0

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.

----------------------------------------------------------

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:

Load Previous Comments

Katie Sizemore

I am on this now. I want to be armed with information so that you don't have to go through it alone...I love you. No matter what happens with your hair you'll always be my beautiful, favorite cousin!

May 16, 2008
Jennifer

wow! It so is wierd to see how AA is different on everybody. Just all of a sudden, you just got it?!!!

May 16, 2008
Katie Sizemore

I just want to help and being so far away it is hard. If you need anything you better call me...I keep reading about this disease and it seems like it affects everyone so differently. I guess we'll just see where it goes...I'm here!

May 16, 2008
Katie Sizemore

I started reading some of it. The injections sound awful!

May 16, 2008
Tony

Thanks for the warm welcome!

May 16, 2008
Donna Evans

Hmmm, I don't know if I can pray for all of your hair to fall out. I'll ask God to make the trasition easy on you though. I have a tat. too. I'll take a picture and post it on my page some time. I'll copy you! You sound like a super person. Keep in touch.

May 16, 2008
Karen Delaney

Hi Mandy, thank you for the welcome...Karen

May 16, 2008
Kristen

Hi Mandy - thanks so much for sharing your story with us. I'm sending all sorts of good energy your way for your transitions. There are so many supportive, wonderful people on here to help ease you into it. Please feel free to message me if you ever want to chat. My alopecia showed up 15 years ago when I was 12 and I've run the gamut in emotions. :-)

May 16, 2008
Saphy

Hi Mandy.
I see you are a gamer too. What do you play? I've been playing WoW since release and just recently started and quit playing FFXI (again.. hehe). What about you?

May 16, 2008
Jennifer

That is so crazy! I would freak out, I kind of do anyways whenI still get new spots. I'm always like "what the Hell! " Do you ever wonder where the freaking hair goes? I never find a huge bundle of hair anywhere, It's just gone! I always have a lot in my brush, or in the shower, but not enough for a huge bald spot! Delete Comment

May 16, 2008
Tina

Hi Mandy! Yeah, Gary's right, you really do have a great attitude about this. My first experience was horrible..and it still is kind of hard for me to deal with. I was also diagnosed in May, of last year though. I wish I had discovered alopecia world then! Continue to keep your head up and just know that you may have your ups and downs, but a place like this is so wonderful to go to. I'm sure you're going to experience a lot in these next few months, so if you need someone to talk to, I am here. =)

May 17, 2008
Carol

Hi Mandy

Thank you for your kind comment. I just wanted to help people learn about alopecia and live normal happy lives. I'm so excited about our first meeting on Tuesday, I have a much larger turnout than I expected. It's a wonderful feeling to think your helping so many people. Anyone could do it though, even you! Keep smiling!

May 18, 2008
Kira

Thanks

May 19, 2008
Courtney

Hey Mandy!! Thanks for the blog comment. It was just bugging me so bad last night. I have the same veiws as you on a few things too. I totally agree about how maybe god chose us because we're strong and maybe someone else couldn't of handled it. And also about what you said about how the guy wasn't probably a good guy anyways if he's treating me like that. I think what bugs me the most is that they don't even have the guts to maybe ask me what it is and just understand that it doesn't affect my personality or anything other than my bald little head. lol

ANYWAYS!!! How's you're day going? haha

xox

May 19, 2008
Courtney

haha that's good!! =P

May 19, 2008
Courtney

yeah it grew back but it's fallen out again. I found out Boxing day 2007 that I had a few bald spots. It's taking so much longer than last time to grow back in... It's starting to grow back again, but more just in patches of my natural colour, and the rest is white hair or smoothe!

May 19, 2008
Courtney

Man, that's my life!!! haha, well not quite... I work a lot too, but when I'm bored I definately whip it out!!! You play?! It's great!!!

May 19, 2008
Stephanie

Hi Mandy, thanks for the add. Looking forward to getting to know you a bit more. I enjoyed your Ode to Little White Fuzz -- maybe there is a burgeoning poet in you that only Alopecia can bring out. Enjoy your day!

May 19, 2008
Courtney

Oh it's a BLAST!!!! I'm best at the drums, but the singing is the most fun!!!!!
Have you at least tried it out =P Ya gotta!!!!!!!

May 20, 2008
Carmella

Welcome Mandy. Thanks for the add.
Kiss Kiss
CAR

May 20, 2008
Melissa

Hey! It's my MySpace friend! Haha!

May 20, 2008
Carmella

Oh yeah and thanks for the well wishes with school!!!

May 20, 2008
Herne Steelegrave

Dear Mandy...

I received your email regarding the steroid injections. My loving wife Willow went down that painful road early on her journey with alopecia and it was not a good journey. I forwarded your query to her since she has more knowlege than I on this. I feel she shall be in touch on the morrow in regards to this and I am hoping that shee too will make a space here for herself as well...

Love and Laughter,

Herne

May 21, 2008
3mee

Thanks for your comment Mandy. I read your story and really love it when you say that we are the chosen ones cause we're strong. I've written that phrase on a piece of paper and hang it in my room. It really helps! Thanks for you brilliant quote

May 21, 2008
Tony

AA is a funny thing. The hair falls out, the hair might grow back, then it might fall out again. OK, so it seems to fall out over night but takes forever to grow back.

May 21, 2008
Roger

I see that you like Hikaru! I have been to Japan 2 times =)

May 21, 2008
Roger

Funny! Video game nerd LOL! You are funny!

Is Woodridge close to Chicago?

May 21, 2008
Roger

Nice. My neighbor is from Chicago!

