Replies to This Discussion

Permalink Reply by Veronique on January 20, 2010 at 11:53am

Thank you Karen,
I feel much better today.
Has your daughter shaved her hair? It's so crazy how the glue gets stuck in my hair, I hate the cleanup and but I love the wigs. Even my friends haven't really noticed. They just thought it was great and had a hard time understanding how it works. And they understand me. So yes, I am wondering about shaving my hair, but I wonder when it grows, does it grow under the glue and it still pull when you take it off? anyway, I would like to know how your daughter do her applications, if you don't mine?
Thanks a lot, and it's nice you understand what I am going through, must be sad as well for a mother to see her daughter so sad: like my mom told me, she would prefer this happening to her than to me. Thanks again

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Permalink Reply by lynne on January 20, 2010 at 10:56am

hey im so sorry ur feelin really sad, i also have the same feelings so ur not alone, sometimes its 2nd nature to put wigs on but ither days i hate it to, i dont think i'll ever accept it properly altho i know we have to get on with life, i am also 28 and worried about meeting a guy i feel it would be easier to meet someone off the comp and at least i can explain to them before we meet so if it scares them they dont have to meet me, but i believe there is someone out there for everyone but we wont find this person if we dont believe in ourselfs, oeasier said than done,
i hope that u will feel better sn and im here anytime u wanna chat, i promise i wont depress u with my stories but will try to cheer u up, {{{ hugs }}} to u, xx

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Permalink Reply by Veronique on January 20, 2010 at 12:02pm

Thanks a lot Lynn for your big hug, I send you one as well. And you are right having to wear wigs is not a natural thing, such as wearing glasses I guess, but so much harder to accept. But I keep faith in us, I am sure one day we'll be totally fine and happy, i find it stupid to let myself down with this problem, but at the same time it is a real problem for me, or make one? Ah well Im not to sure, but you are right, I believe in love, even if I had put it aside for a little while, im sure one day, soon, I'll meet some one, and you as well:-)
Thank you again for being there and if you need to talk as well Im there too. Talk to you later I hope,
Ciao and enjoy your day
Véro-;-)

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Permalink Reply by MiNAH on January 21, 2010 at 6:26am

