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Comment by illustr8r on January 10, 2019 at 7:14pm

Having one of those days. For whatever reason my eyebrows and forehead feel really tight and tingly. No explanation as to why-I’ve not changed anything. My hair in the front the past few days has been exceedingly dry, like straw, until I put my hair gel/conditioner in it. I’m still getting baby hairs growing in but I’ve been seeing more hairs in the sink than usual. Guess I’m inching toward a flare or something?!? I hate this stupid disease!!!

Comment by Minter on January 7, 2019 at 9:39am

Love your posts Halfbakedwho,  I want you to know it really helps me that you share about your depression as I too suffer from days when it seems like I can't claw out of the black hole.  Having this stupid hair does not help on days like that. 

I have given up on Clobetasol and use a CBD salve (made from hemp not marijuana) for my itchy/irritated spots, luckily I don't really have it on my scalp, only sometimes on my hairline, but definitely have intense/crazy itching on my forearms/hands that drives me mad when it happens and one day I tried the salve on it instead of Clobetasol (which relieved the itching but also dried out my skin sooooo not so great) it works very well and keeps it somewhat moisturized too with it being an salve.  I originally got it to help with my achy hands as I am a crafter and some days my poor hands feel like they will fall off.  It is amazing the difference it has made!   

Comment by Halfbakedwho on January 6, 2019 at 4:01am

Hello all and best wishes for a wonderful New Year 2019. 

I am going through too much Clobestal - I think I put too much on - but my scalp, on the top of my head, feels strange and I have gotten some very huge swollen and somewhat painful bumps. This is new - the bumps I mean. Now I think I may have LLP and not just FFA (but who knows, it seems everywhere the jury's out...)

I also have dreams where my hair is falling out, faster and faster. So the goal of those dreams seems to be I wake up relieved (lol) because I actually do still have hair!

I can't relate though to wanting to end my life over this. No, no no - after all I've been through with deep, asphyxiating depression and dark-pit anxiety - I will not let my stupid hair ruin my life. I wasn't a particularly happy person before this happened, but I was happy enough. I am still happy enough, and given where I've been I'm grateful for that. 

To me, this is also a feminist issue. If we were men, could we imagine feeling suicidal over hair? My husband is entirely bald like an egg - he has no eyelashes, eyebrows, NOTHING - and he looks like an alien embryo. Or something. But what a lust for life. 

Of course, I'm scared and miserable that the powers that be have deemed I must end my life bald or partially bald, spending money I'd rather use to go to Greece on hair pieces. No, it's not fair. I also wish I'd been better at math and taller. 

I hope I don't sound critical because that's not my intention at all. I try to find role models in women that seem to have what I would like to have in the next portion of my life... Ok Ruth Bader Ginsburg has hair, but I think if she didn't, it wouldn't slow her down... it seems to be passion and purpose that keep one happy and not hair (from my observations ; ) ! ). Of course, I am stating the obvious, but mostly for myself on this procrastination-y Sunday Morning. 

Gros bisous, my hair-challenged sisters, have a comforting day. 

Comment by CurlyK on January 5, 2019 at 8:14am

Is there anyone in this group who lives in the Netherlands or Amsterdam in particular?

Comment by Jules Australia on January 5, 2019 at 6:34am

Afraid, You take the words straight from my own thoughts & feelings, where you said in your intro home page " I used to be an incredibly happy person until this disease".....  Exactly my sentiments .... living with the ghastly symptons & slow continual (seemingly never-ending progression of loss, & discomfort), with occasional reprieve in between, month after month, year after year, .... what can I say, but it truly can wear your spirits "down" into a spiral of despair, at times. I try sooo hard to stay happy; I am grateful for what I have, a loving husband & 2 wonderful adult children, friends & family; nevertheless, day in day out, this chronic disorder, much of the time is so 'unsettling' to live with ! It just takes the natural joy out of everday living :(  

Comment by Afraid on January 5, 2019 at 4:30am

Oh Jules i totally empathise it’s so much worse in certain temperatures.  That’s what scares me about how I will manage with ‘new’ hair which I will probably need this year.   It is a crazy condition and situation to be in :-((((( I only feel ‘normal’ when I’m wearing a hat.  I don’t believe since my official diagnosis the progression has stabilised for a minute..... will it just keep going until none left?  

Comment by Jules Australia on January 5, 2019 at 1:37am

Hate hate hate this disorder. It's hot humid in southern hemispher Australia, & often seems to have an impact on the scalp sensitivity/discomfort/itchiness.. not to mention the sweating, espec across hairline on forehead ....these weather conditions certainly do not enhance the already degraded look of the hair & more especially, the eerie odd feeling.  Hate hate hate it !!!!!!!

Comment by BubbaLu on December 24, 2018 at 9:51am

Hello Lu - I can view your question in my email I get when someone from FFA group comments on a discussion or posts on the comment wall, but I do not see your questions/post in this group!   

Anyway, I know the feeling of anxiety you are experiencing with the “news” of having this unattractive condition.   Finding this group has not changed the diagnosis but it has calmed my nerves.   It is comforting to know you are not the only one.   

I have been on hydroxychloroquine for about 7-8 months and it appears to be slowing the hair loss and drying up the red bumps.   

Last April I started a discussion called “New to FFA”.   I had so many  responses to help me understand.  Look for that and other posts and read what these strong and lovely women write about FFA.   

Comment by CurlyK on December 24, 2018 at 9:31am

Merry Christmas FFA sisters! Just want you to know I think of you often and hope you have a peaceful holiday.  

If any of you live in the Netherlands, please message me. Thx!

 

Comment by Afraid on December 24, 2018 at 3:47am

Merry Christmas everyone.  

I’m not on Facebook site so if any relevant ‘hair stabilising loss’ miracles please let me know! I value your comments

& virtual companionship.  Thank you so much. 

Wishing you you lots of festive fun x 

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