I went to an allergist today because I have really been having a lot of skin issues, itchiness, eczema,  a lot of contact dermatitis around my mouth, itchy eyelids, itchy eyes and of course my usual asthma. I am always apprehensive about going to a new doctor because the patient form you have to fill out always has that place that asks you to list the “current medications” you take, and putting “Aldactone” on there always triggers the question, “You take Aldactone? What for?” So I get nervous going to new doctors.

Off I go to the consultation, the doc doesn’t even ask anything about the Aldactone, moving full speed ahead, talking about my allergies.. blah blah blah. Then he gets to the part where he wants to suggest the asthma/allergy medication, SINGULAR. Well I already know from previous searches on that medication, from previous docs trying to get me to take it, that some women complain that it causes hair loss! I had resolved myself into taking Advair ( http://www.womenshairlossproject.com/hair-loss/advair-muppets-poor-health-decisions/ ) because I had previously taken that without any issue to my hair, but this? The unknown?

I had to bring up my concern with the doctor. I HAD to let him KNOW, what was going through my head. So out with it, I told him that I suffer with hair loss, hence the reason I taken the Aldactone, and that I had read on the Internet that it can cause hair loss. He seemed to not focus too much on my personal hair loss situation, which, was good, but then he sort of made light of it, in a quasi mocking way “Well if it’s on the Internet, then it has to be true.” He said he never heard of an instance of singular and hair loss. Well neither did my gynecologist that gave me one of the highest androgen pills on the market, that started this whole mess. He proceeded to pull out the insert of the singular medication and looked in the side effect area, and pointed out that “hair loss” isn’t listed there. Hummm, that doesn’t mean it can’t happen or hasn’t happened to people. I don’t think most doctors know how to react to a woman with hair loss, in all fairness he was a decent doctor, he spent a lot of time with me and genuinely seemed interested in helping me treat my allergies/asthma. This is just a separate and unfortunate issue.

But, back to the point, the title of this post. When I had to bring up that “I HAVE HAIR LOSS,” I felt so small, so humiliated, like I was running around the office with my shirt off or something, actually I probably would have preferred that over telling him I had hair loss. I was so down when I left the office, so defeated. I didn’t feel liberated or empowered for sharing that tid bit of information, I felt ashamed. It saddens me to think that no matter how far I feel I’ve traveled, I am reminded that it isn’t quite far enough. I know I should not be ashamed of my hair loss, yet I had those feelings anyways. I guess it’s time for a little self-reflection.

Hair loss impacts our lives in more ways than most people could possibly imagine. It is part of the equation for many things, including choice of outfit (if you are fair haired like myself, black shows the fallen hair the most) time allotted for getting ready, deciding to even go out in the first place, and enduring the torture of hair prep and frustration. Frequency of showers, frequency of combing, hair up, hair down etc. But even worse than that, I have found it has crept into matters of treating my health conditions. I have fairly not-so-great asthma and I have avoided using the suggested and prescribed preventative treatments because I feared it could *possibly* worsen my hair loss condition. So, I always went without and lived with my asthma not really being fully controlled. Back in 2004 I was prescribed Advair by my allergist and I took the plunge and began treatment. That stuff is awesome. I mean seriously, for the first time ever I knew what it was like to not have asthma. I could do all the things that normally causes flair ups, like run, laugh like crazy or even cry, all without having to reach for my trusty inhaler.

Well as the months past my voice began to deepen. First it was raspy, then sultry like Demi Moore, then it turned Kermit The Frog. I mean seriously imagine trying to interact in society with hair loss and a voice that sounded like you came straight from the Muppets. Well shortly after the Kermit stage, I lost my voice completely and it got to the point where I didn’t even know if words could come out of my mouth when I spoke. So I stopped taking it. I do want to point out that all while I was taking the Advair I did not notice any worsening of my hair loss, nor when I stopped it. But bye bye Advair and months later, hello voice.

