alopecia

It is hard to tell in this photograph, but Ariel was signing to me! I am hard of hearing and there are times where I have to use ASL for communication. My mom told her that I couldn’t hear and immediately she turned asking (in sign), “You are deaf?”. I started sobbing, ugly happy sobs. In the time slot allotted we signed the entire time and it made my trip to Disney absolutely incredible. Think about that. Five minutes of just being able to communicate with a character made the long plane ride, long car ride, etc. worth it. The bonus is that Ariel is my favorite Disney princess. I felt included in a world that is tailored to the “norm” and it meant the world.

No Guardians if the Galaxy for me till Saturday :( so I’m sharing some Marvel love with my first test makeup for my Nebula cosplay!
I only did the front of my face/head, but I’m so loveing this! Feeling badass and beautiful at the same time ;) can’t wait to wear this at Torucon next weekend!!
Now to just put the finishing details on the costume, mix up a lot if paint and I should be good to go!

#marvel #guardiansofthegalaxy #nebula #cosplay #worbla #karinolava #shavedhead #alopecia #baldisbeautiful #baldie

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These photos are from about 3 weeks ago.

I kept thinking things like “I’ll wait ‘till the New Year to post them” or “I’ll make a video with these photos instead,” but all these thoughts were just deterring me from posting them.  

I like to post photos of myself without a wig on my blog at least once a year or so.  It’s important to me to make myself visible to others with alopecia that might feel alone, and also important in helping me remember I don’t have to hide it or treat it like a secret.  (It’s a little scarier with my rebooted blog because this is a more public blog, and I know that more people I actually know may see it, not just online strangers!)

I don’t ever go out without a wig on, and there are only a handful of people that I feel comfortable to take my wig off in front of.  But my goal is to get past that.  I miss the carefree feeling of being able to take off my wig to go swimming without thinking about how others might be viewing me.  I’m not proud that I’m so afraid to take off my wig to go swimming, even with only my closest friends around.  

Having alopecia doesn’t define me.  I used to be afraid that opening up about alopecia would cause people to see me as “the girl with alopecia” or “that girl that wears wigs,” but now I know that I am so much more than my appearance.  I’m so proud of how far I’ve come in speaking about alopecia, but now it’s time to take the final leap forward– starting to build my confidence without the protection of a wig.

Don’t get me wrong, I love wigs, changing up my wigs, playing with different hairstyles, and I’m so proud that I can finally change wigs regularly without putting myself on the brink of an anxiety attack when people ask me questions about it.  Sure, some of that anxiety still comes back now and then, but it’s not debilitating anymore, and it gets easier each time I face it.  But sometimes I fear that I use the wig as a crutch.  I’m stronger than that.  It’ll take time, but I’m constantly working towards improving my confidence, bit by bit.  How do I expect to encourage others to be alopecia-body-positive if I’m not even 100% there myself?  If I want to have any chance of inspiring others with alopecia to love themselves, I gotta start with myself.

(..I keep getting nervous to post this, thinking, “what if no one even likes it” but then I’m like yo who cares this is something I gotta do for me, the point is not to care how others react, isn’t it? ^-^)

OK BUT THIS IS ACTUALLY SO COOL. AND NOT EVEN FOR AESTHETIC REASONS. 

YOU HAVE TRICHOTILLOMANIA? BOOm.

YOU LOST YOUR EYEBROWS DUE TO CHEMOTHERAPY? BOOM.

YOU GOT SUPERCILIARY MADAROSIS (eyebrow loss)? BOOM.

YOUR THYROID GLANDS ARE A BIT MESSED UP AND YOU LOST YOUR HAIR? BOOM.  

DERMATITIS? ALOPECIA? HANSEN’S DISEASE? GROWTHS ON YOUR EYEBROWS?

BOOM, BOOM, BOOM AND BOOM.

HERE and HERE are where you can read more about it and find out some more info.

Unfortunately, the extensions only last for about two to three weeks. But, for people with Trich, if they are able to refrain from plucking, your natural hair should grow back in. And then you wouldn’t have to worry about the three week long period. (If you ever need any tips for picking around the eyes and eyebrows, don’t hesitate to pm me.)

I DON’T KNOW ABOUT YOU GUYS BUT THIS IS ACTUALLY SUPER COOL. EVEN IF YOU WERE TO ONLY USE THIS FOR AESTHETIC OR BEAUTY REASONS, THIS IS FREAKING COOL. 

Rules on how to act around people with wigs

So after going back to wearing a wig I thought I’d share some fairly obvious rules on how to act around someone with a wig.

1) Do not stare.
2) Do not ask if it is a wig. It’s none of your business.
3) If the person denies it is wig accept it and do NOT bring it up ever again. They don’t want to talk about it.
4) Do not threaten to pull it off. It will never be funny.

