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Comment by Sad in chicago on January 23, 2018 at 11:49pm

Hello all.  I have been checking in, but found our discussions of the same nature I have shared with you for sometime now and didn't feel the need to participate. But tonight I really got a big blow.  I noted sometime ago that some of you had loss at the nape of your neck, which somehow I avoided thus far and thought, oh no, this cannot happen too.  But, I mentioned to my hairdresser and wig/piece specialist that the bottom back of my hair was not laying properly as I was there to visit her for a trim, and she noted, I cannot believe this! that I am starting loss there too.  We are able to cover it for a while with clever shaping but it means all my styling needs to be shorter and I, even tho I have two peices I alternate with, feel like I am back to square one.  My loss at front and sides is worse than ever and now this.  I am beside myself.  Every time I feel like I am handling, dealing, learning and moving on a bit, something else with this horribly stupid, irreversible disease shows up.  Yes itchy, no scarring, some occasional little bulbs, irritation from tape, thousands of dollars spent, and on and on.  This has altered my life from one of freedom to sadly dealing as best I can but never feeling like I will truly be myself again.  The worry, concern, constant attention to the details of it and trying to look like I am wanting to and am supposed to everyday is wearing.  Thanks for letting me vent.

Comment by Jess on January 23, 2018 at 10:19pm

Rachel, the loss hasn't been too bad. I've lost most of my sideburns and about a centimeter around the sides of my face. My side hairline also looks thin and uneven.  Additionally, I lost my "widow's peak." It really wasn't a true widow's peak, but a small group of hairs at the top middle part of my forehead. I haven't done microblading but may in the future. I just draw my eyebrows on everyday, which is a pain. The thing that keeps me hesitating (besides money) is that I wonder what happens after years and years of having it done? The technique seems fairly new, and I wonder if the skin would atrophy or something after being tattooed every two to three years over a twenty year period. I may post some pics of my loss a little later. Do you think your regimen has been effective in slowing the progress?

Comment by illustr8r on January 23, 2018 at 1:43pm

@Minter Those undercut looks are awesome! I might still be able to rock one of those but I'd have to use a lot of product in my hair to complete the look. I have BuzzCut hairstyles bookmarked- along the same thinking, fade the hair loss on the sides into a buzzcut. 

Comment by Minter on January 23, 2018 at 7:34am

Halfbakedwho, good luck with the headband search- you will find the right one and it will look great with your hair, you are in France after all!   I have a collection of headbands (stretchy gym ones) & scarves but no matter what I try I never look good or comfortable with one on- I may start wearing a beanie instead ;-) 

Rachel, I love your words and I will try to keep them close when my hair gets me down, life is precious along with whatever comes along with it. 

Illustrated8R, I'm on pinterest and google all the time looking at hair styles- my new thing for little while was the undercuts, I was in Poland a month or so ago and saw women rocking undercuts over there, they looked great so I was thinking since I already have an undercut started on the sides in front of my ears (not by choice but thank you FFA)  maybe I will make this FFA "fade" work for me haha! But I am not quite brave enough to do it and worry that my hair is too thin to pull it off :-(

Comment by Halfbakedwho on January 22, 2018 at 4:42pm

That’s an excellent idea illust8r ! And thank you to Rachel for those hopeful words which help tonight. I feel like I’m getting to know you all better here which helps. Thank you also Helen for your positivity. Yes life is too short and I hope to have a few more good years left with or without hair... I did break down and order a headband but I have to see how it can work with my hair. Bonne nuit les cocottes. 

Comment by Rachel Germany on January 22, 2018 at 4:41pm

Hi Halfbakedwho, poodles are characterful, intelligent, instinctive and concentrated...sound familiar?:)  I'm sure you will find the right way to wear your headbands, otherwise let's think about setting a trend with the turtleneck, cape, sword and turban...we seem to be well based  here in the forum and could cover the trend internationally!;)   I do hope your feeling a little less obsessed, if not vent it out here.

