Comment

Comment by Jules Australia on October 30, 2019 at 4:31am

Oh boy Minter, don't be sorry for venting how you feel, I for one (& I'm sure many others with FFA/Lpp here & elsewhere), have total empathy & understanding of the feelings & thoughts you describe; I get it 100%. I also sometimes feel like escaping to that fantasy desert Island idea, especially as the loss slowly continues to creep back further & further, I'll come with you. Noone to stare or judge you, whether it be with or without an odd looking hairline, a shaved head,  a scarf, no makeup, not having to 'bend over backwards' to try & look what's considered 'normal' or expected to fit in amongst society, socially etc. The long term, chronic, recalcitrant nature of this disorder can be so bothersome & exhausting, psychologically & emotionally, to live with. I've been feeling more down than usuall these past few weeks, dealing with the hairline moving back further & trying to feel normal, trying to keep up the positivity .... experimenting with scarves to wear as headbands (at home); but just not feeling right or confident wearing it out in public. Have had same thoughts that if it all just fell out in one hit, the decision of whether to shave &get a wig, wear scarves, whatever to disguise the odd loss would no longer be a quandry but a necessary adjustment.  Yep, Minter I truly get your feelings, hugs to you, ..no better place to 'spill your guts', raw emotions than here, where others are walking in the same shoes   xxxxx

Comment by Minter on October 29, 2019 at 8:53am

I'm pretty sure it was the same for me- funny thing that made me start to wonder what the heck was going on was that I was burning my forehead for a couple years off and on with a straightener or curling iron and I was like (along with my hairdresser) why is this happening more and more often and why am I so clumsy!?

Until I finally realized that my arm hair had disappeared and my hairline was actually receding it all made sense as to why it kept happening! My hair now (3 years after diagnosis) is noticeably thinner and my hairline is just over "2 fingers" from where it used to be (probably more like 3 but hey there is the whole denial thing popping up again haha :-/ )    

I've said it before, I sometimes wish I would wake up one morning and it would all have fallen out and then the decision would be made for me.  

Then I would be done with every single morning of trying to get my hair to look "normal",  constantly fiddling with my hair to make sure it looks "normal", avoiding mirrors because that way in my mind, I can pretend my hair still looks "normal", praying that it is not windy or sunny so my shiny scalp and white band of nothingness are on full display, also wanting to cry because I tend to get really sweaty on scalp/face and then I just look like a weird sweaty freak which is one reason why I haven't gone the "helper hair" route because I would just walk around sweating all the time, the other is that not only would I be sweating, I would also be scratching my head like crazy as hats/scarves anything on my head really irritate me. On the other hand if/when I shave my head, which I've decided to do when the time comes, I know I'm way too old to be edgy and hip with a bald head so I will just be a strange middle aged lady with a bald head who looks really weird.

I hate that this is happening to me, I hate that this is happening to all of us here and to all the women not here who haven't found this forum.  

I'm getting a divorce, so soon I will be a single again and because of this disease destroying what little confidence I had and also destroying what little looks I still had going for me, I know I will now be alone for the rest of my life and am planning accordingly.  Because of this disease I will always be the weird looking sweaty (with or without a wig) grandma (maybe someday) or aunt or neighbor or co-worker with the " strange hair thing and the thank god it's not me's whispers behind my back" going on until I die.  I wish I could just fade away to someplace like a deserted island where no one will notice me and I could just have a little house and be alone, it has gotten to the point that I am avoiding old friends and going out and doing stuff as I don't want anyone to see what I am becoming and it is easier just to not see people. I only have one child and they will be off on their own doing their own thing with their own family eventually and my siblings have their own families to worry about so....yeah I see now that it is already starting to happen, I will actually fade away and be that strange lady who lives alone down the block and is the house to avoid on Halloween!

Anyway, sorry about how this spun into a whole poor me thing, but, no one else gets it unless you have FFA like we do and I am so grateful we have this place here to come to and sometimes it just all has to be said to get it all out.

   

Comment by ohnonotme on October 28, 2019 at 6:49pm

Sometimes I wonder if I could have had ffa for years and not realized exactly what was going on until recently. I have always had a "big forehead" and I have always shed lots of hair all the time (in the shower, in brushes) but never paid it any attention. The weird thing is I feel like I see less overall shedding now but what little I do see if directly from the hairline. Sigh.

Comment by Minter on October 28, 2019 at 9:14am

I'm sorry illustr8r, FFA is really horrific with it's ups and downs-

though it is awesome that you got such a great compliment on your hair!   

Comment by illustr8r on October 27, 2019 at 3:16pm

My lone red dot.

I had a minor shed after I returned from a trip and about the same time the seasons changed. Things settled down and my hair has been really great. I even got a compliment that my pixie looked like Charlize Theron’s new do. Glorious!!! Then, on Friday I woke up with a tell tale red dot in my widows peak. I got greedy. Thought I was in the clear. FFA said,”Sorry, girlfriend! Bwahahahaaaa!”

Comment by Anonymous on October 12, 2019 at 10:38pm

My hair has been shedding more lately and feels thinner. Could this be a seasonal cold weather shedding? I'm looking at wigs and toppers again after using a visor or hairband to disguise hair loss for about six months. My hair seemed better after starting Finisterade for about the same period of time. So frustrating. Has anyone used a laser cap?

Comment by Minter on October 6, 2019 at 8:31am

Halfbakedwho, Hope you feel better in Paris! I guess having a mother with FFA does give a sort of of explanation as to why this is happening since I apparently inherited this nightmare from her so it doesn't seem like so much of a 'why is this happening to me mystery'.  Though since we barely tolerate each other it doesn't make it any easier to deal with :-(

 

Comment by Elizabeth W on October 4, 2019 at 5:32pm

Never watched it, but I suggest writing to NBC or the show's producers about the insensitivity of what was supposed to be funny, but offensive and hurtful to you and women with hair loss. This is an opportunity to spread awarewareness of FFA.  How about some letters the editor's of your local newspapers (if they still exist) or comments on social media.

Comment by illustr8r on October 4, 2019 at 11:39am

I don’t know if any of you watch the tv show comedy “Superstore” or not but the season 5 premiere featured an unfortunate not funny to me skit on female hairloss. 

A lady was trying to buy a hair care product and the character Cheyenne wouldn’t let her. Other characters intervened blah blah and then the lady said,”the women in my family all have male pattern baldness” or something to that effect. She then flipped up her bangs and she was FFA bald! No sideburns and up and over bald. 

I looked at my hubby and said, “not funny.” He agreed.

I wonder if someone in writers room knows of or actually has FFA and was just trying to make light of it. I was a bit shocked and sad-and I’m not easily “triggered” as the kids say these days.

Comment by Halfbakedwho on October 4, 2019 at 8:53am

It would feel oddly better to me if I had a close or even not-so-close relative with this. I've always been the "weird kid" (what you're not surprised) and this just adds another notch to that scale, a peg to the left, a statistically significant item that pushes me further out of the orbit of the so-called normal bell-curve. So maybe it's a relief to hear it's an epidemic - no not at all - something is terribly wrong if this is an epidemic. And like all the whistle-blowers for all the other reasons (to be current) this is complicated and unwelcome if necessary news. 

I am feeling weird and flu-ey and am leaving for Paris for a conference so I can't pay attention to it too much. 

As for knots, my hair is generally always more or less in knots - bc curly. So I sort of commiserate but again it's my normal so welcome to my world. 

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