alopeciahope

The Pretenders

2005-11-08T13:42:00.000-08:00

Are you a pretender? Do you wish you were something you are not? Do you wish you were someone you are not? Do you wish you had something you don't? I am not saying just because we wish for things and desire things it means we are pretenders. However, if wishes become all encompassing causing you not to perform, or self absorption prevents you from helping others then you may be a pretender too.

For years I was a REALLY REALLY good pretender. I would pretend almost anything. I would pretend I "fit in" with everyone. I would pretend my hair never fell out. I would pretend I was many pounds lighter. I would pretend I didn't come from a dysfunctional home. I would pretend I was "normal". I would pretend I was a very healthy child, who had some health problems. I would pretend my hair was going to come back at any moment "now". I would pretend I didn't wear wigs. I would pretend ..... almost anything.

After years of pretending, I found myself with too many "rules" to live by. Suddenly I had so many rules that I couldn't keep up with my lists to check the "rules" to make sure I was following them. Pretending became exhausting. As I began to let go of the things I "thought I should be" and simple allowed myself to be who and what I was/am, peace and freedom began filling my very soul.

I'm still learning not to fall into my "pit of pretending". Some days are easier than others. I have learned the older I get that I am best to keep things simple. My goals for the day are usually quite simple... PRAY... PLAN... and PERFORM part of my plan. I search for things to laugh at during each day, because laughter truly is good medicine. Sometimes I laugh with my young nephews (the oldest one is 4). Sometimes I laugh with friends, family, and colleagues. Sometimes I search books and emails to find things to laugh at.

There are days I still wish I had hair. However, the thought no longer rules my life. I used to make sure every outfit I wore matched down to my underwear!! I was so color coordinated it would become a topic of conversation. My hair or wig had to be perfectly in place. My panty hose could not have a run in them. My pens, watch, purse, wallet, briefcase, shoes, belt, etc HAD to match. I was a pretender. If I could pretend this part of my life was "perfect" then I was doing good, really good.

Now... I do good to wear hair everyday. Somedays I go without any head covering, make up, watch, and somedays I'll carry a green pocketbook with a pink outfit!! WOW.. what a long way I have come!!

I don't believe we are here to be pretenders. Life is not perfect, and if each of us is willing to stand up and simply be who we are I honestly believe there will be much more peace and happiness. Most of the wonderful people I have been blessed by in my life are the "real ones". They simply are who they are, and I KNOW you know people like that. I know you have the strength to do it, if you want to. If I can let go of a lot of my pretenses... I KNOW you can too. I don't know if they will all ever be gone, but I do want to simply be at peace with who I am, the good, the bad, and the ugly.

As I have walked this journey as a fellow alopecian I have been able to meet some of the most wonderful REAL people along the way. Some have alopecia and some don't. Some grew up in alcoholic homes, some didn't. Some have great health, and some don't. People who have touched my heart in ways I will never forget simply because they were being who God created them to be, no pretending.

I encourage you to be all that God made you to be, no more and no less. Simple be the best you can for the day. Some days my best is that I never get out of my sweats yet I accomplish an enormous amount of work. Some days my best is simply the best I can do for that day, for that moment. As Dr Phil at www.drphil.com says: "Live in the Moment"!!! I have a long way to go, but I know my life is much freer without so many rules and so much pretending.

A person that I have met along the way that is such an awesome person in dealing with her alopecia is JODI Pliszka. She is no pretender. She has written children's books about hairloss that are a real treat. Incase you would like to visit her website and see what an awesome person she is you can go to www.jodipliszka.npauthors.com.

I say HATS off (wigs too if you want) to letting go of our pretenses, and simply being who we are, as we are, today.

If you would like to share inspiring stories of others you know, I would LOVE to hear from you. You can comment here on my blog site if you would like or you can send me an email at gbsmudski@nc.rr.com.

To Hair, Hope, and Healing,

Gina
www.thewomenshop.com

Good Morning America on ABC discussed alopecia

2005-11-01T16:33:00.000-08:00

On October 11, Good Morning America on ABC did a small segment on alopecia. I was so excited to see this on the air. We are not alone!! There is hope, help, and healing.

