Comment by Melissa Harris on November 3, 2009 at 12:37pm

Thanks Aimee, yeah I have just read on here that most people who have the AA form, eventually shave their heads because they just get tired of it and they continue to shave so they can just wear their wigs. I'm just wondering if that's my fate. I still have hair and can walk around without any wig still, but the shedding is not slowing down and it is just driving me crazy. So I think I only have two options, shave or just deal with the shedding for the rest of my life (since AA never goes away from what I have read and heard) until it looks bad enough that I have to shave it. Pretty dim options. So I think I'm just tired of this and don't know what I should do from here. I'm going to get more treatment next week, but I'm wondering why am I doing this?? It's just gonna fall out again and probably worse every time, like it has been, so what the heck an I doing??!! Augh!! Just sick and tired of it!!

Comment by Natalie on November 3, 2009 at 2:57pm

Hi Melissa,

I also received steroid shots as well as took oral steroids (prendisone), but the hair would always fall out again, and usually worse. I don't mean to be giving you a defeat-ist outlook, but in my own experience (which sounds similar to yours), it only got worse, never better. I agree with Aimee that shaving my head was the absolute most liberating thing I have done in my life. I wasn't letting alopecia control my life anymore - I took control back! There are tons of good wigs out there (my first one was a full lace Renee of Paris wig, and I now have a Freedom wig), and although it probably scares the daylights out of you to think of wearing a wig, sometimes it is the best choice. For me, it helped me get on with my life and start to really live again. It is definitely a personal decision, and you will know what to do when the time comes for you to make that decision. Please feel free to ask me any questions, I would love to help! Keep smiling - you are beautiful - hair or no hair - and definitely a stronger person because of this :)

Comment by Jennifer Krahn on November 3, 2009 at 3:46pm

Hey Melissa,
I remember exactly what you felt. And, someone saying shave your head always gave me a nauxious feeling, nevermind the talk of wigs...it all was such a maddening spiral of fear, depression, anxiety...just awful. I totally empathize with you. What I think helps is knowing that what you are feeling is normal, as much as you don't want to have these feelings. The good part about it, is that you need to experience what you are feeling in order to get to the other side. This disorder is BS...it sucks but you will get through it! I pray for your hair to return, but if it doesn't, your life gets slightly modified...but it is still a good life. All the best and hang in there.

Comment by Melissa Harris on November 3, 2009 at 3:54pm

Thanks Jenn, your post made me cry! I know that you are right! Wishing you all the best too!! Like you, I have kids and all I can think about is that they love me no matter what and that's really all that matters. My husband is being supportive as well and that's been great. I was always looked at as having nice hair and now this is a different reality for me. I just want to be the person that I was again and be happy and not think about my stupid hair! Please KIT and let me know how your FW experience goes! Well wishes! Melissa

Comment by Mary on November 3, 2009 at 4:17pm

Hi Melissa - as you know from my videos and photos, I chose the shave it off route, and like other people, it was liberating and a huge relief.

I was thinking of posting something today, and this is as good a place as any to put it. I just spent a weekend with a long-time friend I hadn't seen in 10 years. We looked at photos of us from 10, 15 and 20 years ago, when I had beautiful full hair and AA hadn't made any appearance in my life. I got extremely down at first and was feeling very sorry for myself. I thought: "What happened to that woman?" "Why can't I look the way I did before?"

Then we got to some pictures from 1990 of me with another friend who died a year and a half ago from cancer. I looked at those photos of my deceased friend, sitting there smiling and having a good time, next to me with my full head of hair, next to her husband who's now a widower, and instantly had a major change in attitude.

I'm still here. I'm healthy. I'm doing all the things I love.

Yes, this disease sucks big time. I hate it. But, in the (almost) two years I've been bald, I've come to realize that my life isn't over and that there's so much I'm going to experience.

Hang in there.
Mary

Comment by Melissa Harris on November 3, 2009 at 4:56pm

WOW Thanks Mary! You have been such an inspiration to me! Everything you state on here makes total sense! I'm glad that there are people like you on here! I now look at pictures from even 2 years ago thinking, wow that is me, not this person that I see in the mirror now. My kids have helped me not loose my mind because I need to carry on for them too and that keeps me really busy as they are very active. You are right, we are not dying and we are able to do everything that everyone else with hair can do! Life is not over for sure! My hair was so much part of my identity and now I'm just having to adjust to reality that I may not have hair. It is hard, but it wont kill me that's for sure!! Thanks for all the wonderful feedback! I really appreciate everyone on this site!! Much Love to all of you!! :)) Melissa

Comment by Melissa Harris on November 3, 2009 at 5:02pm

BTY, I have been dealing with the shedding by ignoring it as much as possible lately and guess what? It does seem like it slowed down a tiny bit! LOL!!! This thing is so silly! Sometimes you just have to laugh at yourself!!

Comment by Mary on November 3, 2009 at 7:23pm

Yes, Aimee...some people do look at stopping treatments as giving up, and I respect their choice to pursue a cure. I'm like you, though - once I just said "this is me, this is what it is...", I felt much better. I decided I couldn't control my hair loss, and as a result, it stopped controlling me! ( :-)

Comment by Melissa Harris on November 3, 2009 at 9:46pm

Well said ladies!! Thanks for all the feedback!! This was an awesome thread!!!! :)))

Comment by Jeff W on November 4, 2009 at 12:16am

Melissa,
I think it's great that you're taking steps to understand and accept your AA. Please don't give up hope that it can turn around. AA does NOT necessarily go on forever and recovery is very possible! Don't let this get you down, as there is no reason to let this diminish your joy of life.
Best Wishes!
Jeff

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