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Discussion in 'Newly Diagnosed Alopecians' started by BunBun89, May 7, 2011.

  1. BunBun89

    BunBun89 Guest

    Hi. I was diagnosed with Alopecia Areata right after Christmas. What a pleasant gift from Santa and what a happy new year, if you allow me to be sarcastic and angry about that.

    It has now gone 5 months. I have gone through phases of anger. Depression. Locking myself in. Panic. Acceptance. Fear. telling people and hiding it from people.

    I am a single young mother. 21 years of age. My son is 3 this summer. He is my greatest support. He points at the largest of the spots and says "Mommy, owie owie" and hugs me.

    I dread the summer. Bathing. Without any head-ornament. I got several spots. cant put my hair in a ponytail since its at the hairline in my forehead, also sides and back of my head. Hats and scarfs are mostly used. It gets warm but that is better than the comments I get every day if I don't wear anything. Still trying to find out if I want to shave the last bits off, since I gotta wait until it grows to the similar length of what I have left anyway. or try to live with what I have in case it stops tomorrow.

    I have, what the doctor calls it, an aggressive form of Alopecia areata. Since it is all over my body yet in spots. He says that since the first and largest spot has stopped at 1 cm long strings of new hair, for 5 months: I am probably not going to get my hair back. That hurts. A lot.

    So I don't seek any Oww, poor you. I just seek to know:
    What goes on in you guys' hearts?
    Do you have the same lump in your throat of tears fighting to hold it in? as i do...?
    Do you cry when you pick up the hair in the shower and stare at the size of that huge ball of hair?
    Is anyone here single, like me, and fear as I do how dating is going to happen?

    I just want to know if I am alone with those feelings. or if there are others like me... :sad:
     
  2. Bun Bun --

    you are not alone!! I'm sorry I can't speak to your particular experience - I don't have Alopecia Areata, but many women on these boards do and they are living full lives and have found ways to manage with what is admittedly a DEVASTATING experience for a woman to go through. Give yourself time to grieve your hair, be angry, etc but don't let it consume your life -- we all struggle with this and it's easier said than done but you're still you and the right person will appreciate you for that, not your hair.

    Hang in there - I'm sure some of the other girls with Alopecia Areata will get back to you and put your mind further at ease.
    :grouphug:
     
  3. haygirl326

    haygirl326 Guest

    I have been going thru Alopecia Areata for 3 years.....falling out, growing back, falling out , growing back. :(
    This past year I lost 90% of my hair. I have cried alot.... but I am at the acceptance stage now. I bought a great topper....I may end up going for a wig. Right now I have about 1/2" of regrowth everywhere....but I know not to get excited because ifthings keep going the way they HAVE, this will all fall out again too :(
    You have to stay focused on whats positive in your life and honestly I think the best way to deal with this is: expect and prepare for the worst, and be pleasantly surprised if it goes away.....
    The GREAT thing with Alopecia Areata from what I have read is you always have the chance of going into full remission.
    I had a very minor bout in my teens ( small little dime sized spots at the back of my head) and then all was fine until I hit 38.
    So I feel really optimistic that I may go into remission again.
    I hope this helps and I am sending you a big <HUG> In know how tough it is...... Tracy
     
  4. Sassy

    Sassy Established Member

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    Bun Bun,
    I'm so sorry you have to go through this hair loss business. It sure can be mind consuming. It seems that it does not discriminate against age/gender/ethnicity etc...Fortunaltly for us, there are lots of studies being done on why more and more folks seem to be losing their hair and we may just see some solutions in the near future.
    I've given myself 8 more months of obsessing and then I'm shaving it off. I'm told this can be quite freeing. If you should decide to rid yourself of your remaining hair it's possible because you are so young, your face just might be beautifully displayed and without wrinkles. You can have fun with makeup and jewerly. Maybe even pierce your nose with a diamond stud. Of course having an "I don't give a shit attitude can certainly help.
    In the meantime, continue to get yummy hugs from the little person you've brought into this world with the knowledge that he does not care if you have hair or not. Visit this site often for support and information. As the other poster wrote "allow yourself to grieve" because you really have lost something.
    Sassy
     
  5. Joann

    Joann Moderator

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    Welcome BunBun :grouphug: I'm very sorry to hear about your Alopecia Areata hairloss. I hope it is of some comfort to you to know you're not alone.

