Replies to This Discussion

Permalink Reply by Barbara on August 11, 2009 at 10:18am

Hi Carly,

We do seem to be in the same boat – same old sinking boat! I panicked when I found the spots. This is my timeline, with a typical response from me.

Thurs. May 29th – hair appointment – hairdresser tells me I have 3 spots. I suffer through that evening absolutely ready to VOMIT I am so sick to my stomach. Race home and get on my health insurance website to find a dermatologist. My 3rd phone call reaches an office 30 minutes from me who were still open – Thursday was their late night – and I got an appointment the next day at 9:15! Needless to say, I took it!

Fri, May 30th – dermatologist gives me the diagnosis, and says that the statistics are:
• 33% of the people who do nothing, regrow their hair spontaneously within a year
• 33% of the people who do nothing do NOT regrow their hair within a year
• 33% of the people diagnosed who get treatment, regrow their hair

He gave me cortisone shots – ouch – in the 3 bald spots, some clobetesol ointment, Minoxodil 2% and a “come back in 6 weeks.”

Saturday May 31st I made an appointment an hour from my house to go to a wig store. I got prices ($$$$) and advice, chose a color (that really matched my hair) and got measured. I found out that some insurance plans only pay for chemo hair loss, but that United Healthcare (SOME, not all, UHC plans) will pay for AA, too. I felt better now that I had a safeguard in place. I could call them if the balding got worse and once I was ready and they could place the order.

Sunday – my husband was putting the meds on my head and found more spots – like 4 more. Boy then the crying and anxiety shot through the roof. “What will I do tomorrow for work?” “What will happen if I am bald tomorrow?” “How many bald spots would I end up with?”

Sunday still – I called a special health advocate number that is provided through my insurance company and spoke to very nice people who told me all sorts of things, including that according to my policy, I did have SOME coverage for a “cranial hair prosthesis”. It is a one-time, lifetime coverage thing – not ongoing wig replacements.

Monday morning – I called the wig shop and said, “Place my order.” I didn’t want to put out the hundreds of dollars, but I did. I am not a brave, courageous person. I am a real coward!

Tuesday through Friday – panicked every time someone walked behind my desk, sure they were looking down at “old baldy”. Worked with the wig shop to get a response from my dermatologist who did not know the correct way to write the prescription so that it would go through correctly (the wig shop knew, but he didn’t). Finally on Friday, right before I left to go to my “pick up the wig” appointment, the proper RX paperwork went to the wig shop.

Friday – got the wig, got it cut, and wore it home.

So, even though I did get an approval letter from my insurance company, they have not processed the payment yet, so still waiting for that, but I am sure it is coming. And even though I have some regrowth on some bald spots, I have an overall thinning elsewhere and continue to lose what seems to be an abundance of hair when I shampoo. So some is growing, and some is shedding.

I HAD to have the wig in place, preparing for the worst case scenario – though the ¾ will not work if I get AT or AU or more than 50% loss. But at least I have this in place and if I saw that coming could make do. I am afraid I am going to bankrupt us with all the extra supplies (hats, scarves, head bands, combs), treatments (derm match, mousse, conditioner, gel sprays), and the WIGS!

So I leave on 8/29 for Florida – with wig in place and a sit case of supplies, hats, and scarves!

Barbara

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Permalink Reply by phillipa on August 23, 2009 at 9:56pm

