Replies to This Discussion

Permalink Reply by Lilac on February 26, 2014 at 1:16pm

I understand the mood swings. Most of the time, I would have the attitude of "I don't give a $hit" and then the next moment, I would start crying tears of sadness. 

Life is not fair but if you change your perspective, you will come to realization that this alopecia is a new gift. I said this because alopecia makes you to count your blessings and learn the meaning of life in a completely different way. You will eventually find this out in your journey.

What doesn't kill you, really does make you strong. 

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Permalink Reply by Cinder B. Rand on February 26, 2014 at 4:53pm

Dear Sheryl, I was out of town and when I got back I saw your post.  First may I say I am sorry that you have had this happen to you but....there is life after we get this odd odd thing.  I am going on my 7th year (wow really seems like yesterday). As yourself, I have lost everything all over; it still at times blows my mind.  No one knows why it happened.  In the beginning the doctors were saying it was my migraine meds but after I while I just thought "does it really matter?  It happened and now I have to deal with the now.  I never really had problems with allergies and such until I lost all of my nose hairs.  I read someone wrote about they miss their lashes and brows almost more than their hair, funny I sort of agree with this. Someone else wrote you have found the right site and they are so right.  Even though we really do not know each other, we really do and this thing...has brought us even closer together.  It is funny, I have tons of pieces all different colors, styles, curly, straight (I saw someone wrote about this as well), and people just expect it from me.  Sometimes I just think that they think I am just really good with doing my hair.  There are times now when I have my brows and lashes done up; I think I look almost better without any hair at all.  This summer will be my first outing in public doing so.  I want to do this just because.  As we all know this is not easy, especially in the beginning but whether this defines us or not I am not sure.  Maybe it does define us but in a fabulous way.  There are so many things we can do with our brows and lashes and so on.  I always say that this has been a very interesting journey.  Of course crying, anger and all of the things that go along with all of this emotion but with that said, I have met so many amazing people through this site, through having this.  We are all over the world.  I would have never have met all of these wonderful people if this had not happened to me.  So welcome to the site and yes for sure you are among friends who get you and get what is happening on one level or another.  We are all beautiful.  Peace!!!  Cinder

 

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Permalink Reply by Sheryl on February 26, 2014 at 10:43pm

Thank you Cinder, your words are wonderful and although I can't see the light at the tunnel yet I can appreciate you understand me! I am a chronic eczema sufferer and now my skin doc has said this is simply another auto-immune disease whereby my own body has rejected my hair. He is saying it looks like its heading for universalis. My nose is not the same and in the last week feels blocked in a weird way...how did you deal with that? I feel blessed since being on this site even for such a short time..so many people that I haven't had to 'explain' things to they just know. Peace is something elusive but I hope I will find acceptance and that will follow. Ideas for brows and missing lashes would be great too if you have the time. Take care :)

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Permalink Reply by newlydiagnosed on February 27, 2014 at 1:21am

..I feel miserable too and when I think it may never come back, this is permanent for life, it is even more depressing

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Permalink Reply by Sheryl on February 27, 2014 at 12:35pm

Hi newlydiagnosed, for sure its a tough one to try and get your head round. I'm a bit over trying to be 'normal' around people who say oh well chin up, and it'll be ok...I mean, its not ok!!!!! still I'm glad to be able to share things on this site with lovely people...so take heart! 

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Permalink Reply by Ladyloss on March 26, 2014 at 1:45pm

I completely understand what youre going through. I was diagnosed two years ago after my diffuse alopecia was triggered by taking spironolactone for hormonal acne. Never had hairloss before. Just When my emotions were starting to stabilize and I was accepting this situation, my eyebrows started falling out. The last third of my eyebrows are almost gone now. I'm now an emotional wreck again. I'm having nightmares that I'm running my fingers through my hair and tons of hair comes out (reality).. Lol. Do I avoid social situations? Yes. I'm a mother and have a very social kid, so you can image what kind of effect this is having on him when I don't want to leave the house.

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Permalink Reply by Magdalene on April 10, 2014 at 2:03am

I´m AT (no hair, no eybrows occasionally eyelashes in variyng amounts)I isolated myself too, for a long time, after I lost my hair, and it didn´t do me any good, it makes the depression a hundred times worse. Go out there, and do what you consider fun; go hiking somewhere or just take walk in the forest, take of your cap or wig and feel the wind stroking your head, it´s a Lovely feeling, or go swimming,feel the water on your scalp.

Go out and be open about your condition, people are surely curios, but they don´t bite, And especially kids seem to be more open minded. Having to explain is not bad, annoying sometimes,´but you learn to live with it. And remember, the first stupid comments and stares are the worst, one learns to live with them, ignore them, and be clever back. Good luck, and take care!

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Permalink Reply by mike on April 4, 2014 at 11:31am

you should consult with dermatologist as i concerned looks like you have some skin related issue and looks like lack of vitamins. So goto doctor and start treatment according to direction!! 

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Permalink Reply by sabina on April 9, 2014 at 1:58pm

Hi Sheryl

I was born with AA so I never have experienced hair loss. I am 27 now and I tried to have a normal life like other people. I know AA is a concern for girls beauty but not health. There are a lot of beautiful people around you with health issues. So sometimes when I feel sad about AA I try to think about my healthy body and mind, also I think AA learns me to think different and see a lot of things around myself, have different view about world.

AA learns me to think about other people, about my real me and who is inside me.

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Permalink Reply by Anna on April 9, 2014 at 2:53pm

Hello Sheryl,

I know how you feel. I am feeling depressed too. In December I was told that I have scarring alopecia (once hair follicle get destroyed hair never grows back again). I still have some hair but the top of my hair is getting bad and scalp is showing. I can only wear my hair pulled back but it is getting worse. I been using this medication called Clobetasol but both me and my doctor we realized today that this medication helps my imflammation, but thins out my hair so she told me stop it for know. With the help of rogaine I see some regrowth but still not enough. I keep reading articles, looking at pictures and I get more and more depressed. I will never accept this alopecia no matter how much support I get  and I can't imagine wearing a wig. That's why I don't have any tip. All I can do is just wish you well. Best regards:)

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Permalink Reply by Hayley on April 21, 2014 at 1:05am

Hi Sheryl,
Maybe this isn't the advice your looking for but I think you're getting a great variety so far so I'll add my two cents. Make sure you're making time for the things and people that make you happy in your life and in your thoughts. I know sometimes alopecia is so overwhelming it's hard not to get caught up in letting it fill your mind.
Everybody on this site is here gor you, utilize the forums and watch video, read blogs remember you are not alone. Treat yourself to something that makes you feel special.

Alopecia sucks in a way it's so hard to explain to others that haven't experienced it and it can feel very lonely, discouraging and unfair.

You are more than your hair. You can still be beautiful bald, you can still be charming, your still the same old you just with a unique conversation starter.

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