First time alopecia blogger... Just want to share my story

My father and I both were diagnosed with alopecia when I was 13 years old. He found a small spot on his face and chalked it up to shaving too close. Then he got another on his face and one on his head and it just spread from there. Within 3 months, I found a small bald patch on the back of my head. My mother somehow managed to get us both to Dr. Vera Price in San Francisco where both my dad and I underwent our first steroid injection treatment. My dad got injections in his eyebrows whereas I was only affected on my head at that point. It was hard to find a dermatologist in Las Vegas, which is an hour away from Pahrump where we live, who would administer the 10% steroid solution as opposed to 5%. We did find a doctor that would do it. My dad didn't go through with it as long as I did because he wasn't as concerned with having hair as much as I was. I would get the injections once every month until my bald spots were completely filled in with baby hair. Every winter, I would get another spot and repeat the process all over again. I became a human pin cushion. I remember having to tell the nurse who was poking me that the needle was dull several times and some of them would actually argue with me as I wiped the dripping blood from my face that had trickled from my head. I could feel when the needle was getting dull not only because it became more painfull but also because I could feel it start to pop through my scalp, rather than slide in easily when it was sharp. I did this all through high school without allowing anyone but my family and closest friends to know what I was going through. I had always had such beautiful long blonde hair. I was captain of my varsity cheer squad my sophomore year and had a lot of friends. At the same time, I didn't want to subject myself to being made fun of at school. It was stressful enough to go through it all without being bullied. Luckily I hid it well but my senior year I was forced to quit playing softball and I quit cheer leading as well because I could no longer hide my bald spots with my hair up. I graduated high school with honors and moved to Las Vegas. The dermatologist had started only giving me 5% and the alopecia was spreading faster than the medication could catch up. I was basically going once a month to get stabbed repeatedly in my head for nothing but stress. It finally got to the point where I needed to buy a wig. I remember bawling my eyes out while my boyfriend at the time buzzed the remaining blonde locks from my head. At first I didn't know what wigs to buy at all. I look back at pictures and laugh because I look so funny. I'm 28 now, happily married and have a beautiful baby girl! It's taken me so many years to finally know what to look for when I buy a wig and it's still so darn hard! Its hard to find lace front wigs at an affordable price that have enough lace so the hair tracks are undetectable. They tangle up and eventually end up looking and feeling like my old barbie's hair. I probably buy a new wig about every 3 months. I like the full lace ones because I can put my hair up but the tape unsticks and rips out the hair if you're not extremely careful. I have worn some that are synthetic and have front and back lace. I think I like synthetic better because I don't have to style it everyday. I style it once and it stays put for about a week even if I wash it :) I like the lace front because it looks more natural and I can tape it to my head so it's not sliding around all the time. It's so nice to finally go out on a windy day and not have to hold my hair on! I've gotten pretty good over the years at styling and maintaining my wigs and making them look natural. I wanted to share my story because I know how hard it is to deal with. I used to be embarrassed by it and never told anyone. Now, I talk about it freely so more people are less ignorant. I don't like it when people feel sorry for me because there are so many people out there to feel sorry for that have situations so much harder to deal with than mine. I am very glad that I got alopecia rather than my mother or sister because I don't think they would be able to look at things the way my dad and I do. My husband thinks I'm beautiful regardless and I've come to the conclusion that there's nothing I can do about it right now but embrace it and live my life. I dont have to dye my hair, I just buy the color I want. My husband gets a made-over wife every 3 months. I was a cocktail waitress in Las Vegas for a couple years and I had fun going to work with different hair all the time. Yes, it's itchy. Yes, it's hot and frustrating to be limited on hairstyles. Yes, it's stressful sometimes. I just look at everything good in my life and I am so blessed to have such a wonderful family. I wish I could be even more bold and walk around bald! I still have some issues that I'm working on but I'll get there. I would love to help kids that are struggling like I did. I would loce to answer any questions about my life and my struggle with alopecia. I'm sure I left some stuff out but that's my story and I'm happy to share :)

Views: 365

Comment by Tallgirl on July 27, 2012 at 5:03pm

I hear you. I think it was the shots in the head that made ME feel weird, because, like, who DOES that to another human being? Who the heck would EVER understand painful shots in the skull with a popping sound and blood? Pretty hard to want to share THAT and still appear unfazed. So...I decided that enough was enough, and I would just go with whatever The Force meant for me naturally. You know what? Eliminating that stress at the dermatologist's office made me way happier, even though I now have just white wispy bits of hair. My synthetic wigs and my hats or scarves are more warm and comfortable than any shots. I love the idea that you are having cocktail waitress fun with your changeable looks, and am glad you have a buddy with this: your dad! Thanks for your story.