    I know exactly how you feel at this time. I want you to know that all those feelings you're going through are part and parcel of the Alopecia Areata experience. I've had Alopecia Areata on and off almost my entire life and each time a new bout started I went through the same feelings you are experiencing.

    Rather than re-writing about my very long journey, I am including a link to it here:

    viewtopic.php?f=18&t=14268&hilit=My+Journey+to+Acceptance

    I would also like to know that I many friends with total Alopecia Areata hairloss who have met boyfriends and future husbands in spite of the hairloss. It is actually a good way to separate the superficial ones from the real men . You wouldn't want a guy around who is all about looks and appearance. You want a man to care about who you are not what you look like.

    It may be a little daunting in the beginning to date but with the great options available nowadays you don't have to start out talking about your hairloss until you feel this man might be the one for you.

    Your doctor is totally wrong to leave you without hope because hope and Alopecia Areata go hand in hand. I have seen total regrowth and remission from Alopecia Universalis and even more times from Alopecia Totalis. Your hair follicles are always able to regrow hair even after years if your immune system stops mistakenly attacking them. There is no doctor or derm who can predict any individual outcome.

    Even in my own experience which had so many factors for a poorer outcome, I did recover from each and every bout I had with the exception of the very last time which started in my 40's.

    I'm more than happy to help answer any of your questions or concerns if I can. Please feel free to share good or bad with us .

    Hugs,
    Joann
     
  6. BunBun89

    BunBun89 Guest

    Depressedandconfused,
    thank you for your support. I will take your advice and grieve. There is such an feeling in my heart each time I look at the mirror of disgust and hate over my new looks. At my age it is hard to stand strong and say (in my mind) to people who stare: "YES, i have Alopecia Areata, now what do you want me to do about that? should I come and stare at you when you get it". I feel that I am digging a hole and crawling into it, and I fear I will never come out. But you are right, I should cry. Because it will be worse of an outcome if I hold it all in. thank you, very very much :heart:

    haygirl326,
    I take that hug to my heart. It really feels good to have support. I am also considering a wig. One I saw at cosplay Usa site. There is a lot of fun one can do. But I fear the moment I choose to rid of what I have left. will I regret it, will it be freeing, will it be my acceptance or will it be even worse for me than before. those are the questions that twirl like a tornado inside my mind. I have not given it any thought, this about it going away then coming back for then to go away again. I cant imagine the horror of getting that joy of the hair starting to grow, crushed the very next week/month. I feel deeply sorry for you, and if you will forgive me: I hope I dont experience that.
    I said to my first doctor, which made her laugh, that i'd rather have totalis than areata, since if I got totalis people wont stare as much. The thing about having a shaved head means cancer, and people dont stare as much as they do when there is a spot out of place. Maybe I should shave. I just wish someone could drug me and do it for me so I dont have to be there until after (ha ha, trying to joke a little...)

    sassy,
    Yes you are probably right. Many girls look beautiful without the hair. the piercings I already got. Yes, my child is my strength. It might be helping me this that I have to concentrate on him. Makes the days pass by a little faster.
    I hope you are right, about shaving it all off and it being freeing. I will post a new topic about it when I decide to go through with it. a little: "how did it feel" topic maybe.

    Joann,
    It is so true it rids off the men that are shallow. But even the men that are not gets scared off, since they usually not strong enough to stand there, holding my hand, and saying: yes, she is mine and I take her for what she is.
    One day, I am indeed only 21, a true prince charming will be at my doorstep. and everything will be bliss, with or without hair.
    The problem is just that hair is such a feature of personality. I have always had thick, silky, long, strong hair. and now it is going away. chunk by chunk. cant help but to feel it is my soul that is being devoured. not the hair.