Comment by illustr8r on January 22, 2018 at 4:38pm

Ah the irony @HalfBakedWho! I have stick straight hair and would have killed to have a head of wavy curly hair! Now, I am happy with what is left of my stick straight hair and the gray too. 

I have no style options for you as I've no experience with curly hair. Have you done any image searches for " curly hair, high forehead" just to see what comes up? I did that with my "thinning straight hair, short haircuts" and ended up with my so far successful pixie.

Comment by Rachel Germany on January 22, 2018 at 4:32pm

Hi Helen, it's wonderful that you love food...one of the joys of life!  And going to the gym 4 days a week is something to be proud of.  Internalizing stress is something I can relate too while being calm and positive and giving others strength at the same time.  But we are the way we are and maybe we were born with the plight of this syndrome(I don't call it a disease).  So at the moment I find myself thinking what the Hell.  If something feels good then I eat it /take it and otherwise leave it.  Our lives are so precious and short and this condition leaves us feeling out of control which lessens the joy of my life so this is what I am working on...feeling in control, feeling thankful for everyday with my family and the wonderful people in my life.  I have definitely found that turmeric has a great impact on my mental state and there are many studies to read on the internet as to It's benefits, which are very diverse.  I'm a naturopath here in Germany and through my journey since ffa I have gained so much additional knowledge of both the human mind and alternative remedies and have had the pleasure of supporting so many wonderful people with problems much more serious and life changing than mine.   I do not ask myself of the cause anymore, I just want to get on with enjoying life and when I read your posts I feel at ease and can hear your positivity at a deep level.  I hope you enjoyed the Australien tennis! I am just in the process of planing a trip to Sidney next January to visit my oldest and best friend who I haven't seen for ten years, so It's nice to hear from down under...it makes me feel a little closer to my friend...like the world isn't quite as big as it;)

Comment by Halfbakedwho on January 22, 2018 at 3:54pm

after all my positivity of late, tonight (Monday night here) I am feeling obsessive b/c it's harder to cover my forehead, and the bald spots on the top of my head are getting more apparent (at least to me). This sends me googling for solutions. I think "okay, headbands" but my hair is (not to belabor the point but still) so thick and curly that what's left poofs out of the sides and the top of the headband. Think Ronald McDonald with a headband. Noooo. Then another thought - f--it I will go back to blow drying my hair straight and THEN I can wear a headband. Dermatologist doesn't want me to do that, but if my hair is falling out no matter what she says to do, then who cares if what I have left on my head is straight and not poofed out? Conundrum. I look like a poodle with a large forehead these days. 

Comment by Helen M on January 22, 2018 at 5:27am

Hi Rachel and Jess. I too list my eyebrows and most eyelashes first, and leg hairs. Then my head hair. Funny thing I never thought about my arms and have just checked them - you guessed it, no hair - haha they have probably been that way for years. Like others there are body parts were the hair remains for some dam reason - no justice. I am a pretty positive calm person but sometimes wonder if I internalise stress rather than letting it out. Go to the gym 4 days a week unless I'm having a lazy week or too many commitments get in the way.  Try to eat well but like food so am no model, and love good chocolate, good cheese, pasta, oh really just about anything. I haven't cut out any food types and don't take any pills or medications. Have never been into that sort of thing. When my eyebrows fall out I just left them that way. Have never really worn makeup so had no hope of competently drawing them on each day - it would have been a disaster. Am finally investigating micrblading or tattoos, though to be honest am not particularly worried. What I do find is that when I don't put my wig on, having a bald head means I accidentally head butt cupboards, etc. Without hair in your periferel vision you don't realise how close you are until donk, it's too late. Right best be off to bed. Nearly midnight and still need to iron clothes for tomorrow. Then again, the Australian tennis open is on TV and it's always addictive watching - looks like Djokovic might loose.

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