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Mandy

43, Female

Fort Wayne, IN

United States

Profile Information:

Relationship Status:: Single
About Me:: My story in a nutshell...
I found my very first spot on April 28th, 2008. It was in the center of my head on top about the size of a quarter. I didn't think much of it...just thought I must have pulled it out somehow or something. A couple days later I woke up to see another spot about the same size a little to the side of my head. I kinda freaked out but pushed it aside pretending to myself like nothing was wrong. Then at work my friend came to talk to me...I was sitting and she was standing over me so she could see 2 more big spots in back that I couldn't really see myself before. So yeah...I had 4 spots in a week...the 2 in back were very large (check my photos - they are dated). So I went to the doctor that week on May 2nd. He diagnosed it right away as alopecia areata. I was terrified to be honest. I had never heard of AA. He did the first treatment of injections that day for treatment. I was so in shock that I didn't really know what was going on. I was very upset for the first couple days. I LOVED my hair. I was always blessed with some pretty kick butt hair. LOL. But anyway, I found this website right away after diagnosis. The first thing I did when I got home from the doctor was jump on the internet and research, research, research. Found this website in the process and I read every single blog post and every single forum discussion and response since its inception. I got more knowledge from this site than anywhere else. It's always better getting the facts from people that have actually gone through it, I think. After seeing all these brave women on this site as well as getting a phone call from my boss who basically said "get over it and move on with your life" I snapped out of it. I realized...I can either feel sorry for myself and be sad about what I've lost or I can accept the disease, move on, and be happy with what I HAVE. And I've honestly been fine ever since. It's ALL about attitude and acceptance. Your attitude affects the way your life will be. You can be perfectly happy with AA if you want to be. It's up to you! :o) This is mainly why I decided against the injections...they didn't work for me for one thing, but I also didn't see the point in it for so many reasons...I'm fine with letting what's going to happen just happen.

Overall, I have learned that treatments don't work for me, and honestly, even if they did, I wouldn't do them. It only adds stress to your life thinking of yourself as broken and needing to be fixed. Think of all the money and time you will spend trying to fight the hairloss...wouldn't you rather be living life? I love helping people and am more than willing to help in any way I can if you need a friend, some support, or want to talk about wigs and how to make pretty bandanas and scarves. But honestly, if you're looking for advice on treatment, you won't get that from me. :) I will only try to help you love yourself for who you are and move on.

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I started a Chicago group as well as a Fort Wayne, Indiana group (I'm from Chicago, moving to Ft Wayne for school so I'll be there a while). If you're from either area, please join the group so we can start planning some get togethers! :o)
Do you have alopecia?: Alopecia areata
Are you age 18 or older?: Yes - I am 18 or older

Comment Wall:

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Jennifer

I know that feeling. It might just be easier to shave it? I don't know, sometimes I just want too!

May 29, 2008
Becky.

lol well i am! i just love it. its just that, i still always feel alone, no one in my school has alopacia. and do u wear a wig?

May 29, 2008
Becky.

uhm i live in Evergreen park. that is a small town in Illinois.

May 29, 2008
Becky.

def. i would love the information. honestly, do you think by looking at my pictures...do you think i have too much hair on my wig? im so anal about this..because im having a 6th grade dinner and i want to look all cute and pretty and i just want to be very happy that day..and i dont want ppl thinking omg becky why do you have so much hair all of a sudden?

May 29, 2008
Becky.

aww (: your really nice and im so glad we met!
its gotten really bad this year and idk why.
i went to this one doctor, and she told me these things.
maybe they can help you.

all dairy products are bad such as
-milk
-cheese
all of that stuff.
drinking pop and juice is very bad,too much glucose.
being out in the sun is very good for your head.
penuts,fruits,veges,are all good for you.

(all of this revolves around the inflamation inside your body.)

also, all red meats are bad for you also.

May 29, 2008
Jennifer

me too!!!

May 29, 2008
Liesl

Hi mandy! Lovely to meet you! Hope you're ok. Your patches are exactly how mine started out. Twins? haha. Yeah difficult i know. People are worse. The amazing thing about it though is how incredibly strong you become....with regards to everything. I used to be very shy and reserved, now I can be quite funny sometimes and have really come out of my shell. My attitude is....lets go with the flow and i feel sorry for people who judge. If you ever want to chat about anything, just type away! xx

May 29, 2008
Jenn

Thanks for taking the time to introduce yourself to me. From my experience, the diagnosis was the most difficult part. I don't know how to explain this, but whenever I have started regrowth I have been frustrated with this strange response we have to our immune systems. I also found that baldness was much easier to handle than patchy spots. I decided I am pretty bald. I am lighter, happier and feel great about myself when I don't have hair (I do wear scarves and wigs in public-I first thought I would never go without a wig, but found I prefer scarves). I am sure too that having seen my little brother cycle through this from 5th grade to now (he graduates from high school tomorrow) has added to the ability I have to deal with this as an adult. Getting ready in the morning is a cinch when you don't have to worry about hair.

