you eyelashes and if you wouldn't have said so I wouldn't have realized you had none.
I love your wig, I'd really like to know where you got it from and how much it cost if you don't mind me asking.
Thanks, I'll look forward to having a chat sometime.
Take care,
Nezz
xxx

Aug 28, 2008
Nezz

Hi again, I just read you have 3 wigs, one synthetic, one lace and one vacuum?
Which is the best?
xx

Aug 28, 2008
Jennifer M

Thank you so much! So are you!
Hope everything's all good with you?
New York?? I would do ANYTHING, to go to NYC today. I am longing for the city... I've been checking out flights all day!
Where in NYC do you live?
Hugs!

Sep 7, 2008
Nezz

Hey Lee, how have u been doing?
I'm still wig hunting and have a few questions for u! hehe.
Not many people ask this but is quite important to me, can u put your hair in a ponytail, bun or just a really low ponytail? Can u do anything with clips and slides with it like u can with real hair? Or would the "false scalp" be noticeable?
Would soo apretiate if u could let me know, especially interested in the vacuum one but do't mind knowing about the other as I would have to get a synthetic whilst waiting for the vacuum if i were to decide on one.
Hope u'r coping well!
Take care,
Nezz
xxx

Sep 11, 2008
Orbit

Hi Lee! Thanks for the kind compliment! Its sometimes hard to tell online but I think that with your complexion you could certainly pull off being a redhead :-) (even if its just for a few nights of fun with the beau!!). Hope all is going well for you down in NYC. Have yourself a great day beautiful!

Sep 16, 2008
Nezz

Hi Lee thanks for the advice :)
I'll keep you posted on what does on with this head, hehe
Take care
xxxxxxxxxxxxx

Sep 16, 2008
Terri

Hey Lee:

Your pictures are great. Your hairpieces look wonderful. I have a 12 year old with AU. She has had this for 3 years. I am not currently pleased w/ our hairpiece. Where do you get yours from? I like what you told Inez about a high pony tail. That is the one thing that my little girl misses so much. She wears a vacuum sealed wig with real hair, but I just dont like this one. It is frizzy and wavy and thin. It was about $2600.00! Tell me more about your hair pieces!
Terri

Sep 20, 2008
kelley

Lee, I am 31 and just shaved my head this weekend...what an emotional time! Debbie Fuller did it...I just got a vacuum prosthesis...I saw your pic on her website...did she do yours too? Im having such a hard time with this...It helps looking through this site and finding people young like me...dealing with it...
Kelley

Oct 15, 2008
Sharon

Hi Lee I was reading on a message here that you are willing to share eye make up tips. Nicole is 12 tomorrow and has a few top eyelashes in the middle of each lid and no lower lashes or eyebrows. She wears false eyebrows which are great (not sure what to do when swimming season arrives tho could be interesting at school) when she wears eyeliner it looks great but I just don't think she is comfortable wearing makeup at school yet. She finds it really difficult to get her false eyelashes on and has given up on them. If you have any tips we would be very appreciative of them.

Cheers Sharon

Oct 16, 2008
bee.

hey!
sorry i've been so out of touch lately, i never get on here much anymore, i've been in like this depression hole lately. BUT i use i don't even know what their called, haha...it's just eyelashes you can buy in makeup at Walmart or any other drugstore, really. I use number 33's mostly, the longer and the darker is always better for me. But if you like lighter ones then you just get whichever ones suit you best. It's actually easiest if you put your eyeliner and eyeshadow on before eyelashes, like, put eyeliner on the top too and do your shadow just like you would, then put the lashes on.
I miss talking to you though! i hope all is well, stay positive and remember that you're freakin' beautiful with or without hair, beauty is in the eye of the beholder. Im actually strugging with that alot lately, i forget that even if i do see myself as beautiful alot of other people do, and that always helps me, lol. But hopefully i'll talk to you soon!
xoxo

Nov 9, 2008
Kelli

Hi Lee - Thanks for commenting on my mono discussion. I think it is interesting to learn more about people and health issues/symptoms that we share. This may lead us to know more about why people may develop alopecia and if we share this information with each other, we might be on to something!! I thought that was what these message boards are for :). Its unfortunate that other people on the boards are so negative about trying to discover more out about alopecia and look down upon us because we want to learn more about each other!

