Replies to This Discussion

Permalink Reply by joan on March 8, 2014 at 8:19am

Hi Dee,

I am so sorry you are suffering like this.  I have had alopecia for about 1 1/2 years now and I have suffered many of the same feelings  each time the hair falls.  Like you said, it just  hurts so much- too much.    I'm from Jersey so I really can't say where to get a wig, but maybe ask your hair stylist or some friends.  Many people know someone who has gone through chemo and they might know where to purchase a good fitting and somewhat comfortable wig. 

Dealing with the emotional roller coaster of alopecia, as you already know, is just so hard.  Very few persons understand.   Each day can be a trial.  I have gotten some relief from prayer, from a local meditation class, and now I am seeing a psychologist to help with coping skills. 

I hope this helps.  Please keep sharing your situation- it should help you and help all of us too.

Permalink Reply by Dee on March 8, 2014 at 4:14pm

Joan,

 I am already noticing people staring at my head when taking to them my live in boyfiend  acts like it sno big deal says it could be worse yet he has no clue what it lilke to be a woman and lost your hair. We are both 52 and he clearly sees this is effecting me psychologically and thinks im being silly about this. My father and sister cried when they saw me. Im so embarrassed. I tried to post a photo on here and it will not go through I don't understand why. I want everyone to see what it looks like. I know stress is not helping at all but how do you control that? you cant.

Permalink Reply by Longport NJ Lover on March 25, 2014 at 10:21am

Hi Joan~
What part of Jersey are you from? I am outside of Philadelphia.
debi

Permalink Reply by joan on March 25, 2014 at 3:33pm

Hi Debi,

I'm from northern New Jersey.  Caldwell to be exact.  I have tried to put together a group from NJ through this site, but no success yet.

Joan

Permalink Reply by Tallgirl on March 26, 2014 at 5:17pm

Go to www.naaf.org, and look under support on the left, then click on your state.

Check out Raquel Welch synthetic wigs with darker roots and two-tone for a natural look at low cost.

Permalink Reply by Longport NJ Lover on March 27, 2014 at 9:10pm

Hi Dee~ misery loves company..lol. In about 3 weeks I went from small round patches to about 90% hair loss. I will spare you of the details but was hoping it was stress but who knows. That said I did go to an endocrinologist and he did a lot more blood work but everything has come back "normal". I see a doctor at the university of Pennsylvania on April 1st who specifically deals with hair loss so I will see what he says. I did get a human hairpiece fitted yesterday. My daughter came with me. Took a half of a Xanax (have never taken anything like that in my life!!) and got through it with only one breakdown. We are all different but I am still having trouble coping.. I drink too much wine!! Going back to work Monday with my hairpiece. I work in a school with special needs children and have been out the last 3 weeks. I've told a lot of people about what's going on. Doesn't make it any easier or better. Life has changed for us.

Permalink Reply by PamFitros@boldlybaldwomen.com on October 30, 2014 at 2:40pm

Dee ,

Ohhhh sweetie-girl, I so get what you are saying. I'm a sixty-four year old fat bald-as-an-egg-baby-boomer. The only difference between you and me is that I have come to love being a bald woman.

The first thing I want to tell you is to take a deep breath. You are not alone. I have alopecia universalis. I lost all body hair including eyebrows, eyelashes and nose hair (nose hair is all I really miss) when I was about your age. Here a clump, there a clump, everywhere a clump, clump. Pam Fitros lost her hair - ee-i-ee-i-ohhhhhhh!

The second thing I want to tell you is you have choices. You do not have to wear a wig for the rest of life if you don't want to. Dee, I shaved my hair off when I got to the stage of looking worse than a dog with mange. And, I wore a wig. I hated it.

They are hot, and itchy and never, ever, let you forget you are bald or balding. I sweat horribly under the wig, and that sweat washed down my face in mini-Mississippi makeup rivulets. They would catch on glasses and earrings and jewelry items when I wanted to give a hug to one of the residents in the continued care facility I worked in. I got yeast infections on my scalp from the warm moisture under the wig. 

As I found other women coping with the same emotional and social impacts of hair loss in our hair obsessed society, I found most of them felt the same way about wigs. And I began to think there had to be something wrong with the scenario in which men can shine up their heads and saunter out into the world strutting their stuff and be considered stylish and sexy. So, I decided to do something about it.

I sent out an invitation to women in Alopecia World to share their stories of hair loss - how they felt, how they coped, how they worked through their pain to a place of reclaiming their joy. Twenty five responded. Among them, Cheryl Carvery, Alopecia World co-founder and Mary Marshall, founder of International Alopecia Day.

