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Comment by illustr8r on December 14, 2019 at 2:34am

Hi @ Afraid! It is a constant struggle isn’t it? Right now my hair seems pretty stable. I’m actually trying to grow my pixie out to a wedge but I’m not sure I’m going to succeed. My hair just doesn’t lay the same and with more hair it has less volume (if that makes sense) so it seems flatter to me than with a pixie. I was just kinda tired of having my ears sticking out! LOL! My main anxiety and frustration is my skin. The chicken skin on my chin and lower cheeks is really rough looking. I now have atrophy by my temples and sideburns. My left eyebrow has scarring and the right one is starting to get the same weird texture. I have to use eyebrow powder and pencil since I’m long overdue for a microblading refresh-and my skin is so rough in my brows now it’s like I’m drawing on rough watercolor paper. My eyes have settled down but I have use the Occusoft wipes every day. I often wonder what the average 54 year old does to get ready every day and how much they worry about their looks. Aging is one thing-this disease is just cruel. I don’t know. I have more good days than bad when compared to when I was first diagnosed but there are always sad days. Hugs to you all! Thanks for listening as always. :)

Comment by Afraid on December 13, 2019 at 6:05pm

Hello everyone 

I haven’t posted for ages but still check site and love to read your posts.  Keep thinking I’ll post with positive news but....grrr...none really.  I take heart from the group support.

i continue with acupuncture, yoga, dancing, 1 tablet of hydroxychloroquine per day but may stop as nooo help (tho’ daren’t stop yet?!) I take 1000mg vitamin c per day.  Further to allergy testing (skin patch test) one year ago and finding allergic to perfume I have tried hard to avoid fragrance etc etc in products.   Have had hair tested for intolerances and since August have removed all foods identified  from my diet :-(.  No positive effect as yet on hair, shedding and loss continue, though have noted some other benefits.  I am at a total loss.  The ridiculous thing is that despite a vacuum full of my hair on weekly basis and the constant shedding as I manipulate my hair (surprised I have any left) and the visible loss and thinning at sides, nape, front and temples I still can’t seem to believe it.  Above my eyebrows four finger width loss (five at temple).  I constantly reframe and I’m grateful for the things I have but crikey it does get me down.  It is so wearing.  Surely something else will crop up and help?! Here’s hoping! 

good luck lovelies, thinking of you all x 

 

Comment by Anonymous on November 18, 2019 at 9:14pm

Forgot to say I started Finasteraid last Feb. 1/2 pill daily. CBD oil July or August of 2018.

Comment by Anonymous on November 18, 2019 at 9:06pm

I don't post often but I wanted to let Halfbakedwho and anyone else my results with Finasteride. I am most pleased with the nape of my neck. My derm thought it was more dermatitis than FFA, but it had a red inflamed blotchy area, and mostly bare of hair. I convinced her that it wasn't a birthmark. Family members would have told me if it were. Be that as it may, fine hair has grown back. I have a couple more eyebrow hairs. The top and sides are about the same. Lately, though I have noticed more hairs in my comb and brushes, so have added a laser cap/3 times week. Too soon to tell. Besides the Finasteride, I use a topical steroid if red bumps appear. Also, 5% Rogaine once/daily. CBD oil twice daily. I started seeing hair grow back with the CBD oil, would be interested in hearing from Robin and how she is doing. It is a lot to throw at my edges, but baby steps,.I am very self conscious in the toppers and wigs I have worn, and am trying to work with my fine, straight stick hair and FFA. I react to many commercial products, so use products that are as pure as possible. This group has been a wonderful source for me. Thank you all.

Comment by Halfbakedwho on November 17, 2019 at 2:49pm

Hello everyone, it's been a while. CurlyK I love your new hair. I just tried to catch up a bit - Minter I'm sorry that you're going through a hard time. 