Nov 19, 2008
rj, Co-founder

Nov 27, 2008
LeslieAnn Butler

Hey Lee, that is fantastic that you are enjoying my book! I'm so happy about that. And it's a great idea to give it to your guy to read as well.
Remember, there's nothing wrong with hiding your alopecia. Don't be ashamed of wanting to wear a wig. Acceptance means that you love yourself and who you are, whether you want to go without hair, or always wear it. I choose to wear a wig at all times -- I have for 30 years -- that's my preference, and I don't feel badly about myself for my choice.
Big hugs!

Dec 10, 2008
Debbi Fuller

Hi Lee,
That's GREAT! I know it's scary at first, but they DO stay on just fine for swimming! You need to find yourself a 'sugar daddy' to buy you hair, hehehe!!
Debbi

Dec 13, 2008
LeslieAnn Butler

Since I am not a swimmer or soccer player, et al, I really don't need a vacuum wig. I have some that stay on really well with a poly base, but they are too hot for me. I prefer the ones that have more ventilation.
xoxo!!

Dec 13, 2008
Debbi Fuller

Hi Lee,
You're right. They really are SO worth the price and I've often heard of people paying even MORE for a net base!! Why would anyone do that? As for Leslie's comment, I don't get it. I don't wear a vacuum because I swim or ski, I wear it because it looks more REAL!! The security is a big plus of coarse, but the main reason is how great it looks!

Dec 15, 2008
Debbi Fuller

Hi Lee,
Feel free to share those comments with anyone who will listen!!
Merry Christmas! - or, whatever!!
Debbi

Dec 17, 2008
Donna Schillaci

Hi Lee,
How are you. I see you've been talking with my buddy Debbie Fuller. She's a great gal! What part of the country do you live in? Look forward to chatting with you in the future. Happy Holidays
Donna~

Dec 17, 2008
Kimberly

Hi there. I have just been told I have Alopecia Areata. I have my own hair and currently the spots are hidden. What kind of wig do you wear? I read that you went swimming and it didn't come off. How much did it cost?

Dec 19, 2008
amanda~

Hi Lee,
Just wanted to say hello and tell you that you look great and I love the color of your new wig. I definitely understand your frustration wtih the insurance companies. Although I live in Canada & I know it's a bit different, I do understand the agrivation of hearing "it's cosmetic and not necessary" I think that is complete & total garbage and it's easy to say things like that when you don't know what you're talking about, but not when you're knee deep in it. Keep us posted.
amanda~
amanda~

Dec 24, 2008
Alexandra

Hi Lee!
Thanks for responding to my blog about vacuum wigs. I'm hearing really great things about those Freedom Wigs, so if ever I need to get one, I'm pretty sure that's the company I'll contact.
You said that none of those companies offered long blonde wigs. (Darn! Haha) I'm sure they did offer wigs that were blonde, though, right? How long was the longest blonde wig for sale? I'm either considering blonde or bright strawberryish red. I'm sure that's not too natural, but shoot for the stars, ey?
Have you had any experience bleaching or dying your wigs? If so, how did it turn out?
Thanks again for responding! Happy holidays!
Alexandra

Dec 26, 2008
J

Hey! Thanks for the friend add. I live in NYC, too! I should come by to one of your shows sometime. =]

Jan 22, 2009
Jill

Thanks for the comment on the blog. I've had AU for quite some time now and had to be one of the most disturbing things that has happened to me. Your wig looks great!

Jan 28, 2009
Barbara Bruckenstein

Hi Lee! I have had AU for about 10 years .. I don't wear eyelashes .. I can't seem to master putting them on. I had my eyebrows tatooed years ago. I can't even tell that you are wearing a wig .. you look great. I saw some of your comments about a hair prosthesis not being covered by United Healthcare, I also tried and have United Healthcare also.

