Comment by AZMom on May 18, 2012 at 8:42pm

Hi Tracey--Your sentiments mirror mine exactly. I miss the ease of putting my hair in a ponytail and constantly being aware of what is on my head and worrying that it is still on my head! I have several synthetic wigs with the mono tops and I've been wearing them with cute baseball caps to workout and even wore one on a cruise and went in the water. It didn't come off and it looked pretty good to me and my family. I guess we have two choices--we can put on new hair and get going again or stay at home and be down about the whole thing. I never thought I'd get alopecia, but now I just have to adapt.Yesterday I had kind of a bad day, so my husband took me out to dinner and I noticed that no one cared or stared at me. I also went shopping and that is also a mood lifter for me. I know what you mean about the wig being hot--Arizona will be well over 100 every day not until October. Things are getting better and I'm sleeping at night and now crying anymore. Yesterday I posted a picture on Facebook of me on the cruise and one of my friends that I haven't seen in awhile posted that she loved my hair! I laughed so hard--that really made my day. Hope you have a good weekend!

Comment by Tracey on May 19, 2012 at 3:20am

Thanks, AZMom. I agree with you... Like that line from Shawshank Redemption: Get busy living or get busy dying. I will "live" again after some wig and attitude adjusting. It seems to be two steps forward and one back. Just noticed some of my four month-old growth is shedding. Sigh. I will get back on that dance floor one way or another. Thanks for your support- it means a whole lot. I'm still trying to figure out how you can stand to work out in a wig and a hat!! I'm using just a cotton scarf now and feeling overheated!! Guess my body is just gonna have to figure out how to cope because I refuse to let the pounds stack on for fear of becoming more depressed!! :-) and I'll stop complaining about heat now as Seattle has nothing on AZ!! :-))

Comment by Denise on May 19, 2012 at 5:01am

Hi Tracey, i just read your post and i am sorry you have to go through this alopecia cycle. but the title of your post grabbed me, AZMom's comment as well. i am so glad that i found this sight. when you said you cycle between decent days and depression, it was like i could have wrote those words myself. Right now i am going through a lot of depression. i haven't slept at night in awhile. and i too worry about my wig falling off at the most inconvenient times. i used to do so much. i used to be so active. i have struggled with alopecia off and on for years. i have worn wigs for years. but for whatevr reason this year i have not been able to cope. my mind seems to not stop worrying. i really dont have one person that i can vent with. i have one sister and she made a big deal around the family about me wearing a wig while i worked out and it made me feel so low that i just hope nobody brings it up again. i stay home and im depressed all the time. i know its not healthy so i did atleast set up an appointment to talk to a counselor about my depression. i am just glad for this sight, to read others experiences and know i am not alone. i hope you have way more happy days than sad. Denise

Comment by lynne on May 19, 2012 at 8:17am

Hello tracey Im sorry ur feeling so down just now but i do kow exactly how u feel. I am losing my hair for the 2nd time and i have patches i cant hide now and i have only just put on my wig today for the 1st time again. I had all my hair back last yr after losing it 2yrs before so was lucky but now bak to square one and i HATE it also. I watch people all the time by what they do with their hair, i want to tie mine up to and go swimming but cant as i try to make out that this is my hair. I hate myself for worrying about what other people think but this is how i feel too. I am going back to see my dermatologist but dont even see the point as they dont care as we are not ill, but i believe my hair has fallin out for a reason and i want to find out why, I think if ur immune system is whats causin it then something must be wrong with my immune system then. I hate wearing wigs but feel a bit self consciuos in a head scarf cause people stare, i want a real hair wig from the nhs but they wont give me one which is shocking! Hope ur feeling better soon tho xx

Comment by Tracey on May 19, 2012 at 12:32pm

Denise- I am sorry you are struggling as well (and shame on your sis for making you feel bad about coping with a wig!). I do hope you find the couselilng helpful. I made a stab at that, spent the first two sessions educating my counselor about alopecia and convincing her that my anxiety and depression was justified. On my third session I politely fired her as she was not giving me anything helpful to work with. (Yes, I know my hair does not make me who I am, etc., etc., etc. Just tell me how to stop crying!) It got me wondering how many alopecians are on anti-depressants! If nothing else, it did make me realize I have a good head on my shoulders and could probably figure out coping skills on my own. It also gave me a resource to validate some of my thinking, so it was not a complete waste. Best of luck to you. I hope tomorrow is a brighter day.

