Comment by Karalee on March 24, 2015 at 12:01am

Thanks for sharing Barbara.  It does help to vent.  It can feel like such a lonely thing.  here's more about my story and how it has impacted my marriage. http://damselindepression.com/more-than-just-a-bad-hair-day/

Comment by Barbara on March 24, 2015 at 6:45am

Karalee, I saw your blog and I think you are beautiful! I look like Uncle Fester from The Adams Family! Ha! I read your Blog. My husband and I are going on 23 years of marriage. He has been awesome! When I started losing my hair in huge patches he shaved it for me. Little did I know right after that I would get AU and lose all my hair! He went wig shopping with me and tells me I'm beautiful. I wouldn't have been able to do this without him. I'm sorry your husband couldn't have done that for you. I understand tho cuz my dad was that way. He had feelings but always held them inside. I love alopecia world. It has helped me so much! I know I am not alone and neither are you!

Comment by Liisa on April 11, 2015 at 11:56am

I just recently joined this site needing support for the same issue, alopecia universalis.  I lost all of my hair about 6 years ago.  I have a freedom wig currently which helps to feel a little normal.  Something my husband, who has been a great support, searched for online.  I know how you feel about people asking you if you have cancer.  It can get very frustrating.  And then when you tell them you don't have cancer, they want to know what is wrong and then give you advice on what you should do, like you have tried nothing yet.  After all this time I am still having a hard time accepting myself with the hair loss and realized I need to get in touch with others who have the same issue.  People who don't have this issue really can't understand and many times in trying to help or be nice make it seem like it's nothing to worry about.  They talk about how fun it is that I could wear a different hairstyle everyday.  They don't understand I just want to look and feel normal, if there is such a thing anymore, not change my hairstyle every day.  I really don't want everyone knowing that I have this disorder and many people don't.   That is my prerogative.  It seems those who really don't need to wear a wig think it's a great thing to be able to wear a different one each day.  Most of the time I feel like a freak because of the hair loss and a fraud wearing the wig.  I don't feel comfortable to go without something on my head and only my husband, granddaughter and hairdresser have seen me without a wig.  I find myself holding my breath a lot of times even with the wig because the wig can lose hair also and eventually will need to be repaired.  Supposedly the wigs will last 5 years.  I have had two wigs in 6 years and both have needed to be repaired once.  They are pretty expensive to buy and repair and when I've had them repaired I get letters about how I am taking care of the wig properly if it isn't lasting 5 years.  Guess I'm venting a little myself here.  Sorry about that. 

Comment by Barbara on April 12, 2015 at 10:13am

Hi Liisa,
You've had AU longer than I have. I don't know if I'll ever be comfortable with it. I don't wear anything on my head in my house but if my door bell rings I panic! I was doing yard work yesterday & my head got hot under my hat. There was no way I was taking it off! Not having eyebrows or lashes makes me feel self conscious too. I am unemployed and looking for a job. When I go on an interview I worry if they know I have on a wig! This website has helped me know I am not alone. My husband's been . I don't know what I'd have done without him. Vent to me any time. It was good to hear from you!

Comment by Liisa on April 12, 2015 at 7:09pm

It was good to talk to you also Barbara.  I know what you mean about feeling comfortable with it.  I can't say that I will ever be comfortable with it.  I've just come to realize that I haven't even accepted I have this which is part of why I'm not comfortable with it.  I'm currently seeing a counselor for depression.  She said that I'm really not much different that someone who has lost an arm or a leg and has to wear a prothesus.  I hadn't thought about it in that light and it helps a little.  More acceptance needed on my part I'm sure.  I do have tattooed eyebrows which helps.  I occasionally wear false eyelashes but they are not easy to put on.  I have gone on job interviews with a scarf on and temporary eyebrows.  I didn't have any problems getting the job but felt self-conscious.  When they asked me about it I explained and they were fine with it.  I now have the wigs.  Thank you for sharing.  It does help.

Comment by Barbara on April 12, 2015 at 7:21pm

Hang in there! We are in this together!

Comment by Heidi on April 26, 2015 at 6:55pm

Your posts sound like they could have been written by me! I have had Alopecia since August 19, 2014. I lost all my hair in a week. Scalp Biopsy, lots of blood tests and of course no idea what caused it. Tried all sorts of treatments, meds made me feel horrible too. One actually caused hair regrowth, but elevated my liver levels so my doctor immediately stopped that med. She just found a new treatment with a high dose statin, been on it for a month and nothing yet. Very expensive, I see her in a month and I am about ready to just stop all treatments. In the last month I have lost eye brows and lashes, that has almost been worse than the losing the hair. When I retired from teaching in 2013 this is not what I was expecting in retirement! We used to go to Vegas every year the day after school got out as a welcome to summer. Dreaded flying because I hated to wear my wig sitting so close to others. We flew to Vegas lady week, wore a hat that had the word SIX in rhinestones on the brim. I got it in Branson when we went to see a singing group that I love. When I went through the X-ray the person asked me to take my hat off because of the "bling". I had not expected that! She apologized profusely, assuming I had cancer, I just left and collected my things, then the tears came! My husband had no idea why I was crying. I also wear nothing on my head in the house, but when someone comes to the door I have to grab a hat! Just when I think I am doing ok I have an unexpected outburst of tears. So hard to accept! This site is a huge help. Thanks for listening.

Comment by Barbara on April 26, 2015 at 8:06pm

Hi Heidi! It was good hearing from you. I know now I'm not alone & it's shocking how many people actually have this disease. I too had a scalp biopsy. I had a little hair regrowth with prednisone. The doctor put me on cellcept and it all came out including my brows and lashes that had come out. I broke down in the doctor's office. I stayed on that for months with no hair. Insurance didn't cover it. Now I don't work (looking for a job). I just gave up after everything I read. I don't cry anymore. It is hard not to have brows and lashes. I won't go in my yard without something on my head. It's ok. It could be so much worse. I have a friend who's cancer has moved into her bones and they're not even going to remove the original tumor and no more chemo so I'm counting my blessings. You can send me a message anytime of you want to vent or share something. It helps to talk to someone who's going through it too. Take care!

Comment by Liisa on April 26, 2015 at 9:38pm

I have not had many things done by a doctor.  I have hashimoto's thyroiditis also and had to fight with my physician at the time for her to even treat that.  At the time I had insurance through the state which didn't pay for much. So the doctor's I had would not do much and kept telling me there was nothing they could do.  I now have insurance but do not have a physician and do not know who to see.  I have gone through 3 doctor's who would not even test for anything or try anything.  The first one sent me to a dermatologist who gave me cortisone shots to the head until I couldn't take it anymore.  No hair growth and a lot of pain.  I had a break down in the second doctor's office because she wouldn't even try thyroid medication even though I had all the symptoms of a thyroid disorder.  She finally put me on some and most of my symptoms went away including the hair loss for a time.  She would not increase my medication though and told me that is all she would do.   The only testing they would do after that was for my thyroid and that is all and since my levels come in the normal range they will not even think of increasing my thyroid medication because it "might" cause my levels to go out of the normal range.  They won't even try to see.  Needless to say I am frustrated with the medical profession in my area. 

Comment by Barbara on April 26, 2015 at 9:46pm

I know. It's very frustrating. My hair started coming out when I found out I had a para thyroid tumor but 2 docs said my hair loss wasn't related. My sister's hair was coming out & she was found to have a para thyroid tumor. I don't know if she lost all her hair because I haven't spoken to her in a few years. Long story. It would be great if all these docs could get it together.

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