Comment

Comment by Lori M on November 22, 2009 at 2:57pm

Jess your daughter is a very brave little girl going through this.... I am so impressed with the kids who are dealing with this.... :+) Thanks for the kind thoughts....

Comment by Jess (Jordyn's Mom) on November 22, 2009 at 12:21pm

Lori I feel fo ryou..I dont have alopecia but my 8 yr old daughter does...I wouldnt allow the doctors to inject my daughters head..not when there was a very small chance that they would work..hang in there sweetie!! We are all here for you!!

Comment by Beth S on November 20, 2009 at 10:02am

Hi Lori - i just read the sequence of notes and your original note. I know how you feel though. The past 8 months I feel like I have been living in a cave, dealing with the emotions and and my physical appearance many times each day yet trying to shield my girls and pretend to the world that nothing is going on. At times it has been a very dark and lonely place. My sisters and mom have been great as well as a few close friends that I have shared this with. Even though I still have bad days and moments I am now able to have some days and moments that I can joke with people that maybe I will try all different kinds of color and styles and try to have fun with it. It helps my girls to deal with it when I joke about it or make fun of it. It lets them see it as less of a big deal. They range in age from 8 - 13 so I have to deal with each of of the a little differently. But, they are doing great and they help me get through each day and most days with a smile on my face. This disease sucks, no other word to clearly describe it. All I want is to wake up and through my hair up in a ponytail and move on. Those were the days. If you need to vent let me know. I feel like I am slowly emerging from my cave, a little each day, trying to get out with friends and back to some sort of normalcy. Good luck and keep me posted on how you are doing.

Beth

Comment by JeffreySF on November 19, 2009 at 6:44pm

Hang in there Lori!
We're all on the same team!

Jeffrey

Comment by Lori M on November 19, 2009 at 5:29pm

Thanks gang for nice thoughts. All I can think of now is how much is plastic surgery!!!!! Gotta start buying lottery tickets so I can create a flawless face! Just kidding. Hanging in there today but still not impressed. I will live another day though.....

Comment by Julia McDowell on November 19, 2009 at 6:47am

Hey chick,
I know exactly how you feel. But honestly, I felt much, much better once I bit the bullet and shaved my head. I'm not just saying that. Of course I had crappy days after that - it's been ten long years after all! BUT in a way it's better to have nothing than a little bit of hair. I kept looking at what I had left and getting angry, wistful, resentful and longing for it to grow back to the way it used to be - I had the thickest hair imaginable before it decided to fall out. With nothing to look at and long for, somehow it was easier. Do you have my phone number? We should get together for that coffee and have a chat.....


When I was going through the phase you are at now, I was so depressed and saw myself as a hideous monster. Now I can accept my baldness, and I'm learning more about what REALLY matters each day. Hair is a huge thing in our society, but it's what's inside a person that counts. If your best friend was in your situation, and was feeling like a monster - how would you comfort her? Would you secretly agree that she was indeed hideous? Of course you wouldn't! You would tell her that she is beautiful with or without hair, that she is more than her hair, and you love her just as much as you ever have. That's how you have to start talking to yourself. You are your own best friend.

I don't want to sound 'preachy' but I really can sympathise, and hope you have a better day today.

Hang in there - it really WILL get better!

Hugs, Julia x

Comment by Mark S. Hansen on November 18, 2009 at 8:29pm

Lori. One last thing. This condition never comes or is easy to live with no matter who you are. However, I think once you find someone that loves you or accepts you, (as you have) weather you have the condition when you meet someone or if you get it after you are married, you have in effect beaten this condition back in that it is no longer an issue to the ones who mean the most to you, those who love you for who you are. It's hard to admit this even here, but I myself have never had a relationship or girlfriend in my life. Either I have not did enough asking, and it is quite clear why, and or they have not been interested, and I think that my be clear why as well. Well, Good night.
Mark.

Comment by Lori M on November 18, 2009 at 8:23pm

Ohhhhh and I don't want people to think I think Alopecians look like they have no expression. It was my dermatoligist that said it. I personally think that people convey expression through their eyes. Have you ever noticed people whose eyes sparkle? My daughter has happy eyes.........

Comment by Mark S. Hansen on November 18, 2009 at 8:22pm

There are two types of ignorance, the ingnorance of simply not understanding such as human curosity. And then there is the ignorance that I, and Lori M mentioned about, where when someone does not understand why someone looks the way they do, so they simply associate dergotory terms or insults to them. I have experience this in many forms throughout my life, from having the last patches of hair on my head ripped out of my head when I was in Junior high school, to hearing poeple in college (women) talking behind my back saying "boy he is so wierd." simply because of the way I looked, to even the slyest type of anti-social
behavor where people like otherwise smiling co-workers do not even socialize with you because of the way one looks with this condition. I may sound too perinoid to some. And yes, I feel that I may have let this condition hold me back much more in life than I should have (still single at 53) But we are all a product of our experiences. Thanks
Mark.

Comment by Lori M on November 18, 2009 at 8:21pm

Ohhhhhhh Mark wow....like I was dead. That is horrible and I am so sorry. People can be so incredibly insensitive. I am sorry about you losing your job and the stress of trying to find a new one with that added stress about your cap. The only good thing I can say to you is that there are sooooooooo many guys that shave their head now that you honestly don't need the cap. I understand that it is what you are used to.....

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