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Comment by Halfbakedwho on September 20, 2017 at 4:36pm

Yuck Sad in Chicago - I'm so sorry it's so hard. If I get there too, and I might, I am just going to wig it (or hair-piece-it) as best I can, and headband. Please take care - there's a video on youtube that I loved and encouraged me...https://youtu.be/QM_4W08DCK0
take good care

Comment by Sad in chicago on September 20, 2017 at 4:08pm

Very discouraged....getting worse with extreme loss back from forehead and around ears.  I used to be able to pull the sides of my hair down under my pieces, but am finding that will not work anymore.  It is so freakish looking; cannot ever leave my house without head covering and so uncomfortable without it.  But also uncomfortable with it....tape, itch, heat, worries.  Just a shitty, shittly situation.  And yes, I am a cancer survivor (24 years - yea!), but the joy of being healthy is diminished by this which came from nowhere and has no cure.  I am trying.  Everyone thinks I am so cute with my pixie haircut, but I know it is fake and makes me nuts.  

Comment by sallylwess on September 20, 2017 at 2:45pm

AnnieMay, I went to the top of this page to "search" and typed in tacrolimus.  The search brought up past discussions on this topic.  I am including one such discussion:http://www.alopeciaworld.com/forum/topics/a-million-thoughts-protop...

Comment by sallylwess on September 20, 2017 at 2:42pm

I use tacrolimus only when my scalp is itching, burning, or if I see flaking around the hair follicles.  I find you must use a light covering. I use clobetasol solution if the itching and burning does not resolve with tacrolimus.  I have heard others say that the tacrolimus actually helped grow back eyebrows where scarring had not yet happened.  I have not see that it increases loss.  I never know what causes the loss.  

Comment by AnnieMay on September 20, 2017 at 12:40pm

Love to hear thoughts from anyone using Tacrolimus solution? no idea if it's helping at my hairline. I seem to be going through a stage where my hair feels like it's getting SO much thinner with a lot of shedding and I don't know if it's from the Tacrolimus or just another lovely issue from FFA. But I've also been experiencing a lot of insomnia and I wonder if that could also be from the solution. Feeling discouraged today. . .

Comment by KarenGinny - Iowa, US on September 15, 2017 at 3:36pm

Sally, I just read your blog post and almost feel like I could have written the same thing, from the fighting my thick curly hair when I was younger to trying to figure out what to do about my hair loss now. I've lost about the same as you, a couple inches all around the hairline and temples and try to find ways to hide it. I've had this about 5 years now and coping with it is easier but still not easy to deal with everyday. I still don't share with everyone but I have become more open about it. And you're right, it's not cancer, but it is permanent and a life long struggle. I'm glad to know I'm not alone.

Comment by Airam-FFA on September 13, 2017 at 12:21am

Thank you for your post/blog, sallylwess. We have no choice but to get on with dealing with this condition and your words and beautiful photos are comforting and give strength that we can support each other through this. Thank you for sharing. xOx

Comment by Anne Louise on September 12, 2017 at 7:20pm

Sally, I too must join in the chorus of thanks to you for your outstanding post. You must have been an amazing English teacher! You are certainly a gifted writer. I related to each and every sentence, from the curly hair to the old photograph to the loyalty to your hairdresser. I sent it to my husband, my mother, and my sisters...my support system. It is so hard to explain what I am going through even to those closest to me. Your post put into words what I could not. Thank you!

Comment by sallylwess on September 12, 2017 at 4:18pm

Classical Anne, you made me smile with your comment about "surf's up."  Thank you for your kind words.  Also,Minter,  AnnieMay and Jules Australia, thank you for you words of kindness and support.  It is so helpful to know we are not alone in this journey.  

Comment by Classical Anne in NC mountains on September 12, 2017 at 2:22pm

Sally, thank you for your beautiful blog.  My backward progressing hairline seems to be a perfect match to yours at this point.  And I shared your teenage angst over curly hair.  Mine has always had a mind of its own, and it rarely agreed with me. Throughout adulthood, I would get huge, awkward waves at best, and go to my stylist screaming "Surf's up!"  I truly did not appreciate my curls until I was 50.  And at 60, it all started leaving me.  Foolish not to have appreciated God's gift of angel wings all along.

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