Replies to This Discussion

Permalink Reply by Lonnie on April 9, 2009 at 9:37pm

I feel your pain , and anger. My daughter has alopecia , and i cant help but ask myself why?...i dont know much about Alopecia but what i do know is that its so unperdictable...everyone is different. What i know from reading peoples blogs , chatting with other alopecians etc is that you have to work with your self from the inside out. It will take time, many tears , yells, fits of rage but in the end its just hair?...you are not alopecia you are Carol...dont let it define you. i hope i helped somewhat and if you ever need someone to talk to i am here..i wish u nothing but the best ...take care

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Permalink Reply by Rahela on April 10, 2009 at 3:58am

hi dear Carol,
i have alopecia almost whole my life , sometimes i need wig sometimes i don't but i always have one or two patchs on my head ... and i must say it's always hard long time of proces regrowting .. but when i losing my hair it's happend so fast...and that's very distrubing i always ask myself .. would this hair come again on my head ... but darling don't be desparate u are pretty anyway with or without hair ....and u know what im shure that u have great personality and that people around u don't see only bold person ..and be consciously that u are not ONLY bold girls;)
have good luck darling;) i wish u luck*

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Permalink Reply by Stars-r-Aligned on January 12, 2017 at 3:45pm

Right! She is not her alopecia..plus you can wear awesome scarfs :) if I lose my hair...that's what I'm doing, I'm gonna scarf it up lol . Plus , i always thought, if I lose my hair..at least I won't have to buy any more shampoos, worrying about being too hot bc your hair is all around you, no more worrying about having to do it. And the biggest plus is, all that money can go to other things...I'm an artist so I can buy art books with the hair(shampoo,ect) money... There's always bright sides...but I understand your pain, but u can make it..its all about mindset...plus at least you can still do your nails and wear eye shadow and stuff.

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Permalink Reply by Xeljanzmiracle on January 13, 2017 at 6:36am

Many of us have experienced complete regrowth on Xeljanz. Check out Alopecia Destroyed My Life's discussion about Xeljanz. It's the most productive and popular discussion on this forum.

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Permalink Reply by Moisuc Alexandru on April 10, 2009 at 7:02am

I had alopecia totalis when i was 16.Ihad total regrowth for about 2 months and then it all fell out.I am now 23 and i have alopecia universalis

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Permalink Reply by Sheila Anderson on April 10, 2009 at 10:15am

Carol,

Thanks for sharing your story. I have been wearing wigs and hairpieces for most of my life. It first started with thin hair in high school then later I lost the hair on the crown (top of my head) so I look like bozo the clown - short, nappy hair on the sides and in the back but nothing on top. When I went to the dermatologist she diagnosed me with degenerative follicular syndrome. She gave me a solution similar to rogaine but nothing grew back. I have a low self-esteem because of my hair. Sometimes I don't want to be around other people and feel depressed about it. But this new organization - Alopecia World - is really helping me a lot. I think the bald women look lovely. I am planning to shave the rest of my head soon and go bald. I know there will be critics but I feel empowered by knowing I am not alone. I'm just waiting for the weather to warm up so I can shed these wigs. And I'm not saying I won't wear them again, but sometimes we need a change. Plus I always felt I was being deceitful by receiving compliments about my hair when I knew all along it was not my hair but a wig. Hang in there, you are not alone.

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Permalink Reply by Rose Marie' on April 10, 2009 at 3:37pm

Hi

I'm so sorry this is all seeming so very overwhelming at the moment. You have a right to feel all the feelings you are feeling, but keep in mind this will get better. You will find your way through this and you will live your life again how you want to.

I think most people here have been where you are at the moment and understand.

Keep looking for alternatives that will make you feel like you again (whether that be no headcovering or some sort of hairpiece) what ever it is keep looking for it until you feel like you again.

I so hope you start to feel a little better soon.

Rosy

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Permalink Reply by Paula on April 10, 2009 at 6:28pm

Carol, I know exactly how you feel. I think everyone goes through this. The unpredictability of this disease is probably the hardest thing - will it get worse, better, grow, stay, or fall out again?? I'm going on 3 months of this BS and I am tired of it as well. Tired of wearing hats, too! But you know what, I am better this week than I was last week, and last week I was better than I was a month ago, etc. You are grieving the loss of your hair and it's completely normal to feel the way you are feeling. Hang in there. It will get better in time.

I think it will take several months for the fine hair to return to normal coverage. My doctor said I should expect to wear a wig (hat, etc) for a year. I'm hoping it will be less than that.

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Permalink Reply by Lizzie on April 10, 2009 at 6:59pm

I really relate to your problem. I have Alopecia areata, but it is getting progressively worse and all the patches are joining up, I can't hide it anymore.

Just hang in there. It is tough and can be depressing, but your right, it is just hair.

I like to think, having alopecia is making me a stronger person, because I can do this, body image is pretty much everything to women, and I can over come that, and so can you!

I've never had a total re-growth of hair, but thats not to say it can't happen.

Be strong. x

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Permalink Reply by Stars-r-Aligned on January 12, 2017 at 3:53pm

You're right, you can do this girlie :)

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Permalink Reply by Carol Yuen on April 10, 2009 at 9:43pm

Thanks everyone for your replies and support words....I love this site, I can complain and complain all I want and everyone listens to me. I love you all, you guys seem like close friends to me. I actually haven't meet alopecian in real life, but is great to know that I am not the only one, and I can get support from each one of you. I believe having alopecia is like having terminal illness, but sometimes I think is worst. Ya, stupid eh? I feel like we have to adjust this every single day, and having "normal" people not understand us is very diffcult part of this condition. I am sick of taking billions of pictures with my camera everyday to see if there are regrowth, changing my camera to macro function so I can see if there are baby hair growing. I am so exhasted from couting my eyelashes everyday and see if I am losing more and more. Sometimes, when I am day dreaming I will think, if I can move to an island or a place where it is all alopecian that will be great. I guess I am just being stupid thinking about stupid things. I really miss the feeling of running my fingers through my hair. I am sooooooooooo young, I am scared of my future, scared of the things I will face later on in life. I am so scared to have my boyfriend see me with bald, I am scared he will leave and I will be alone for the rest of my life. anyways, thanks for listening everyone. I hope alopecia can be curable or at least treatable with minimal side effects later, so we can all have our hair back. xoxoxoxoxox--- CAROL~

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Permalink Reply by Jennifer Krahn on April 11, 2009 at 10:30am

Hi Carol,
I'm just starting on this journey as well (since Feb) I've had all your same feelings that you just expressed...just ask my husband. He's expecting me to lose all my hair...and he doesn't care! He loves me and is just soooo happy that it is not anything worse. I've done the 'this is what I'll look like" with my buffs and bandanas at home, and he thinks it's fine and I still look great to him. I'm learning that our emotions project the absolute worse scenarios to the point where we begin to believe them. It's just not true. I look at your picture and you are beautiful. Your boyfriend will love you for who you are, not just your hair. Imagine if your relationship was strictly based on hair and appearance...pretty shallow. I'm guessing yours is far deeper than that, so don't worry. If it comes to it, is a hairpiece that much more different than wearing makeup? I don't know, I'm starting to look at it this way. I'm with you though with the tough days, the pinning of hair, the hats, the scarves...it bites...but I trust that it will get better. Hang in there. Try to reinforce yourself with positive thoughts, at some point they will overtake the fears.

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