I'm a tough cookie..but wearing down.

[pamiam]

Hi ladies. I haven't posted in a while. But I really need some encouragement. I have been on a hair rollercoaster for 6 years now. I have been to every dr. imaginable, thyroid, endo, Elizabeth Vliet, you name it. I have had 5 scalp biopsies and told this was T.E. Well, all I can figure is it has to be thyroid, but nothing stops it. I responded well to Armour/T4 but it stopped, went back to Synthroid got worse, now back to Armour and literally losing all my hair. I read all these posts about "gradual" hairloss. There's nothing gradual about mine. I look different after each shampoo, literally. I was on iron and the dr told me I didnt need it anymore. Just on my own had it checked and it was an 19! So now I am taking 650 mg of iron a day. I also have ankylosis spondylitis and I am in constant pain. I am on summer break and have spent every day looking for a wig. I dont' want to wear a wig. My head is bigger than average and I already have itchy scalp from psoriasis plus a sore scalp again. I am literally at my wits end. I have had it all checked, done it all, and am simply at a loss. I feel so ashamed of the way I look and literally have to keep my hair secured all the time. I constantly think about shaving it off just so I dont' see all the hairloss. But then what would I do? I have lost so much happiness over this. I never feel comfortable. For a long time I wouldn't leave my house. Then things improved, I went back to work, and now here it is again. I could count my hairloss for a while and would be around 100 and now there's no way I can count it. I'd say it's at least 600 per shampoo. I don't know how, but it has been like this for the last 3 weeks. I am seeing no improvement. I am scared because nothing is helping me and I can't wear a wig. Where does that leave me? Please respond with words of encouragement. I SOOOO need it.

Love to all that our suffering,
Pam

[pamiam]

So 75 ladies have read my post and no one has responded to me...maybe I feel even more alone than before I came here..

[Amy123]

Maybe no one has responded because they just don't know where to begin or what to say to make you feel any better. I am fairly new to this hair loss life and it can really suck no matter what people say to try to make you feel better. I have had bad days and better days but I think what gets me through all of them is reminding myself that I am in control. I am the one that controls my happiness. I have a choice every morning of how I'm going to face the day and so do you. There is a difference between pleasure and happiness. Pleasure comes from getting what you want but it is short lived and fickle where true happiness is lasting and is found in you. Can you remember back to when you had your hair? Weren't there other things in your life that made you sad, frustrated, angry, hopeless? There will always be something that brings you to that bad place if you allow it, with or without your hair. Now may be the time to let go.....let go of the doctors, the meds, the supplements...the counting and practice loving yourself just as you are now and make peace. Find ways to manage your stress and your pain. Try exercise, yoga, meditation, vent to a counselor, go to free reiki clinics, read inspirational books......and remember to breath. You are in control!

[Val]

Hi pamiam,

I'm very new here, and my experience has been a lot less dramatic, so I don't want to claim to have the answers for your pain and frustration. But I do want to say, hang in there, and you're certainly not alone.

One thing stood out to me about your post - the word "ashamed". I don't want to play psychoanalysis (and I'm not qualified to play that game even if I wanted to), but it does strike me as something worth thinking about. Because what's "shameful" about having a medical problem?

Our society seems to instill women with a sort of moral imperative to look "good," or at least to look "normal" - and if we don't fit the mold, we feel as if there's something wrong about us, not just on the outside but on the inside, too. As if we're... I don't know... bad or dirty or low-class or something, in a moral sense. As if a woman without hair (or a woman who doesn't like skirts or heels, or doesn't wear makeup, or shave, or whatever) is somehow... not a real and proper woman... less than a real woman... in some weird way. And that feeling gets under our skin and surfaces when our ability to continue being comfortably "normal" is threatened. But what a hurtful, damaging feeling that is - and I could be really pissed at society for training it into us!

Don't get me wrong - it's an awful experience that you're going through, and I don't want to brush it off. Nor am I saying that you should be able to just brush it off. No way! It's deeply personal, and it would be a scary thing even if you lived on a desert island with no other human in sight. And there are all kinds of real, pragmatic problems associated with it, decisions to be made about treatments and wigs and options.

But I think it becomes much, much worse because of that instilled voice-of-society... I think some of the fear, that sense of panic, comes from the voice inside us that says, "Ahhhhhhhhh, so now you're not NORMAL anymore..." And in reality, one of the things this community offers, just by being here, is proof of just how normal we really are! And maybe if we can really get that into our heads, some of the panic can recede, and leave us enough mental and emotional space to see a path or two that might work for us.

One of the things that helps me tremendously in that kind of situation is to take myself out of the realm of words and verbal thought, and into the realm of images. On the personal level, hair is really all about image and identity, isn't it? So as long as I keep looking at all those damn magazine photos of silken-tressed models, I'm just bombarding myself with thoughts of how badly I fit the norm. But if I turn around and start to look at, say, images of strong sexy women who shave their heads and FLAUNT it and look great doing it... that starts to change my feeling. Maybe I won't ever dare to actually do it, maybe it's not my style... but still it changes my attitude. It's a subtle but powerful thing.

Just my two cents' worth, and feel free to slap me if I've been unintentionally preachy... sometimes I get WAY too philosophical for my own health.

Wishing you greater peace and clarity,
Val

[FancyPantsandMe]

You posted in April and I'm wondering if you're still around.
My suggestion is to get your hands on two DVDs Food Matters and The Beautiful Truth.

The hair loss, in my opinion ( and I've lost ALL of mine, everything) is about balancing. Somehow the balance has gone whacky. In order to re-balance your body you have to begin looking at your life without rose colored glasses. Just looking with reality, not saying you are wearing rose colored glasses ;-)

What IS your stress level and what are you actively doing to reverse it and cope with it. What are your environmental, emotional, psychological, spiritual triggers? what unbalances you?

DETOX...emotionally, spiritually, physically, mentally.

In the end you may lose all your hair and there will have to be a period of acceptance. I am doing that now as I'm changing things in my life to re-balance. I believe it, every single case of hair loss, autoimmune or not, CAN and WILL be reversed if the person is willing to make changes in their beliefs around dis-ease and in their lifestyles. These are BIG changes for most of us and things we never thought we'd be dealing with.

Life is a wonderful journey..it's up to us as to how we handle what we're dealt. Find ways to empower yourself. You're a beautiful person with or without your hair.

Are you still around?
~Amy~

[kawawa]

I have 14 year plus of hair loss and lost my battle. I thought I couldn't wear a wig, but low and behold I have a beautiful bonded topper and I am loving it.

I was so ashamed and thought of wigs as a horrible solution and didn't think that my husband would accept it. I was wrong wrong wrong.

Once our hair is gone it is either supplemental hair or hats. We can't wish our hair back and when we have tried all the meds we may have to change the way we think about solutions.


Good Luck.