Veronique, We are all in this "Big Boat" together, feeling every emotion you are feeling.
I would sometimes wish for family and friends to truly understand.
Yet there is a coldness, a loneliness and a deep isolation we feel, to share alone with our self.
They will say they understand, as well as even feel sad for our position.
Parents would take our pain and emotional suffering away if they could, yet they too are helpless.
The are many situations for all of us Alopecia sufferers. Family who wishes for our dilemma to change, so that they don't have to suffer with you. Also some boyfriends/husbands, girlfriends, wives are burdened with our constant problem, our emotional stress, suffering and pain.
All is emotional frustration, so, for some partners they love enough, to travel this journey with you, experiencing all the turmoil and triumphs you're going through.
Yes my sweet Veronique, the confusion, upheaval of life as it is, creates such disorder disturbance, agitation, unrest, disruption, chaos, and uncertainty.
Some days good...some days, not so good and some days bad!
No matter how many years go by, be it 5...10...20...30, or 40 years, the story and sometimes emotional suffering, the aloneness, stays the same.
The problem may travel with us, so we have to be very aware and prepared to gain our self worth and esteem back.
We need to listen to our own thoughts and innate belief in our self.
Never conform to what is spoken or said about the way one perceives us.
There are going to be people who do not understand, and who will hurt you unthinkingly. Not all have malice or cruel intent, yet their lack of knowledge, wisdom and understanding is all they know. Unfortunately society is not educated in regards to Alopecia. However, I know there are some of us who are stronger than others, and we will not allow this to go on. Within a few more years we are going to make ourselves heard in a major way. "Sooner than Later" for me too, as I am so exhausted with societies lack of compassion.
As I say...."WHERE IS IT WRITTEN, THAT HAIR IS THE RIGHT WAY".
Society has this Ego and Vanity factor, which transcends all natural, healthy thinking regards to self esteem and personal charisma. Society distorts all reason, then in turn, we respond, negative, questioning our own self worth. It has got to give way at some stage...for there are millions of us with this condition. Also for some, there is no relation to Immune Illness. Some of Alopecia sufferers are perfectly healthy. Some have other ailments that go along with Hair loss. Yet there are millions of people with Auto Immune Diseases or Disorders that have no Hair Loss.
I should say that we are the "New Human Being" on the evolution scale.
Seeing there are no answers...then for what reason should we live out the rest of our years feeling inadequate, lack self worth and isolate our thoughts from the world. I won't allow anyone to readjust my thoughts and thinking. I shall not conform or become what society expect of me. I will not comfort or entertain the insecurity of others who have to look at me.I will not give up, or give in to opinion, judgment, perception, criticism of any sort..I have said it over and over again, "DO NOT ENABLE THOSE WHO JUDGE, BY GIVING IN...BY COVERING UP" We are beautiful, and we should tell our self that over and over again. Don't let "SOCIETY DICTATE" what we should do, or how we should feel about Alopecia!
Like I have said...people don't always change.
We have to change the way we think, the way we respond to perception.
We have to be in control of our own ideas and never feel pressured to satisfying others who judge us.
This way we shall never be disappointed.
If we have a compassionate good friend, family member, husband or wife...then we are "BLESSED"
My ex scolded me for shaving, and for not wearing a wig, also had a hard time walking next to me in public...so it's over!!
My Dad told me just yesterday, to
"LOSE THOSE HIPS"
"LOSE THE WEIGHT"
"MAKE YOURSELF PRESENTABLE"
"MAKE YOURSELF ATTRACTIVE"
"PUT ON YOUR WIG...OR GROW WHAT HAIR YOU HAVE LEFT"
My step mother has said............."PUT ON A WIG SO YOU CAN LOOK LIKE A REAL WOMAN"
I wore my Prosthesis, and wanted to show the inside to my step mom.
As I went to remove it, she stopped me by saying "NO...NO...NO....DON'T TAKE IT OFF, I DON'T WANT YOU TO SPOIL THE GOOD IMAGE I HAVE OF YOU"

I WAS SITTING NEXT TO A BUSINESS ACQUAINTANCE ON THE PLANE.
THE NEXT DAY OVER THE PHONE, I TOLD HIM I WAS WEARING A WIG, THAT I WAS TOTALLY BALD.
HE SAID NOTHING...THEN SUDDENLY SAID HE HAD TO HANG UP!!

My brother also said, "YOU CAN'T BLAME PEOPLE FOR THINKING YOU ARE SICK IN THE HEAD, FOR WALKING WITHOUT COVERING.
I have a long History of Stories...some good...some not so good.
No person has the right to punish us for something we have no control over.
I STAND TALL, "PROUD AND BALD"
"NEVER GIVE UP"
LIVE YOUR WONDERFUL LIFE AS IT WAS MEANT TO BE!
LISTEN TO YOUR OWN THOUGHTS AND CHOICES.
NEVER CONFORM TO MAKE OTHERS HAPPY, WHERE IT CONCERNS YOUR ALOPECIA.
BE STRONG AND PROUD TO BE YOU!
EVEN THOUGH YOUR HEART IS BREAKING.
NEVER LET THEM SEE THAT SIDE OF PAIN, BECAUSE THEY WILL NOT UNDERSTAND, UNLESS THEY HAVE GREAT EMPATHY.
I PERSONALLY DON'T WANT PITY FROM OUTSIDERS, AS THERE IS NOTHING WRONG WITH US.
IT IS SOCIETY WITH THE PROBLEM.
REMEMBER THAT, WHEN YOU FEEL WEAK IN THE KNEES AND YOU FEEL LIKE CRYING INSIDE.
SHAVE IF IT MAKES YOU COMFORTABLE, AND WE ARE WITH YOU...IN HEART!
ALSO HERE ON THE WEB...SO KEEP REACHING OUT...........
MiNAH

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Permalink Reply by MiNAH on January 21, 2010 at 9:09am

