So this weekend I decided to let my hair down… literally. I usually just pull it back, but Sunday I had to go to an event that required that I look more proper, a little more put together. Also for the outfit I was wearing I thought it would look so much nicer with my hair down. So for the first time in a long time I did the “hair routine.” I have avoided doing it for quite sometime because it seemed pointless. My hair is so thin and lifeless that the less time I spend working on it the better. If you haven’t already read it in one of my past postings, the hair routine usually takes about 1 – 1 1/2 hours and involves the use of a thickening shampoo and conditioner, then the use of a defrizzer that is applied after I’ve combed through my wet hair, then a thickening agent, and then I use a giant roll brush and blowdryer to make my hair look fuller. The final thing is the use of a flat iron to smooth it out.
Part of why I hate wearing it down is because it feels like nothing is there, I can’t feel the weight of my hair anymore, I haven’t for quite sometime, but it’s even worse now. I sucked it up anyways. You know what, most of those people I saw on Sunday didn’t have any idea I was losing my hair… I was able to perform hair magic one more time. I didn’t see any wandering eyes drifting upwards to stare at my thinning hair. I do look like a person with thin hair, but to them they probably thought it was just naturally thin. Even with that I still consider shaving my head because it is complete torture to lose 500+ hairs on some days. That is the type of extreme shedding that has started the last couple years, mainly the last year. I do think it is getting a little better now for whatever reason. Hair is cyclical and maybe I’m finally on the upswing. *fingers crossed*
But there is more…So after I finally made it through Sunday with the hair down, I kept it down, after all that effort I wanted to squeeze out another day of trying to feel normal. My fiance made a comment that I seemed so much more confident and social with my hair down, that I was like a different person. That makes sense, I hate wearing my hair up all the time, and I’m always feeling self conscious so I never have a chance to really be me. Monday night we out to a nice dinner and then went to a blues club to listen to music and have drinks. For a split second I sort of forgot about everything and enjoyed myself. I haven’t done that in a really really long time. It felt wonderful. Those moments are few and far between and I really appreciated it. In fact I told my fiance I wanted to start doing that at least once a week, get dressed up have a nice dinner, listen to some music… be normal. Even if I have to go with my hair pulled back in a not so attractive manner, I want to live life.
What had motivated me to get on with living in spite of all my constant hair loss struggles, was Monday’s episode of Oprah. The topic was “confronting death.” Two stories were featured, the first was about a woman named Kris Carr who in 2003 was an aspiring actress and model. This same year, she found out that she had a rare form of cancer that was in its most serious stage, stage four of cancer. There is no stage five.
After being prescribed various treatments including the recommendation for a triple organ transplant she decided to explore other alternative options. She made a documentary of her Journey called “Crazy Sexy Cancer” and also has a book called “Crazy Sexy Cancer Tips” On the show she revealed that her tumors on her liver and lungs are completely stable. Kris says “I’m happy and, I think, healthier than I was before I was diagnosed. She also says “A lot of people look at me like I have 10 heads when I say it, but cancer’s been my guru, it’s my teacher it teaches me every day the hard things and the beautiful things.”
She talks about how her desperation turned to inspiration and how she was able to change her focus. Watching her go through all she had endured and continuing to learn to love life, and learn how to live life in the moment was very eye opening and awe inspiring for me.
The next story was about a man named Dr. Randy Pausch who had delivered a farewell lecture at Carnegie Mellon University. The 46-year-old professor and father of three preschoolers has incurable pancreatic cancer. Randy gave the inspiring lecture once again on Oprah’s show. Everyone should watch it.
The documentary Crazy Sexy Cancer airs tonight on TLC 8/7c – I’ll definitely be watching it.
{ 10 comments… read them below or add one }
I 100% know how you feel and can sympathize!! I do the whole thicken, straighten ect routine a few times a week and it is so depressing to feel like all you have is fluff on your head! It actually makes me feel worse about my hair ;-( The feeling like nothing’s there. Plus if it’s straightened I have to use all kinds of clips and barrettes to hide my bald spot, then I spend the whole day obsessing about the clips slipping and revealing my shame. I am so tired of this and am ready for a wig so that I won’t have to worry about my scalp showing anymore and being able to feel feminine again. I have an appointment on Friday at a wig specialty store and will let you know how it goes. Don’t mean to be a downer, just wanted to let you know you’re not alone!
