Alopecia World
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My story with AA, as it begins
I had been noticing substancial hair loss over the past several months. My hair had finally gotten very long and I loved it, but something changed. I felt like my hair wasn't getting any longer over the past few months. I thought that maybe it just was because it was thin. I found myself having to clean out a completely full brush every time I brushed my hair. It was everywhere: on the couch, all over my car, on the floor, filling up the vaccuum cleaner, and stopping up our drains. My husband was finding my hair all over himself at work. August 2010 I found two, what I call crop circles, on my head, the largest being about the size of a nickel. Did I do this putting my hair up in a scruntchie to sleep at night? ..or...did I get cleaner on my head when I was cleaning my boys new apartment?
It was at this point I decided to give in to my husbands pleading, and had 13" cut off of my hair. Maybe that would help, whatever the problem was. I looked into donating my hair...but for some reason, and I looked many times, I mis-understood and thought that I could not donate my hair, because I had previously colored it. I was very disappointed about that.
On Monday October 4th, 2010, I finally made it in to the dermatologist. He knew exactly what was wrong. "You have something called Alopecia Areata" he said, as he explained to me my options. Of course, I went for the most aggressive option, the steroid injections. I wanted my hair to grow back ASAP. Hiding my bald spots had become harder and harder. Oh, and now my two bald spots were now three. I gladly braved the injections, walked to my car, then broke down in tears. I kept hearing words like, "No cure" and "unpredictable". HOW can I have this? I can't even pronounce it.. I had all the classic symptoms though. My head hurt for three days. I could feel the knots on my head where the injections had gone for two of those days. "Will this work?" I keep asking myself. About 24 hours later, I was on Facebook, looking up Alopecia Areata groups, and I looped somehow back around to Locks of Love. I couldn't believe my eyes!! It said I CAN donate my hair..even though it had been colored. This is exactly what I needed to hear, at exactly the time I needed to hear it. My beautiful hair had not been cut off in vain. I mailed my hair in the next day.
"I don't want it" my 21 year old son said to me. I pray that none of my children inherit this from me, but more than that, I pray that I can glorify God in this trial. "Maybe it wouldnt be so bad if I didn't have to shave my legs or armpits again..but please let me keep my eyebrows, and lashes," I thought.
Well, that is where I am at today. It's new. It's kinda scary. I don't know what is going to happen, and I am not sure how I will feel about it, when it does. I think I am going to need some support. I've read that the emotional aspects of this are the toughest part. Wow! I already deal with depression on a daily basis.
One thing I know for sure..I will not go through this alone. My friends, my family, and most importantly to me, my God is with me..He never gives me anything like this without going through it with me.
It was at this point I decided to give in to my husbands pleading, and had 13" cut off of my hair. Maybe that would help, whatever the problem was. I looked into donating my hair...but for some reason, and I looked many times, I mis-understood and thought that I could not donate my hair, because I had previously colored it. I was very disappointed about that.
On Monday October 4th, 2010, I finally made it in to the dermatologist. He knew exactly what was wrong. "You have something called Alopecia Areata" he said, as he explained to me my options. Of course, I went for the most aggressive option, the steroid injections. I wanted my hair to grow back ASAP. Hiding my bald spots had become harder and harder. Oh, and now my two bald spots were now three. I gladly braved the injections, walked to my car, then broke down in tears. I kept hearing words like, "No cure" and "unpredictable". HOW can I have this? I can't even pronounce it.. I had all the classic symptoms though. My head hurt for three days. I could feel the knots on my head where the injections had gone for two of those days. "Will this work?" I keep asking myself. About 24 hours later, I was on Facebook, looking up Alopecia Areata groups, and I looped somehow back around to Locks of Love. I couldn't believe my eyes!! It said I CAN donate my hair..even though it had been colored. This is exactly what I needed to hear, at exactly the time I needed to hear it. My beautiful hair had not been cut off in vain. I mailed my hair in the next day.
"I don't want it" my 21 year old son said to me. I pray that none of my children inherit this from me, but more than that, I pray that I can glorify God in this trial. "Maybe it wouldnt be so bad if I didn't have to shave my legs or armpits again..but please let me keep my eyebrows, and lashes," I thought.
Well, that is where I am at today. It's new. It's kinda scary. I don't know what is going to happen, and I am not sure how I will feel about it, when it does. I think I am going to need some support. I've read that the emotional aspects of this are the toughest part. Wow! I already deal with depression on a daily basis.