Hey Carly, I feel your pain!I am pretty new to all this too. I was diagnosed with AA about the same time as you and Barbara.. It took maybe less than a month for me to loose what looked like 75% of my hair.. From what started as a single small patch grew into an unsightly bald spot .then more and more started appearing.. I had already planned a trip to Thailand, I was there when i decided there was no more hiding these bald spots especially at a tropical paradise swimming would have anticipated an anxiety attack knowing my bald spots could be revealed!.... It all had to go! for the sight of seeing my own dear hair falling out leaving a trail everywhere i went with no control too disturbing to bear, i decided shaving it was the only sense of control i was going to experience in regards to this hair issue. And when I did finally shave it to my freaking horror i discovered it to be way worse than i could previously see..Oh the grief at looking at my self as one with no hair, so used to a full thick mane of dreadlocks and hair down to my butt.. Aue... I'm all about scarfs these days.. Kinda feel like a leopard with out them.. About a month a go i have grown back a great 50% of my hair I think from detoxing... i had my hair tested and it came back with an extreme amount of toxins in me.... So I am endeavoring to to be more aware of my Health and creating a good chemical balance even though i thought i was quite a conscience person as to what i put inside of me I am still vulnerable to this toxic society ... But as for your questions I say Its hard to say what to do for you for only you will know whats best for you what ever makes you happy.. Watching my hair fall out didnt make me happy... I dont regret shaving it for its been less of a hastle I think it helped me come to terms with this condition a bit more rather then the denile i was in ... Have you checked out that Ancient Indian recipe? Im curious to see if that has worked for people with Alopecia?? Mite give it a go... Good luck with the treatments your using... Kia Kaha..Be strong and Live on!
*Phillipa

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Permalink Reply by Carly Petko on August 25, 2009 at 10:03pm

Hey Phillipa,
Thanks for your message. it actually really made me feel better. Just to know someone else understands what you are going through you know? Alopecia from what I have learned is so different for everyone which I think is the most frustrating part. But I am pretty much where you are. Got diagnosed in June, and today I have about 20% of my hair left (I used to have, seriously, a lions mane my hair so thick i hated it, but I guess the grass is always greener, huh?lol) Last week I purchased a wig and have started wearing it, which is.. different. But it has made m feel better just because I dont have to worry about whats going on underneath the wig anymore. It is that whole control thing. It like you have no other control with what to do except whats going to make you happy. I am living by that. I often am contemplating shaving my head just so stop watching it fall out. This experience is humbling and really makes you count your blessings, thats for sure. That is great so much of your hair has come back!!! :) Is it growing fast? Is it like a buzz cut? Thats wonderful. Maybe I should try a detox. Do you use any certain one? I have never heard of the Indian remedy, what is that?

Thanks for your helpful message!!!! Best, Carly

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Permalink Reply by Georgie on August 26, 2009 at 12:46am

Wow, I feel like I'm in the same boat. My hair has gotten so thin lately from all the shedding. The back is tricky to disguise. Sometimes I feel like shaving my head would be so liberating. No more shedding...worrying about scattering my hairs around all over the place. I've never heard of dermamatch. I wonder if my dermatologist has? I should ask her. I wear barrettes up front to cover up a patch that's been growing in over the last couple of months. It doesn't thrill me at the age of 37 to be wearing barrettes....but the scenario could be worse. My 7 yr. old likes to now copy me and also where a barrette on her hair in the same place. The back of my scalp is what has gotten so thin. And it's been itchy. My DH thinks it's because new hair is growing in. But I don't understand why so much is falling out. There were some pretty bad patches back there and they are growing in slowly. *sigh* I've been so FRUSTRATED with AA lately because I feel that it is such a "gray" area. Each day is different. Hair one day, patches the next. And then where will the patches show up? Are they coverable...or not? Is it going to be windy or rainy today? Do I need a hat? Ugh!! What I've learned is that if hair is going to fall out...it will. Brushing, shampooing...etc. won't make a difference. I've had a lot of kenalog injections.....and they have helped. Did squaric acid, too. It helped, but was painful. Both treatments did not prevent further patches from showing up. But hair did grow in. Hope this helps...I see a dermatologist at Bridgeport and she has been very helpful and understanding. I'm glad I found her. I also work with a naturopath on Pilkington Road and she's really been a key in unlocking a bunch of other things....autoimmune related. We should meet up some time! I'm in LO.

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Permalink Reply by Paige B on December 9, 2009 at 2:16pm

You know, I was told to massage the heck out of my scalp because it draws the red blood and all the good nutrients to help my hair grow. Plus, it feels so darn good at the end of a long day.

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Permalink Reply by Barbara on January 8, 2010 at 10:24am

I bought one of though spidery looking metal scalp massagers and used that, plus would lie on the sofa with my head hanging down. Have to start doing that again. Don't know if it makes a difference or not, but what the heck!

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