Well, I haven't been on here for the longest time, but I find myself needing more support right now since I am very close to losing all of my hair. For a while, I had been experiencing so much regrowth that I was becoming very hopeful that this "worst case" of alopecia was over. The top of my head started growing in pretty thick even though the bottom half of my head was still pretty much bald. However, I was optimistic that I might actually have my own hair for my wedding next September. Granted, I still have a year, but I don't know what to expect anymore. I guess part of my problem is that I didn't want to permanently accept my alopecia as a lifetime condition, and I still don't. I just keep thinking it will go away like it always did when I only had a little bald spot or two.

I did just buy a new wig (my second). It's my first for human hair, which I really like since it's thick like my hair used to be. Plus it's soft and I can style it if I want to. I just need to get used to it again. I know everyone is looking at me now and probably thinking its a wig. I don't know why this bothers me so much, but I've been so private with this disease that I feel like I'm fully exposing myself now with my "new" look.

Its the people who I think would say something, don't - like my future MIL. She doesn't even acknowledge my new wig. I don't expect much from her anymore, so I don't really get upset, but it just reaffirms how much of a bitch she is.

Thank God for my fiancée. He's been my rock through this whole thing. I don't know what I would do without him. He has been so wonderful.

I'm at the point where I should probably just shave off the little bit of my hair that is left, but I am just not there yet.

Views: 9

Comment by Sophie M on July 6, 2011 at 8:21pm
Hi Nikki,
I can so relate to your story. I have had AA off and on since age 15. Never worried about it, always got the needles and had immediate regrowth. I have an older sister with AU and I always thought there was no way both of us could end up with such a sever case. Now at the age of 48, I have recently been diagnosed with AU and the worse for me was going to work with a wig on. I started having panic attacks and decided to take two weeks sick leave. I went back to work for a week and then had a weeks holdiays in Calgary. I am now back to work full time and doing pretty good. I think the initial shock of the wig is wearing off. I still have a few strands of scragly ugly hair that I have considered shaving but I also like to wear a hat on weekends and feel a little bit of hair peeking out is better then none. That said I am so sick of the hair all over my bathroom and floors each day. I too am not there yet. Please keep me posted if you do it. On the plane to Calgary I watched the movie soul surfer, the true story of Bethenny Hamilton who lost her arm to a shark attack while surfing. Ok, now while I realize that losing ones arm and losing ones hair are very differnt life traumas, I did find it so inspiring. Sorry for running on so long but it was great venting.
Comment by Tallgirl on July 7, 2011 at 12:45pm
I got a digital camera for Christmas, that came with a computer program to edit and crop my photos. I take advantage of that, plus the photo-editing machine at CVS Pharmacy. I have also been known to "retouch" photos of any spots showing with markers, back before all this digital stuff was possible. Go get an airbrush done of any photos you know will be displayed, frame them in the same frames, and secretly do a swap next time you visit anyone posting photos you don't like. The cost of the frame is a small one for peace of mind.
Comment by lynne on July 7, 2011 at 3:36pm
Hello Nikki

i had the same problem, i had almost all my hair bak apart from 2 spots and it was about 2inches long all over, was so chuffed and also thought it would be over soon, but it started to fall out again about a month ago and im so pissed off. I am waiting on a human hair wig hopefully are they any good?, I hope ur doing ok and least u have a very supportive fiancee. x
Comment by Devin on July 7, 2011 at 5:40pm
Hi Nikki,
I was just like you with the denial part because I would take PUVA treatment and have 100% regrowth and forget all about this alopecia thing and now it is real hard to find the drug used with the treatment and I have had a hard time with as you said “permanently accept my alopecia as a lifetime condition” but I have to tell you shaving my head last year helped because you no longer have that bunch of hairs falling out everywhere. I think it’s just psychological, but it helps and you have the support of your fiancée so you will do well.

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