Alopecia World
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New to this new life
I was just diagnosed with alopecia and am in need for support. I lost all my hair except for my eyelashes so far and a sprout of hair on my head that will most likely be gone soon. This all happened over 9 weeks. The doctors feel that there is other underlying conditions not yet diagnosed yet, so I will going to doctors #6 and 7 this week. I don't mind all the tests and appointments, but I am trying really hard to deal with my new look.
I lost my brother as a child to cancer and that experience changed my life. For the last 10 years I have always been positive and the support for others. When anyone asked how I could always be so positive and see the best no matter what, I responded with " it could always be worse!" I now feel like a closet hypocrite. I put on a happy face then feel sadness when alone. I know it's just hair and looks are not everything, but it all changes when you are faced with this.
The hardest part is work. I have clients who have always commented on my hair. I even had a gentlemen who would not come back for his appointment because I changed my hair color. He waited a year to come in until I changed my color back. Many clients ask if I have cancer and some don't want to reschedule with me. It is hurting my career.
I bought a wig for work but it gave my neck a scratchy rash. I went shopping for one that I can wear for everyday use that keeps my neck covered and warm without a rash. WOW! $1000! I already spend $500 and I can only wear it until I get the rash.
Does anyone have a line on getting wigs for under a grand? I am looking for a place I can try them on or return if I don't like them. The hardest part is looking in the mirror and feeling connected to what is looking back at you. That is a very surreal concept I am learning about. I guess I'll f I had eyebrows it wouldn't be so hard.
My kids are worried so I don't go without a hat around them. If they were older it would be different but I need to be ok with it before I can expect them to understand.
I realize I may never have hair again and will live a great life without it, but for now I just need some confidence to get me over that hump.
Thank you for any one who reads this or responds.
Cali
Replies to This Discussion
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Permalink Reply by Zimrie on
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Try doing a web search for hair prosthesis shops or wig shops in your area. They usually have head covers that help to save your face. There are ones you can get for less than $100 that are a lot more comfortable than a hat. I have ones to use when I'm cold and others to use when it's hot. I have some I use to make me look good and others that are only to use around the house.
I've made some of my own on the sewing machine that are just right for me and not available anywhere else.
For anyone starting to lose their hair, please don't make the same mistake I did. Collect a hair sample before you lose it all because you'll need it when shopping for a prosthesis. In my own case, my hair was all different shades.
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Permalink Reply by GardenJess on
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I highly recommend joining wigsupport.com. There are lots of more affordable synthetic wigs that are easy to wear and look plenty realistic. Kind of rotten that you are dealing with rashes too though.
Your hair loss was really sudden, so I can imagine it makes adjusting even harder. I don't know what will work for you, but I made a conscious effort when my hair loss got extreme not to hide my head at home. At first that meant wearing a scarf and not feeling like I had to sneak in and out of the shower without being seen, but gradually I and my family got used to my changing looks. The shock value was gone. It has been a couple of years and my kids are now 4, 7 and 9. I'm sure they each have an opinion about my hair or lack thereof, but because I don't present it as a big deal, they don't seem to think it is one. I remember one moment when my little girl almost brought me to tears because she stroked my head and said the odd mohawk of white hair was pretty. I imagine it will get harder if my kids get older and start caring, but then I hope that any awkwardness is overcome by the value of learning acceptance. I think having kids helped me deal with alopecia because I knew what I wanted to model for them, and because they made a very clear measure of whether I was coping the way I wanted to or not. Even if I felt like staying home and hiding, I wouldn't let myself alter their lives because of my hair. I don't know you or your kids, but I wouldn't worry too much about worrying them. They will quickly realize that you are the same person, with or without hair. I have told my kids that I am unhappy about losing my hair, and I will point out in photos that for most of my life I had long, brown hair, but in telling them and trying to convey though my actions that it is just hair and doesn't change who I am, I help convince myself.
It must be really hard to have your work affected by your hair loss. That is a challenge I was fortunate enough not to have to face, though I certainly experience how people treat me differently when I wear a cap or scarf versus when I pass for normal with a wig.
Best of luck to you, and know you are not alone in this.
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Thank you. Any insurance help will be great. And thank you for taking the time to help me. It means a lot to hear from others in the same boat.
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Thanks. That was very helpful. I am in California and there are only a few wig shops around. I can drive a couple hours away to find human hair options but they are not in my cost range. I will take your comments and work it out. Again, thank you so much.
