If you lost your hair, how long did it take to come back?
I lost all my hair, then it started coming back in little "baby fine" patches, and a lot of that has now fallen out too. I think it's still trying to come back, but it is SO very light and fine.
Ah, well. I'm getting to where I like myself bald....and I look VERY dashing in my berets! :P
Mine fell out in handfuls after about the third round of cytoxan - it had thinned so much from the lupus that the chemo was the last straw. I looked like an egg for a couuple of months, then the flare subsided a little, I cut back on the prednisone, and the hair started to come back. At first it was like little patches of down that looked more like a chicken's fluff than hair, and if rubbed very hard it would come off in my hands. I got some of the paul mitchell post chemo stuff at the salon and used it instead of shampoo, and patted the down dry instead of towelling. After a month or so I had a lot of stubbly growth that stuck up like a crewcut and felt like a porcupines quills - that was the worst because it itched. It was about five months before I had enough growth to stop wearing caps. My older brother had found a store that had women's baseball caps in every fabric and color of the rainbow - pink, purple, gingham, floral, etc. - he bought me about a dozen and I wore them at home and a wig at work. But the hair that grew back is a different texture and curly - I had thick, dark, very straight hair - the color is the same but the texture is more like a child's hair - very fine and wavy. And it grows a lot more slowly and damages more easily, and still "sheds" although it doesn't pull out in clumps like it did before. My last "growback" has been about 8 months and it's just now touching my shoulders. It needs trimming and shaping desperately but I'm afraid I'll jinx myself by cutting it. And I have no idea how to style it - I've always worn it long and braided and then pinned up or french braided. Right now I'm content just to let it grow and worry about how it looks later.
Well, I would LOVE to have curly hair! It is hard to tell at this stage, but what is coming in is like what you said...more like fuzzy down than hair. It is blondish and very fine. But I have a lot more scalp than hair.
This is wierd....people always want to TOUCH my head! Hubby likes to stroke it, says it is so very soft, but it's strange that people want to touch MY bald head! They are friends so I don't mind much.
I have a few nice scarves, several stocking caps, and several hats. Of course, the only hats that look nice are the berets...the others look toooo strange without hair. I am going to try to buy a cheap wig for court in March, but I don't want to do wigs, as I think they are uncomfortable and I'd constantly be worried, "Is it crooked?"
I pay a LOT of attention to my makeup now. I have noticed that in order to keep from staring at my head, people really look into my eyes now.
The one stepchild that I don't get along very well with (my husband's daughter Michal) actually called the other day and asked me if I wouldn't mind "covering up" my head when they stop by for Christmas, because, "I think the baldness would make me feel sick to my stomach"
THE NERVE!!!!!! She and I have never gotten along...she somehow views being nice to me as a betrayal to her mom. (and this has been going on for TEN YEARS!) she's a selfish, thoughtless little thing and always has been...the world revolves around what Michal wants, or how SHE thinks it should be. I politely told her that if it was a cold day, I'd be wearing a hat anyway or a scarf, but if it was a warm day, I would be bald and she'd have to deal with it. What I WANTED to say was, "Well, hon, seeing YOU always turns my stomach, but I deal with that, so you deal with THIS." I am not even going to tell my husband about our conversation, as it would upset him, and what good would it do?
What a brat!!!! You are far nicer than I would have been under similar circumstances. No one was ever unkind or rude during my baldie stage, although people did comment sometimes - it was in a supportive way. Your step-something (not sure what to call her since she's obviously neither a child or a daughter) is clearly incapable of any type of empathy or concern for other people. I feel sorry for her in a way - people with such shallow spirits are missing out on a lot. And when the day comes that she needs help - and that day always does come - she might find out she's alienated so many people that she has no friends left!
After I had my mastectomies and was feeling very horrible and unfeminine (because there was so much blood vessel damage, reconstruction was impossible), one of my dear friends took me to a very swanky store and bought me some gorgeous and expensive mastectomy bras - very feminine and much different from the JC Penney version of the mastectomy bra. It made me feel much better and really helped my recovery. I know all the therapists tell you that your outside appearance doesn't change you are - but believe me, that shopping trip was more therapeuetic than a dozen counseling sessions. I think hair is the same way. So if you have any close friends who are pondering a christmas gift, tell them up front you would appreciate a nice wig. Moisturing your scalp beforehand cuts down the discomfort, and a stocking net or other liner will keep it from slipping. Or buy an outrageously flamboyant hat a la Princess Camilla. One of my lupus friends even went to a tattoo artist who who does drawings with semipermanent dyes and had some beautiful designs done on her scalp. I wonder what your step daughter would think of that?
If you contact the oncology center of any hospital, most of them have counselors and volunteers specifically trained to deal with hair loss issues, or the American Cancer Society will also know of someone. Since hair loss is also such an issue with lupus, I'm surprised the LFA doesn't focus more attention on it. But the oncology folks are usually willing to help anyone, regardless of the cause of the hair loss. They can show you all the tips and tricks to dealing with wigs.
I admire your patience in dealing with your step-daughter yourself and not telling your husband. Just don't hold it in so much that it all comes bursting out at a bad moment.
Frankly, she made me so mad that I'd be afraid to get a tatoo for that day...it might say something fitting....like, "F--- you!"
What about a Santa hat - cute and festive - a lot of them even come with hair attached!