These all happened daily to me and caused me to have constant panic attacks when I left the house so please never do these things.

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I think there’s always the opportunity to accept yourself exactly where you are. I think a lot of people feel that they will accept themselves as soon as they go to the gym, as soon as they clear up their skin, as soon as they address a certain issue, then they’ll feel OK about themselves. I think they can always accept themselves exactly the way they are and that’s a practice. In each moment you have a choice where you can build yourself up or tear yourself down, and choosing to build yourself up is always within your power.

(…)

I’ve talked a lot about not wearing makeup and not wearing hairpieces, but I fully encourage people, if it makes them feel more like themselves, to do exactly that. Anything that makes you feel more like you, go for it. I don’t want anyone, whether it’s people with alopecia or whatever body image issues they’re struggling with, I don’t want anyone to feel like they have to be ashamed or that they have to cover up something that they’re ashamed of.

[x]

Bald is beautiful

Ladies, whether you’re bald on purpose or for medical reasons, you are beautiful! If you have alopecia or trich, hang in there. Bald girls are still pretty and cute. You can rock it! If you just like to shave your head, rock it too! Bald is fierce, and fierce is super-sexy. Don’t let boring or insensitive people put you down about your hairstyle. You all look good!

SO FAR THE GOAL IS AT: $500 / $4500

What’s wrong Zach?

Well you see, I have a disease called Alopecia Universalis and it has affected me since I was three. The short explanation is that my body cannot grow hair on it’s own and, because of this, I also have a weak immune system. Don’t worry though, I’m not sick! What I’m asking is much easier than curing anything.

I see. So what are you trying to do?

What I’m doing is trying to get a little help. My goal is to be able to get myself a suction wig (also known as a vacuum wig). I’ve already been saving as much as I can here and there but, with such a tight income in my family, it’s a very slow process. I’ve gotten up to almost $500 but that’s only a small step compared to the overall price. ($500/$4500!)

Why a vacuum wig?

A vacuum wig is made with real hair from donations of real people. In addition to this, it’s made with silicon and my head is specifically scanned to have a one-of-a-kind fit and will only fit me! This all means that I would be able to swim with this hair, shower with it, even wear it on a roller-coaster without fear of it falling off! And just to add to the pros, compared to a costume wig, this one will last me up to 5 years or more!

How much is one of these vacuum wigs?

The cost of my specific wig, which is the shortest standard, is $4,500. This total cost will cover the scanning of my head, making of the wig to my specifics, shipping and handling, and getting the hair cut and styled.

Why can’t you just get a normal costume wig?

The thing is, I have been, for a long time! Any wig I have now is because I got it from Ebay as a cheaply-made one for 5$. The only thing is that these wigs are poorly made, shed considerably, and are itchy as all hell. Some don’t even fit when I get it and if I do try to wear it, it squeezes my head so much it gives me a headache. I’m dying for just one wig that I can wear daily without fussing if my cap is showing or that it will fall off if I put a hat on!

What will this do for you?

So much! It will give me the confidence that I crave and that I know I have to be who I am. It will do wonders to help me emotionally and mentally and I won’t have to worry about if I get too itchy in public and have to carry a hat with me because the silicon of the vacuum wig makes it feel like it is your own hair. I will guarantee you I will cry if this happens.

I’d love to help! Click here to donate! Or please reblog!

Thank you so much! Even if you aren’t donating I would adore if you could reblog this and share this in any way possible! I’ve seen so much good come from people and if I could just possibly get a small helping hand, it would do wonders.

Other places you can support me in is my Etsy if you’re looking to have something as well as donate if you want something other than the rewards I’ve put up!

FINALLY I’M FREE.

I have been struggling for so long.. And the biggest struggle has been not admitting to myself that I was struggling with my bald head.

I have been wearing wigs for 12-13 years now. 
I have been waking up struggling with the fact that I thought I was the one that wanted to wear wigs everyday to school and work.
I have been working so hard convincing myself that I am the girl with ALOT of hair, when I have been ignoring the beautiful girl with no hair.
I have been hiding behind these wigs thinking I was nothing without them. I have been waking up thinking if I didn’t wear a wig I would not be recognized as a woman. They would think I was a boy. The would think I was ugly.

I’ve been sleeping with wigs because I thought every man I met would leave me if they saw what I really looked like. Because who would ever fall in love with a bald girl?

I have been hurting myself physically by wearing synthetic or human wigs on my head at least 340 days a year. But most of all I have been hurting the beautiful bald girl that has been struggling being suffocated and silent by wigs… Just because I didn’t want to be different.

I have finally came to realize that I am beautiful just the way I am. 
It took my 13 years and it has been so difficult. But here I am.

I hope I can now help women, especially the young beautiful women out there struggling with the same thing that I was. I hope I can help you open your eyes and see your beauty & worth. Because you are perfect. Just the way you are.


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