Alopecia World
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Hopeless
So this is my first blog on here. I A friend suggested I blog to get out these feelings of helplessness. So here goes.
At the end of June this year, I discovered a small quarter sized bald spot on the back right side of my head. ( A coworker pointed it out.) I ran to my computer and took a picture of it since it's in the back and I can't see it. Naturally, I freaked out. I called a hair replacement specialist, who was kind enough to see me on a free consultation. He took one look and told me it was Alopecia Areata and that what I needed was a dermatologist. I actually have a regular dermatologist that I love, and have been with her for over ten years, as I have battled skin dermatitis my entire life. I went to see her, and she confirmed it was AA. So she shot me up with injections and sent me on my way. But I'm the type of guy who needs answers to everything, so I immediately got online and did mountains of research. There was so much conflicting and contradicting information. I was beyond confused. The only thing I did find consistent everywhere was that this was unpredictable. and different for everyone.I figured this would be a passing condition and that it would go away.
About once or twice a week I'd take a picture on my computer to monitor the status of the condition. To my surprise, it was growing, slowly. I kept up injections about every two or three weeks. The spot still got bigger. And bigger. And bigger still. Then about the time of my second or third visit, hair started to sprout in the center of the spot where it started. But the edges of the spot continued to grow still. And still, I believed it would pass. My dermatologist is awesome, and she has been extremely careful with the words she uses. She explained that AA was more common that people thought, that she had treated and is currently treating numerous patients with the same condition. She told me to not stress, think positive and that 80% of people will go into a remission within about 8 months to a year. Great.
My hair was always shaved along the sides and back, and really long on top, my little bad ass mohawk. Because the back is shaved down, as my hair grew out, the spot was more noticeable. And i continued to take pictures to monitor the situation. And still, slowly it grew. Little micro spots would form near the main spot, and eventually they would join, making the spot bigger. And bigger. I became so aware of it, that I could physically feel the spot on my head. I would run my hands over it lightly, and sometimes see hair on my fingers. Then another picture confirms it's still bigger.
I went back for my regular injections two weeks ago. Good news. Finally. After measuring the spot, (6.5 by 5 centimeters), my dermatologist yells "YES!" The growth had halted and it was the same size as the last appointment. She told me I had baby hairs growing in randomly and that the center was growing in thick and connecting with the outer edges. Great news. I run my hand over it and no more hair. I beat it.
Then, late last week, hair in my hands again. Alot of it. Take another picture, and it looks the same. So I finally decided, Screw this. I'm shaving all of my hair off. This way I'll stop worrying about it. I buzzed my head. Everyone loved it. Say I look tough lol. I hadn't looked at it in a week. It's going away, after all. My friends are all sick of hearing me whine about it. They all say, it's just hair, it's no big deal, you look fine, it will go away. It feels fine when I run my hand over it. I feel hair. So excited about this turn of events, I take another picture.
And that's when I get punched in the face, kicked in the stomach and thrown into the gutter. It's BIGGER. It's still growing. And it has another little spot orbiting near by, this time the size of a nickel, that I know will join and make it even bigger. And here's where I am now. All the hope and positivity I had mustered up over the past few months - gone in an instant. I feel like crying. I don't know what, why or wtf is happening to me. I made an appointment to see a physician for blood work to rule anything else out. My Naturopathic doctor started me on a supplement regimen. I made an appointment for a second dermatologist. I'm sitting here typing this with frickin' tears in my eyes, while trying to work at the same time. My stomach literally hit the floor. I don't know what to do. And honestly, nothing is helping. I can feel myself slipping into a darker place and no matter how much I smile on the outside, it's getting worse on the inside. Everywhere I look to in regards to Alopecia, the vast majority of people are AU or AT. Is this my fate? I don't know. I know that for today, this is too heavy to handle.
Sorry for the long rant. I had to get it out. And I still don't feel better. I hate this.
At the end of June this year, I discovered a small quarter sized bald spot on the back right side of my head. ( A coworker pointed it out.) I ran to my computer and took a picture of it since it's in the back and I can't see it. Naturally, I freaked out. I called a hair replacement specialist, who was kind enough to see me on a free consultation. He took one look and told me it was Alopecia Areata and that what I needed was a dermatologist. I actually have a regular dermatologist that I love, and have been with her for over ten years, as I have battled skin dermatitis my entire life. I went to see her, and she confirmed it was AA. So she shot me up with injections and sent me on my way. But I'm the type of guy who needs answers to everything, so I immediately got online and did mountains of research. There was so much conflicting and contradicting information. I was beyond confused. The only thing I did find consistent everywhere was that this was unpredictable. and different for everyone.I figured this would be a passing condition and that it would go away.
