Comment by Coleen on March 28, 2009 at 11:31pm

I hear you on the bad day, I had a doctors appointment last week and of course not good news. I have had AA for about 1 year and half now, within about a month I lost all the hair on my body, my eyebrows and lashes were the last to go, I really didn't want my eyebrows to go, I loved my eyebrows. I have tried alot of different things to get my hair to grow, of course nothing has worked. I started out with cream and rogaine, then switched doctors and tried squaric acid on my head, then went to shots, and then back to squaric acid. The shots worked a little, I would get a little hair growth, but always fell out. I am now trying methotrexate, and of course no hair growth, my doctor says if there is no hair growth in a couple of months this is not going to work either. I was really down about that, cuz my head looks like a cue ball, nice and bald and shiny. It really got to me, luckily I was talking to a good friend and she helped me realize that hair does not make a person. I have a alot of good support and they say that having no hair doesnt change me, I am still the loveable, happy and beautiful person I was before. I know they dont know what is like to go around with no hair, I wear hats or bandanas all the time, don't really want a wig. But they love me for who I am not what I look like. It helps to hear that, and it good to know I have people who love me. My doctor wants to try one more thing, but if this medicine doesn't work, I think I am done and whatever happens, happens. So dont sweat it we all have bad days, or weeks for that matter, but life goes on and we will survive, they say if god brings you to it, he will bring you through it. So I hope you start having good days and know that you are not alone in this matter

Comment by Wendy on March 29, 2009 at 9:16pm

Wow glad I am not alone this past week on the downer days. This last half of the week I have the old familiar burning happening and I am like "Will you just get it over with and fall out" so I will know how to do my hair in the morning!!!! It's like a slow torture. The waiting and waiting for it to happen as you know its going too. It's been a bad week. The left side of my head has all these bald spots under very thin hair (which I am sure the rest of the hair on top will be gone soon at the rate of the burning) and the right side of my hair has nice thicker hair. My eyebrows have almost said goodbye to me also.
I so hate this disease and I am hoping that next week it will be better.

Comment by Just Me on March 29, 2009 at 9:45pm

This must be bad alopecia week. I too have had an awful week. Went to the derm, my latest treatment did not work, so I'm done with that. I told the Dr I did'nt want to try anything else, as I have tried everything over the years. Actually, its not really the alopecia itself thats got me upset, rather the current wig that I am wearing. I spent a lot of money on a vacuum wig that I am not very happy with. I recently switched from one vacuum wig company to another. I expected it to be great, only to find that it is ill fitted and the hair is falling from it as fast as my own fell out. I sent my old wig out to be fixed, so I can't send the new one for repairs, as I will have nothing to wear (right now, I cannot afford to buy a third one). You know, most of the time I am fine with my alopecia, but this last week I feel like screaming!!!!!!!!!!!!

Comment by Mary on March 29, 2009 at 10:16pm

Hang in there. I was where you are just about exactly a year ago....I'd lost all my hair, and hoped that my precious (and distinctive) eyebrows would stay. When I began to see the holes in them, I got really depressed. But, within a month of losing all my body hair, I had tattood brows and then later, tattood eyeliner. I've gotten used to the way I look and I've accepted the "new me" and gotten on with life. Check out my video on YouTube, "Living a Bald Life", to see what a difference a year can make. I wish I'd known a year ago when I was so depressed that I would have the peace I do right now. It's a lousy disease. I miss my hair. But, I've moved on and am happy because I refused to let it control me. I don't hide, and I'm not ashamed. Be strong. Take it a day at a time, and focus on the good things. Mary

Comment by Dielle on March 31, 2009 at 1:13am

I have found that it is best to just completely surrender yourself to the bad days and wallow as best you can. A good cry can go a long way, and the more you embrace the bad days the faster they end and the quicker you can have a good day. Even after having had this (no eyebrows or hair) for over five years, I still have those days where I resent everyone with hair and hate those that complain about their hair. I go talk to my mum tell her how I am feeling, cry for as long as I want to and then I go do something that makes me feel amazing (riding my horse). The best possible thing to do is find the one thing that you absolutely love and that makes you feel really good and make sure you do it on your bad days. Sometimes I have an entire bad week where I just cry at night when I go to sleep, but I don't let myself be that sad for that long and I just shake myself out of it. Its okay to have a pity party every once and awhile, but it isn't healthy to always feel that way. It might help if you go see a therapist or something, it really helped me and I am glad that I did it because it made me more open to talking to my mum and dad, since I used to internalize everything and only cry when no one could see me. It is amazing what letting out every bad thought you are having can do for you. It is really like a huge weight is lifted from your shoulders. My therapist was able to pull out all of the thoughts that my parents had tried so hard to help me do, but a professional knows how to get you to talk and somehow they know the right questions to get you going. Now I always go talk to my parents because I learned how unhealthy it was to internalize. It is especially nice because they legally can't tell anyone else, so you know that no matter what it is a safe environment (not that my parents didn't make me feel the same way, I'm just the smile even though you want to cry kind of person). Don't worry we all get those days and still have those days even when we have been bald for a long time.

Comment by Laz on May 16, 2009 at 1:59pm

Hey I know how you feel. Some days it's like ef it, I have this and others it's like DAMN IT I want my hair back!

I've been searching for a long time to find a way to get my hair back and found this site.

http://www.biogetica.com/cure-alopecia.php

I ordered the Alopecia Optimal-Kit as well as the Soundscape CD and I actually have hair growing back and not falling out. I have Universalis and had not one tiny hair on my head (or anywhere) and after getting this kit and CD I have lots of hairs growing now on my head and face.


You might freak when you see the price but I recommend you give it a try because you sound just like me and it's actually working. No I don't work for this company and no it's not a scam. I've been desperate for years looking for a way to get my hair back and this is the only thing that has shown results.

Comment by Mary on May 16, 2009 at 7:01pm

Excuse my skepticism, but if this worked, wouldn't it be reported in scientific journals? Have there been double-blind tests done?

Comment by Laz on May 17, 2009 at 11:07am

Hey Mary,

I can't say this is the cure for everyone but it's working for me. I only just started this a couple of weeks ago and I already have hairs sprouting on my head and face where before I had literally nothing anywhere.

I don't know if it's been reported in scientific journals, I don't read them and I don't know if there have been double-blind tests done.

All I know is what it's doing for me. We'll see how things are in a few months.

Comment by Mary on May 17, 2009 at 11:13am

I'm very heppy it's working for you! I have an appointment with my dermatologist tomorrow, and I'm taking the ingredient list with me to ask him about it. He would be able to check it in professional journals if it's been written up.

A problem with "neutraceuticals", as they're called, is that their production is not monitored or regulated by the FDA, so there's no way to know what's in them, or how pure the manufacturing process is. Sometimes they are adulterated with harmful substances, as we've seen with some products from China.

Keep us posted, and good luck!

Mary

Comment by Laz on May 17, 2009 at 12:05pm

Check out these videos.

1. http://www.youtube.com/watch?v=3hzakNlCjoI

2. http://www.youtube.com/watch?v=yvtTMRpkxRw

3. http://www.youtube.com/watch?v=DWsZv35SfpY

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