I reworked these stories into a survival guide for women called Boldly Bald Women. It is full of understanding, compassion, acceptance, collective wisdom and laced with humor. Boldly Bald Women became an Amazon Best Seller and I have received the thanks of so many who have read it, found themselves on almost every page and have gone on to re-claim their peace of mind and their joy.

I invite you to go to BoldlyBaldWomen.com to learn more. While there, please sign up for immediate access to a free download titled: Getting Past the Pain - 3 Things You Need to Know.

The last thing I want to leave you with is this: trust your husband's responses to mean he loves YOU not your hair. I've been married for 38 years. All those years ago I weighed 142 and had shoulder length honey-auburn hair. When I shaved off the remaining scruff, my husband was initially startled by the change, but he soon fell in love with my smooth bald head. Through all of life's events (ovarian cancer was a big one), he has always told me he loves ME. He doesn't care what the scale says or what the mirror says, just as long as I find a way to be happy with myself as I am because he doesn't want to have to deal with me being miserable. And, Dee, I have come to become so very comfortable in my own skin.

Alopecia has become an incredible blessing and started me on a new path, with new mission to reach out to all the Dee's in the world who are grieving the loss of who they were and not knowing who they will become now that something so central to their feminine identity has changed so drastically.

Dee, I see you in my mirror every day. I know the darkness and fear and pain that try to crowd out your peace of mind and chop away at your self-confidence. And there is a way out. I have found it, and so have many other women - each following their own path leading to acceptance and freedom. I invite you to give yourself an opportunity to find your path to acceptance and freedom from pain. 

Sincerely,

Pam Fitros, author.Boldly Bald Women

So...what's not to love!

Permalink Reply by Siella scott on March 8, 2017 at 8:23pm

Testing? Every 4th attempt to post goes through. Hard enough to peck it out with tiny tablet. Anyone hear me? I lose allll I've written. Frustrated in Alabama.

Permalink Reply by Sandra on October 30, 2014 at 10:03pm

Hi Dee....I live in the Woodstock/roswell area. I have recently gone to a wig shop off hwy 9 in Alpharetta that I like. It is called LNY Salon and Lawrence is the owner. His # is 770-667-9231.

I have been in this journey for @15 years now. If you need anymore referrals or anything else just let me know.. I have been trying to find an active support group in Atlanta but have yet to find one..

I hope you find something that you are happy with..

Sandra

Permalink Reply by Siella scott on March 8, 2017 at 7:40pm

Same here. Also on meds for hypothyroidism for yrs. No help. Recently diagnosed with Systemic Lupus. Every organ affected. I, too, hate to shower and feel like vomit when I see  all the hair. But its everywhere. Bed, clothes, floor, blah, blah. I could scream. But it doesn't help. Done a lot of that before I decided on a shorter do. I haven't dated in 9 yrs. A virtual recluse. Not even enough hair to keep a band on, but too much to comfortably wear a wig. My hair is so wirey and bristled it pokes me to wear a hat. Think I'm numb right now. Too sick to care. Fid a good shop with a KIND person to assist you with a wig if you feel the need. Some I've been to are so unkind. M sure someone on hee knows a reputable one. I'm not about to shoot sunshine up your rear. Just please know you're not alone. I'm about 90 miles from Atl. On FB with same name if you like, contact me. Thanks. Warm wishes and silent understanding. Siella

Permalink Reply by Tom on March 19, 2017 at 7:24pm

Hi Dee
I'm sorry for what your going through. I know I'm a guy but believe me every emotion you are going through now I've been through also.
Please just remember you don't have to do anything. Read all the posts on Alopecia world and see some of the many ways people cope with this disease. You are not alone. 40 years ago when I got AU there was no internet. I had to go through this alone. I've done ok but you have all this support use it!

Permalink Reply by Lcat on June 22, 2017 at 11:52pm

Hi Dee,

I am so sorry you are going through all of this.  I have been slowly losing hair for years, but things have dramatically changed in the last 3 months or so and I'm going through a major shed.  It has had a huge impact on my appearance and I have been freaking out too.  I really understand how you feel.

I'm starting to think that the solution is more of a process than an AHA moment, which DOESN'T mean you are going to continue to feel as awful as you do right now.  It may take a while for you to figure out what really works for you, but it sounds like you need something to deal with the right-now problem.

For myself, I'm thinking of getting a cheap wig just to TRY it.  Something with bangs is probably best to cover the hairline, which can be the giveaway zone on a wig.  Perhaps that would be a good first step for you too. You may just want to wear it in the house for a little while to get used to the idea and the look.  You don't have to wear it out unless you want to, but you might experiment with wearing it when you need to go get some milk or something. . .

This is such a tough thing to accept, but I'm starting to think that this initial shock is the worst part.  

Hang in there and be kind to yourself.