So fast forward to today. It seems that over the last couple years my asthma has taken a turn for the worst and I find myself using my inhaler more and more. I also find myself at the local urgent care, more and more. And even though I am frequently told to get on a preventative treatment such as Advair, I refuse. Why? Well now I have it in my head that *maybe* just *maybe* it could make my hair loss worse. I can’t believe how stupid that is. I opted to not properly treat my asthma because I was afraid any medication I took would worsen my hair loss. I am seriously embarrassed admitting that. Well last night was the last straw. My asthma was so bad I nearly landed myself in the emergency room, I made it through the night and went straight to the doctor at 8:00am. [click to continue...]

I never really stop to think how much effort I put into trying NOT to think about my hair loss and how exhausting not thinking about my hair loss actually is.

I avoid mirrors, strong overhead restaurant lighting, I turn the bathroom lights off before going in (in my house). I’d do it in public to if I didn’t think I’d get tons of grumbles and nasty comments from the women already in there. Ha! Unless they had hair loss, then they’d give me a high five. Typically when I need light I use softer lights that are sort of dimmed.

Up in the morning, early 5:00am start to the day. I shower and I comb my hair quickly trying to get past the torture. Shower is always fun pulling the hair out of all sorts of odd places including my deriere. Oops stuck between my fingers, rinse it off, rinse it off or paste it on the bathroom wall. Always fun to look at after. Comb, scoop, comb, scoop, hair into the toilet. I pull my hair back in a ponytail or up in a clip to avoid feeling the hair fall all day. However, (as thin hair ladies know) the clip can hurt since it sits so close to the scalp with none of that pesky “hair padding,” it can become quite itchy and bothersome, so I loosen it up to make sure it’s perfect and set for the day. Oops now my hair looks flat on the left side. Do it again…oops now it’s flat on the right. Oh my gosh I look like a human ice cream cone, with no hair on the sides and a little on the top, the shape of my head has me looking like a Mister Softee. Do it again, darn it now my gaping center part is shining for all the world to see. Hummm I don’t remember it being that thin before. Maybe I should use the blow dryer some more. Blow to the left, blow it to the right. Apply clip strategy again, ah this “style” is okay. My simple clip style takes longer than it looks, same for the ponytail. This hair over that hair, brush here, brush there, trying to maximize every strand. Volumizing shampoo, volumizing conditioner, volumizing spray, volumizing mousse, plump this plump that. Poof it’s still flat. Part my hair one millimeter to the left of its normal part, nope, one millimeter to the right, yes that’s just perfect. Now I can begin my day. I glance at my watch, I wonder what activities are left to do on this Saturday at 10pm.

Happy Sunday Ladies! [click to continue...]

I got up this morning, walked the dog, came home, fed the dog. Threw on some workout clothes and hopped down to the gym (garage). I put my earphones on, I turn the ipod on, and I started the treadmill. The first song queued up is one of my favorites, and it just puts my mind at such ease and makes me smile. The song only lasts three minutes and thirty five seconds, but that’s enough. Enough to put my mind in the right mood and enough to set my day up with possibility. I of course played the song over and over since I wanted to draw out as much serenity as possible I jogged along and felt content and… dare I say… happy. Sure my hair is falling out, it fell in the sink, it fell in my coffee, stuck to my sweatshirt, but I was happy. In that moment I felt right.

I think we need to take more time for ourselves, to do the things we enjoy and remind ourselves of living. It’s way to easy to obsess about our hair loss and worry about the future, but in doing so, we so frequently miss out on today, the beauty around us, the beauty within.

So now I know you are dying to know what song I was listening to. Well here it is for your listening pleasure (just click on the play button below) and your three minutes of freedom:

“Put Your Records On” By Corinne Bailey Rae - Best 0.99 cents I ever spent on iTunes!

Audio clip: Adobe Flash Player (version 9 or above) is required to play this audio clip. Download the latest version here. You also need to have JavaScript enabled in your browser.