May 21, 2008
Gina

Thanx Mandy...It kinda does feel good....thanx also for accepting me...as a friend....I will post some pics later today...G.

May 22, 2008
Mom

Mandy, Well Just so you know, your pics were helpful to my daughter, last night she was feeling a bit down, nervous about a school trip and we talked about Alpecia World. It really helps her to SEE others like her and we talked about how you in particular are brave and open about AA. It really is helpful for her to her.
Thanks, Amy

May 22, 2008
Zoe Dusting

Hey mandi!
You have loads of hair stil!! Don't get too obsessed with counting and checking out your spots every day. I know its hard not to becuase you it's impossible to ignore it, but make sure to pay attention and focus on the positive things in your life too. Sometimes i think that the more i focussed and worried about my alopecia, the worse it became. I've decided to continue the shots too and i think that i will keep on doing them until the dermatologist tells me to stop them. We kind of have opposite spots; i can't wear my hair in a pony tail, but i can wear it down. You're really brave! I've never shaved my head before. I have a hairpiece that clips into my exisiting hair and makes it look really full on the top of my head (it's not a wig though) I also own about a gazillion hats. They're so easy. I'm glad there are so many options. Well i'll talk to you soon ya big baboon! Hope the shots go okay which i know they will.
looove zoe

May 22, 2008
Gina

michigan....and you?

May 22, 2008
LeslieAnn Butler

HI Mandy,
Welcome to the AA club! I have universalis. I am thinking you might want to read my new book, "If Your Hair Falls Out, Keep Dancing!" It's a great read, and you can find out more about it by going to my page, and you can order it at www.leslieannbutler.npauthors.com. Let me know what you think!
LeslieAnn

May 23, 2008
sgomez

Hi Many,
Thanks for the friend request! So how are you feeling right now about having AA? I know that we all go through different stages of grief over losing our hair. It's tough, I know. So just let yourself feel your emotions. Don't supress and try to live in denial, and also try not to obsess over it. It seems like you're doing a good job of it so far. Take care :) Sarah

May 23, 2008
Drew

Hey, howd the doctors go today (right? haha) and how is everything else going?

May 23, 2008
Gabrielle

Thanks:)
how are you doing?

May 24, 2008
Zoey

Well, my dent is pretty huge. Its about 3 inch circle. Its towards the back of the top of my head.
I don't want to scare you, because they say everyone is different.
If its working for you.. Please dont stop.. Just think hair will cover the dents :)

May 24, 2008
Gabrielle

oh im sorry to hear that!
i was so ready to try those injection treatments but then my doctor told me they are not 100% and they have alot of side effects and are VERY painful!
but my hair did start growing back naturally:) which is an amazing feeling.
but I am SO scared it's going to fall out again! Like 1 year ago I had some re growth and it fell out which was just horrible...so I'm really nervous about it but I guess I should just celebrate what i have right now right :D
you have alopecia areata is that right?

May 24, 2008
Zoey

Yea.. in December I had a weird size of a golf ball thing growing out of the side of my head.. One day I was massaging my head and felt weird lump.. Well... I thought the worst.. Cause I always freak out.. Turns out its only a small sist that does not need to be removed....
But, if you can imagine. I have a huge indent in the back top of my head. now off to the side I have a golf ball size round thing sticking out of my head!! lol
You gotta just laugh about it.. I look like a mess... lol

May 24, 2008
Gabrielle

yeah...counting will just get you down even more:(
it spreads so fast too!
like i had all of my hair one month and the next 2 weeks I was pretty bald:(
it was so hard but its been 3 years now so i'm pretty used to it....so are your spots getting alot bigger then they were before?

May 24, 2008
Zoey

Yes.... Well thank you sweetie....

Everything is going to be okay with you.. Ans this wonderful website is so helpful! I wish I had it ten years ago...

May 25, 2008
Saphy

Hi Mandy! Thanks for the add. :-)

May 25, 2008
sgomez

It's so great to hear that you will accept whatever happens to your hair. You will still be you. You will do just fine no matter what the outcome, I'm sure! I'll be thinking of you. Take care, cool lady. Sarah

May 26, 2008
Carmella

Hope you enjoyed the bath!
Kiss Kiss
CAR

May 28, 2008
Lise Marie Bordeleau

ty Mandy..... that very nice of you to say... take care....Lise

May 28, 2008
Lise Marie Bordeleau

wow.... i thaught i was looking at my head....we do look a like ....lol....i had long hair too... it to hide the spots.....and you know what for 2 years i did not have spots.... i was so happy and i cut my hair real short.... and now i shave....and had my nose pierce...lol...now thinking of getting tattoo on head....take care again you are not alone.... you are beautiful....Lise

May 28, 2008
Kristen Ridenhour

thanks for the add! you seem like a very strong person. it's good that your friends are supportive, it makes all the difference in the world. hang in there, you are beautiful!

May 28, 2008
Kristen Ridenhour

trust me, it takes time to come to terms with alopecia. i'm sorry that you're stuck in the patches phase. lucky for me, all of mine fell out at once (within about 3 weeks). it's ok to have breakdowns every once in a while. i know i still do. if you ever need anything, i'm here.

May 28, 2008
Becky.

woah lol we have the same song!
well yeahh. im becky..yeahh well i thought i was the only one in this world with alopacia until i went on here..now i feel a little bit comfortable with myself knowing that ppl having the same thing as me (:

May 28, 2008
Jennifer

Hi Mandy, how are things going? I see you got new spots. I'm sorry. Even with my new extensions, the new one that I have on the top of my head still can show. So its either the bald spot or the extension showing, unless I just play with my hair the whole time? I haven't figured out which one is better to show?

May 29, 2008