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adventures in being bald's Journal

Sunday, May 16, 2010

4:39AM - Regrowth questions

Hi,

I don't know what the demographic is on this community, but I figure there might be some folks on here who've been through the process and come out the other side and may be able to offer their experience.

Basically, I've alopecia universalis for the past one and a half years or so. About a month ago, I've started to notice a hair regrowing on one of my cheeks, and it seems to have stuck around for a while (it grew out a good few millimeters, and I could tug at it gently without it coming away). I haven't really noticed it anywhere else on my body; I'm taking this as a relatively good sign, although I didn't really like hair on my face before I lost it.

Anyway, my doctor isn't really able to offer a lot of advice with regard to alopecia in general, so I'm mostly working from all the mixed details I find on the internet. I'm wondering if anyone on here has had a similar experience and if there was anything they did to try and help the process of regrowth along? (I've considered buying a hair&nail formula in the pharmacy to just give the regrowing hairs a bit of extra nourishment)

Also, I know that my stubble and leg hair were the last to go, so the follicles were dormant for the least amount of time, so I'm wondering if it's a sign of potential total regrowth or just my face? (I know it can't be said for definite one way or the other, and I know 100% regrowth is unlikely with universalis, and is increasingly unlikely the longer the alopecia persists)

If it did regrow for you, was there colour? Was it the same colour as before? In my case, it seems to be colourless hair, and I just wonder if that's just the follicle getting used to growing again, and colour may return at its own pace... actually, I'm just interested. I know everyone experiences this differently, so I don't really expect someone to come along and say how it always occurs, but it'd just be nice to trade notes.

Now, one last question. If you've had you hair come back, how did you feel about it? Personally, I feel a bit weird. I mean, I know it's a good sign, but I also just feel weird about the investment of personal energy I made in getting used to the fact that I had no hair, coupled with the fact that I had mixed feelings about my alopecia to begin with. Also, I was beginning to get the hang of rocking this look. :) I'm also just being guarded; I'm afraid to get too excited about this, in case it doesn't happen... but given that this week I found 3 more hairs (bringing the total to 4), it's struck me that I may want to start considering that the first hair wasn't just a isolated incident.

Anyway, I'm aware that the answer to nearly each and every question above is, "It happens differently for everyone", but I'd just really like to read some experiences from folks who've experienced some sort of regrowth, especially about how they felt about it. (And yes, it's totally ok to say, "I was jubilant/ecstatic/over-the-moon" without reservation, or anything else about it)

Thanks.

Monday, July 6, 2009

11:22PM - growth and loss

Hello! I haven't actually posted on here in a while. I wanted to know if anyone else deals with sort of yo-yo hair loss. Its been like 8 years that I have had alopetia areotis and it seems to go in waves. It will fall out slowly to the point that I pretty much bald. Then it will stay like that for a little while and then start to grow back in patches. It will keep growing till I almost have a full head of hair and then start to fall out again. I am on my second cycle of this. I had almost a full head of hair for almost a year. That was like wow! And now its falling out again. Its almost to the point that my hair wont cover the spots and I will have to go back to scarves and wigs.

Its like I know the hair isnt going to last but I still get attached to it and get depressed that it is falling out again. It almost feels like its taunting me. As soon as I get used to having no hair it starts to grow back and then when I get used to the hair it falls out. I am so tempted to shave it off but I have this stupid attachment to it... There is a back and forth battle in my head about what to do with it. But it has been fun to have pony tails and shoulder length hair, when my hair does grow it grows really fast. But now I find myself not being able to fully cover the spots up so I will have to do something about my hair soon.

Do any of you guys find yourself in this situation? When I do shave my head it looks all patchy does anyone have any tips about how to make it look less patchy?

3:47PM - Hello.


Hey! I'm Lottie Parker and I just graduated from High School in May. I was a junior when my hair first started falling out and for some reason it actually hurt so I messed with it a lot. Of course everybody just told me that the reason my hair was falling out was because I was messing with it so I stopped no matter how much it bothered me. My fell out very rapidly, like i'd sit down in class and by the time class was over the floor and my chair would be covered in hair like someone had just given me a haircut. This was really hard for me because I had used to have very thick, very long hair that took me hours to blowdry and style and although I complained about the work I loved everything about it. By the time junior year was up I had wispy thin hair that barely reached the bottom of my ears with bald patches underneath. I tried to get extensions put it but *surprise* my hair wasn't even long enough for that. The only other option was to shave my head and get a wig but I did not want that. Over the summer my hair grew faster and better so I thought maybe the stress of junior year had gotten to me and it would all get better. Wrong.

