A Past-Due Update...Regrowth!

It has been somewhere around six months now since my last post, haha terrible! I had gotten so busy with looking for and moving into a new place, work, side projects, and everything else in life that I just kept putting it off; didn't think it would take me this long. For shame!

A few months ago, I noticed some very fine, super soft, almost baby-hair-like fuzzy growth in the biggest patch I had (the large one in the back). I got excited but tried not to get my hopes up for regrowth so soon, especially because I was still losing hair in other parts at that time. It kept on filling in, got fuzzier and fuzzier, and started coming in the other patches, too. Baby hairs, YESSS!! They continued to grow, and are now what I call my "teenager hairs." They are wild, curly, separate from the rest of my hair, stick up and fly around, and generally do what they want...but they are here! Now all my major patches are full of teenager hairs about two inches long (like in the photo above).

During the first couple months of regrowth, I was still losing hair in other places. No patches like before, just thinning in areas. Lately though, the loss of hair has been minimal. I still lose more than what is "normal" for me each day, resulting in the underneath areas on the sides being noticeably thinner if lifted. But overall, it's back, and I am happy about it.

From what I have learned about Alopecia Areata, there is a significant chance (about 90%) of it all happening again within the next year or two. Even a chance that it will be an ongoing cycle of loss and regrowth for the rest of my life, and a chance of it being worse in the future...but there's also a chance that it will never happen again. As I mentioned in previous posts, nobody can predict what course it will take. So for now, I am just happy that I have it back and will enjoy it while it's here!

I have to say I am SO GLAD that I decided not to pursue treatment. I have not done any kind of treatment at all since the day I was diagnosed and got those terrible shots in my scalp. It seems to have all come back 100% naturally and on its own.

I also want to give a big thanks again to everyone who has been here for me during all of this, especially when it was the most difficult to deal with. I would have never been able to maintain such a positive outlook and attitude if it weren't for the support I've had from my friends and family. I think about that every day. THANK YOU.

Having wild and crazy, disappearing and reappearing hair is just a part of who I am now, and I'm totally okay with that.

To quote a friend of mine from a conversation a couple months ago:
"Your hair is as sassy and independent as you are!"

Maybe it is : )

etsy shop!

I've been getting more hats and scarves as gifts lately. Liz got me this really great lime green floral (the first photo) head cover/scarf online from an etsy shop she found. I just got more from the same shop last week. These are so great because they are already shaped to just put on, then tie the back ribbon parts. Super easy and very comfortable. And they are so cute, much better than any of the other stuff I've found out there for women with hair loss. I love them.

Also, something pretty cool. I wrote the girl who makes these an email after receiving them last week, just to tell her how great I think they are and everything. She told me how and why she started making these types of things in particular, told me she has customers who are chemo patients, people with alopecia, etc. She told me the email made her really happy and said that it gave her motivation to keep making more, and she also offered to give me $15 off my next order. How awesome is that!?

it's www.Mercato.Etsy.com by the way.

Here's my current collection of hats and head stuff, for those of you not in the facebook loop.

http://www.facebook.com/album.php?aid=12870&id=1692506089&l=4e69f51bfc

And as far as an update, it's still doing what it was doing last time I wrote about it. Slow and steady, it seems. We'll see what happens. I'll keep blogging as my cranial adventure continues to unfold.

April 14 - Slow and Steady Wins the Race?

It's been just over a month now since I started showing signs of Alopecia Areata; since the first patch of missing hair was found, and since I was diagnosed.

I am still losing hair, seemingly as steadily as I've been. Like I said last time, not really any new surprise big [blam!] overnight patches. The patches I have are still growing, and the general thinning is continuing. A few of the areas that were thinning out before have turned into patches now, but smaller ones than the others.

My way of 'assessing' the rate of loss I am experiencing is to see how much comes out on my hands during a shower. It's the most tangible way to see on a day to day basis. Before I started losing my hair to alopecia, I would normally have probably about 5 hairs come onto my hands, that I would stick to the shower wall. [I think most girls do this, right?] Nowadays, I have about 40-50 [yes, I have counted] during each shower. It's become sort of a strange ritual for me. I stick them on the shower wall, and like I mentioned before, I study them to see how many have weird root ends on them. Most of them do. It's that and hair on my pillow in the morning, hair falling onto my shoulders during the day...really quite annoying! Oh and I have to liquid plumber the shower and sink drains on a regular basis now. Also annoying.