Hello everyone!
Well, after reading and watching the video clip, this seems really irrelevant. I have come to the realization that it is just hair and I can deal with it. It is not the end of the world and I am not going to spend every minute thinking about it. With that being said, I had my REPRIEVE consultation yesterday and it went very well. I have decided that I am going to take the jump and go with REPRIEVE. I don’t feel like I have anything to lose (no pun intended:) ) It sounds like a wonderful system and the lady I met with was wonderful and compassionate. I am going to do it and get on with my life. I would like to thank everyone for all their comments – especially Julie! You answers to my questions were very helpful. I will keep you posted!
Hi Alicia – Congratulations! That is awesome to hear. When do you go back? I assume the hair has to be special ordered and the piece made (?) I have a few questions… How much does it cost? How often does it have to be taken off to be maintained? And the last question is, are they only in Chicago? Sorry for so many questions, I’m just so excited that you liked what you saw and are going to give it a try. I really admire you for taking the bull by the horns on this one and doing something to help yourself move on. And you are right Alicia, when you see things like the video clip or the story about Kris Carr it really does seem to shift things into perspective, and thats a really important thing. When you watch people contend with lifelong terminal illnesses that are so much greater than hair loss, you can’t help but acknowledge that we are lucky. When you see some individuals maintain a positive attitude about life, you cannot help but realize that if they can do that, then certainly I can live with this [hair loss].
At the same time I am more than aware of the devastation that hair loss inflicts on women who suffer from it. I’ve read that one of the greatest concerns of women who are first diagnosed with cancer is whether or not they are going to lose their hair. Hair is important, we grew up with it, having be a part of our identity. When you lose it, sometimes who we are goes right with it and insecurity moves in. I would never downplay the severity of hair loss because the damage it causes to women is very real. I feel like I’ve let the last 8 years slip away… staying home, crying. I don’t want to lose the next 8 years, or I’ll wake up one day and realize most of my life was spent in seclusion and not “living” because I couldn’t accept or move on from hair loss.
That is what I try and work on now, I try and work on my mind. I do keep hope that the “excessive shedding” will cease, my gut tells me it was the increase in synthroid which I am now weaning down to a lower dose. I’ll still have the androgenetic alopecia but hopefully without the excessive telogen effluvium
But I have choices, I have options. Like you, I can choose to wear hair, I can shave it off and accept myself as is. I get inspiration and strength from the stories like the ones I posted here, which is why I wanted to share it with everyone. Over the years I’ve heard insensitive people comment to me on hair loss by saying, “Well it isn’t cancer.” Thats true, I know that, I always have. But often it does infect who we are, it makes us self conscious and embarrassed, it changes the person we once knew, it makes dreams seem impossible. These are all true as well for some women. For me anyways. But I’m changing and I’m learning, I want to be like you and just take the “bull by horns”
Please keep us updated with everything. I’m looking forward to following your journey with this new process.
Canadian – You said it perfectly, “fluff.” That about describes it. And thats the reason I just pull it back because you just feel like you have nothing there. But even with “feeling” just awful because it was so thin and fluff like, people still didn’t notice. Some women do just have very naturally thin hair so I guess that is what everyone just thought I had. And barrettes… I’m queen of the barrettes, I use those as well to pull back the tiny thin hairs and cover the thin wide parts and balding areas of my scalp that show when my hair is in a pony tail. I use those snap clips.
Please let us know how everything goes this weekend at the wig store and its good to hear that you are taking the initiative to go explore that option. And you are definitely not being a downer. Good moments or self realization on my part doesn’t negate the devastation that hair loss causes to women. To you, to me, to everyone else. So don’t ever worry about being a downer. Believe me I’ve written many times about my sadness and depression. And I’m sure I will again, it’s inevitable. I’ve often worried that writing my intimate thoughts about my dreary days may be a disservice to women and just make things worse. But it doesn’t, it’ real. If I’m experiencing it I know another woman somewhere is as well, and at least reading my thoughts will let her know she’s not alone. So thank you for sharing to let me know I’m not alone.