May 29, 2008
Danna

Mandy, love the music girl. I am not so sure you could whip my butt in video games. Most of my adult life I have been playing RPG. Well, I am not too much into the gaming right now only cuz I am in school and working full time. Tell me more about your friend's CD. I like different types of music to dance to. Noted simple and clean from Kingdom Hearts. I am a Final Fantasy nerd.

May 30, 2008
Katiebug

Hey! I just wrote you a really long message, but something messed up and now I have to rewrite it! I just wanted to say thanks for writing me! And I know that feeling that you are talking about, whenever I get scared about my hair I get this panicked feeling in my gut! I hate it, I just try to do some deep breathing to help myself stay calm! Well, I'm glad to hear that your treatments are starting to work a little, I know I hate getting those shots! But it does help you to feel a little better when you do something proactive about this situation. Because atleast then you know you tried, even if it doesn't work. Well, I hope to hear from you again soon! Message me about anything anytime!

May 31, 2008
Jennifer

aaaaahhhh! You are so sweet! You said exactly wanted I wanted to hear! Thank You!!!! I'm glad I found this site to meet people like you!!! :)

May 31, 2008
Tina

oh good! =) Let me know how it goes, and like I said...I'm here if you have any other questions.

May 31, 2008
Jodi Wertz

Hi Mandy! I was just trying to send you a post and something happened. Don't know if it went through. So.......here I go again. Thanks for the post. I should have posted my daughter's name. Her name is Sarah Beth and that is her picture in my profile. She already had a 3" AA spot at the back of her head in that picture, but nothing else. Now she has lost 50% of her scalp hair and all of her body hair, except for eyebrows and eyelashes. I have been showing her pictures of other people with AA, so that she knows she's not alone. I will show her your pics tomorrow. You are a BEAUTIFUL girl!! That will not change whether you have hair or not. God allowed this for a reason in both of your lives. I know that He'll use it for His glory. You will be in our prayers. I'll keep up with your progress and let you know how Sarah Beth does. Have a blessed week!!

May 31, 2008
Roger

Hi.

How are you my Hikaru friend? =)

Roger.

Jun 1, 2008
François

Hi Mandy !
All i can say is try to stay positive about it...I know it's hard, i've been dealing with AA for five years now and it is a dealy combat some day you will win some others...Well it might be harder but look forward and think of all the people that are like you...5 millions American, that's a lot of hair...i mean people !
Keep your head up !
François

Jun 1, 2008
Roger

Hi.

Im doing fine. Yes, in 17 days im going =) Pretty exciting. Hope to meet some new alopecian friends there =)

Jun 1, 2008
Khadijah Wright

Are you going to the conference?

Jun 1, 2008
Liesl

I have a bit of hair at the moment, but i'm getting a suction wig made. Tried to grow it back several times, but fell out again and again. I haven't had a full head of hair for 3 years. It started like yours and took about 4 months for it all to go, i think, if i remember. I had strands left so i just shaved it. I did a brittany spears. Took it off in rage hahah...not quite as raged as brit though and i started the trend, brit copied lol. Oh and just remember, great men don't care if you are worried because i was.

Jun 1, 2008
Liesl

Yeah i know what you mean. My boyfriend has turned into a neat little hairdresser. He would cover the patches in different styles but yeah once it gets to the stage when you can't do anything more you're just over sticking 1 million clips in it, it's just time for it to go. I suggest suction based wigs if you were after a wig. I swear by them. You can stand in a storm and it wont come off. They look so real and they even fool professional hairdressers. I've had some hard times with other basic wigs and women can be really nasty.

