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Comment by DW on August 18, 2016 at 4:22pm

Geminijeanne, interestingly I also had shingles and so did my friend who has FFA. I wonder if there is a connection.

Comment by MnM on August 18, 2016 at 3:51pm

I'm with you ammie. I want my ponytail back sooo bad!! I miss it mostly in the summer. I'm almost happy that winter is coming, less humidity and less being out in the heat, wind, etc.

Sad in Chicago, I just got my eyebrows tattooed on Saturday. They are still healing, but if I'm happy with the end results I will give you the name of who did them. She's in the Chicagoland area.

Comment by ammie on August 18, 2016 at 3:40pm

I miss wearing my hair up so much! Especially in the summer. I can get away with using hair powder to fill in my sparse hair line and I am able to pull down some hairs to frame my face but I wish I could just pull it back with all of hair out of my face like I used to. I guess I should be glad that I can still use some of my hair to cover up. But it is getting harder. Sigh. I just wanted to vent. 

Comment by Sad in chicago on August 18, 2016 at 2:59pm

Hello all,

I have not written in a while.  First to the questions about the intralace piece I was considering through World Hair Inst., I did decide not to proceed with that.  One, VERY expensive, two, I could not get to that location easily, and three, I couldn't find anyone else with one (although they did give two other ladies my number who called me as a reference, both of whom were happy), but I could not meet or see any of the results and so I was nervous.  However, the place where I got my wonderful clip in that I wear everyday is making up a new piece for me that has more hair to cover our lack of, specifically along the hair line and in front of the ears.  It is being made now, custom, and I am excited for when it comes.  I will keep you posted, and interesting it was about $1000 less than the first one I priced and thought about.  Also I found another venue in Arlington Heights Illinois where they also are very good with hairpieces and wigs and are doing another custom piece for me as well.  So, all in all, I am getting TWO pieces (to wear at different times) for the price of the one.  I am also looking into tatooing my eyebrows.  It scares me, but hopefully it will be fine, as I am so tired of everyday trying to look "normal" even to myself, and when at home, besides work place and social, etc.  I have been trying to  enjoy the summer, but dealing with the hair loss while perspiring, walking, hanging at the pool, has, as always, been a total drag.  And planning vacation now to Mexico, oh my!  Hope my new pieces work out.  

To newly diagnosed sufferers:  save your money and time and do not try to reverse or grow any more hair....won't work.  Instead find good places to help you camouflage your loss if that is what you want to do.  Yes, expensive, yes, timely, but worth it.  I started out as KarenGinny with bangs, caps, etc., but eventually, found that the clip in pieces are the way to go for me. 

Comment by KarenGinny - Iowa, US on August 18, 2016 at 1:17pm

Hi to everyone. I cope with my ffa/llp hairloss mostly by wearing my hair in bangs, although they are thin and probably don't hide as much as I'd like. I also wear headbands over my bare spots and drape my bangs over it, or pull it back in a ponytail. I have quite a collection of stretchy type headbands. I also keep a baseball cap handy just for running in and out of the store or when I watch my son play soccer, or out for a walk. I've never really tried scarves, seems like too much material for me.  I've not tried any hair pieces yet, Don't know if I can afford the expense and upkeep of that. I am currently taking methotrexate to help keep inflammation on my scalp down. I also take meds for blood pressure, and thyroid. I hate taking all this stuff but i have to I guess.   Hope you all have a lovely weekend!

Comment by GEMINIJEANNE on August 18, 2016 at 12:00pm

Hi to all. I am north of Toronto , Canada - wanted to point that out for some other fellow canadians here. We do need to get this site out there for other sufferers of FFA or alopecia . It's vitally important that we make it more public because I'm certain there are many cases that are being misdiagnosed or just fluffed off as post menopausal conditions. My own doctor thought at first it was all a post menopausal problem. Interestingly enough , stress is a very important factor in managing this disease. I am a very anxious person and have been treated for many years for anxiety. Does this play a factor ? I wonder about that and many other things -  are there medications in the past that might have triggered this? I did have shingles in 2009 which I am certain contributed to many of my ongoing issues. I would love to see a study done to try to find out the common factors amongst sufferers of FFA. 

Anyhow , for all of you who are new to this site - it is wonderful and helpful and inspiring so keep in touch . I am learning to deal ( most days ) with this disease - it always could be worse I say - chins up folks !!

Comment by DeniseC on August 18, 2016 at 9:20am

I think it is really important to keep on posting on this site, as we have no idea how many newly diagnosed people find it, and is so very important for them to realise they are not alone (sounds melodramatic, but it's true).

Sometimes I think 'here I go again' when I post (as mostly they tend to be long - I am a writer!) (not professional, I hasten to add), but then if when I/we post helps even one person, it is worth it.

x

Comment by Minter on August 18, 2016 at 9:12am

CurlyK, I am glad to hear you have told your boss & his wife, I found that once I told one person, it was easier and easier to talk about it.

Also, Aurghhhhhh!!! Scarves!! I do wear a bandana under my helmet when I ride my bicycle, but that is as far as I've gone to wearing them in public.  FFA or not, I've always wanted to be able to be a chic scarf wearing lady, sigh :-(  maybe I will try one of those pre-tied ones too!

Denice you've hit the nail on the head about this FFA.

Comment by DeniseC on August 18, 2016 at 7:40am

Great- really positive and excellent that you have found something that works for you.

Scarves for me are DREADFUL. I look like an old peasant!! On other people they look great - my daughter who has perfect hair, wears one sometimes and she looks stylish and sophisticated, not in any way silly. Sadly, her mother does not look the same!!

Comment by CurlyK on August 18, 2016 at 7:27am

Interesting that we are on a head scarf discussion! I just ordered my first two pre tied scarves and they are very pretty. I am too intimidated to tie a scarf on my own so I found some really nice ones that are already pre tied for you. I wore my first one out on Sunday and got more compliments on it on how chic it looks! Go figure! I don't know if we are allowed to share websites on this forum but you can Google head scarves for Alopecia and find these. There are also some really cute hats on these sites as well. I have now come out of the closet to my boss and his wife and have received their support and encouragement to do whatever I feel is best for me. I have a few more scars coming in the mail and will probably start wearing them to work next week. I'm at the point where I don't mind talking about it because I feel I now have peace about my situation. There is something kind of freeing knowing that there is nothing I can do to fix this. It really helps with acceptance. For those of you with regular scarves, there are a ton of videos on YouTube that show a lot of ways you can tie your scarves. Hope this helps. Happy Thursday everyone! I just might be brave enough to post a picture of me and one of my new scarves very soon!

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