I also have a thyroid problem which the doctors swear has no relation to the alopecia. So yes, I am pretty much the picture of anti-beauty. A 300 pound, pretty much bald 18 year old. As you can imagine the boys aren't exactly lining up outside my door.

I want college to be different. Does anyone have any ideas about how to feel better?

Sunday, July 5, 2009

4:38PM

I wanted to share the tattoo that I got last year will you all. I had two large patches on either side of my head, and after well over a year of trying to hide them, I had a "f@ck it" moment. I shaved my hair into a mowhawk, and got my scalp tattooed. A friend of mine is a tattoo artist, and gave me this lovely gift. I chose a lotus, as it is a symbol of rebirth, and growth. I had chosen it to signify my own personal growth, and also as a symbol of the freedom that I now had by not trying to hide my alopecia from the world. No more careful haircuts, and styling. No more hats or scarves.


Photobucket

The ironic part is- within 2 weeks of getting the tattoo, I started having regrowth. It first came in grey and curly, but after shaving the first regrowth, my normal brown, straight hair emerged. I still have patches come and go, but my tattoo is currently hidden.

7:41PM - My turbo cooling system.

I think I mentioned this before, but I'm a pretty major believer in figuring out some of the positive aspects of my AA, in order to help me own it. I had this particular revalation today and figured I'd share it, just in case anyone finds it helpful.

Ever been outside on a hot humid day with a bandanna on to keep the sun off, but you're slow-roasting underneath it? Have you ever had it cloud over a bit and shower some rain on you? My little revelation today was that having no head hair in these situations really lets you take advantage of the rain to cool down. All I had to was uncover my head and it cooled down instantly with the rain. Best thing was, I had a total advantage over anyone with wet hair (although, I do have the same concerns with wet clothes as well as everyone else, unless I go nudist... which wouldn't be my cup of tea, and would also happen to be indecent exposure over in Ireland); all I had to do was brush the drops off my head once I got out of the rain and I was done! I realise it's probably stating the obvious, but this whole AA thing does come with some perks, like being able to cool down faster, and dry off faster.

Thursday, June 4, 2009

11:32AM - Hi

So, after noticing my hair thinning for years, I finally have a diagnosis. Diffuse alopecia areata. I know it's cosmetic, and that I could be "actually sick," as my family keeps telling me, and that realistically my hair is no worse today than it was yesterday, but I'm seriously upset.
I hate that I'm crying about this. It makes me feel--well, really vain and frivolous.
Anyone have any advice on rebuilding your self image?

Sunday, May 3, 2009

12:57AM - National Bald Out

A friend of mine is involved in organising the ‘National Bald Out’ on July 19. To find out more look here.


http://www.youtube.com/watch?v=IXxBKwi-1lw&feature=channel_page

Tuesday, April 14, 2009

12:45AM - Prosthetic eyelashes

Hey all,

Just a wee question for you all. I don't miss most of my hair, but I have noticed that I miss one little feature: my eyelashes. They really were handy little blighters. Occasionally, I'll get stuff blown into my eye, and while I happen to blink, I still blink as if I had eyelashes - so I blink a bit too early, and have my eye open just in time for the foreign object to hit my eye. The worst is cigarette ash, as it tends to be hot.

Now, I'm not sure if, psychologically, I'm up for a wig or not* but I'm fairly sure I could quite happily hack some eyelash prostheses. So, I'm just asking if anyone has any previous experience in this? Is it a simple matter of picking up one of those cheap-o fake eyelash kits you see in stores, or even going to beauty parlour? One of the things I'm concerned about is potentially hot things, like cigarette ash flying into my eye. Would typical false eyelashes handle that well, or would they just melt, or burn towards my eye?

So yeah, any recommendations?

* Cue long explanation of not wanting to develop a dependence on it for the sake of my self-image, I want to be able to use it as a tool, not as a lynchpin of my identity - I did enough of that with my hair when I still had it.

Monday, March 2, 2009

12:07AM - Newbie!!!


Hey everyone!!

im new to this community although not new to having alopecia areata... ive had it for 3 years now and boy what an experience... i still cant beleive ive got this for life...

i wear wigs and have a year and a half now cause my patches got so bad that little hair that i had couldnt cover them anymore so i got my hair cut extremelly short basically shaved... but its growing back and ive got a new patch starting again.

i just wanted you all to no that if any of you would like to chat about anything... your more than welcome to give me a comment ill listen... i dont have anyone close by to talk to in person so talking to people who can relate to me about our condition via the internet is all i ask.

keep smiling :)
lots of love and support
xoxoxoxoxoxoxo

Current mood: grateful

Thursday, January 15, 2009

4:56PM - Remy Human Hair 18" long #4 dark brown wig - new

hi everyone,

i'm selling a real prize, and thought someone in this community might appreciate a great bargain. if you have to have it immediately, i will end the auction if you can paypal me.