About once or twice a week I'd take a picture on my computer to monitor the status of the condition. To my surprise, it was growing, slowly. I kept up injections about every two or three weeks. The spot still got bigger. And bigger. And bigger still. Then about the time of my second or third visit, hair started to sprout in the center of the spot where it started. But the edges of the spot continued to grow still. And still, I believed it would pass. My dermatologist is awesome, and she has been extremely careful with the words she uses. She explained that AA was more common that people thought, that she had treated and is currently treating numerous patients with the same condition. She told me to not stress, think positive and that 80% of people will go into a remission within about 8 months to a year. Great.
My hair was always shaved along the sides and back, and really long on top, my little bad ass mohawk. Because the back is shaved down, as my hair grew out, the spot was more noticeable. And i continued to take pictures to monitor the situation. And still, slowly it grew. Little micro spots would form near the main spot, and eventually they would join, making the spot bigger. And bigger. I became so aware of it, that I could physically feel the spot on my head. I would run my hands over it lightly, and sometimes see hair on my fingers. Then another picture confirms it's still bigger.
I went back for my regular injections two weeks ago. Good news. Finally. After measuring the spot, (6.5 by 5 centimeters), my dermatologist yells "YES!" The growth had halted and it was the same size as the last appointment. She told me I had baby hairs growing in randomly and that the center was growing in thick and connecting with the outer edges. Great news. I run my hand over it and no more hair. I beat it.
Then, late last week, hair in my hands again. Alot of it. Take another picture, and it looks the same. So I finally decided, Screw this. I'm shaving all of my hair off. This way I'll stop worrying about it. I buzzed my head. Everyone loved it. Say I look tough lol. I hadn't looked at it in a week. It's going away, after all. My friends are all sick of hearing me whine about it. They all say, it's just hair, it's no big deal, you look fine, it will go away. It feels fine when I run my hand over it. I feel hair. So excited about this turn of events, I take another picture.
And that's when I get punched in the face, kicked in the stomach and thrown into the gutter. It's BIGGER. It's still growing. And it has another little spot orbiting near by, this time the size of a nickel, that I know will join and make it even bigger. And here's where I am now. All the hope and positivity I had mustered up over the past few months - gone in an instant. I feel like crying. I don't know what, why or wtf is happening to me. I made an appointment to see a physician for blood work to rule anything else out. My Naturopathic doctor started me on a supplement regimen. I made an appointment for a second dermatologist. I'm sitting here typing this with frickin' tears in my eyes, while trying to work at the same time. My stomach literally hit the floor. I don't know what to do. And honestly, nothing is helping. I can feel myself slipping into a darker place and no matter how much I smile on the outside, it's getting worse on the inside. Everywhere I look to in regards to Alopecia, the vast majority of people are AU or AT. Is this my fate? I don't know. I know that for today, this is too heavy to handle.
Sorry for the long rant. I had to get it out. And I still don't feel better. I hate this.
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Comment by Dominique Cleopatra on October 8, 2009 at 4:08pm
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The vast majority on this site may be AT or AU or extensive AA (like me) but most people get one or two small spots and recover within about a year, I believe. Those people aren't on here for the most part--so that accounts for the large amount of severe cases you are being exposed to. Even I have had some encouraging regrowth in the last several months after being almost completely bald, and hardly any noticable fall-out lately. Chances are this too shall pass for you. Just try not to obsess over it. I believe what we intently focus on tends to manifest itself more frequently in our perception. Look on the bright side, at least you're a guy.
