Alopecia World
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Introduction of Sorts
I never know if people read these, nor am I ever sure how to begin but the sake of my own sanity I'm writing. Here we go...
Why am I here?
A few months ago I noticed a small bald spot forming and chalked it up to pulling hair back too tightly. In hindsight that really is a moronic excuse, but at that time I had no idea Alopecia existed nor did I think I was losing hair. Well, needless to say that wasn't accurate. I had two friends visit in March, and I was still able to wear my hair down without worry about my bald spots being visible. Worked on parting a little differently due to a larger spot forming right where my part starts, I suppose that's the best way to describe that... My girlfriend, Vanessa, then pointed out that the initial spot we had noticed was growing... Proceeded to do "further research" so to speak, and it was then very apparent that I had, well still have, large [now larger], circular bald spots forming around my head... I don't really know the right term to use for the specific spot, and maybe I'll get up enough guts to post a picture of my bald spots a few months ago...
I want to say I had composure and shrugged it off, but I can't. I'm not an overly emotional person, so tears were not shed, but I did manage to psych myself out and thus, the hats. I taught myself how to crochet a hat back in December maybe? But now I'm crocheting hats for myself and Vanessa, and friends. Blue, red, orange, black, tan, gray... It's a good distraction and it's fun, they're actually really cute!! Oops, I'm getting side-tracked.
Since I noticed my bald spots growing I have been wearing a hat daily. To class, work, wherever. I went out and bought a wig, but have only worn it once. I was so self-conscious and worried people could tell and/or it would fall off! Even today I tried to not wear a hat, but was so consumed I couldn't concentrate in class and put my hat back on. Having just looked at a picture of the back of my head, and my bald spots that are fusing together to form one very large bald spot... I'm slightly discouraged and currently wallowing. Gross.
I was adopted. Open heart surgery in Seoul before I came to the United States, and a pacemaker at the age of 2. I've had 3 pacemaker replacements since then. I guess I'm still stuck in the "Why me" and "This isn't fair" phase. Don't get me wrong, I'm so grateful to my parents. I'm thankful to be alive and I am so blessed. I really shouldn't be concerning myself with superficial things such as my hair... But yet, I am. A part of me just wants to know if I'm going to lose it all, or what's happening. Why it's happening. All questions I realize, after having done some research and reading, are not concretely answerable.
Dermatology appointment tomorrow...
Maybe they will be able to provide some answers. Tgif Everyone.
---ESB.
Why am I here?
A few months ago I noticed a small bald spot forming and chalked it up to pulling hair back too tightly. In hindsight that really is a moronic excuse, but at that time I had no idea Alopecia existed nor did I think I was losing hair. Well, needless to say that wasn't accurate. I had two friends visit in March, and I was still able to wear my hair down without worry about my bald spots being visible. Worked on parting a little differently due to a larger spot forming right where my part starts, I suppose that's the best way to describe that... My girlfriend, Vanessa, then pointed out that the initial spot we had noticed was growing... Proceeded to do "further research" so to speak, and it was then very apparent that I had, well still have, large [now larger], circular bald spots forming around my head... I don't really know the right term to use for the specific spot, and maybe I'll get up enough guts to post a picture of my bald spots a few months ago...
I want to say I had composure and shrugged it off, but I can't. I'm not an overly emotional person, so tears were not shed, but I did manage to psych myself out and thus, the hats. I taught myself how to crochet a hat back in December maybe? But now I'm crocheting hats for myself and Vanessa, and friends. Blue, red, orange, black, tan, gray... It's a good distraction and it's fun, they're actually really cute!! Oops, I'm getting side-tracked.
Since I noticed my bald spots growing I have been wearing a hat daily. To class, work, wherever. I went out and bought a wig, but have only worn it once. I was so self-conscious and worried people could tell and/or it would fall off! Even today I tried to not wear a hat, but was so consumed I couldn't concentrate in class and put my hat back on. Having just looked at a picture of the back of my head, and my bald spots that are fusing together to form one very large bald spot... I'm slightly discouraged and currently wallowing. Gross.
I was adopted. Open heart surgery in Seoul before I came to the United States, and a pacemaker at the age of 2. I've had 3 pacemaker replacements since then. I guess I'm still stuck in the "Why me" and "This isn't fair" phase. Don't get me wrong, I'm so grateful to my parents. I'm thankful to be alive and I am so blessed. I really shouldn't be concerning myself with superficial things such as my hair... But yet, I am. A part of me just wants to know if I'm going to lose it all, or what's happening. Why it's happening. All questions I realize, after having done some research and reading, are not concretely answerable.
Dermatology appointment tomorrow...
Maybe they will be able to provide some answers. Tgif Everyone.
---ESB.
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Comment by Carmen Dayhoff on May 7, 2010 at 6:04am
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hang in there Ellen.losing ur hair is difficult.don't beat urself up from how u feel bout it.a dr is a great place to start.but there r great ppl to support u here.ur in a great place here too.
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Comment by Jenna4 on May 7, 2010 at 7:55am
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Hi Ellen -- I know this is tough, the hardest thing for me has been that there is no reason, treatment or predictions with Alopecia. I found my first spot at the very end of Jan. 2010 and by mid March, lost about 50% of my hair. Mine came out just like yours, the spots grew bigger and began joining together. I work in a professional office, so hats weren't an option for me. I purchased a wig and started wearing it when I couldn 't hide my spots any longer with different hairstyles. I finally decided to shave my head when I looked in the mirror and saw all the bald spots on top of my head through my pony tail. I am so glad I shaved - what a relief to not be obsessed about my spots getting bigger! Now, 6 weeks later, all my spots are growing back - go figure!
When I first found this site, I practically lived on it...I read through all the discussions and blogs and absorbed as much information as possible. It helps to know you're not alone and there are people out in the big wide world that are here to help answer questions and offer support. Don't be afraid to post discussion or blogs or as anyone questions directly. So many of our stories are similar, we've all been through what you are experiencing. Good luck at the derm. today!
Jenna
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Comment by Petra on May 7, 2010 at 2:32pm
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Hi Ellen, Your going in the right direction seeing a dermatologist. Unfortunately there is still so much that is not know about alopecia - there are some treatment options available and they may or may not work. When you get to that point this is a great place to ask question since most of us have tried one form of treatment or another.
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And in my experience, not all derm.s are great. Get a couple of opions. If u don't feel comfortable with one get another opinion. I went to a whack to get my daughter checked out when she was having some spots, I was really upset. If I had know then about alopecia world and other resources I would have known what to expect and more about it. I've had alopecia for 30 yrs but lived in practical denial of it. When my little girl started having spots I flipped out the dermotologist we went to was a whack job and thank God I had her on good enough ins. I could take her somewhere else who knew what they were talking about and cared how to deal with my daughter and I. I felt better after the 2nd Dr. But I balled my eyes out after leaving the office of the first Dr. So just know that they are not God and they don't know everything. U know what I mean.
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