Where acceptance is all there is
I am a 38 year old female, who, up until this point, used to have a glorious thick head of long dark brown hair that flowed past my knees. It was my very best feature. I havent cut it since i was 15 years old.2 years ago, I noticed when i brushed it that there was a LOT of hair that would come out in my hair brush, but i didn't notice any patchy places at that time. Then about 18 months ago, every time i washed it, my scalp would react with huge hot swollen lesions that were painful and bloody. The doctors would treat this secondary infection with antibiotics and as the lesions went away, my hair would fall out in patches where the scabs fell off. I begged the doctors to biopsy these infected lesions but it took me 18 months to find a doctor who would listen. Last week, I was finally referred to a dermatologist. He listened to me carefully and took several biopsies, and he rushed the results, which i was SOOOO grateful for. The diagnosis was Alopecia Ariata. I was, and still am completely and utterly devastated. I had only 2 worst nightmare scenarios that i prayed all my life would never happen. 1 i prayed to have healthy children, but instead I have delivered 4 full term stillborn children, so i have lived my worst nightmare 4 times now. I only found out this year that they died due to a genetic blood disorder that I have that the doctors were not aware of and didn't test for even though my kids died repeatedly. The second worst nightmare i prayed i would never go through was losing my beautiful hair. And now, I know i am living that nightmare as well. At first, the patchy places were regrowing the hair on their own. But now, I have 2 spots that the hair is not regrowing at all. I have considered ending my life rather than watch my hair fall out one patch at a time. But, while i was considering this, my cousin suggested i do some research and see if there are any other treatments that might prevent the hair from falling out to begin with. I have been on the computer for the last week, ever since the diagnosis reading everything i can about this God awful disease. I feel alone and scared and so depressed. I found that there have been some experimental treatments using immunosuppressants. The treatments are risky, and they have bad side effects and risk of death is a very real possibility. But I spoke with the dermatologist about it. I have signed a release. And had many viles of blood drawn. If the blood tests come back within normal limits, then i begin immunosuppressants next month. I am not making this post for advice really. I think i am making it more because i have nobody to talk to about this. And I just need to let it out. even if nobody responds, i think i will feel better just to have written it and gotten it out. kind of like getting it off my chest so to speak.I do welcome responses though. I would also like to meet other people with alopecia. I don't know anyone with it and i don't care how old you are or if you are male or female. I just want a friend that can relate and wont tell me things like "its just hair" or "you are overreacting" or "its not the end of the world" because to me, it IS the end of the world. I have lived through enough bad stuff and i am so tired. Tired of it ALL. So i guess this is me reaching out for a friend. Anyway, Thank you for listening. I wish everyone the best on this Monday morning. Raven.
I am not going to pretend that I have any answers for you. I will just say that I have been through many adversities myself. I would go from feelings of anger to depression to questioning myself, family, God, etc. and what I learned through all the adversity is it can make you stronger, it can lead to closer relationships with those you love and it can lead to understanding more about yourself. Each morning I wake up and say " Thank you God for making me the best person I can be" . I would encourage you to seek out professional help or support groups. You may think you have to go it alone but it doesn't have to be that way. You will be surprised that that there are people who will be with you, guide you and help you as you need it. Some of my closest friends I came upon at the darkest times of my life. We are rooting for you!