Jan 29, 2009
Karina Louise

Love your hair too, the highlights look awesome! Freedom wigs are great, aren't they? :)

Feb 3, 2009
Barbara Bruckenstein

Hi Lee! Sorry for the delay in writing ... my computer is acting up..I was so glad to receive your message. I haven't tried to get reimbursed from United Healthcare for a couple of years now. Thanks for the information. How do you like Vacuum wigs? I order online mostly .. Barb

Feb 3, 2009
Pat

Hi Lee...in my opinion the eyeliner was definately more painful than the eyebrows...still, it's worth it!

Feb 7, 2009
Pat

Hmmm I would say the eyeliner took the most time...but because I had them done straight after having my brows tatooed I had to keep stopping and taking a breather so that slowed things up a bit.

Feb 8, 2009
Brittany

hi Lee!!

thank you for the nice comment!!=]
i'm glad you like my hair.
I just put hair extensions under my wig to make it colorful!!

thanks again!!

Brittany

<3

Feb 9, 2009
Brittany

hi lee!!

At the moment i do not have a vaacum wig.. im think about it now because i don't have a lot hair left.. i was not able to get one before because i had too much hair... peggy was going to make me one but i didn't feel like shaving my head. my current wig is held on by tape. i have a few different color extensions so i alternate extensions every so often. =]

Feb 10, 2009
Brittany

My Peggy Knight wig is 12 inches long....
I just add the extensions to make it longer....

Feb 12, 2009
SportyAusGirl

hi there Lee, hope you dont mind me getting in touch, Rosy mentioned i should ask you some things about wearing wigs - i want to sleep in my for boyfriend purposes.

What are your suggestions?
Thanks,
Nadia xox

Mar 8, 2009
Jude

Thanks for the vacuum wig photos. I am looking into getting one of these and it's helpful to see what they look like.

Mar 9, 2009
lidia

Hi
Thank you so much for the info... The price on the vacuum wig is not bad counting that i spend 1400$ every 18 months on mine. I have to think about it...
Have a good day !!!!!

Mar 10, 2009
Maureen

Hi Lee, Nice to meet you. where on LI do you work? My au started last year in feb 08. and like you I also like to talk about it, but there are some people who can't handle it. poor shallow people lol!What band do you play with. I know a lot of people i n the music world, from my son. He is now attending Eastman school of music.

Mar 11, 2009
Maureen

Hi Lee, That's funny u r in Jericho I am going to take a ride there next week to go to whole foods lol! I live out East near patchogue. Where do u play in your band in Queens or out on the Island? I am now not working but I do Volunteer work at the Patchogue Theater. I go to the gym 5 to 6 days a week. I lost a ton of weight. I have a Friend Carol who live around the block from me who has AU also. I meet her when my son developed it when he was 3. She was my support and rock while i went though it with my son God bless her!!!Hope to hear from u again. have a great day!
Maureen

Mar 12, 2009
Christina Bostwick

hey i was wondering if i could ask you a ?...so here goes and if to personal i understand if you dont respond..i was wondering how you started out...one spot or many and how you knew you had AU as opose to AA. i was alos wondering if you knew if AA could progress to Au ? see i was diagnoised @16 9with one huge spot) i treated it with steroid cream and it went awy in 3 months then i had not spots or hair loss for 10 yrs.. now @ 26 i have another spot although this spot in smaller than the last i find myself devasted with so many ?'s...can this continue to keep happing will this be my last spot or is this just the beginning of the end for my hair? i see that you look so happy in your pics and confident to i hope one day i will be as brave as you are and able to cope with this as well as you are. untill then i guess i will be just searching for answers and stories of others like me. well if you had a min i would luv to hear your story..(if your willing to share)thanks.

Mar 15, 2009
Christina Bostwick

thank you for taking the time to share your story with me. but if i could be nosey one more time i have another ?...you say you had AA 5 time where they pretty close together or spread out of yrs if you dont mind my asking...thanks for your kind words and please know they helped! :) well thanks again for taking the time to respond i hope one day i can accept this as you have learned too.