Wishing you all a beautiful and HAPPY Friday!
Enjoy life, enjoy freedom, enjoy being you.

Dear Hair,

I am so mad at you, and hurt by you for what you have done to me. I sit here in my pajamas and robe, crying uncontrollably from your selfish desire to leave. Have you no consideration for me? For my life , for my sanity? For 21 years you deceived me, tricked me into a false sense of security thinking you would be with me for life. What did I ever do to you? Was it lack of appreciation?

Now for 9 years you let me try to do different things to win you back. I gave you all sorts of things…. I even prayed for you and meditated for you! And what do you do? You tease me. You stay for awhile then run away. Stay, then run away. Now you’ve almost taken all of your things and left. What am I left with? An emptiness and wonder for what I will do without you.

How did I ever depend on you so much? You logically seem so insignificant, yes I SAID it, insignificant! What do you do? You just sit there, waiting to be tended to and pampered. I have other things more precious than you. Health, Sight, Hearing, Legs, Arms, and Heart.  I know you’ve made up your mind already, and that there is nothing left I can give you to stay. So I guess I should work on moving on as well. But… if you want to stay, I’ll gladly take you back! So let me know at the next shampoo, k? 

Yours Truly,

Mind, Body, & Soul

Written by Mary

Hi everyone,

I’ve just joined and I want to share my alopecia journey with you. This may be longer than it’s supposed to be, but I hope my experiences will help someone. If you want to put a face and voice to this narrative, please check out my YouTube video entitled “Alternatives to wearing a wig”.

I had patchy alopecia for 7 years, beginning out of the blue in my late forties. The round spots were always confined to the back or sides of my head, and were easily hidden under my thick brown hair. The frequency of the spots increased in the last few years, but they always filled in after monthly cortisone injections. My daily routine was checking my scalp in the mirror for new spots and for the status of old ones, and applying cortisone cream. I always worried about the spots moving to places on my head that would show. But, after so many years, I also sort of figured I’d never lose all my hair. Wrong.

Exactly a year ago, my hair loss began to rapidly progress. New spots appeared on top where there had never been any; old ones enlarged to take up most of my scalp and merged with others. I obsessed about losing it all, and was often depressed and crying. By January 2008, I had as much bare scalp as I had hair, and the bald areas were too extensive for cortisone injections. We took some final photos the night before I shaved my head on January 30, 2008. I saved some pieces of my hair. The photo you see was taken right after my head was shaved, and still shows stubble and my real eyebrows and lashes. I have no eye makeup on in this photo; my eyes were dark and my eyebrows very distinctive.

I felt better immediately! No more scooping up hair from the floor every day. No more examining my head to check the bald areas. No more crying over the spreading bald spots. And, it was much more comfortable under a wig or scarf than when I had the patches of hair. Shaving it all off gave me a feeling of control.

Via a local support group, I heard about a casting call for “Shear Genius” on Bravo, and was one of 8 bald women with alopecia featured on an episode that was filmed the end of March. At the taping, I still had my eyebrows and lashes, but they were gone by mid-April. The show aired July 23, and many times after that. (You can see the whole episode on YouTube under “Shear Genius 2 Episode 5″.) It was a great experience meeting the other women, all of whom had been bald for many years. I’ll probably never wear the wig from the show - way too heavy and thick, and I picked a color that wasn’t a good choice. [click to continue...]

As I was surfing the net this morning I came across this little, almost obscure article. Of course, since it had to do with hair loss, I clicked it, and to my amazement (although I shouldn’t be surprised) here I am reading about the Hepatitis B vaccine and HAIR LOSS!

I am posting the links below to the articles that I read this morning so you can go check them out. It pisses me off that hair loss is NOT one of the side effects that they warn about when giving people the vaccine. Studies are being done about the psychological effects of hair loss and women and yet no one thinks that announcing that it does in some cases cause hair loss would be important for US to know?