It does not seem to be slowing down at all for the time being, and I'm definitely beginning to wonder how much more I'll lose this time around. I am not upset about the situation. I'm still feeling very positive and good overall. But I will admit that it gets frustrating at times. It's not so much that I'm losing my hair; I honestly am at peace with having alopecia, and with the very real possiblity of losing a large amount, or even going completely bald. It really isn't that big of a deal, and I've gotten mentally prepared for the 'worst case scenario.' I'm not worried about how I will look or any of that. The thing that gets to me is how unpredictable it is, and that I'm basically just waiting around to see what happens. There is a big part of me wishing if it IS all eventually going to fall out, that it would just hurry up and happen already. I guess I am growing impatient and want it to do what it's going to do, so I can get used to it and move forward. I'm sort of in a constant state of change and acceptance, and since it's an ongoing process, it gets exhausting.

I've been asked if I would shave it all off if it gets to a certain point. The answer definitely is yes. That's actually something I thought about and decided from the beginning. When/if it gets to the point where I have lost a lot, or I don't like how much it shows or whatever, I will shave it off. I would rather have a nice bald head and be happy with it than to have half way baldness and stringy weird hair that I hate. I would feel better with no hair than with half my hair. If it keeps falling at the same rate it's been over the next few weeks, I'll probably do it then. If it becomes clear that I am going to lose most of it anyway, I would rather lose it on my own terms then to just be waiting around.

The thoughts on shaving it, as of right now... I would want to keep a big chunk in front ala Tank Girl. Maybe dye it hot pink or bright blue or something. I think that would be fun. The only bummer about shaving it is that even with it shaved down, it will be patchy. [other people with alopecia who shave their heads describe it as their "map of the world"] So I'll have to cut it all the way down to the skin, which sounds like a hassle to maintain. Maybe I'll just rock the map. Hmm, we'll see.

As strange as it might sound, there have been definite positives to this whole thing. I have started to grow closer to my family through all of this. Even with them being so far away, I feel closer to them then I have in a long time. They have been wonderful about being here for me, even though they can't be here WITH me. My friends have been incredibly supportive, too. I feel it's the not-so-good times that often show you how strong your relationships with people are, and I have never felt so cared for in my entire life. I even have people I haven't talked to in years, and people who I have only recently met passing on huge amounts love and encouragement. It really is amazing.

I just want to thank everyone again for all the support and for helping me keep my chin up!

Oh and p.s. - my hat and scarf collection is growing like wild fire! It's awesome :)

March 29 - Family History!!!!!!!

I just learned that one of my uncles and my great-grandmother had Alopecia!

When I first realized I probably had it a few weeks ago, I asked both my parents if there was any history of alopecia or other autoimmune disease in the family. They both said there was none that they knew of.

My mom just told me about a conversation she had with my aunt a few days ago. My aunt brought up that one of their brothers had alopecia, as did their grandmother. My mom's memory was jogged, and she started talking about all of these things she remembers from when she was a kid. She told me about her brother having very thin hair when he was young, and that he lost some in patches that later grew back. He still kept a lot of hair, but she remembers her grandmother not having much at all. She also talked about going on visits and seeing her putting on her hairpiece.

Even if it's just a little family history, I think there's a bit of comfort in gaining SOME sort of knowledge about this, since there's such little information out there about this disease in the first place.

Hearing the stories about my uncle and great-grandmother made me feel strangely happy.

March 25 - An Update and Answers to Some Questions

Here are the most recent photos from today. I'm still steadily losing hair, but not in large patches like last week when it started. It seems to be that the existing patches are slowly expanding, and I am getting a bunch of scattered small areas, as well as overall thinning across most of my scalp.

When I shampoo and rinse in the shower, each time my hands pass through my hair I end up with a bunch of strands stuck to them. I've gotten into the habit of examining them, seeing how many are 'exclamation point hairs', as they are called [short, broken off hairs that are narrower closer to the scalp, appearing like an exclamation point] and how many are normal hairs that have shed. I'm finding it interesting, like looking at the patterns of loss on my scalp in the mirror in the morning. Weird? Maybe a little, haha.

It's been two weeks today since I found the first bald spot. Sometimes it's really weird to think about, and there are moments where I'm slightly in disbelief; it was just so sudden! I am still holding strong, though. Feeling pretty great, actually. These last couple weeks have been good.

I have the most amazing friends, family and boyfriend anyone could ever ask for, especially during a difficult time. Everyone has been so supportive and wonderful. THANK YOU ALL SO MUCH!