18"  #4 dark brown color, super high end human remy hair wig
its straight and can be worn as either a full wig or  a fall.
the front is all lace and the cap stretches and breathes
bids start @ $120.  it retails for $450!

selling it on ebay because i need to sell it fast.  but its beautiful and a very comfortable style and thought someone in this community might appreciate a real bargain.
http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&ssPageName=STRK:MESELX:IT&item=120364298392

this is the picture from the manufacturer (pictures of the actual wig in the auction)





Monday, November 24, 2008

1:24AM - 'ello

I'm a new member, so I figured I'd do the polite thing and introduce myself.

So, yeah, I'm someone with AA Totalis, which is working its way down from the head (the Sunscreen song should have had the line "Be kind to your eyelashes, you'll sure miss them when they're gone"). I've had it for a while, but like a lot of others, occasionally need a place to vent, look for (maybe even share) advice, or hell, even to share a funny story with some folks who might appreciate it. :)

The funny thing is, being a transwoman I might have a few more mixed feelings than some others; while watching my scalp go totally bare wasn't the most pleasant experience, losing facial hair definitely didn't suck (saves thousands on hair removal). :)

On a more normalised note, I'm a total geek, living in Ireland and into things like juggling, computers (which earns me a living), collecting random information, public speaking, homebrewing and a whole load of other things I can barely think of. I'm also thinking of getting a tattoo fairly soon to mark the fact that I've had alopecia (regardless of whether my hair grows back or not), just as my little battle scar. You know, just to remind myself, "I once thought this was the worst thing that could happen, but I've faced this an lived". Once I actually get it, I'll probably post on pictures and the like.

Anywho, just thought I'd wave and say "Hey".

Saturday, September 13, 2008

6:06PM - Gail Porter

I recently came across this interview with Gail Porter.  Of course I am ‘bald by choice’ (I hate that term, but it seems to be accepted so I will reluctantly use it), but I have been through my own ‘life changing’ experience, so I can well understand the trauma that Gail has been through.

 

http://uk.youtube.com/watch?v=dtWJF-ZAeOQ

 

She may be putting on a brave face for the camera, but to me she looked amazingly positive, and comfortable with the way she looks now.  I loved the comment ‘People have forgotten I was blonde’.  This is in stark contrast to when she first revealed that she had alopecia, which was when she attended a music award ceremony with a pink Mohican.  Then she looked pretty miserable.

 

I’m not sure if she appears bald in her role as a TV presenter, rather than being interviewed.  If so then that would be very positive.


Thursday, September 11, 2008

9:22PM

my hair is growing back, not much infact perhaps 25 hairs on my entire body, but after having none for 9 years i thought it amazing! Dr's arent that enthusiastic about things, infact, they are always looking for something wrong. i want to know what is making this happen and how can i make ithappen more and stay, but thats to much.

now they think i might have lupus. or i will develop lupus...
more tests, treatments... maybe not just hairloss.

Current mood: blah

Wednesday, September 10, 2008

8:22AM


I’m new to the community, but not new to sporadic hair loss.  I’ve had the occasional bald spot since I was a kid.  It wasn’t until recently that I found out there is a name for it.  I remember at least one time when I was young having a bald spot right along the part in my hair.  My mom was initially concerned, but since the scalp looked healthy and the hair began to grow back, she just let it be.  Mom says she remembers this happening every once in a while.  I remember at least one occasion as an adult where I had a bald spot. 

 

What bothered me this time was that I have multiple bald spots.  Who knows how many times in my life I’ve had multiple bald spots, but they’ve never been noticed by someone else before.  When the hairdresser mentioned them, I was a little bit grumpy.  Back home, I counted four spots without hair.  At 33, I’m a little less understanding and a little bit vainer then I was at 8.  So, I called the Dr and got myself an appointment with the dermatologist. 

 

In the meantime, the four spots from July are starting to grow back, but I have another spot in the back of my head.  I can’t help but feel a little concerned that my hair won’t stop falling out.  Even with the knowledge that this has happened to me all my life, I still worry it might get worse.  When I worry, I start to feel guilty because it’s just hair and if I don’t say anything, nobody would know that I am missing hair.