The show discussed the following information:

"About 70 percent of female hair loss is genetic. Other causes include stress, illness, medication and diet. Crash diets, tight ponytails/braids/weaves/extension, thyroid disorders, pregnancy, going off birth control and general anesthesia can all result in hair loss.
"Hair loss is an emotional problem for women," said dermatologist Susan Taylor. "My patients have told me they don't want to go out in public, they don't feel good in relationships with partners. They are uncomfortable going to work, and don't like to do anything with the public."
Taylor said hair styling techniques using chemical relaxers, hot comb, weaves or extensions have had a marked effect on women's hair loss, especially for black women. She said in the past 15 years, there's been a 50 to 60 percent increase in hair loss because of styling.
Taylor offered the following advice for preventing female hair loss.
• Don't ignore the problem. Get help soon.• Hair care should be gentle, not painful. If it hurts, it's going to harm your hair.• Avoid tight ponytails.• Use gentle shampoos, nothing that itches.• Don't skip conditioner.• Don't over brush."

I thought these were some good tips. If you would like to see the information in more detail the website is http://abcnews.go.com/GMA/OnCall/story?id=1202273&page=1

To Hair, Hope, and Healing

Gina ~~
Alopeciahope

www.thewomenshop.com

Perspective

2005-09-17T08:26:00.000-07:00

I am so deeply humbled by the devastation caused by Hurricane Katrina. Living in North Carolina, I am no stranger to the terrible destruction people are left with after hurricanes level an area and the rains result in flooding. Regardless of whether an area is ravaged by hurricanes, tornados, tsunamies, earthquakes, or raging fires the end result is that the survivors are left to somehow put their lives back together.

The pictures I see of of the effects of these disasters leave me speechless and greatly saddened. Having lived through Hugo, Fran, Floyd, and a few others in my area over the last few years (and I am 3 hours away from the coast) I know the feelings that emerge afterwards. Feeling empty, overwhelmed, lost, limp, hopeless, and numb are very prevelant. Hoping the event was all somehow a dream where you will wake up and things will be normal again is often a first reaction. Coping with the results finally sets in. If the total destruction was not enough to deal with, we must still move forward and somehow rebuild often without loved ones or cherrished possessions.

When I look at the many people who have lost so very much, have no where to go, no home to return to, no jobs, and often must face the loss of a loved one I am soberly reminded once again that things could be MUCH worse.

I am grateful to be writing you saying that the only thing I have lost is my hair. I'm not saying this to minimize the pain that goes along with hair loss. Please don't take this as if I am minimizing what we go through when we lose our hair I am simply brought to my knees to say "Thank you" for today this is the ony thing I have lost.

Just as caring people have come to the aide of storm survivors, we have come to the aide of each other in our loss of hair. For this, I am deeply grateful that there are support groups and others out there like me that help me who reach out and touch my heart daily.

If you have a strong desire to help the survivors of Katrina but aren't sure what you can do, here is a suggestion. A group I am aware of that could use our help is a Cancer Support group in Baton Rouge, LA. Should you have either new or slightly used wigs that you no longer like or use, you may want to consider donating them to following person/group. This is a cancer support group in Baton Rouge, LA that is in need of wigs, hats, turbans, and more that are clean and in really good shape. Incase you would like to donate here is the information:

Cancer Services - Baton Rouge
550 Lobdell Ave
Baton Rouge, LA 70805

The contacts are Sandy Morgan or Susan Moreland @ 225-927-2273 @ smoreland@cancerservices.org.

Humbled,

Gina
www.thewomenshop.com

Does Insurance Cover Wigs

2005-08-28T11:21:00.000-07:00

Many people ask "will insurance cover wigs?" Although I do not file insurance for my clients I do provide them with steps to take to file for reimburcement. I have on occassion made calls with my clients to their insurance provider to try to "interpret" the insurance policy.

The one thing I do know is that most companies will NOT reimburce for "wigs". Medicare will NOT reimburce for "wigs" or "cranial or hair prosthesis" according to the current laws. I am totally amazed (more like blown away) that the insurance companies still see this as a cosmetic luxury rather than a medical need. I suppose that the insurance companies would rather pay for counseling and medication to help us cope rather than deal with the actual reason for our pain. However, my comments are coming from a layperson and not a professional in the insurance industry. Yet it would seem to me that if you deal with the source of the pain and provide hope and solutions the recovery time might be shorter and the expense less to the insurance providers, but again that is only the opinion of one.

I honestly believe insurance companies want to make hair reimbursement as difficult as possible. That may sound very callous and my desire is not to beat up on the insurance industry nor to come across as sarcastic. However, I deal with them a lot and hope the information below will help you file your claim and get any reimbursement your policy allows you to have. I have yet to see any insurance company approve the claim for a “cranial prosthesis” on the first submission, so prepare to be determined.