    One month left, and it is warm enough in the sea to go bathing. I cant go through a summer without taking a swim. no way I wearing swim cap. so I got to decide soon, with the spots or without anything at all. the pressure is on. it is a 50 50 chance that the day I shave it all off, is the day it all grows back. wont I feel stupid at that moment... heh...

    I wish there were meetings here in sweden, where everyone with Alopecia Areata could meet up. talk, have coffee. relax in such a nondiscriminating surrounding.

    But I thank you. I cried as I read the responses. It felt so good, to know there is so much love here. So much support. In my mind, I am holding you guys hand and you mine, and it will give me strength and I hope it will give you strength too.

    Lots of hugs, love, thank yous and happy-tears from me to all of you!
    :heart: :heart: :heart: :heart: :grouphug: :grouphug:
     
  7. BunBun89

    BunBun89 Guest

    so it's been decided. tomorrow whats left is being cut off.. pray for strength, it is very likely to be needed =/
     
  8. RatsNest

    RatsNest Guest

    Good luck BunBun89! I am hoping this will be very freeing for you! :bravo:
     
  9. Joann

    Joann Moderator

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    BunBun sending you BIG HUGS :grouphug:

    Cry all you need to. I was not brave enough to shave my head until there was only one large lock of hair left. However, even cutting just that off was a release for me. It is taking back some of the control over an uncontrollable condition.

    Many have done it before you. All have felt a release after. Some of those have regrown their hair now. I met a young woman at the 2007 NAAF conference. She had just shaved off her remaining hair. Her hair grew back the following year . She is married now with a baby girl. She's kept a full head of hair these past 3 years.

    Hope and Alopecia Areata go hand in hand.

    Please keep us updated. We're here for you. You're not alone.

    Joann
     
  10. BunBun89

    BunBun89 Guest

    yea i did it. its all off... i don't really feel like re-typing all that I wrote on my latest post on my blog so i'll just link you it http://ceciliegustafsson.blogspot.com/ latest post got pictures from 2004 to present day.

    thank you. I really need the support :jump: . my friends are great but they are even more scared than I, they dare not to speak of all this. so they try to care for me but some times I need someone else to start talking about it than me all the time. not strangers, but close friends. well yea you probably all know what i mean =)

    I wish sweden had a convention of some sort for alopecia victims... it would be nice making irl-friends. dontt get me wrong, i feel the support here i really do, i even know not to wear mascara because I cry when I read the responses. the support really touches my heart :wub: but i do long to go out partying a whole group of Alopecia Areata standing together, strong and supportive towards eachother :grouphug:
     
  11. RugBug

    RugBug Guest

    BunBun....you look fabulous! You are one of those lucky one's that looks gorgeous without hair. I applaud you...for your courage!
    :bravo:

    but seriously....BEAUTIFUL!!!
     
  12. Sassy

    Sassy Established Member

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    OH MY!! Don't you look cool...Your face can definitely carry the no hair thing. I am going to guess that you're feeling not only lighter due to less hair but your spirit is soaring a bit more than it was a month ago.

    So wear your little two piece bathing suit and run freely in the ocean without worrying about your stupid hair.

    Go with confidence girl and pave the way for those of us who are not as young and feisty as you.

    Have a fantastic summer!!!
     
  13. RugBug

    RugBug Guest

    :agree:

    x's 10!
     
  14. freakyfriday

    freakyfriday Guest

    I went to your blog and have to say such words you typed made my eyes water.

    You truly look beautiful in your new cut and color.

    Thank you for sharing :)
     
  15. denisep

    denisep Guest

    WOW!!! You look amazing! Really amazing!
     