One thing I know for sure..I will not go through this alone. My friends, my family, and most importantly to me, my God is with me..He never gives me anything like this without going through it with me.
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Comment by Kimberly Duncan on October 8, 2010 at 9:05pm
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I found out in July I had AA i am with you on finding hair everywhere.. I know God has a reason for everything and I guess I am still waiting to find out why I have this and what God's mission is for me. but until then I am praying for you, me and everyone else that is going through all this. There are bad days and those are the days I cry and just pray harder.
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Comment by Diana Carter on October 9, 2010 at 3:36am
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Kimberly, have you had any of the treatments? I started monthly injections on Monday, and I am really torn if I should do this or not. Thanks for your encouragement, and for your prayers! I want to be strong, for my family. Sometimes I feel strong, and sometimes, I cry. Then again, it has only been 5 days for me, of knowing what it is that caused my hair loss. The missing hair I noticed 2 months ago, and it has only gotten worse. I would be glad to pray for you as well. I keep thinking I will wake up from this. When the doctor told me the diagnosis, the look on the nurses face told me all I needed to know. I am already experiencing well meaning words that have hurt from 'friends'. Most everyone has been so incredibly loving and encouraging to me..really, it has felt like such a blessing, their outpouring of compassion. It's very nice to meet you!
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Comment by Lexi on October 9, 2010 at 12:11pm
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Diana...found your page connecting with Mia, from Germany. I am in FL....How did your Dr. make a definitive diagnosis of alopecia?? I went to primary care, then dermatologist...had a laundry list of blood tests run, and didn't get any definite answer from anybody. Don't we all love to read about the hair shedding, and hair hair everywhere?? The sink, the counter, the bed, the pillow, the towels, ...the list goes on. Always looking with two mirrors at your head, seeing how much hair has fallen out. Afraid everytime we wash our hair to lose so much more. The comfort with this site, is that so many of us have experienced the same things, and we are not alone in this journey.
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Diana, I did get steriod shot one time was laid off so I lost my health insurance, could not afford to pay out of pocket. The big spot the one that is the size of my palm half my hair is growing back. Have stubble in other spots. The bad part is not knowing how much more hair is going to fall out and how many more spots are going to show up. I have around seven that are the size of a quarter and one that is the size of my palm. There are days where I think I am going to go crazy because of how bad my head itches and burns. I am so grateful for this website my husband has no compassion for what I am going through he stays in denial about it. My best friend all she could say was is it contagious? This website is my peace of mind and I am surrounded by people who know what we are going through.
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Comment by ChaNN on October 9, 2010 at 9:29pm
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I'm new to this also and I get depressed at times but all we can do is pray god always finds a way. yeah my head feels the same way it itches and burns pretty bad.
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Lexi, Like you, I had been to my primary care doctor..and my bloodwork came back perfect. The dermatologist told me what I had, and offered to do a biopsy , but since I have all the classic symptoms..the circles on my scalp especially, and the fact that the hair was there one day, and gone the next, I opted to not have the expense of the biopsy. Not sure how this all works with my insurance. Hoping it will pay for my injections, if not, I wont have any more. Of course, if the insurance requires a biopsy, I will get one. I know what you mean about the two mirrors thing too! I love this site. Nice to have ppl to talk to who have more experience with this than me. Well meaning friends have told me stuff like, "I liked your hair better long", and, "LOL, FUNNY!" at the picture of my bald spots...sorry, but all I could think was, "What in the world does she find funny!" I need people that can relate to what I am going through.
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Kimberly (or anyone), I know..I wonder if I will go to bed one night, and wake up with it all on my pillow! At what point do I decide, ok now, its time to shave, cut my hair, or get a cover, or whatever??? I just dont know. I am covering up pretty well right now, but I can see where it's gonna get hard to do. I keep thinking, that at that point, it is all getting cut extremely short, and either a hat or scarf, until I find my 'niche' where I am comfortable. Keep thinking, Hmm. Wig? Scarf? Hat? ...Never liked hats before, not really a hat person. I have come to no conclusions, except that when I am bald, I plan to sleep that way, or with something to cover my head only if it gets cold at night..but other than that, I guess when the time is right, then I will have to decide. I just don't know yet. I haven't gone through very much itching yet..and no burning..but mine is only 2 months into this too. What I am most curious about is eyebrows...and what our options are.
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Diana, I wonder the same thing when I get up in the middle of the night to go to the bathroom i check the mirror to make sure my hair is still there. I sleep with a towel on my pillow and change it out every night because so much hair falls out. I keep wondering if there is ever going to be a stopping point.
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