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Comment by sallylwess on August 25, 2016 at 12:11am

CurlyK, thanks for sharing you experience with us.  Good for you.  We all salute you.  I also am going out more and more without my hair or even a wrap or hat.  It is freeing.  I'm not sure I could have the confidence to do this if I were working. I bet your scarf looked wonderful.  Now, you get to choose how you wish to present yourself each day.  That is a good place to be.  

Comment by CurlyK on August 24, 2016 at 8:31pm

I 'came out' at work today. Wore a pretty scarf with a pin on it. I had double takes because people aren't used to seeing me with my head covered but overall I had support and compliments and, yes, some questions (are you ok? Is it for your religion?). I just went with it and told people I have an autoimmune disease that causes permanent hair loss. It is what it is! I feel strangely liberated and not so depressed now that I don't have to keep trying to hide it anymore. Thank you for your support on here. Hugs to my FFA sisters!

Comment by cubbieblue on August 22, 2016 at 5:31pm

Sad in Chicago, I would also like the information about the facility you went to. My hair loss is progressing and don't think I'm pulling it off anymore. Time for me to look into this.  Feel free to PM me as well.

Cubbieblue

Comment by Isabel on August 22, 2016 at 5:16pm

@Debs Do you have any idea how Dr Christos' research is progressing? Is the sample collection going as planned? If I recall correctly, he was aiming for 1000 samples.

Comment by Debs on August 22, 2016 at 5:35am

I have a collection of dfferent coloured 'buffs', very easy to wear, lovely and stretchy, you do not have to tie them and a ton of colours available online. They look good for the gym/yoga, I cut mine in half bcause there is so much material in them but they cover up our front hairline and sides perfectly. I do wear a wig to work to be smart but pop my buffs on the rest of the time. I have headbands and scarves too but buffs look casual and are soooo comfy. Xxx

Comment by Minter on August 18, 2016 at 11:24pm

As far as I know, this is the only autoimmune thing I have going on, though i am sure there is probably something or will be something else coming along soon!!! I don't think I ever mentioned it, but my mother also has FFA, though they told her she has a form of Lupus, she has all the hallmarks of FFA.

I don't put my hair back in a pony tail anymore either, I got about 4 inches cut off 2 months ago because of this FFA (though at that time it was undiagnosed) so now I have a bob and don't have to put it back. I was sad to cut it off, but I was worried about losing more hair by pulling it back in a ponytail, plus it just put the big spotlight on my missing hair when it was back :-(

Comment by sallylwess on August 18, 2016 at 11:12pm

Sad in Chicago, thanks for sharing the information about your experience with the interlace system in Chicago.  I would have made the same decision you did for the same reasons.  Personally, I am much more wary of wigs, hairpieces, and systems than I was when I first began this journey as a naive and desperate woman seeking ways to fix my hair problem.  I spent too much money on bad fixes.  Now, I am better informed thanks to my own bad experiences and the wisdom of all of you.  Sad, where are you getting your new pieces?  Do you feel comfortable sharing specifics?  You can private message me.

I no longer can clip in the hair piece I bought that I am wearing in my profile pic due to hair loss on the sides.  I now tape it in.  I have a consult tomorrow because I have lost so much hair that I have to come up with a new plan.  I think it is wise to have two pieces.  One worn often gets tired looking, and I get tired of looking at it.

As for eyebrows - I had mine tattooed in New Orleans when I was there for the CARF conference.  I could not be happier.  They make such a difference.  Do your homework before you do the eyebrows.  That is my only advice.  Otherwise, I wish I'd done them sooner.  

Comment by MnM on August 18, 2016 at 10:08pm

My mom has FFA, hashimotos & RA, which are all autoimmune. If I'm not mistaken I think it's common for people to end up with more than one autoimmune disease. Since all I have now is FFA I unfortunately feel like it's a waiting game to see what else I'll encounter.

Comment by Gittan on August 18, 2016 at 5:01pm

I made my eyebrows two months ago and they are great! I had an appointment with a nurse who make medical tatoo on June 18th and a month later I came back and she painted some extra straws. She used 3D teknique and noone can see that they are tatood, they look guite natural. I really recommend this. I feel so much better after having this fixed.

Comment by Sad in chicago on August 18, 2016 at 4:39pm

MnM -- Yes, please keep me posted on your eyebrow progress.... I understand the first few days are difficult and they look very prominent, so I am anxious to understand the healing timeline and how they ultimately look.  Thanks!

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