I'd like to take a few minutes to answer a few questions I've been asked several times this week:

"How long will you let it go before you start wearing something to cover your head?"
You know, I honestly am not sure. As of right now, it doesn't show much. The largest spots in back are not too obvious unless I move my hair around (fussing with it, being out in the wind, etc.) There is one patch right on the back of where my part is, and the front section where it's been thinning shows, but it doesn't bother me. It's really not that bad at this point.

I'm not feeling self conscious about it. For now, I'll make sure to wear something when out in the sun, because my scalp gets uncomfortably hot very quickly. Aside from that, we'll see how much longer it'll be before I make head coverings a regular thing. I kind of want to enjoy my hair normally while I still have it, and not cover it all up right away because there's no saying how long it'll last.

I am starting to think about it a lot though, and am getting more and more excited about getting hats and head scarves. I've found several hats I really like, and I think head scarves are very pretty. In some ways I sort of think having an awesome collection of hats and scarves is just as good as having hair. With different styles, patterns, and ways of tying them, I can have something totally different every day. That's pretty cool, especially seeing as I've never been one to 'do' anything with my hair anyway; it's always the same. So this seems like it could be a lot of fun.

Oh, and today I received an unexpected package at work. What was it, you ask? It was one of the hats I found online that I liked so much. My brother had it sent to me, because he's the best! Thanks again, Ed! I love it! [the one in the photo above]


"Why put this all in a blog online, for the world to see?"
Well...This isn't something I can keep to myself even if I wanted to, since it could end up being such an 'obvious' thing. Right off the bat I decided not to be shy about it. There is the potential for quick and drastic change in how I look, so I figured I'd just put it all out there. I much prefer it this way; it seems less awkward to just talk about it openly and let everyone know what's going on. That way it's not shocking or surprising to anyone who hasn't seen me in a while. Also, writing about it is very cathartic for me. Sitting down to think about what I'm feeling so that I can share with everyone has been a great way for me to deal with what's happening. I'm very comfortable talking about it and am not ashamed or embarrassed. It's just how things are, why not talk about it? If you want to ask me any questions, in person or online, please don't hesitate. I'd love to answer them.

"I still don't understand why you don't want to at least try any of the treatment options you've found out about"
What I've been feeling about NOT doing treatment (which I wrote about in my post on the 18th) still stands. Maybe even more so now than a week ago. I've done a ton of reading about the treatment options and about other people's experiences. Though many have had success regrowing hair with treatments, almost all I have read about have ended up losing it again. A lot of them seem bitter and utterly sad about having Alopecia, and are constantly stressed out and unhappy. Then there are the side effects. And the fact that these treatments are pretty much experimental.

So, to put it simply: I am not so desperate for my hair to grow back that I am willing to put myself through that kind of stress and emotional strife. [I am not sick. I do not feel any pain or discomfort. If that were the case, my decision might be different. But as I said before, there are no effects on my health other than the hair loss] It's not worth it to me for something that is purely cosmetic, especially when the odds of it coming back on its own are so good.

[I have been looking into natural/holistic type remedies for Alopecia. Once I find out more, I might give something along that route a try. We'll see.]

Yes, I would love for it all to grow back, of course! I would be very happy if it did. I miss what has already gone, and will miss whatever else falls. But I am not depressed about it. I'm not unhappy having this condition. In fact, I'm no longer even afraid of how much more hair I may end up losing. Half of it? All of it? Who cares?! I'm extremely happy with my life, with or without Alopecia.

And to be quite honest, I don't mind being different. There's nothing wrong with that, is there?

I just see it as a challenge; an obstacle to overcome. I feel like Jack Sparrow standing at the huge open mouth of the Kraken. :)

Anyway, that's it for tonight. Thanks to everyone who took the time to read this!

March 19th - Fingernails

My thumb nails have been naturally growing in very thick and bumpy/in ridges for many years now. [definitely not my entire life, but pretty much for as long as I can remember at this point] Some of you who know me well will know what I am referring to, and I have been asked about it a lot. It was never of any real concern though, so I've never had it checked out and have never known what it may be. It's always been "I don't know, they just grow that way."

When I started learning about Alopecia, I read that unusual nail formation is often an associated symptom. I've found more information on this tonight. [Mine grow in with pretty severe "pitting" as they describe]

It's very interesting to finally know what this whole funky thumb nail business is about; I would have never made the connection.

http://www.alopeciaareatainfo.com/alopecia-areata-nails.shtml

March 18th - Treatment?

Some of the spots have spread a bit since the last post. I'm starting to become very fascinated by the 'patterns' of hair loss I am experiencing. It's just so random and weird! Sort of like rivers and lakes throughout my scalp. Hmm.

