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 Sam Reid on October 9, 2009 at 7:59pm
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Hi Ernesto,
The start of Alopecia has to be the worst part by far. It's scary, depressing and dominates your thoughts completely.Hopefully in your case the hair loss might stop and regrow soon. But as everyone says, it's a hard thing to judge. I'm a young guy as well, and when mine started to go I went through a whole series of emotions, mostly sad ones. But now, a year and a half later, I must say that I'm pretty comfortable with it. While I'd much rather it back, I'm able to deal with it....as are my family, friends and people I meet for the first time. I've picked up a girlfriend in the meantime (who is lovely and pretty), started teaching children (who are fantastic with it! They are mainly just interested by it), and, to be totally honest, become more self confident and out going. Having alopecia forced me to get out there and be confident from the outset. If you don't try to hide it away (which takes some time and smalls steps at first) people respond well and are not bothered.
But as I said, that start of alopecia is that hardest part. My advice would be to read the blogs and forums on this website (that really helped me a lot), talk to others with alopecia, learn as much about it as you can, and rely on family and friends to help you out. Overtime, being able to come to terms with it yourself has to be the best treatment I've come across so far. Good luck with it all and continue blogging. It's good to get it out and hear what others have to say. It's also good for the rest of us to hear other people's stories and their particular journey.
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Comment by MiNAH on October 9, 2009 at 11:27pm
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YOU SAiD:
"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".
First of all Ernesto, your friends have no comprehension & are unable to grasp your dilemma or frustration.
They are inequipped to pass judgment on your adversity, loss & suffering.
They need to lose that arrogance & ignorance.
No matter how much they care, the "SMUT & GRIME" that they throw out, should be wiped away.
If the "SHOE WAS ON THE OTHER FOOT"...they wouldn't have half of the "STENGTH & POWER" you have right at this moment.
Not only your friends have this obserd opinion, a majority & multitude of society lack understanding, compassion, & empathy.
I know how Patronizing this Analogy can be from people, so this is why you have to stand above all that negative engery put out to you.
They have 'NO IDEA....NOT A CLUE"
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Thank you Thea,
So "Eloquently" Spoken.
MiNA
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Comment by Susan - Jon's Mum on October 11, 2009 at 9:29am
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I don't have alopecia but my son does. He first started losing his hair at 6 years of age. He went through a tough time accepting it. One thing we found was that by not concentrating on it but just getting on with life and doing things you enjoy helps tremendously. Focusing on the hairloss just increases your stress levels. We found with him that not using any treatment was the best - let nature take it's course. At the same time ensure that you eat right, sleep well and keep fit, doing things you enjoy doing, thereby giving your body the best possible chance as well as feeling good about yourself.
Jon has had periods of loss and regrowth. He just lost all his hair recently and is going through the feelings of hopelessness again - like you are experiencing. It is very hard to see someone you love going through that.
My advice - talk, talk and more talk to anyone that is willing to listen and give you support. As Mina said your friends don't have a clue. It's a shame that they are not more supportive and understanding. Though only someone who has suffered from this either directly or indirectly can fully comprehend what you are feeling. Though close family are very good at empathising and usually good support.
I feel for you. Hang in there,
Susan
P.s. I like the newly shaved cut, very macho.
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Comment by Michelle De Cou on October 11, 2009 at 1:55pm
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I feel you. But you know your friends are right it is just hair. I know that it's hard. I had lovely thick hair until I reached my late twenties and then it hit. I'm not sure why doctors treat alopecia as a dermatological problem. It's an auto-immune disease and I feel it should be treated internally as such, but I don't have boat loads of money to fight that battle with my doctors. All I can tell you is that life goes on and people are going to love you for who you are, not whether or not you have hair, so just try to stay positive and now that you have a lot of people on this site to support you.
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Comment by Melissa Harris on October 14, 2009 at 9:58pm
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E,
All i can tell you is that you are not the only one going through this even through that doesn't make you feel better. I don't know if you have faith at all, but praying about it helps. Even though I often think why me?? But you never get real answer for that question, you still need to go on and enjoy your life as much as you can. I am glad that I'm not paralyzed or lost a limb, but this still sucks! Especially for women! My hair was my pride and joy! Life goes on and you will be ok. People that love you still love you and you are still the same person no matter what. I wish I could give you the magic answer on what will happen too, but this AA is just too damn unpredictable for all of us!! So I just enjoy the hair that I have left and whatever comes next will just have to be "normal" for me. I have talked to lots of people and they adjust to it. It's not the best situation but I guess it really isn't the worst. It is good to vent though! I know sometimes I feel like screaming and saying why me or all people!! This is just our situation and we need to adjust to it the best we can. Try not to stress too much and eat well and exercise! Most people do grow their hair back, but it could happen again, or it could not. There is just no way of knowing! That part sucks! Take care! :)
Melissa
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Comment by Ernesto on October 23, 2009 at 9:40pm
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Thanks to all of you for all the kind words of inspiration, hope and otherwise. I'd almost be happy if my doctor came back and said, "We found something in your blood." At least I'd know what my possible outcomes are and how to treat them. I have to limit my time on here, because it's a little too much right now, and the way my brain works, I see a lot of AU and AT and I go into a panic. I truly appreciate all of you, who don't even know me personally yet are willing to extend a few words to encourage me through perhaps one of the most perplexing, disturbing and frightening things I've ever been through. (Can you believe that?? The most disturbing? And I'm not even dying.) You are all such amazing, strong people, and I hope to have half of your strength if this gets worse. I continue to hold hope that this is a passing condition as it has been for some. Thank you all again. You are inspiring and amazing, and have managed to lift my spirits when I couldn't.
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