Yes Susan, it is sad yet not all together true.
My dad is a learned person, who can sit for hours talking Politics and Religion.
My mom who has Dementia, is not in this equation.
She was the most of all learned family members, comes from Doctors and Specialists.
My ex, is learned, should be President!!
He too, can sit for days talking Politics.
That is his strength and discussion.
Also, he's the Worlds Greatest Philosopher.
Yet..."do not interrupt him"
Ran for City Commissioner and knows business all too well.
Yet it saddens me that there can be such negativity and ignorance amongst educated people.
My brother is highly educated, yet cannot talk science as I!
He can sit talking Politics, History, etc.
I feel alone when it comes to anything Medical or Scientific.
My ex said constantly..."YOU'RE TOO SCIENTIFIC"
So it so appears that no matter what walk of life you encounter, there are always going to be ignorant people.
I have had discussions with medical practitioners, that did not know many of the things that I knew.
It made me very uncomfortable.
I went to a neurologist for tests, and that Dr did not know the word Fervent, Fervid, or Fervently.
Said that there was "No Word As Such".
Then she looked into the dictionary, seeing she did not trust my word, and behold!
This for her was a disgrace, and I was stunned.
This goes to show you that not all professionals are on top of their Game.
So good hearing from you Susan!
I am so glad to hear that you have had people who truly care deeply about your feelings.
That is so very refreshing and comforting to hear."WOW"
I do find it strange that my dad is so vain, at the expense of my feelings.
He says it without any bother...he thinks it's out of love for me.
Strange my dad is like this, as he has lost his entire family to the Holocaust.
I wish I had some of these people in my court as you do.
Oh well...we have our own crosses to bear.
Minah

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Permalink Reply by Alicia Duncan on January 22, 2010 at 10:57pm

Minah
I agree with many other posters here in expression compassion for the nonacceptance you are having to endure! :( It is odd, non-loving, energy you are surrounded by. Education and/or intelligence is not the same has having an evolved, loving, compassionate soul.

I heard a quote once that I adore. "Friends are God's way of apologizing for your family." I hope you are able to find people in your life that have moved to a deeper level of understanding and loving in their lives and can support you.

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Permalink Reply by Lauren Simpson on January 22, 2010 at 9:43pm

If you are already wearing a wig. I would just shave the rest of your hair off. Im 17 years old and i finally shaved my head about 5 months ago., It was such a relief and soooo much more comfortable without the hair underneath the wig being pulled on. It makes life soooo much easier wearing a wig,and having a shaved bald head.

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Permalink Reply by Alicia Duncan on January 22, 2010 at 10:40pm

Veronique!
I'm so glad you posted this! Bless your heart. I get exactly how you are feeling!

I recently just had an integration piece that was supposed to allow the little hair I have left to pull through and be part of my wig. I sounded more 'natural' to me. No one could predict what was going to happen (I blame no one). The attachment literally pulled my hair out of my head because my hair is so fragile. Oh my word! The pain.

So, I went full wig. I was ready. However, I kept my tufts of hair underneath. The first couple of days taking my wig on and off was hell having hair get all stuck in the tape, pulling out of my head, making more patches, spots, inducing pain, crating a tangle of wig, hair and tape...I just couldn't stand it!

On Jan. 8th I shaved it off! I cried...happy/sad tears! It was truly a bitter sweet experience. But I can honestly say, I am so happy I did it. I love the power it gave me. And strangely enough, for once, I could see "me." I had no idea that for years I was mostly seeing the painfully faulted part of myself. My hair was a pity magnet! When I shaved it off, I removed the focal point of my nonacceptance and suddenly something in me was set free.

My friends, without knowing because I have a wig, have all said, "you have just been glowing lately...what gives?" It has literally freed up so much mental energy for me because I let go of something that really wasn't there anyhow.

I hope that if/when you decide to do the deed, it sets you free of that in between space and allows you to let go of what was and be at peace with what it is! (And be a little more comfortable! ouch! right?!)