Mar 15, 2009
Christina Bostwick

thank you for clearing that up for me...som how hearing everyone elses story makes this easier to cope with . knowing people have faced what i have and are doing great now gives me hope. thanks again and i hope you have a wonderful week! :)

Mar 17, 2009
Anna Harmbi

HI LEE.OK IS MANY MANY THINGS THAT SOUD KNOW ABOUT ALOPECIA HAIR WIGS DOCTORS AND MANY DIFFICAT WORDS ABOUT THIS BUT FIST OF ALL MUST BE PAISON AND CALM BECOSE IS A VERY COMLEX THEME. I HAVE ALOPECIA SINCE 3YEARS OLD. IS NOT ONLY A MEDICAL PROBLEM ATHERWISE MADE SOME CURE.EACE DOCTOR SAY DIFFEREND OPINION DIFEREND TREADMEND. THE SAME HAPPEND WITH THE WIGS. EACH SHOP EACH PERSON SAY DIFFEREND IDEA. THE BEST THING FOR YOU I THING IS TO TRY BY YOURSELF. YOU MAKE MANY MISTEK BUT YOU FOUND THE BEST FOR YOU.THE BEST WIG IS THE BEST FOR YOU DEPPEND FOR YOUR HABIT YOUR LIFE. .IF YOU LIKE ASK ME ALL BE CLAD TO HELP YOU. TAKE CARE

Mar 18, 2009
Christina Bostwick

will do thanks a bunch!!!!!!!!!!!!!!!!

Mar 18, 2009
Mary Sarra

Hi Lee, thanks for responding to my post. As far as the BF situation, yes, I would love to hear what you have to say. It is really hard for me even after all these years. I have tried downing a few beers to get the nerve up only to chicken out. You can post to my profile or feel free to email me at msarra0604@comcast.net

Thank you, Mary

Mar 18, 2009
Christie

Hi Lee, I'm so glad that my picture put a smile on your face...my kids have that affect on me also, lol. My girls love wearing my wigs...My oldest thinks she looks like Miley Cyrus (Hannah Montana). She's pretty much taken over that wig...I experimented with Ebay, ha ha ha...never again will I do that - unless I need a good laugh of course.
Have an amazing day!

Mar 25, 2009
Melissa Harris

Where did you get your wig from Lee? It looks great!

May 7, 2009
Jackie

OMG....an AU sister in NY! I wish I could spend the rest of the day obsessing over alopeciaworld, but I'm at work (in Manhattan), so as soon as I get a free minute I will read your bio. Soon, I hope. Thanks for responding to my cry for friendship!!! Lol.

Jackie.

May 20, 2009
Zhong Hongchen

nice to meet you too

May 22, 2009
Jackie

Serious??? Do you really think you are ready to do the skin-thing??? I won't lie, I am VERY nervous!!! I've never taken off this mask in 34 years...You and I will look like a couple of cantaloupes walkin' down the road! Lol (gotta keep a sense of humor)..but, if you're ready then so am I!!! You'll be my inspiration.

May 26, 2009
Kayleigh George

Wow I think i'll have to look into one. Are they expensive???
How are you?

May 28, 2009
Kayleigh George

Hey Im good thankyou. I'll ask her about them. Thankyou

Jun 2, 2009
MiNAH

LETS ALL GO WITHOUT.....JACKIE CAN COME ALONG TOO.
WISH i WAS WITH YOU GUYS TO TAKE THE PLUNGE.
I'd be there to support anyone who is scared..cause I have gone without for an eternity!
Man...it's not to bad..it was worse in the 80s' when you would get ".........."Oh...I'm not going to tell you...cause it ain't the 80's anymore and when you go out now...look directly at the person who is looking at you too...and smile!
Remember...you got to stand strong and tall...gotta be self assured and assertive.
Cannot let them see your fright...oh no!
Believe me..you will feel liberated.....................
You are Beautiful....yes you are!

Jun 26, 2009