Replies to This Discussion

Permalink Reply by Sad in chicago on August 28, 2014 at 2:59pm

my problem is that there is so much data that NOTHING works for FFA because of the scarring that I have stopped trying, and as I mentioned, I actually feel less stressed then trying all that stuff.  I have enough trouble keeping the wiglet looking good!  I also have tried headbands for working out and home and it does look a little funky but OK for once in awhile.  

So the question is, does this stop ever, or does it keep going until you have no hair.  I am 67 years old and wondering what the future with this will be.  I picture myself an old lady in a home with a stupid lopsided wig on my head!  Always thought I would  grow older graciously with a short nifty haircut and pleasant thoughts.  I try not to be miserable, but certain days I am inconsolable.  Fortunately I am able to come out of it most of the time.

Permalink Reply by MJ on August 28, 2014 at 3:47pm

Sad in Chicago,
Your feelings are perfectly normal. I can particularly relate to how you envisioned growing old. I felt the exact same thing, but as 51 with two young daughters, I also envisioned being young and hip even though I am an "older" mom. We all have to find our own way to handle this burden. For me, my focus has been on transforming all other aspects of my physical being. An anti inflammatory diet, exercise/yoga fairly regularly, and breathing exercises have helped me to feel like a new person. A nine year old in the neighborhood just lost her battle with brain cancer and I know that her mom would give every hair on her head to have her back. Every time walk in a medical building, I think about how much worse things could be. That is not to say I still don't have my moments. This was so devastating for me, more so than having breast cancer and one reconstructed breast. I would trade my remaining breast to make this end. But, I also know that there are pretty good hair options as others have discovered. I am always examining heads and I never see anyone wearing a wig, but there must be women wearing them and I just cannot tell. So, that may be me some day. And I also will continue to hope that we will see hair follicle stem cell solutions in a few years. Sorry to blab on. I just got on a roll. But that is how I cope. You will work through this as well. The women on this forum are a great help.
MJ

Permalink Reply by Sad in chicago on August 28, 2014 at 5:36pm

Thank you.....what a small world.  I also lost one breast to breast cancer and had reconstruction (a tram flap) and feel the same way about wishing I could still have my hair (which I never lost since I only had radiation and no chemo, ironically enough).  Anyway, you are right.  I should take better care of myself....I have been focusing so much on how I look even to go to the gym that I have been bad and hardly gone at all.  Thanks for the smack in the head which I needed.  You are right, this is a good site, especially for when you are feeling sorry for yourself.

Permalink Reply by Anne Louise on September 2, 2014 at 5:15pm

Hi ladies. I haven't written here in a while but I do hop on now and then for encouragement. Sad I laughed when you said how you envision yourself in a nursing home with a lopsided wig! My thoughts have wandered there too. The permanent nature of this hair loss does have me worrying more about the future and how will I deal with wigs, etc. but I do my best to enjoy the present moment.

I spent a week at the ocean and gleefully bogey boarded with my kids without a care. Last year I didn't go in the water because I had penciled my eyebrows. But now that they are tattooed I had no worries. But I did wonder about next summer when my hairline will likely be more noticeable.

I continue on Doxy, plaquenil and clobetasol but I still have hair loss. I do think it has slowed the loss. Anyway, I decided to work on my physical health, as that is something I can control, and at least I can be happy with my body if I'm not with my head. So I trained for and completed a sprint triathlon! I haven't felt this strong since before I had kids. And like you, MJ, I'm an older mom so I am very motivated to look as young as possible. It was also my 5 year anniversary of my cancer diagnosis, so this race was a small triumph for a number of reasons!

Just wanted to share my little success story and thank you ladies for contributing to this site, it is so comforting and inspiring to me.

Permalink Reply by Sad in chicago on September 8, 2014 at 2:01pm

Some of the ladies have talked about Dr. Weil's anti inflammatory diet which looks like a Mediterraen diet with no processed flour or sugar.  I am interested to know if this has worked somehow.  Might just be good for losing weight anyway.  I have gained some weight with this whole thing.   I am trying to work out more, as I have FINALLY stopped worrying about how I look at the gym and what to do with my hair (or lack of....).  I have been wearing a bandana scarf around my head.  I take antioxidant vitamins and Vit. D.  That is about it.  As I mentioned, Rogaine, Propecia, nothing made a difference.  And so far it is proven that nothing works, so why put all this stuff in your system?  

Permalink Reply by Kaz on October 4, 2014 at 10:15pm

Hi sad in chicago

I am still coming to grips with FFA only being diagnosed 6 mths ago but im sure it all started couple of years ago. I had my eyebrows tattooed even before diagnoses as I lost my eyebrows after visiting a beauty salon to have them waxed. I blamed the salon for my lose which now I know was not. I try and read up on a lot of info and have decided not to take any medication as its so potent on the body and have gone the holistic method. I follow Paleo,  AIP as Its a anti inflammorty diet ( I shouldn't call it a diet as its just a healthier way of eating cutting out all the sugars and processed foods that are detrimental to our system). in doing this I have also lost a inch all over. I try not to stress any more and exercise better. Since starting this new healthy lifestyle I have found the fallout is less and not as itchy, so here's hoping it might burn out soon.

Permalink Reply by Sad in chicago on October 5, 2014 at 6:40pm

Thanks Kaz.....I am determined to start taking better care of myself.  This condition has changed my self esteem and even worse, motivation, to get on top of it.  I have become complacent.  I am going to follow your example.  

Permalink Reply by sallylwess on September 8, 2014 at 2:07pm

I finally got a wiglet or topper just over a week ago.  I am getting used to it.  There is one question that I have, have any of you noticed even more loss of hair from wearing a topper?  I think the fragile hair on my hairline has broken off and I have lost even more hair from wearing the hairpiece.  What do you think?  Has this happened to you?  

Permalink Reply by Sad in chicago on September 8, 2014 at 2:16pm

I thought I noticed that in the beginning also, but, in fact, it is OK.  Our real hair is so flattened by the topper that when you remove it, I think it looks worse than it really is.  When I wash and blow dry my hair,  it does appear to be the same and not worse.  Also, use the clips carefully, and if you feel uncomfortable or if they are hurting your hair, you can take it back to where you bought it and they should move the clips around for you if necessary.  It really does take some adjustment.  Good Luck!

Permalink Reply by sallylwess on September 8, 2014 at 4:07pm

Thanks!  I do know that I have a significant loss in the front.  It happened in the last ten days.  I agree that the flattened look is part of the problem.  My head was just red and sore at first.  I am going to talk to the person I bought the topper from about moving the clips.  I also think it needs a bit more shaping.  I like it.  I just am adjusting to it.  My hair is curly.  It is nearly impossible to find curly toppers.  So, I have had a lot of remarks about changing my hairstyle.  I just say, "Yes, I'm wearing it more straight these days."

Permalink Reply by Sad in chicago on October 5, 2014 at 6:42pm

It does take quite an adjustment.  I have finally gotten better about washing and styling it, but it took a long time.  It is difficult to use the dryer so that the part and other aspects of the shape match your head.  You have to do it backwards!  Anyway, once partially dry I just put it on and do my best to style it while damp.  Like I said, seems to working ok.  The whole thing sucks, but what can you do.

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