Jun 1, 2008
T

Hi sweet pea...I see you are new to the world of super duper ole' Alopecia. Not to make light of your situation at all....I know it's got to be very difficult to come into this disorder as an older woman. I went through being bald as a child...delt with mean mean kids because, well, kids usually can be very cruel to what they find different and out of the ordinary.
It's hard for me to give advice or comfort to someone who is brand new to this whole thing. But, if you ever want a stranger with some kind of common ground to try and pick you up...I'm more than willing :)
Ya know, aside of Alopecia...I delt with a lot of BS during my childhood...and I grew up strong and I gre up quick.....and while it takes so much to get me going! NO ONE that disrespects me these days....walks away standing straight and proud *lol* I got a damn big mouth...and while I can't be around to save the world...I hope I can only build confidence in anyone who needs a boost!
Love,
Taylor

Jun 1, 2008
Erica

Hiya Mandy,
Alopecia Areata is such a funny thing. I saw your pictures and thought about how you're going through the reverse of what I am just now. I now can't put my hair up because all my bald areas are underneath my top level of hair whereas you can't do anything but put your hair up! It's like you're my hair opposite.
I'm 26 too (well nearly 27) and although I've had AA for about ten years now it's only recently become something I've had to properly deal with. It is hard sometimes but you seem to be coping really well with it all, even if your derm report was hard to hear. I was at the derms about a week ago and he was just like " you being so young isn't a good sign. But all other signs good!!!"

Have you looked into getting any wigs or toppers? I've recently started wearing wigs (about 3 weeks now) and am beginning to get used to it. It is taking a while but it's nice to be able to go to work and not wonder if you're 'exposing' yourself. And it takes way less time to get your hair ready in the morning: it's practically a case of sticking it on and going. It's a relief not to worry about where to make your part that day or I guess in your case, how to put your hair up!

Btw, I love my little white fuzz too :-)

Jun 2, 2008
Maggie McCubbin

Hi, Mandy...Thanks for adding me as your friend. I'm not new to alopecia, but it doesn't make accepting it any easier. I have found that the injections are the only way for me. Right now, I go to the derm every 2 months. Same as you, I can wear my hair up. My whole left side and top of my head was bald. I can cover it pretty well. After several treatments I do have growth that is more than the fuzzy white hairs. Now I'm considering clip in hair extensions. What would it feel like to wear my hair down, I just don't know. I don't know if my son would know how to react to mom with hair. (I've worn my hair back for almost 2 1/2 years.) I hope to get some advice on how to cover up until it grows back to all the same length.

Hang in there!

Jun 2, 2008
Samantha

Hey Mandy,
Have you actually gone to look at wigs yet? Can you still pull your hair up and hide it? My scalp actually burned yesterday from being outside for a short while and I don't have any "visible" patches yet. My hair is just getting so thin and my part is getting thick and it's like my entire hairline around my whole head has receeded. Do you know of any places in our area that are good for wigs? (I'm in Chicago but my family is the western burbs)

Jun 2, 2008
Liesl

Suction wigs.... www.freedomwigs.com That's the aussie website but i'm sure they would have reps in the states. You look some much younger than you are. hehe you only about 18. Pretty photos.

Jun 2, 2008
Jennifer

Hey, how are things going? Have you seen sexin the city yet!? Best movie of the year!

Jun 5, 2008
carly

hi- how are you- Im excicted cuz there are only 4 days of school left- YAY!

Jun 5, 2008
carly

lol- im just so glad schools out!- but today it rain forever and i had to walk outside to wait for the bus and it was really wet- and tomorrow we have a water fight on the bus for then end of the year so im wearing a hoodie so my wig doesnt get wet- so it should be fun- how are you?

Jun 5, 2008
Jennifer

Oh ya, you definetly have to see the shows first! You will love it, the last episode I cried! lol!!!

Jun 6, 2008
Jennifer

$6,000.00!!!!!!!!!!!!!!!!!! wtf!!!! Are you serious!?

Jun 6, 2008
Drew

hey, I haven't really been home much because I've been at my cottage on the river enjoying the weather and then thursday was my 21st birthday so that was fun. Everythings been good, busy though. I think my summers are more busy then the rest of the year. Hows everything going with you?

Jun 7, 2008
Carmella

I'm glad you were able to come to a decision and I LOVE your new background btw. Hope you're well too, I'm good - just BUSY as all heck.
XOXO
CAR

Jun 7, 2008
Drew

Thanks for the birthday wishes, yes I partied hard... I think, I don't remember half the night =P... And yeah i'll get some pics up soon of the smooth me... Hope things are going good with you

Jun 9, 2008
Liesl

Hiiii Mandy! So sorry it's taken me so long to reply. We had a long weekend in Aus for Queen's Birthday so had monday off work too. I went away down the coast for a couple of nights (which was so lovely) and only managed to log into alopecia world a couple times for about 10 seconds before i was forced off the internet by my friends and had beer shoved down my throat. lol. How are you? To get back to your question, no the suction wigs are not hot. You dont even feel like your wearing one. It's really light on. Did I give you the website? I can't remember, here it is again. www.freedomwigs.com That's the main site and then just click a link to the USA site applicable. I thought for ages about it before i finally agreed. It took me a while to get used to the whole idea but they are really cool.