Hugs to you! You'll be OK! :)

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Permalink Reply by Christina Argott on January 28, 2010 at 10:50am

Hi. I am new to this site, but I read your blog and I understand what you are going through. I am also 27 and have lost about 75% of my hair. I am getting a wig made for me, and come April 1st, if I have lost a lot more hair, I have decided to shave it. Right now, I am not scared to shave it. I think that if you "grab the bull by the horns", and shave it yourself, you might not feel bad about it after. It might be a little redemption instead of watching to rest of your beautiful hair fall out. That is my theory...is it correct, i don't know. I won't know until I actually do it. But it seems to have worked for other people. If you shave it, the glue wont stick anymore and maybe you won't be sad. So, the countdown is on for April 1st...i will keep you posted.

I also feel like there is no one to talk to about this. I feel sad when i bother my family or close friends with this. It is my problem, not theirs. I feel embarassed to go out in public without something on my head covering up my bald spots. Like you, i associate hair with beauty...but after having this, i know I am more than my hair. I can have a different hair do everyday, and guess what, 90% of the people i meet or encounter will never know...those closest to me will, but they know about my alopecia and love me just the same. I can have long brown hair one day, and then next short and blonde. I am trying my best to be positive about this...some days it is good, and some days not so good. Last night was a bad night. I had my 2nd dose of steroid injections into my scalp...it hurt so bad and I was up all night with one of the worse headaches I have ever felt. Today, seems like it will be a better day. I am hoping it will be.

Hope this helps. I envy your courage and hope to talk to you soon.

Christina

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Permalink Reply by Veronique on January 28, 2010 at 2:48pm

Hello Christina,

Thanks for your message! I really love this site where you can say how you feel and people are so understandig cause they are or have been going through the same. Keep me posted when you shave your head. I did last sunday and it actually feels wonderful to take control. And my wig is comfortable, for a wig...O course I wish I still have my really hair, but I prefer the wig to my missing hair... I am 100% satisfied with the look, for the comfort: I'm sure I will get used to it. It is really light, and having shaved my hair help with a more comfortble feeling. I didn't take the wig off since I shaved my head, I will do it tonight or tomorrow. I'm still a bit scared, cause this time I will try to shave my hair myself ( the first time the hair dresser dit it for me with a clipper). So tonight: take the wig off, shave and wash and put the wig back on. All of this is new to me so I'mm scare to cut my head, or to not be able to put the wig back on properly, but I guess with practice, we'll become pros!
Thanks for your post and keep me posted when you get your wig. Good luck and I give you all the courage you need,
Vero-

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Permalink Reply by François on January 29, 2010 at 5:47pm

Véronique,
Je compatis avec toi, je connais le sentiment que tu ddécris d'être seul...seul dans ta situation et même à certain moment être seul au monde.
Je vis seul 1 semaine sur deux et j'ai dû apprivoiser ma solitude et ce n'est jamais facile.
Pour tes cheveux c'est quelque chose que tu vas apprivoiser avec le temps, une étape à la fois...Il faut laisser le temps au temps de faire son oeuvre...Je sais facile à dire mais pas facile a vivre lors des moments difficile.
J'ai du me résoudre a me raser les cheveux aussi...Peut-être plus commun chez les hommes mais quand même dur à accepter.
Je suis convaincu que tu seras très belle sans cheveux si un jour tu réussis à le faire et à l'accepter, crois moi c'est possible...Mais ça prend du temps !
La beauté viens toujours de l'intérieur avec ou sans cheveux...Keep your head up !!!

François

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Permalink Reply by Veronique on January 29, 2010 at 8:38pm

Merci françois:-) Keep your head up, yeah, I like that! Parfois j''adore être seule, mais il y a plusieurs sortes de solitudes. Souvent, je me sens plus seule entourée de plein de gens que quand je suis vraiment seule. Mais comme tu dis il faut apprivoiser cette solitude et apprendre à être bien seule avant d'être bien avec quelqu'un, c'est ce qu'on dit et c'est logique à mon oeil. Lorsqu'on est bien avec soi-même on est bien partout. Alors let's work on that:-)
Have a good weekend.
Ciao Ciao!

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