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Comment by Mary on October 8, 2009 at 5:07pm
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Shaving was the best thing I did for my AA. I didn't cry daily anymore as I picked up hair off the floor, or saw the bald spots getting bigger. Yes, it's the more severe cases that you see on AW. But, just know that what seems like it would be the end of the world - to lose all your hair - hasn't been the end of the world for those of us who are AT or AU. I remember wondering how I'd make it if I lost all my hair. Then I did, and after a rough transition, I've accepted this new woman I see in the mirror, and life is good. Hang in there,
Mary
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Comment by Natalie on October 8, 2009 at 5:44pm
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Hi Scott :) Please know that you are not alone and that I have experienced a very similar roller coaster of emotions along my journey as well. I know how it feels to not want to get up in the morning because you are so miserable, or how I would be driving and then just break down crying in middle of the day. I ended up seeing a doctor who prescribed me a lose dosage anxiety pill, and it has certainly helped me cope. Now, I'm not necessarily saying that everyone should take an anxiety pill, but for me it helped me to reach acceptance with my alopecia. I was able to get over the sadness and worry and learn how to move on. Please let me know if you ever need advice - I would love to help :)
Take care,
Natalie
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Comment by Jeff W on October 8, 2009 at 8:23pm
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Ernesto, Sorry to hear the AA is hitting you so hard. Please don't lose hope! You are doing all of the right things medically, and getting bloodwork and second opinions is very important. I think lot of us here can relate to your story, and thanks for sharing it! There truly is no way of telling what the course of your AA might be, but as your derm and others have pointed out, a very large percentage of AA cases will spontaneously go into remission. 10 months ago I was going through what you are going through, and now most of my hair is back and improving steadily. I've known a number of others who have also had regrowth/remission and you could just as well be the next one. It does take time, so maybe monitoring your spots too closely isn't the best approach for your psyche. The turnaround (which we are all hoping for!) will likely be very slow and gradual even in the best of cases. Like yourself, mine got worse for many months before it started getting better. So please be patient - and keep the hope going! Honestly - I know it's not what you want but you really look pretty good with the buzz cut. So wear your hair buzzed until this resolves and enjoy the things you normally enjoy in life! Don't let this beat you down. If you need support there's a lot of us here for you! Best Wishes!
Jeff
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Comment by John M. on October 8, 2009 at 10:19pm
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Ernesto - glad to you took a moment to get this off your chest ;-) As we talked about in chat today, I know all too well what you're going through. There's a LOT of good advice in this thread already (we all can't be wrong). I hope you're also doing part 2 of my advice today and having a chill out evening with some wine and friends. I know alcohol is not the answer, but occasionally it's a good help. Believe it or not, I'm also happy that you got your emotions out with tears...sometimes that really helps. Please hang tough, try to be patient, and this will run its course. We're all in the same boat with you man, and we're all pulling for one another. You are NOT alone in this.
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Comment by JeffreySF on October 9, 2009 at 12:27am
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We are all here for you. Dont feel helpless or alone. We all know what you are going through.
Know that this can go away. Hang tight.
Jeffrey
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Comment by Robert on October 9, 2009 at 4:14am
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There are so many people on here (including me) who sympathise with you and what you're going through. You have been very brave to open up your feelings and post your photos. I hope this helps your healing process and acceptance of this conditon. The thick dark regrowth is a really positive sign so hang on to that.
I've got to say that this condition has made me the most anxious and depressed that I have ever been in my life, and adjusting to/accepting it is SO hard.
We will beat this. Hang in there.
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Comment by kimberly dean on October 9, 2009 at 4:52am
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Just read this blog Ernesto. Losing so much hair on our heads is very confronting. I am not sure if I'll ever like being bald.
I like your style of writing. Keep blogging.
I ask myself the same question about my AA developing into AT or AU, especially since I am beginning to lose one of my eyebrows. I love my eyebrows. I also love my eyelashes. I guess what will be, will be.
My main priority right now is to try and be positive about life in all its complexities, which has been a life long struggle/journey for me.
I will get there and I really believe you will too.
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Comment by Christine Messner on October 9, 2009 at 10:34am
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I feel your fustrstion,,although I do not have AA but my two year old son does. About nine months ago I found two small spots and around 9 weeks later he was preety much bald, and I had a 2 month old baby also so my feelings were devatstated. I found a dr in Israel who's treatment has done wonders for him.He is on his 3rd month treatment and he has 85-90% of his hair back. check out my blog about his treatment call kyler's treatment and see what you think..Hang in there. Your a good look'en guy hair or no hair!!!
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Comment by Joshua on October 9, 2009 at 10:42am
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Ernesto, I have nothing much to add on all the great replies above. Many of us have been through what you're currently facing, but it does not necessarily mean that your alopecia areata will definitely progress to alopecia totalis or universalis. Its good to let of your feelings sometimes and it does help alot. Keep up with your positive outlook. At the end of the day, you are who you are, live your life to the fullest, the number of hairs on our head will not have the final say.
Keep your faith and hope going on. It may take a little dip before a full remission and even if it does worsen, you're not alone and please vent your frustration to us and we're always here to listen...take care.
# a pat on your shoulder#
jt
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