Replies to This Discussion

Permalink Reply by maplel on August 27, 2014 at 11:58am

I am interested in what your wig let actually is. I am not sure what you could use except a head band perhaps, that you can just pull on. My hair is slowly receding and I will have to make some decisions soon. Very weird disease indeed!

Permalink Reply by Sad in chicago on September 2, 2014 at 4:26pm

Mine is a "piece" that clips in to the hair I already have.  It covers my crown, bangs and a touch on the sides.  The place I purchased it, Jerome Krause in Skokie, Illinois, dyed it to match my own hair and styled and cut it, so most days it actually looks pretty natural.  it is real (they said) European hair (whatever that means!).  There are five clips, two in the very front, two on the sides towards the back and one in the very back.  it blends with my hair nicely.  Some days I feel it looks too heavy.  I wash and style and dry myself most times, about every three weeks.  When I have an occasion or need tweaking or want the color refreshed I go back into the place I purchased it.

I do not wear it out walking, swimming, or for sports.  It has a lace inset, but I feel I might ruin it.  I am looking for something to wear during exercise instead.  the headbands don't work for me, the rest of my hair is too thin and short.

Permalink Reply by MJ on August 27, 2014 at 1:25pm

I am not at the point of needing anything on a daily basis, but am looking for options for camping, swimming, that sort of thing. I just ordered by first Buff to try. All the women on the their website where they show how to wear them have long hair. I have medium layered hair and headbands are ususlly difficult as all the layered hair sticks up everywhere. Bur I thought I would try. I have never been a baseball cap wearer, but now want to find more feminine cao option as well. This is such a weird disease for sure! Since my "version" has been sort of slow and silent, i have been wondering if all the drugs are really doing anything at all. But afraid to stop. Will see what happens at my next appt in October. Just wish I knew when it is going to reach the burnout point we hear about...if that even exists as so many on this group seem to have been dealing with it for years.
MJ

Permalink Reply by Sad in chicago on August 28, 2014 at 2:52pm

What is a buff?  My version is mostly at front, very receding front hairline with fizzy hair left over that does nothing, and back from my temples.  My forehead is all white and like a big dome!  That is why I got the wiglet.  After a couple of years my own hair did not cover the front.  

Permalink Reply by KarenGinny - Iowa, US on August 27, 2014 at 1:44pm

I am in the same situation  with a lot of hair loss in the front and temples. It's mostly bald all along the front. I have not used a wig and try to make do with wearing my hair with long bangs pulled forward and growing my hair out a little longer,but it has layers at the sides. That with a lot of hairspray is okay for indoors, but for outdoors the wind makes a mess out of it so I started wearing baseball style caps. I found some cute more feminine styles the "Life is good" brand at my local sporting goods store. But sometimes that is not appropriate and the hat just pushes my hair down flat so when I take it off it looks funny. I started wearing headbands with my bangs pulled under and forward and it looks okay like that and keeps the wind from blowing it. Or sometimes I will wear the headband against my forehead with the bangs going over it and this is really more comfortable since I'm not constantly checking to see if my bangs are arranged right with the band over them. There are lots of cute headbands in many colors and designs - the soft stretchy type. I wear them outside or just whenever I don't know what I'm going to be doing- in and out, since I have two active boys and we go to soccer and Buddy Baseball and I need something to keep my hair from flying all over. I've also worn them in the pool and on vacation to the beach. sometimes I pull the back into a ponytail too. The headbands pretty much cover my problem areas.  I am seeing a dermatologist and taking methotrexate right now, but no other drugs or rogaine. I've tried to come to terms with my hairloss and not stress out over it. But it still bothers me if my hair looks bad and feel like people are wondering about it but don't ask.

Permalink Reply by sallylwess on August 27, 2014 at 6:24pm

Except for the fact that I don't have a wiglet, I think you and I are living at the same place right now.  I have decided I must get a wiglet because in just the last month I have had even more loss.  I have a big hole in the center of my head (Ok, maybe it is a large part) that goes from the hairline to the crown of my head.  Right in front at the hairline, I only a very few hairs.  I've tried to style my short, curly, gray hair that I now just looking wild and crazy.  My curls have become frizz in front.  It doesn't matter what style product I have on them.  I am not really even able to make an acceptable bang out of the hair that is left.  I have not gotten a wiglet because I haven't found one (on line) in my color or curly.  I don't want to totally change the look I've had for the years I had hair.  Right now, I just hate to even get dressed up and go out to anything special.  I feel unkept and like I have a bizarre looking hair style.  Let's face it.  This look is not the norm.  

I also wonder how to use a wiglet when exercising, working outside, etc.  A hat would be fine.  In fact, I usually wear either a hat or a visor when out walking, but it would be hard to exercise in a hat.  I think a headband would look a bit ridiculous on a nearly 70 year old lady, but I may get me one out of desperation.  

This problem has caused me to feel like I've lost my femininity, I understand how you feel about having your husband see you with no hair.  He says he will buy me a wig if I find one, but honestly, I don't want to wear a wig full-time.  I still have a good amount of curly hair in the back of my head.  

I don't take any medications except to treat with clebetosol, and I do that mainly for the itching and so I don't have a red inflamed scalp on display for the world.  You are so right.  This is a weird disease.  It is so hard to understand.  It also is not understood by others.  

There is comfort in reading the stories of others.  I learn from you all.  

Permalink Reply by Celia on August 28, 2014 at 2:39am

Hi Karen and Sally - not heard from you in a long time.  Yes this weird disease is truly awful.  I am not on any meds now and feel better in myself.  I see my hairdresser next week - how I used to love those days ! Now it's an ordeal ! Celia

Permalink Reply by Debs on August 28, 2014 at 6:20am

I wear a buff for swimming/gym/yoga, sometimes I wear a bandana in a pretty colour to match my top in gym. I wear a thick headband too. In winter I wear a beanie hat, in summer a silk scarf. For work I always wear a wig to look smart. With FFA our pattern of hair loss means we will always be able to wear headbands etc that just cover the front and crown, this is not a smart look but it is ok for casual occasions so we do not have to wear wigs/hair pieces all the time. I went on holiday a few weeks ago and wore a headband and a buff, I did not even bother taking a wig. It was perfectly ok.

Permalink Reply by Sad in chicago on September 2, 2014 at 4:27pm

What is a buff?

Permalink Reply by MJ on September 2, 2014 at 4:33pm

It is a sport head band type of thing. You can check out the website. Buff is the brand. I ordered the half Buff but is doesnt work for me. It looks adorable on my 11 year old, but she has long straight hair. I think I will try thr fukl Buff. I have never been a head band wearer.

Permalink Reply by Alice on August 28, 2014 at 8:27am

Sallylwess, have you tried Rogaine for the thinning on top? I avoided using it for a long time but am glad I finally took the plunge. It has thickened up all the hair on the top of my head, right up to the receding hairline. In fact, my scalp looks different because of all the new hair follicles with that FFA look. The news hairs are grayer and curlier than the rest but the product info says that is normal and may change. But I'll take what I can get. I started out using the women's formula twice a day, then switched to the men's strength once a day. I prefer the liquid but it comes in a foam. 

Permalink Reply by sallylwess on August 28, 2014 at 8:31am

Thanks Alice. I tried Rogaine for a month. I don't think I gave it enough time. I will try it again.

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