Comment by Ashley on July 27, 2012 at 5:16pm
Thank you for your comment :) I'm so happy I joined this site and can talk with people and hear their stories! My dad is completely unaffected by it lol I honestly wish I could be more like him.
Comment by mkangas on July 27, 2012 at 11:29pm

You have such an amazing attitude, what an inspiration! I wish I could have gone without the wigs, too, when I lost all of my hair. It's so great to hear a story of encouragement :)

Comment by Ashley on July 28, 2012 at 12:16am
I'm really upset... My story that I posted here, I also posted to my Facebook. I got a wonderful unexpected response that made me cry (happy tears of course). Im very open about my alopecia when someone asks but I've never just put myself out there like this. My mom and grandma are so proud of me and so are a lot of my friends, very supportive. My 23 year old sister read it and now will not talk to me. She's so mad at me for what I wrote about her. I wore that I'm glad j got it rather than my mother or sister because they couldn't look at it the way my dad and I do and it's just plain true. Even my mom and grandma say they're so proud of how I handle myself having a job in public being a bartender and cocktail waitress, where in las Vegas the hiring process is based largely on outer appearances and I freaking rocked that bikini audition I had to do with my hair sprayed perfectly to hide all of my huge embarrassing bald spots. ( my hair grew back for 2 years and fell out again) I wore a fall and used eyeshadow on bald spots until I finally broke down, shaved my head again and started wearing full wigs again. I just need to vent because my feelings are hurt that my own sister wants to disown me and my baby girl for what I wrote. I told her I'm sorry and I could've worded it differently but she's still mad. Saying things to me like "there's people out there dying from leukemia and you want to whine about this?" it just hurts and I need to know if anyone else has had to deal with someone you love being completely insensitive. Thanks for reading my problems lol
Comment by mkangas on July 28, 2012 at 1:01am

Wow, I am so sorry that you have to go through this. Unfortunately, this is the perception of so many people in our society. Alopecia is not cancer or life-threatening, so why is it a big deal? To think that, living in the society that we do, anyone, especially a woman, losing all of or most their hair does not effect their overall psychological well-being is just plain wrong. You CAN NOT allow anyone to make you feel guilty for needing support. People can always say that someone else has it worse. You could say to a paraplegic that there are quadriplegics out there and you want to whine about being a paraplegic? Just because other people are suffering doesn't make what you're going through any easier.
I had someone who would always do that to me. When all my hair first fell out, they would say things to me like, "Think of all of the people who have inoperable brain tumors!".
I know they thought they were giving me perspective but all that did was make me hold in my feelings about losing my hair, and make me said about people with brain tumors. Just know you are not alone in needing to talk about it and you are in good company here. :) Hope this helps!

Comment by Ashley on July 28, 2012 at 1:12am
Thank you :) it does help! It's just hard to hear such mean words from someone who has watched me struggle since I was 13. I can't even share what she said to me because it's so inappropriate and honestly embarrassing coming from my own sister.
Comment by Tallgirl on July 28, 2012 at 1:52am

When a person points a finger at another, three fingers are pointing back at herself. I always ask myself, "Why is this person so angry?" Ego! She wants the attention, and your alopecia not only takes the attention off her, but has done so for years and is a bigger story than anything going on in her life. Just copy the Facebook paragraph, then paste it onto your page but delete the part about her and your mom. THEN save the new version.

She isn't disowning you, because slavery is out and people can't own others. You and your child are HERE, and your sister has just removed HERSELF from family over a snit. You do not have to ever mention alopecia around her again. The silence will speak volumes about your could-have-been relationship and trust level. Sometimes silence is the best way to handle those who gripe or put down others.

By the way...my sister gets annoyed when I want to go somewhere without my wig, even in hot weather. I live far from her, so I will not give her this info about me from now on. I'll bet she hated the family attention over my alopecia in our teen years. We are both over 55, and one would think she could be supportive now that I have alopecia again. Life goes on...

Comment by Ashley on July 28, 2012 at 3:44am
Thank you :) So very true.
Comment by Norm on July 28, 2012 at 11:51am

Ashley, maybe you should return your sister's compliment - something along the lines of "there are people out there with life-threatening diseases, and you want to moan about something I wrote on Facebook??"
Jeez... people you thought you were close to. Why can't they just sit down and have a rational conversation with you???

Comment by alamogirl/ aka Judy on July 28, 2012 at 2:12pm

Ashley, you are an amazing person and your sister must NOT be allowed to disrupt your life with her attitude. May I put the conversation on another track...I am curious as to why you must purchase a new wig every 3 months. I have heard this from many other people s well. I have had mine since January '12 and it still looks as good as when I bought it. I am not especially careful or anything with it. It is synthetic, cost about 110 dollars, and I wonder if I am missing something. Advice? Thanks.

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