~Y
I know exactly how you feel. I noticed my hair thinning in my 20’s – I am 37 now and it has gotten worse over the last year. My doctor says that stress and hormones probably played a role. Anyway, I would avoid all kinds of situations that showed my “true hair”. I used to cry looking in the mirror. Don’t get me wrong – I still have very miserable moments where I cry poor me, but I am trying to work on that. And you are right, it is devastating to lose your hair – most people with hair have no idea! That is why I have decided to “wear hair”. I am not brave enough to bond yet, but I am going to give the Reprieve a try.
Now let me try to answer all your questions…
First, it does need to be ordered, but it only takes a few days. They don’t measure your head, rather, they have an assortment of sizes and colors that would fit anyone’s needs.
Second, one piece costs $995.00. They did recommend purchasing a second piece if I do like it. I would probably do that anyway.
Third, you do not take it off except for when you go for maintenance – every 4-6 weeks. They take it off and “clean it up” and then adhere it back on. You can wash it, style it, swim in it, anything you would do in normal hair. They do not have to shave your head – they adhere your own hair to a rim on the cap, therefore, it flows with your hair. I hope I explained this right! You would probably have more luck on their website – wwww.reprievehair.com. You can also find local salons in your area that are certified to work with Reprieve. I know they are not only in Chicago.
I really hope I answered your questions. I am sure I can give you more information once I am actually wearing it.
Take care!
Hi Alicia – Thank you for providing the information about the reprieve hair. I’m very excited for you to start wearing it and look forward to hearing from you once you’ve had it put on. Do you have a date set up yet to go back? It is so wonderful to see you take this big step and making the decision to take back control and do something for you so that you can move on. Very inspiring. I really appreciate you sharing the process with everyone, and allowing us to be part of your experience, it means a lot and is very helpful for women who are also thinking of exploring wearing hair as an option.
~Y
Letting My Hair Down – How Bout A Little Inspiration?-
This is the first time I saw this clip, the professor that has cancer and is telling us to live like we have never before. WOW!! tears of joy! A good inspiration!
Thanks.
S
Alicia,
How do you like your Rerieve system now that it has been a fedw months? Thanks so much for sharing your information!
Hi Alicia,
Thank you so much for your input. Question: how much do the monthly maintenance visits cost?
Reprieve sounds VERY promising. I just need to be prepared to budget for it!
Sorry everyone – I have not been on in a while. I have started a new job and things have been crazy at home. I have taken off the Reprieve system since I last spoke with everyone. I wore it for about 7 months and while I did like it, it just wasn’t something that I could wear for a long time. I personally think I suffered breakage I had it on. However, when I did take it off, my Reprieve stylist was nice enough to sew clips onto my piece, so I did wear the piece as a clipped on piece for about 2 months and that as well damaged my hair. I just think that is the nature of wearing something that is not bonded – it does have the potential to damage what hair you do have. The one problem I did have with Reprieve was that I couldn’t take it off. Now, I do believe that is a positive attribute. However, it does pose a problem when you want to swim in your new pool! I wanted the freedom of being able to take it off at that time.
At this present time, I am really trying to grow my hair back and going “au naturale”. I am using Rogaine and concealing with Toppik. I have also stopped taking Lexapro 6 months ago. I do think that contributed to my hairloss. I do feel like I have grown some hair back, so I am hopeful. I am also comfortable with my own hair right now and I haven’t felt like that in a long time. Sure, I would love long, thick hair, but that is not going to happen. Oh well…At least I know there are many options out there for me.
As far as the monthly maintenance, it did get pricey. I spent $95.00 every 4-6 weeks for maintenance and that did not include the cut and color if you wanted it. It is a great system if you don’t want something that you can remove and you dont’ want to have to shave your head for a bonded topper. It is something I will consider again in the future if I want to go back to wearing a system.
Good luck! I promise I will check back sooner than later.
Alicia – Thanks so much for the update! It is really nice having our own resident former Reprieve hair wearer to get the inside scoop.
I’m so happy you are growing so hair back, and you really you just sound like you are in a good place.
Question… did you feel confident interacting with other people in social settings with your Reprieve hair?
All The Best,
~Y