Lynne-- I am bracing for that second round of loss-- it's so cruel, and giving my shedding level I know it's unavoidable. I am not giving up tho. I agree-- obviously we are ill if our immune system is malfunctioning! Trying prednisone at present- no luck, but I am a stubborn soul. I have too much regrowth occuring to give up. I can sooo relate to your comment about watching people by what they do with their hair! It kills me! Then I think- I wonder how many people did that with me before I lost mine? I had a damn fine head of hair. Sigh.

I work near cancer patients, and I see such wonderful compassion and support from clinicians, famililes and the community to ease the burden of their struggles and to help them heal both physically and mentally, right down to their body image concerns. And then I look at us, struggling with some of those same disabling agonies and having to quietly slog our way through it alone while pretending like we are happy. Now, I realize it's not a fair comparison- they are fighting for their lives! But I can't help but feel bitter! And then I feel even more rotten about myself for being selfish! Blah

Comment by AZMom on May 19, 2012 at 1:48pm

Tracey--Did you check out wigsupport.com? This website has been enormously helpful to me. Everyone on there has hair issues but we're all trying to make the best of it and discover all kinds of alternatives and wig solutions. I have become a wig-a-holic and have enjoyed finding my style. Right now I have a wig that looks just like my own hair. I thought about getting a human hair one, but it seems like they're more trouble. I have the Amore Tatum wig which is basically my own style and kind of looks like yours too. I will never wear a poufy wig on top--not for me. Also another style that has worked for me is Amore Veronica--I have another one on order. It is easier to buy from the internet than a wig shop--you will pay more than double in some cases. You can take the wigs to your stylist for a trim of the bangs. I also lost my eyebrows which has been devastating, but with all the tutorials on the internet, I found a way to make them look very natural--also eyelashes are sparse--now I have a collection of eyeliners. This trip hasn't been an easy one. I even went to a world-famous endocrinologist and discovered there is nothing I can do--I am completely normal! That was good to hear, but I'd still like my hair back!

Comment by elaine on May 21, 2012 at 2:51pm

I've been wearing a wig since I was 16 and oh there have been some right bleepers but I've gone swimming with this one (derma light), cycling, zumba, and yes I sweat like mad but this one is fairly long and even now I have it tied back. You have to mourn the loss of your hair and that's the part the so called scientists just don't get..yes it might just be hair but it's OUR hair and we have every right to feel cheated and angry and every other emotion that counts. We didn't choose to lose our hair it just happened and it's how it affects each and every one of us that counts.
Like AZMom says there are ways to cope and I have NO eyelashes or eyebrows so I use a blonde eyebrow pencil and dark eyeliner. I love this group though because I know I'm not alone and if I want to have a moan about how unfair it all is I know I won't be judged or have tuts and eye rolling.
On a lighter note..I often joke I put my hair in the washing machine...one day I had lifted the towels from my bathroom floor after a shower put washing on and then decided to go out....hunted for my hair only to find it going round and round the machine. I managed to rescue it and it looked like a huge furball :$ loads of conditioner later and phew all ended well and I make sure I check before putting towels in the machine now lol

Comment by Tracey on May 21, 2012 at 5:39pm

AZMom-- checking out wig support today- thank you!!

Ha ha ha! Elaine-- that story about spin washing the wig is great! Thanks for sharing! And thanks for the inspiration. I'm not giving up and am thankful to have so many kindred spirits reaching out in support because furry folks just cannot relate, no matter how hard they try. :-)

Comment by Sheena Tha Cody on May 22, 2012 at 11:08pm

im a hair dresser i see cute hairstyle i want to do all the time but cant because of how stupid the wig would look like that you would see tracks or the hairline just looks stupid and i live in oklahoma where it gets so hot in the summer i dont think im going to be able to handle the heat with a wig on i hate how hot and itchy they are but im afraid im going to burn my head if i go without

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