Jun 9, 2008
Jennifer

thanks for the comment. They are funny little buggers oh well hopefuly they will stay gone for a year so i can go get my tattoos.

Jun 9, 2008
Becky.

i've been goon, hbuu?
summer is here!!!
i'll be out hanging with the friends.
whenever i get a chance i go on..

i hope we chat soon.!

Jun 11, 2008
Billie

Hiya! Just wanted to say hello and wish you a good weekend.

Jun 13, 2008
Drew

Hey thanks for the comments on the shaved head. How are things going with you?

Jun 16, 2008
Drew

I'm pretty good too. Finally got a day off after a long weekend of work so I'm being as lazy as I can today. But I need the money and enjoy where I (work for the most part). Hope you have a good week

Jun 16, 2008
Katie Sizemore

I check in every so often to see how you're doing. You don't talk about everything as much on myspace so this is my way of seeing how you are!!

Jun 17, 2008
Roger

Hi.

Is mama or papa swedish?

Roger.

Jun 17, 2008
Roger

Nice.

Do you know where in Sweden?

Jun 17, 2008
claire

you a beautiful looking girl stay strong, and thanks for the comments............

Jun 19, 2008
Tony

Hi Mandy, very glad to hear you are feeling better. Thanks for sharing your blog...many times there are others, like me, who are feeling the same way but are afraid to say it. It really helps to know that we are not alone.

Jun 19, 2008
Mary Sarra

Mandy, my name is Mary and I live in Kokomo, IN. I was diagnosed with AA about 12 years ago and still have issues. Have yet to come to grips with it. Went thru the steroid injections too. Had some growth, but for each patch that grew back I lost hair elsewhere. I still ask why me. I can't even bring myself to talk to my boyfriend about it. Hard to tell someone something like that when he calls me beautiful and sexy all the time. Was told he knows, but not too sure about that. Anyway, I where a vacuum piece and I do love it. I noticed you live in Woodbridge, IL. Don't know where that is but the consultant I went thru for New Freedom Wigs in New Zealand lives just outside of chicago it that is an option for you. Her email address is: newlifehair@aol.com. She does fittings in her home. She is a wonderful person. Her name is Karen Peterik. They are quite pricy, but well worth it to me. I suppose I would be considered "poor", but would not have a day go by that I wouldn't do what was necessary to purchase one of these. I am trying to save to get another one someday. Anyway, sorry I rambled, but suppose I needed to vent as well. Regardless good luck with whatever you do. Best wishes, Mary

Jun 19, 2008
Carmella

I like the new pics!
XOXO
CAR
P.S. Hope you're having a fabulous weekend.

Jun 20, 2008
sgomez

Hey girl! I just saw your new pictures, and your new hair looks great!! I also saw on your other pics just how far your AA has progressed since the last pics you posted on a past blog. So how are you doing? If you ever need anyone to talk to, I'm here for you. I love how you always seem so positive, but I also know how AA can make us feel so helpless and out of control at times. You're a sweetie :-) Hugs, Sarah

Jun 21, 2008
Dotty

Hi Mandy,
First of all....I love the new wig. It's fabulous!! BTW, your hairloss looks exactly like mine. My hair was really long and I still had a lot left when I decided to shave it off. I couldn't bear the fallout anymore and I had lost most of my hair on the top. But, that's me, and that was 7 years ago. I have gotten a few sparce hairs in the summertime but no other growth.
Next, I am just now getting back to the wonderful messages of thoughts and prayers for my daughter, Kristin. I had the best sleep in 10 days last night because she is home from the hospital. Thank you for thinking of us and your prayers were heard loud and clear. Hope you are doing better today. If you ever need to talk, my email is hottie_dotty@hotmail.com. I'm on MSN messenger too.
Love and Hugs,
Dotty

Jun 21, 2008
Supermom

Hi mandy,
I was just reading a bit about you and looks like we got AA about the same time. Mine is the opposite, I can wear my hair down and no one can see cuz most of it is up the back of my head and sides. But now I have bald spots starting on the crown of my head and big red spots on the scalp so I guess thats next to go. Sometimes I am very accepting of it but other days not so much.
Good for you to have it done with... where'd you get your wig?

Jun 23, 2008
Billie

Hi Mandy!!! Girl you look great! I would 've just thought you had yourself a new do today! As long as you shine!!!

Jun 23, 2008
Supermom

Thanks for your comments. You look great and you are inspiring!

Jun 24, 2008