Here are the steps I have found to be most useful:
1. Your Dr must write you a prescription for either a “hair prosthesis” or a “cranial prosthesis” and state the reason for the need such as alopecia areata, alopecia totalis, or alopecia universalis, etc.
2. Ask your Dr to write a letter on their letter head to the insurance company stating your need for a cranial prosthesis due to a medical condition which could most likely to be a permanent part of your life. Should you be reading this and have hair loss due to cancer treatments ask your doctor to state that as your reason and that you will need hair for approximately 2 years due to the treatment. Some insurance companies require both the letter and the prescription, some require only one of them.
3. Call your insurance company and ask for someone who could help you concerning Durable Medical Equipment (DME) and what your policy specifically states concerning prosthesis. Once you have an expert on the phone from your insurance company and durable medical equipment ask them if they have any suggestions concerning submitting a claim for a cranial/hair prosthesis. Be prepared for them not to understand your question. Explain to them what you have and that you have a prescription from your Doctor for a prosthesis because your hair loss is not something you chose, but something you want to live with in dignity and respect. Stress to them this is not a wig for cosmetic purposes, but a medical need. Once they understand ask them for their help. I call this “making a friend” in the insurance company. Ask them if there is a specific code they need on the claim form for a cranial prosthesis. Also ask them if they could send you a copy of their claim form. Be sure to get their name and extension number incase you need to call them back (trust me you will probably have to call them back). Ask them if they have any advice for you concerning anything you can do to get this filed and processed easily.
4. The salon or person selling you the prosthesis must supply you with a receipt or invoice. The invoice must show exactly what you purchased and must use the terminology of either hair prosthesis or cranial prosthesis. It must also show you have paid in full either by credit card or by a check. If you paid by a check the check number must be on there. The owner of the salon must sign the receipt/invoice and state paid in full as well.
5. Keep copies of everything you submit to your insurance company, incase it gets lost or misplaced.
6. Send this information to the insurance company to the attention of the person you have been speaking with. Be sure you ask the person if it is OK for you to do this simply to try and speed up the process.
7. Be prepared for the claim to be denied.
8. Be prepared to call your contact concerning the denial and ask what more you can do.
9. If you are denied ask for a specific reason and ask them where in your policy that it states specifically that a cranial prosthesis is not covered. If they can not provide you with this information then you need to ask them to send you a copy of your policy if you don’t have a copy.
10. Some insurance companies do not cover cranial prosthesis at all, and it is stated specifically in their policy. NO companies cover “wigs”. Medicare will not cover wigs or cranial or hair prosthesis. I have seen some insurance companies who cover 1 cranial/hair prosthesis in a life time. I have seen some that will cover 2 a year. However, any of them that cover the prosthesis will usually deny the claim at least once. I have seen claims denied 4 and 5 times taking a full year to receive reimbursement.
11. Stay strong and see this as a journey. Know it can be frustrating. Don't give up until you are either given a specific provable reason for the denial or you are reimbursed.

I would love to hear from you and hear your experiences. Let me know if these suggestions have helped you. Let me know if you get reimbursed.

If you would like to respond but not through the blog my email address is gbsmudski@nc.rr.com.

Hairs to you

Gina
www.thewomenshop.com

Hair Loss and How to Cope

2005-08-24T11:17:00.000-07:00

Finding suggestions on how to cope with hair loss is rather easy. Coping with the hair loss in reality is not at all easy. Personally, I don't believe "time heals all wounds", yet it does give us the "space" we may need to move through the grieving process. In an article titled "Hair loss: Cancer-related causes and how to cope" written by/from mayoclinic.com can be read in full at http://www.cnn.com/HEALTH/library/CA/00037.html.

Hair loss is hair loss regardless of the cause. There could be differences in the duration of the hair loss, but the shock and loss are ever present. I have the wonderful honor of serving clients who have lost their hair due to alopecia, cancer, trichotillomania, drug interactions, scleroderma, diabeties, chemo, radiation, tumors, and many other reasons. I say honor of serving because I feel that out of my own growth from something so painful and life changing, I am able to give some help to prevent others from going through some of the same challenges I experienced. Challenges where I fell flat on my face with such things as wigs flying off in parking lots or being pulled off by someone's watch who hugged me. At the time those things were horrifying to me. Yet now I can look back and honestly laugh about the experiences. I would also like to think I have learned a few things so those things don't happen again (like wig tape).

