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Comment by AK13 on May 20, 2013 at 7:02pm

Went back to the derm today to have my stitch removed from the biopsy. She wanted me to hold off on more shots. I don't know if she knows it is hopeless right that is how I feel. I am pulling on so many strands of hair during the day, that is new. I also got my bloodwork and my thyroid level is high (tsh?) I don't have it in front of me. Going to a new dr tomorrow who is into a more wholistic approach. I don't think fixing my thyroid will bring my hair back, but I guess it might fix the overwhelming tiredness I a, always feeling. I am tempted to find another dermatologist, I know there are good ones in NYC, but really won't they all lead to the same thing. Sigh. I am too tired to cry, I only slept 3 hours last night. I know it will get easier,I know it will.

Comment by Starshine on May 20, 2013 at 6:30pm

Lexi, I have diffuse also. Arn't we lucky.

Comment by Lexi on May 20, 2013 at 6:01pm

Kristy, just curious...are the pictures on your page with the long hair your bio hair before this happened? It was so pretty. My nape looks just like the picture of yours, and I also have diffuse AA.

Comment by Kristy on May 20, 2013 at 10:14am

Hi All, It's hard for me to comment on here as I feel like I don't provide the hope that everyone needs who is going through this devastating presentation of Alopecia. I was diagnosed with the Ophiasis pattern in May of 2009, about 9 months after the birth of my first child. My hair grew back with oral prednisone but right at the time I stopped the prednisone tapering, i had a miscarriage and then my hair loss came back with a vengence. Not only in the Ophiasis pattern, but my derm called it diffuse AA. It just came out everywhere. When my hairline began to recede and I couldn't hide it any longer, I begged my husband to shave my head. I was crying every time I took a shower and more hair fell out and every time I looked in the mirror. I was a psychological mess and mourned the loss of my chest length wavy blonde hair every day. My husband was balding and shaved his head from the time we met so I knew he could do it better than I. We shaved my head in Sept 2010. I stopped crying that day. By November, there was nothing left to shave and I was totally hairless and had AU by that point. I still have my moments of sadness, especially when I hear about people newly diagnosed, as it brings back all of the isolation and lonliness and "why me" that I went though with this ridiculous disorder. But I made the decision shortly after all my hair was gone that I was not going to be a slave to a wig. I go pretty much everywhere bald. All of my friends and family know I am hairless, they know if they invite me somewhere I will not be wearing a wig, and I have made some great friends since my hair fell out, something I never thought would happen as I figured who would want to be friends with this crazy bald chick? But I have become such a stronger person due to my Alopecia. I have chosen to not let it ruin me. I choose to be who I am and not what society, or my family, or anyone else expects me to be. I still have my bad days and dark moments, but I don't know a soul with hair who doesn't have those from time to time. Whenever someone comments on my hair (or lack of it) I always take it as an opportunity to spread the word about alopecia. Either people have never heard of it or they will tell you about their family member or friend who has it, too. And so many tell me that they know someone who, like me, chooses not to wear a wig. I just wish that they lived by me as I know that I'd want to be their friend. As Susan said, this horrible period will pass. Everyone deals with this loss differently, but it is my wish for everyone that the burden passes in the quickest manner possible. Surround yourself by supportive, caring people. Focus on the good things. People will not remember you for your great hair, they will remember you for what kind of person you are. All my best and hugs to all, Kristy

Comment by Susan Innes on May 18, 2013 at 8:49pm

Hi Starshine. Per my dermatologist, this type of alopecia is the nastiest (with early hair loss at the nape). Mine traveled upwards from there to the top, with all the hair gone within 2 years. He felt it was a losing battle from the beginning but he offered some corticosteroid cream which was tried but offered no relief. The consolation has come later in life as I see my peers losing their hair as part of the aging process (women and men). Most of my male friends laugh when I share that I'm completely bald as they too have become thin on the top, saying they're not in a position to judge anyone, male or female, because of hair loss. It's been a tremendous reminder that the "best" people don't care; in fact we may be the only ones who felt betrayed, Our hair does not define who we are. This horrible period will pass; you will become much stronger and the hair less important as life continues without it. ((Hugs)) Susan

Comment by Starshine on May 18, 2013 at 12:58pm

Hi, I am new to this group. I have been struggling with ophiasis, diffuse hair loss for over a year now. At first I did not know what it was and just recently learned the grim prognosis for this pattern. I have been a little down as I hoped I would get regrowth, but even with treatments, the back wont fill in and I have lost body hair as well. I am afraid this is heading towards AU, but I still have a lot of hair on top.

Comment by Hudson on May 16, 2013 at 2:27am

My aromatherapist blends essential oils, Rosemary, Lavender, Cedarwood, Bio-energiser (made from seaweed), grape seed, jojba and sweet almond for the oils which I apply each night and let soak in whilst I sleep and a blend of Rosemary and Nettle for shampoo which I use daily. Good Luck and learn to relax from the inside out.....

Comment by AK13 on May 15, 2013 at 9:08pm

Thanks for that. My closest friends know and I know I will need to tell more, but I think I need to come to terms with it myself before I can tell people. My children are young 11, 10,5 and 2. I will have to tell them eventually too.

My ferritin levels are very low, I plan on talking to my new dr on Tuesday about it, but I know I need to get them up. Is it not through iron pills, those were pills I didn't want to mess with I read too much is bad and was afraid to take them.

Thanks everyone, just knowing I have someone to talk to who understands is priceless.

Hudson can you tell me more about the oils. That is something I wanted to look into and I need to figure out better shampoo and conditioners to use too. Both on my to figure out list.

Thanks again :-)

Comment by Lexi on May 15, 2013 at 9:07pm

I think there is strong connection between stress and hairloss of any kind. I was under a lot of stress when my hair loss started. Too bad that life in general is full of stress for most of us. It doesn't cause hairloss in everyone. I had a very stressful day at work today, and all really for nothing. Big things are made out of nothing. Stress begins (again) Hudson, I am glad things are going well for you. Hopefully the hair growth continues, and the stress is relieved by whatever means works for you.

Comment by Cokeman on May 15, 2013 at 9:02pm

Well said Hudson.

I am also a believer that the more you can talk about it, the easier it becomes to deal with.

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