I have lost a lot of hair this fall; I find hair everywhere - all over my computer, in our food, on the rugs, and it's coming from right at the top of my head where it's nice and visible. My easy-breezy denial is not feeling so easy-breezy - my forehead is very forehead-y. There is numbness - that telltale end-of-follicle sign- right through to the middle of the top of my head. And there's also a numb spot on my crown. 

On the FB page, and on Instagram, there's a very courageous and tenacious woman who has overhauled her diet which now excludes everything but pumpkin flour and wheatberries. What are wheatberries? Are they the pink cereal that used to be in Franken berry when I was six? Probably not. 

I am not so courageous nor tenacious. 

Has anyone had a serious and visible slowing of their illness thanks to Finasteride? I was thinking of trying it again. I am afraid of side effects, but my GP thinks it might be worth trying again. Otherwise, I'm thinking of heading back to the fake-hair franchise downtown to hear what they might offer me. 

In other news, I no longer use Botox and other injections, so I have had, as we say in French, "un coup de vieux" (looking a lot older quickly) between my hair and my wrinkles and general sagging face. I am tired of spending money on those injections, which none of my friends here use. It's also not really a French thing - women here just let themselves get older naturally - and more or less gracefully. 

So glad you are all here, please take care of yourselves, big hugs to Minter (and all of you). 

Comment by CurlyK on November 16, 2019 at 7:36am

Hello everyone! I have good news! CARF has released the registration link for the April 2020 conference in Nashville TN. I’m honored to be part of the conference planning committee and we are planning so many wonderful things that address all aspects of our disease - the physical and emotional, and lots of practical tips on camouflage techniques and guidance on how and where to find resources. You can learn more and register at www.carfintl.org

This conference is worth the investment in yourself. It’s where I really started to get answers and more importantly start relationships with other women who share a commonality in FFA - relationships which continue to this day. 

Hugs to all of you this morning! 

Comment by illustr8r on October 31, 2019 at 3:03am

Many (((hugs))) to you @Minter. XXOO  

It’s such a awful disease that takes so much little by little that others take for granted. Sure, it’s “only hair” but it’s self esteem, confidence and what makes you. I hate that I had “Brooke Shields” eyebrows back in the day and the trend now is big bold brows. I had that but now mine have to be tattooed on every 2 years and the hair I have in my brows grows in funny directions.

I’m very thankful I have the space to talk to you. :)

Comment by Gai on October 31, 2019 at 2:47am

Hi ladies, I read the comments you all post but rarely post myself. I so understand all the comments, and it is surely a dreadful disease both physically and emotionally. No one else gets it, that is for sure, except other sufferers. My husband just says men go bald what's the problem, I still love you whatever. I know he is a good man but this doesn't cut it with me. I have suggested I am going to buy a wig for when it is too bad, (so far lost 1 1/2 " from front hairline, and very thin sides), and he then thinks I am becoming fixated. ....  not a help.  

I think a wig will be the only answer, but then I am terrified of looking really silly. How do you pick a realistic one, where to go, not many options in rural Australia. It is so good to be able to vent to others who understand totally. Thank you. 

Comment by Minter on October 30, 2019 at 7:51am

Thank you ladies, I will admit I did feel a lot better for the rest of the day!  Like a weight was gone for sure- I've tried to explain this stuff to (female) relatives and friends and they just don't get it :-( but you guys do and sometimes it just has to be all let out!  

Though I remember when I first came here, I was full of bravado, oh what's the big deal, I'll shave my head or wear a wig or whatever! Now the thought of the above fills me with dread.  You all are the best and I am so glad to be able to be here with you all!

Comment by maggie on October 30, 2019 at 7:21am

Hi Minter, You should never fear being alone. I have been reading this group for a few years but never post. You are always so positive informative, and knowledgeable. I don't come to this site for every post but I always do when you comment. Please don't isolate yourself. With your personality you should have many friends, both men and women. Don't sell yourself short. You have lots to offer!

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