Anyway, here are my thoughts on treatment:
At the moment, I am leaning very heavily toward the side of not doing it. Yes, it could help spots to start to grow back in faster, but in the mean time I still have hair falling out in other areas. They still can't prevent or stop more from falling. Then I just have to get more treatment in the new spots. (I mean even right now, there is a lot of loss that is in other places I didn't get treated on Tuesday) I'd be worrying about whether it is helping or not, having to go to doctor's appointments all the time, thinking about the shots and everything...and after all of that, even if the hair does grow back, it might end up falling out again. I really feel that it would cause me much more stress than just not doing it. (Even only thinking about doing treatment makes me feel anxious and stressed out vs. thinking about not, which makes me feel good, actually) And honestly, I really don't like the idea of taking things like steroids and basically forcing my body to do things it doesn't do on its own. I was prescribed a topical ointment the other day, too. I looked up information on it, and the side effects alone are enough to make me not want to use it; I'm going to pass on that as well.

I am going to continue to find out more about what my treatment options are, read people's stories and maybe see what has worked for them. The ones I have learned about so far are definitely not right for me, but maybe I'll find something that I would feel comfortable trying.

Right now I would rather take it as it comes, learn to be okay with the situation, and just be happy. There is such a huge chance it'll grow back on it's own, anyway. [It would take longer than if I had successful treatments, but I'd much prefer being free of anxiety and discomfort while it grows back.] And if it decides not to come back, so be it!

I have so many great things going in my life, I am not going to let this ruin any of it. Aside from the hair loss, the Alopecia has no affect on my health whatsoever; I am perfectly normal and healthy. I mean yeah, it sucks, and I won't pretend that it doesn't. But I think I can deal with saying goodbye to some hair, while living my life just as happily as I ever have.

On a side note, in response to me commenting on the statistic that only nearly 2% of people get Alopecia, Taylor said, "with those odds, winning the lottery is next!" Yeah...I think I should start playing now, hahaha!

Thanks for all the support, you're all so amazing <3

March 16th - Diagnosis

I was diagnosed with Alopecia Areata by a dermatologist today. It's a condition that causes unpredictable, rapid hair loss. It literally started overnight, out of nowhere. I noticed a smooth bald spot about the size of a half dollar on the back of my head Thursday night (March 11th), found another almost the same size the next morning, and noticed more and more smaller patches and lost hair over the next couple of days. I did a lot of research, and according to my symptoms came to the conclusion it must be Alopecia Areata.

I had an appointment and getting a diagnosis today was the first step to me really accepting this condition and beginning to learn to live with it. Nobody can tell how much more hair I will lose, or at what rate. It is completely unpredictable, and the course it takes varies from person to person. It is very possible all of my hair will regrow on its own, its possible I will lose all of it, or maybe it will regrow and fall out again, nobody knows. That's probably the most frustrating part of it, is just not knowing.

I had some treatment done today, a bunch of steroid injections directly into my scalp [ouch!] which will not prevent or cure the alopecia; it could help in speeding up regrowth, though. I honestly am not sure whether I am going to continue with the treatments. There's a lot going through my mind regarding that, and I feel it might be best for me, emotionally, not to pursue more treatment. For now I am going to wait a couple of weeks, start to adjust to this new part of my life, and get over the initial shock of what's happening before I make any decisions regarding treatment. I will keep everyone updated on my thoughts/feelings about that once I come closer to making some solid decisions.

In the meantime, overall, I'm really feeling ok about all of this. I am maintaining a very positive attitude and am not letting this bring me down. Not to say that there isn't a part of me that is very sad; I'd say I'm at about 70/30 right now of feeling ok vs. feeling sad. Not too bad, I'll take it! I have the most amazing people in my life right now who are giving me all of the love and support I need to stay strong.

I feel fortunate that, at this point, the hair loss is not very obvious with my hair combed down as usual. The patches are only very visible when I lift/part my hair. I have, however found some really cute hats I'm actually kind of excited about getting soon if I need them :) And the prospect of a bright blue wig with bangs sounds really fun!

I've even decided that if I end up with significant hair loss, for Halloween I will just shave it all down but keep some long in the front and totally rock the Tank Girl style...I already wanted to make a Tank Girl costume this year and this could actually make it the rockinest, baddest tank girl ever!

If you'd like to learn more about Alopecia Areata, there is a ton of information online, maybe start with this to begin with to learn the basics:
http://www.medicinenet.com/alopecia_areata/article.htm#3whatare

Feel free to leave comments or questions; I have absolutely no qualms about discussing this. Talking about it and having it all out in the open is making it so much easier for me to deal with.

Thanks for reading, Peacock out!