Have any of you ladies been vaccinated? Now the reports that I have read predominately talk about the Hepatitis B vaccine, but can we be sure that this is the ONLY vaccine that causes hair loss? How about the flu vaccine? or the one for pneumonia? How about HPV?

Can some of you ladies put my fears to rest? LOL I am so traumatized by this, that I can’t even write properly about it! Can you lovely ladies each tell me when you first started noticing your hair loss and if it coincides with ANY type of vaccination you may have received within that year? I am really curious and mortified at the implications of this!

How many college students were required to get vaccinated and THEN started to notice that their hair was falling out and thought it was just STRESS!

How many women were entering the nursing or medical profession and started losing their hair around the time of the required vaccinations?

How many teachers are out there, that are required by law as well to be vaccinated before they begin teaching? [click to continue...]

I wish this post would be something more uplifting, but that isn’t the way hair loss always works is it? I sit here during my ninth year of hair loss all puffy from the crying spree/ meltdown I’ve just endured. Why today, why now? For the most part I have really accepted my hair loss and the thinness of my hair. But I guess the pain, sadness and frustration still floats close to the surface even though I usually keep it under wraps pretty well.

So what the heck happened?

It’s been over a year since I’ve been in for my annual hair cut. My hair is way too long for the thinness that my hair currently has. I can’t go back to the salon, my hair is too thin and I would be way too self conscious. I previously confided my hair loss to my hair stylist and she was understanding and careful not to tug on my hair and also let me comb it out after it was wet. But that was over a year ago and I’m even too embarrassed to have her cut my hair in my home. On a previous visit she had told me she could do that for me, which I thought would be great, until now. Here I am, stuck, helpless and tired.

Who can just cut my hair? I need a stylist who has hair loss, who is sensitive to the issue and who lives in Los Angeles and who can come over to my house, OR a stylist who works for a salon that has private rooms. I was recommended a local place by a friend in the network (Thank you Lisa)  but it is a hair replacement salon, and I am afraid that after they get a gander at how thin my hair is that they will want to push me toward that direction of adding hair to my own,  and I’m not mentally ready for that yet. I just want a haircut, why can’t I get a haircut? [click to continue...]

I wrote this in response to Lisa’s recent blog entry “Lost Cause,” and thought it was worth reposting here as well.

Dear Lisa,

I can so deeply internalize your struggles. Is this drug helping… Is it making it worse? There are so many unanswered questions about women’s hair loss. This may sound a bit odd, but I think the longer I’ve lived with hair loss the easier it has gotten for me. I have just a speckle of the hair I had 4 years and certainly 9 years ago, but somehow I just deal better. Those years I didn’t get out of bed half the time, sat in the shower crying and had my mind set that my life was over.

It wasn’t over.

I awoke this morning and fastened my hair tie (wearing my hair down and *feeling* feather hairs is more of reminder) grabbed my coffee and the day begins. I don’t dwell on the looking at myself anymore and I suppose that is the difference is in my hair loss life from not too long ago. I can easily get wrapped up in the balding spot and thinning areas I meticulously cover up with my little Houdini wand called the “comb.” But it serves no purpose. I am doing everything I possibly can and I rest easy knowing I tried EVERYTHING. They say “God helps those who helps themselves.” I’m certain I fall under that category, I’m still waiting to be freed from the shackles of hair loss. “God.. I’m ready now”

I’ve prayed at home, at the chruch, to St. Jude, to the high heavens, to anything holy and divine that could save me and save my life. Clearly it appears that being a woman with hair loss in this day and age requires an “Act of God” for recovery… “God. I’m ready now.”

The truth is, in some ways my prayers have been answered. No I didn’t grow the hair back I so intently prayed (my exact words where “please let my hair grow back in thick and strong”) but I wanted my life to be saved, and it was. Through better coping mechanisms, new perspectives and improved attitude I can at most times regard my hair situation with some indifference and strength. Huge milestone, “Thank You God.” [click to continue...]