 

This is where I am today, when I notice that I’m losing a lot of hair I check for spots.  I then monitor the spots to make sure they don’t grow too larger.  I at least want to know if they grow beyond my ability to hide. 

Monday, September 8, 2008

2:30PM - how annoying...

...is it that "alopecia" still gets a little red line under it as if it's spelled wrong/isn't a word in Firefox.

Wednesday, August 20, 2008

2:47PM - advice

I've had AA bad for about a year now (I believe I had it before but it was just one or two spots at a time that would grow back, but I didn't notice too much) - 1/2 - 2/3 of my hair is gone.

I've been on clobetasol through a clinical trial at duke for about 6 months and have awesome regrowth in my original spots, but it keeps spreading and just this weekend I've noticed three new spots. luckily, I had super thick insane hair before, and most of my loss is underneath, so you can't tell if I wear my hair down. but my new spots are creeping up to my part and I'm having to do like a combover thing - it's getting annoying.

anyways, I am getting married in october and was going to wait until after then to do this but since I found new spots, I'm going to be stressed out so I'm sure they'll spread (we're fairly certain that stress flares up my AA - when I lost most of it I moved to a new state to get a new job, which was stressful at first, and my SO couldn't find a job at first - STRESS :) and after seeing recent pictures of myself, I am definitely not happy with how my hair looks (although everyone says they can't tell - I can right?).  and we're paying $600 for a freaking photographer so I figure I better be happy with it since I'll be stuck with these photos for the rest of my life.

so I figured I'd cut off my hair and donate it to locks of love so it'll go to use instead of going down the drain and buy myself a wig. but

1) does anyone know of any organization that will accept bleached hair? LOL won't.  preferably one that deals with AA? I had highlights done back in june and they haven't fully grown out yet, though I have dyed over them.

2) where is the best place to get a human hair wig? I looked in some wig communities on LJ but it seems like most of them were about dreds. while I myself don't mind doing something funky with my hair, my job requires me to work with clients that are highly religious and I can't stand to jeopardize that because of my hair. I don't want to spend thousands of dollars, but I would like something decent that looks like the hair I have now (just more of it).

here is a recent dorky picture of me.

Read more...Collapse )

thanks in advance :)

Monday, July 21, 2008

5:46PM - Periods of Regrowth

For myself I've noticed that in the past I lost hair during the late summer through the fall and right through the months leading up to about Christmas. My periods of regrowth tend to happen in late spring and summer. I'm wondering if anyone else has experienced this. Could it possibly be related to exposure to the sun, since vitamin-D has positive effects on the skin?

Also in response to the previous poster about wheat gluten, I'm wondering if this growth/loss cycle might be due to eating stodgier more carbohydrate oriented foods in fall and winter. My dermatologist in a period of about 6 years never mentioned anything about either theory but I thought I'd just put that out there.

3:58PM - some exciting information!

this may be helpful for some of you. about 3 months ago, I began working at a wheat-free bakery and learned all kinds of information about wheat gluten intolerance, including the fact that some cases of alopecia may be caused by it! I also exhibit most of the symptoms of wheat gluten intolerance (being overweight and always feeling exhausted to name the most obvious and frustrating), so I decided to see if cutting out wheat from my diet would make me feel any better. within 2 weeks, I had amazing amounts of energy and had dropped 1 pants size! then I started noticing the most exciting thing.. for the first time in 4 years, I have hair growing on my head!! true, most of it is no more than white fuzz, but there are a few distinct patches of real, dark hair coming in! the patches in my eyelashes are completely filled in and I have about 4 eyebrow hairs that are almost fully grown. the rest of my body hair has been growing in steadily too, though I'm a little less excited about that, ha. at first I thought I was the only one noticing, but now all my friends, family and co-workers have started commenting on it, so I know it's more than wishful thinking. I have no idea how or if it will continue to grow, but I'm very excited to find out! I know this won't necessarily be true for any of the rest of you, but it may be worth it to try adjusting your diet or asking your doctor for a wheat gluten intolerance test!

-Kristin

Current mood: optimistic

1:47PM - big rant, in need of some kind of help/support

I'm doing this cut beforehand but I can only assume I'm going to swear. If you don't like that then don't clickCollapse )

Monday, March 17, 2008

11:50AM - Buzzed Head

My icon is the me from 6 months ago, before the crazy haphazard hair loss. Yesterday, my friend Steph came over and helped me buzz my hair. I think it looks better this way and more importantly I feel better. Below are a few pictures from the endeavor.

Buzzing Photos> <a href=Collapse )

Current mood: finished

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