Hair loss is continuing to spread. My lupus caused scarring alopecia. Feeling pretty low dealing with continued stares from people.
Sonja, I'm sorry that people can be so mean when they don't understand. Have you thought about a wig or a beautiful scarf for your head to wear? Hold your head high - they would fold if they had to go through half of what we do with lupus.
Hugs, Trisha
Sonja, some dermatologists specialize in alopecia. Most of the treatments aren't covered by insurance because hair is seen as cosmetic. I am on biological infusions that make me a poor candidate for hair transplant therapy. My HSA does allow for two wigs a year. I found a great wig store with owners who are so kind and supportive. My wig just looks like I am having a good hair day. It really helped my self esteem. My wig is a lace front by Jon Renau and was $120. Until I can find a way to economically get my hair back, I will keep my wigs. Hope this helps you.
Sonja, you are so beautiful that I think a scarf around your head would be gorgeous if you don't want a wig. People are just so rude! Hugs
I really hate it when people are so rude to stare. There is a woman at work who is Muslim that wears gorgeous head scarves she makes herself. She ties them in interesting ways and found the instructions on the internet. I haven’t started losing a lot hair yet but it is starting to thin and I’m very worried about it. I was told not to use Rogaine because it is known to cause lupus flares.
I had longer hair but the more it fell out, I finally decided to cut it short. My grandma gave me money for a wig and I got one offline from paulayoung. and I love it! So I can either pull the short look or longer look. :)
Sonja, just hold your head high like Trisha said. The mean people are just ignorant! Wigs can be amazing and I do
love a scarf wrap too. There are a few choices for you though I know you must feel very sad. Many people today have hair loss from Chemo or disease so you are not alone.
Hugs, Geneva
I had really long think hair once, I laughter at I photo that was taken at a wedding I had my hair down no one in my family knew it was me.it thinned and I cut it short .
geneva21 said:
Sonja, just hold your head high like Trisha said. The mean people are just ignorant! Wigs can be amazing and I do
love a scarf wrap too. There are a few choices for you though I know you must feel very sad. Many people today have hair loss from Chemo or disease so you are not alone.
Hugs, Geneva
Try wearing a beautiful hat!! one that cheers you just to look at it! i have to wear hats all time due to the sun.
My father has had birth mark on his arm since his birth, in 1931. He had about 15 surgeries on it since muscles also were not right, thankfully all done by the Shriners as during the depression, my grandparents could not have afforded it.
Point is..to this day he wears long sleeves because of the rude people in the world. I wish he could let it go by this age but it is just his shame.
You have nothing to be ashamed about. I get how wigs bother that kind of scalp problems...few that do not, i have heard. You could just say loudly, never get a perm this is what happens!! or hair colored treatment went bad...something to have a good laugh...if you can laugh make you feel better about the entire situation.
But i am so sorry about adults that stare...i know i grew up seeing it. They even pull their hands back like they might catch his birthmark...really sad. SO i get it..we kids would say things that make us laugh and eventually my dad was too.
i am so sorry ...but me...i vote for some beautiful hats!! i use to hate having to wear them, now i love them!! you might even try making some on your own!
I understand how your father feels, I have a birthmark on the side of my face. I cover it now with make up, but I still know its there. It will always be there. My mother took me to a plastic surgeon, and at the time surgery would have made it worse, since it is not raised, its a port wine stain. As a child, I took the looks and stares and even adults would ask if I got kicked by a horse? I grew up "getting used to it". Lupus came to me at 51, and its much different adjusting to this than growing up with it.
siskiyousis said:
Try wearing a beautiful hat!! one that cheers you just to look at it! i have to wear hats all time due to the sun.
My father has had birth mark on his arm since his birth, in 1931. He had about 15 surgeries on it since muscles also were not right, thankfully all done by the Shriners as during the depression, my grandparents could not have afforded it.
Point is..to this day he wears long sleeves because of the rude people in the world. I wish he could let it go by this age but it is just his shame.
You have nothing to be ashamed about. I get how wigs bother that kind of scalp problems...few that do not, i have heard. You could just say loudly, never get a perm this is what happens!! or hair colored treatment went bad...something to have a good laugh...if you can laugh make you feel better about the entire situation.
But i am so sorry about adults that stare...i know i grew up seeing it. They even pull their hands back like they might catch his birthmark...really sad. SO i get it..we kids would say things that make us laugh and eventually my dad was too.
i am so sorry ...but me...i vote for some beautiful hats!! i use to hate having to wear them, now i love them!! you might even try making some on your own!
I experienced my first hair loss in September of 2012, soon after being diagnosed with lupus and starting meds. It was an extremely stressful time (recent diagnosis, first real experience with the medical "system", unable to work like I had been, husband undergoing chemo). I've never had "a lot"of hair, but the way I was going I felt as if I was going to be bald by the end of the year. I was feeling and looking really bad and my docs were of no help. I bought my first wig and wore it for a family Christmas dinner and NO ONE said a word. That bothered me more than the idea of hair loss.
A week after the wig purchase, the hair loss slowed down and I had "lupus loopies" starting to grow back! I was happy until July when the hair loss started again and continued until just a week ago when it started slowing down once more.
After many more visits to dermatologists and my rhumey and still without answers, I am as perplexed as ever. I think I have learned to better manage stress, eat healthier, reduce meds, etc. So why should this still be going on?
I think the members above are correct when they encourage you to find something that feels comfortable for you. In my case it was wearing a wig on occasion and finding a stylist who could work with what hair I had left. I was surprised to learn from her how many women have hair loss problems. This whole "adventure" has made me more aware of hairstyles. I am amazed how many of the women I see are wearing wigs or extensions. The women having "good hair days" almost always are wearing wigs!
In addition to the other (daily!) weird things that happen, it seems like my hair texture has changed, meaning I don't have to wash it as frequently.....a good thing when it's falling out. I also found that a hospital not too far from me had a gift store with items for women battling cancer. There I could try on wigs with the help of an expert making the whole process a little more encouraging.
A new stylist/haircut, color, wig, hat, scarf.....try them all! Pamper yourself as much as you can right now. You deserve to look and feel your best!
I looked like a dog with mange. It was bad. So I shaved my head. I adopted San attitude of “this is me. Stare or not but I think in beautiful”. It was empowering. So shave your head. Be proud. Wear your baldness as a badge of courage. 
Hello Sonja
I have a beautiful friend who had the most gorgeous locks. She inspired me to loc my hair also. Well she was recently diagnosed with breast cancer and is undergoing aggressive chemo, radiation and soon the double mastectomy. Needless to say the locks started falling out on her way to treatment. We talked about it...... about 2 months ago she shaved them all off and now sports a killer Baldie! Of course now I want to look as sexy and cut mine off too! I tell you this to say that she is solo beautiful, it's the smile and eyes with her. No one noticed for a quick minute that the locks were even gone. My point is, you are not your hair, your killer sexy smile won me over! It's what radiates within you that makes folks notice, you can do a wig scarf, hat, wrap or Baldie and still, I'm sure of this, get the stares.
Let yourself go and be who you are, don't worry about the hair at all. Embrace all the love that obviously surrounds you and be a diva!
We are all family and here, you have friends that understand.......you shine love.
Be forever strong because your spirit most definitely is.
I feel you, I am losing my hair. It kills one self-confidence. I wear a beanie at work and hats when I am not working. I have decided to cut my hair short. keep your head up. Asia64