  16. BunBun89

    BunBun89 Guest

    oh my god... i am crying here :sobbing: thank you guys! :love:

    One says that one can never see their own beauty. and inside I am saying that you're all ridiculous for saying i look good in that cut. but i trust your opinion and i will try to feel the same way about it all. Yes sassy, i will bathe like none other hehe. rugbug thank you, it warms my heart :heart: Freakyfriday, im thrilled that you like my blog. I always type it as I think it, it is almost as I am just talking and telling a story about the day. denisep thank you very much :heart:

    My entire life has been a battle. the 8 year long bullying and moving around all the time, the arguments, the personality-problems, the first two years of my kids childhood. my blog is my release of all thoughts and feelings and yea i pray for understandment but i don't even ask for people to read it. it's my release of anger, frustration, sorrow and happiness. it means a lot to me that you guys like it and that you guys think i look good in my hair. or shall i say without my hair, hehe... =)

    I am happy I logged in to this forum. now I can be happy all weekend. thank you... thank you! :grouphug:
     
  17. Lauren0424

    Lauren0424 Guest

    hi there! i have a similar patter that is advancing...right now i can cover it up but its accross the back and up way past my ear on my left side and getting there on the right....windy days are not good! lol
    anyways i wanted to applaud you for just shaving it off and rocking the look! have you seen kanye west's ex girlfriend amber rose? she is a model - for nike i think - and she is pretty much bald and really gorgeous looking with it! google her for some images. I'm not saying u want to date kanye west, but i'm just using her as an example of somene with no problems finding dates! in fact i'm pretty sure she broke up with him!
    anyways best of luck on your journey!
     
  18. BunBun89

    BunBun89 Guest

    Sorry for a late reply Lauren...
    Yea Windy days are the worst. I went to Accessorize and bought their hats, they are really cool, when I only had patches. But it got way too warm in the summer. Now, after the shave, the whole being bald thing has sunk in a bit. It is starting to become who I am, a part of me. I still got a long road to walk, I hope to end up not even wearing a scarf. But that must take its own time.
    Dating.. Well I am fully in love with a guy that I've been hanging out with now for the last month. We started dating about 3 weeks ago approximately and now have been going steady for over a week. Everything with him is and feels just correct in some way, he is by far someone that makes me feel lucky. Every day he tells me I am beautiful and that he loves me. It is funny since I had told myself, around February, that I was going to stay single for a year. God had other plans and brought me a true Prince Charming.
    Yea I will definitely google her! it is always cool to find more and more famous people with Alopecia Areata types. Makes the whole thing more natural.

    Thank you for your post. I thought my topic had been forgotten long ago, nice to see there's still some that peek and comment. Good luck on your journey as well. I hope you don't have to go as far as to shave it off, that your hair will start growing back instead =)

    Love, bunbun
     
  19. jlkramer

    jlkramer Guest

    I am about to the "shaving point" as well. I have went from full head of hair to pretty much nothing in about 3 months time. Drastic change for someone that has had to have my hair thinned out my whole life. Mine did not come out in patches though - it is universal. I haven't had to shave my legs in 3 months at least =bonus!

    I am a young momma too (28). My kids are 7,5, and 15 months...I have only left my hair so that they can see it fall out gradually - thought it would be an easier transition for them. I am going to the Cleveland Clinic this weekend...hoping for some treatment options but being realistic. I am planning on shaving it off after this weekend...I joke about it but I think I look like the "crypt keeper" at this point...haha

    Nice to meet another proud mom who is finding her way through this!
     
  20. BunBun89

    BunBun89 Guest

    Im also glad to find another mom who fight the struggle of being a mother plus having to deal with the hairloss :bravo: . I am sorry I havent replied to you until now, I have had quite a busy time lately.

    It amazes me that you let it fall out gradually, I wouldn't bare to see it go away slowly. I'd rather do as a band-aid. Please do post how it went after the weekend, I am curious about how it's been for you and a bit jealous of you never having to shave your legs hehe. :whistle:

    I am still working on this being hairless-thing. Just last week some guys thought I looked like a boy with makeup on. That hurt a lot. :thumbsdown:
     

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