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Permalink Reply by Lexi on
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Trying to find a nice wig that looks realistic and is comfortable is like an impossible task. I don't have a ton of money to spend on good HH or synthetics that get frizzy and are ready for the trash can in a few months. That's a lot of money every year. Getting the better HH wigs would make you (and I) look and feel better about yourself, but who has $3K? I have thrown away a ton of money already. Sad. When it is said that one would spend an amount when they had their own bio hair, I don't understand. I never spent any money on my bio hair. Haircuts I did myself or my husband helped. Store bought hair color I did myself. The only time I EVER got a professional hair trim was when they had a sale for $6 or so. My bio hair was always straight, fine, silky, flyaway and did nothing. So one can't spend a lot of money when all one does it get the ends trimmed, and wears their hair straight.......
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Wow. There was actually a lot of good helpful info there for me, calicj. I didn't know you should thin them out or get them cut. Is that also for synthetics? I bought 2 that were on the cheaper side for this area at the tune of $600. That was actually on the cheaper side around here. The human hair one I tried on was $1100 and that was on sale, most were $2000 and up. I feel good that I have something now.
This post made me realize I have a lot to learn still. I was actually wondering about if I needed shampoo and conditioner still or just use body wash. I guess lotion is needed to keep the scalp from drying out.
R
So again thank you. I have a lot to learn. I am very great up for your support and understanding. This is traumatic and I will survive. Just have a new way of life.
Calicj
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Yes, agreed It is all so stressful. Wigs cost a fortune, and don't last very long. Reading the posts, I surely don't believe anyone can thin a wig on their head. ??? How ever can one see the back like this? I am surely not used to spending ANY money on my hair in my entire life. If you can call a $7 box of Clairol every 12 weeks, as a box lasts two times for my hair. And I use cheap shampoo...Suave or something like that. No cost involved at all. A wig...major expense. But the cost of synthetics is going up higher and higher every year, like over $300 for a good brand, nicer quality. And I hear if you wear them daily, they don't last. Every time they rub your clothing or your neck in the back, they start to frizz. You can search online at Fortune, Milano and Freeda and get some pretty decent wigs it seems for maybe $600-700 if you are not searching for something really long. And they will accept a return if it doesn't work out. Then there is the cost of having it "cut in"...? and thinned. Probably over $100. And using a better shampoo and conditioner seems to be a must. I understand about the rash...... Synthetics itch my skin something terrible. I am leaning towards trying a HH wig. But the expense!! QD beauty from China people seem to really like. I just don't know how to order and deal with a company in China. Seems difficult. Lots of luck to you.
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I think I understand the thinning now. Is it to make it look better when you have it on. I just got my first ones and only wore them to my office parties so far. I guess I thought you bought a wig and wore it. So I guess now I know to go get it thinned for a more tailored look. Is this correct? And as for all the knots I am hearing about... Does that mean the knots that start from tangles or knots meaning where it attached into the cap? Sorry. All this is SO new for me.
Thanks calicj -
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You are getting lots of helpful advice, but I thought I would chime in again with a slightly different perspective. I had long straight hair, and when I first sought out a wig, I wanted to replicate what I had lost. I got synthetic wigs that looked better than my bio hair ever did, but the long hair tended to tangle and frizz at the ends, and I found wearing wigs uncomfortable. Then I tried something completely different, a really short cut in a different shade. Short synthetic wigs can put up with a lot and last a long time. I don't wear wigs daily (still would rather not have one on my head), but I have hair when I want, and if I want to dress up and be glamorous, I can wear long hair then.
I'm not someone who wants to spend a lot of effort on hair. I joke that I ignored my bio hair so it went away (twice yearly cuts at Supercuts for a grand total of $30 plus some cheap shampoo and conditioner). I don't want to fuss with human hair, and, after trying different wigs, I don't want to fuss with long synthetic hair for everyday wear.
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I wear a hat at all times for now since it is cold and only wore the wig at the Christmas parties. I have a in just ids on Monday and will wear it then. Around the house, not yet. I thnk I will invest in skull cap hats. I don't like bills on hats when I am in the house. I feel like my vision is impaired. I did buy a short one for work but I then bought a long one too. I thnk I need the long one for a slower transition that I can control to my emotional state.
I am so happy to have had such wonderful and helpful comments so far. It has been so helpful.thanks
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