Replies to This Discussion

Permalink Reply by GracieT on September 15, 2016 at 2:24pm

Minter, and those considering toppers and wigs, in my many many internet searches about hair loss I came across a blog/website called Corner of Hope and Mane. It is written by a young woman named Lauren who has Androgenic Alopecia and she wears toppers. On her blog she gives advice on different toppers and wigs, hair cover-ups (think hair fibers or powders), and works with wig companies to get discounts for her readers. She also shows pictures of the "helper hair", as she likes to call it, and gives advise on how to take care of them and style them. If you sign up for her email updates, she says in the email that you can email her with questions or concerns. I actually did email her and she replied the same day! She was the first person I vented to about this condition and she was very understanding and kind. And I must say, reading her blog and seeing how comfortable she is with her condition, was very refreshing.

She also has a forum for women that wear helper hair, or are thinking about it, however it does cost about $25 a month to be a part of it. I did join it for two months, at the time she offered a $1 promo to join, just to see what it was about. It is mostly women that wear wigs and toppers that have come together, much like this forum, to discuss their conditions and get advise. Some show pictures of new wigs/toppers and ask for advise and opinions. I know the price sounds steep, but I think this has become her job - she works with the companies to get deals, runs the private forum, etc. And, I think if I were ready to wear hair, that the price would be worth it...even if I only did it for a few months. Anyway, here is her website: http://cornerofhopeandmane.com/ . Like I said, she has AA, not FFA, so she tends to gear her posts towards that, however she knows all about wigs and can give advise on what would work with frontal hair loss.

Permalink Reply by Minter on September 15, 2016 at 4:19pm

GracieT, what a great blog, I literally spent about 5 minutes looking it over and just from that I can see it will be full of info & signed up to be on the mailing list, thank you so much for sharing this :-) 

Bu,  thank you, actually I do feel a lot better after my little vent, it does help to get it off your chest to people that know what it is you are talking about!  6 months is a good time frame for the meds, I don't know, I guess I am alright with the clobesterol and the steroid shots I have gotten for the last two months, its the side effects from plaquenil that make me a little leery to start taking it after my horrible time with the minocyclene.  

As far as my scarves, I've always had a thing for scarves and have picked them up from here or there, usually they just hang on the back of my door and don't wear them! I just never realized that possibly someday in my future they would have to be used on a daily basis :-/ lately I have been getting very pretty ones from a really great thrift shop near me, lovely and flowing with vintage patterns-  for like 50 cents each! I've gotten the big square scarves and the long narrow rectangle shaped scarves, that can be worn tied under my hair and as a headband :-) I really have to spend an afternoon playing dress up with my scarves and get this look up and off the ground!

Permalink Reply by Minter on September 15, 2016 at 7:11pm

Thanks Bu lots of good info and tips:-)  I have taken another look at http://cornerofhopeandmane.com/ , have any of you ever tried the 'boostnblend' powder? It looks really good, I think I will order it from amazon, it is cheaper then a topper or a wig, so I will give it a try!

Permalink Reply by GracieT on September 16, 2016 at 8:13am

Minter, I'm glad you like her blog. Reading it actually makes me feel less stressed out about this condition. She is just so positive and, well, has FUN with her options...just crazy. ;) Anyway, it shows me there are options out there, just need to get the courage to try them out. Let us know if you try the Boostnblend. I've been looking at it too, just haven't pulled the trigger on it yet...back to that courage thing, lol.

Permalink Reply by Sad in chicago on September 16, 2016 at 5:12pm

Forget the meds, relax (ha!) and get yourself a topper, or clip in, or whatever you want to call it.  Here is what I did starting two years ago.  Got a Follea, human hair, expensive, but worth it, topper for everyday.  You can wash, style, set it with rollers for events, or be messy and normal for day to day.  Then I got an inexpensive synthetic for exercise, walking, summer, pool (not really swimming, just dunking up to neck and playing a bit with my grandchildren when they visit) and often when walking my dog, baseball hats and no topper, just the hat.  Now, the follea is expensive.  The shop should style for you, adjust with clips for your situation and teach you how to maintain.  I go back and get it dyed as it fades just like real hair -- because it is!  The synthetic is easy to take care of.  But if you take very good care of the follea it can last a long time.  I just got a new one because my loss increased and I needed something with a bigger cap (lace insert on which clips and tape attached). and now I am as happy as I can be (which is pretty pathetic as I am sooooooooooo unhappy about this whole situation)  without dying inside every time I look at myself.  I would rather spend $ then put wierd drugs in my body.  My derm (a woman) has assured me there is no cure.  Start now before people notice so it will feel as seamless as possible.  Go to a reputable shop.  

Permalink Reply by Minter on September 17, 2016 at 9:00am

GracieT & sad in chicago, I LOVE both your attitudes!

GracieT, you hit the nail on the head, that is exactly what I thought when I was reading her blog, Corner of Hair and Mane- I felt like all these options just opened up to me about my stupid hair!  Speaking of, the Boostnblend is to arrive on Monday evening, fingers crossed it is everything it says it will be and I will post my 'review" for sure, thank you so much again for sharing her blog, if it wasn't for you I never would have known about it! :-D

sad in chicago, yes I am that close to stopping the meds and putting the $$$$ for doctor's visits and prescriptions towards something better!  I am so much with you, the thoughts of all these steroids etc... going into my body, ugh.  But then I get close to stopping and think, but what if it is working what if it gets worse if I stop?  Blehhhh, It is a not fun back and forth thing going on at the moment for me with these drugs.   The thing is though, my mother has this also and she is on all the same meds and more and her hair keeps thinning and thinning, it is very bad now- so I am going with the assumption that my hair will get just as thin with or without the drugs.  

Thanks for the awesome advice about the accessory hair too, it sucks having this, but you are handling it very well and I hear you about dying a little bit inside when you look in the mirror, if the light is just right my hair looks the same as it always has, but when the light is wrong, omg, ohhhhh nooooooooooo :-(