In the article I mentioned above the focus is on cancer treatments but they do provide some good tips. They discuss choosing a head covering which is a "purely personal decision. For many women hair is associated with feminity and health so they choose to maintain that look by wearing a wig. Others choose hats and scarves, and others choose not to cover their heads at all. "

There are so many choices out there in wigs/hair solutions. There is human hair, synthetic hair, and combination of the two. There are many different cap styles for the wigs such as wefting, machine made, hand tied, french lace, thin polyurathane, silicone, monofiliment tops, mesh, etc.

Hats, caps, baseball caps, sequined hats, cowboy hats, scarves, turbans, bandannas, hats with hair, and alternatives with hair sewn in them are all options to consider.

Making sure you have good shampoos, conditioners, and sprays that extend the life of your hair rather than shortening the life of your investment are important as is the choice of a licensed cosmetologist. Choosing a hair stylist who knows how to cut wigs is very important. A stylist who has had additional training on wigs and/or has had a lot of experience with them is very important since a wrong cut can ruin your investment. However, the wigs are not to be feared, simply respected. Choosing to take more off is always a possibility, putting it back isn't going to happen.

My rule of thumb is comfort. What is comfortable for you may not be comfortable for me, but they are both "right" for each of us. I like to wear hats that are specifically made for the person going through hair loss. These specifically designed hats tend to be softer on the scalp and made to breathe. Looking into options of fabric is also important to me because I want to be sure my head breathes. I stay so very hot anyway (I guess it is the Italian coming out) that I want to make sure air can circulate.

Purchasing hair is a HUGE step. Wearing it is EVEN bigger. No hair is ever going to replace the feel of that natural growing hair. No one can really prepare you for the adjustments you have to make when purchasing "new hair" If you have grown used to your look without hair or much of it, then a wig is going to appear thick. They can be thinned and trimmed depending on the type of hair. Take a good friend with you who will tell you how the hair looks. And remember, you don't have to settle for a "wig in a box" as your look. Make that new hair your own. Wear headbands and scarves and clips and pins with it. Have a good stylist cut and style it just for you. Allow yourself a few weeks to adjust to the new you. And remember that when people get perms and coloring done on their naturally growing hair they also have to have an adjustment period for the "new them". Adjustment takes time. Allowing change takes time.

So I am back to the beginning of my story. I don't believe time heals all wounds, but it does allow us the space to adjust and grow. Although I can't grow much hair, I have grown greatly inside. I've chosen to allow myself and my heart to grow. Don't beat yourself up for who you are or what you aren't. You can survive this. I am no different from you and if I can do it .... anyone can.

Hairs to you!
Gina
www.thewomenshop.com

Erma Bombeck's book "I want hair, I want to grow up, I want to go to Boise, Children Surviving Cancer"

2005-08-17T10:51:00.000-07:00

Today I started reading a book written by Erma Bombeck that has a copyright of 1989. The book is an inspiring read.

Sometimes when I am allowed to think to long about my hair loss, I will isolate myself into my own little capsule. Sometimes the isolation is a healing place. Sometimes is will pull me down further. The difference to me in the result is in what attitude I take and what I allow myself to ponder on. If I allow myself to feel alone, fearful, and full of shame I go down. If I allow myself to read good things, help others maybe by writing a card, or even see the best in where I am it becomes a healing place.

My isolation today has allowed me to read parts of Erma's book. She speaks to children who are surviving cancer. She talks to them about things they want and what their life is like.

On page xvii she states: " I expected to hear anger about the disease that brought all of them to this airless trailer on a July afternoon. I didn't hear it.

I expected despair over the hand of cards they had been dealt. That didn't happen either.

I expected fear of a future that held no warranties-no guarantees. It never came up.

What they did talk about were the people who don't appreciate each day. One eighteen-year-old talked about his friends on drugs. He told them, 'You wanna do drugs? Do chemo for a year. It'll give you the same effect and make you feel just as lousy.' They talked about how wonderful it would be if people would let them get on with their lives. 'We need hate once in awhile,' said one. 'I had a teacher last year who shouted at me on the first day of school, 'Sit down and be quiet!' She treated me like everyone else. I knew it was going to be a good year.' 'Yeah" said a sixteen-year-old boy. 'It's like people whisper around you and they never laugh. Man, without a sense of humor I wouldn't have made it this far.'

As they talked and laughed about their lives, suddenly I felt like I was the innocent child and they were the adults, dispensing wisdom. And I knew then these kids deserved better than buckets of tears and public pity. Their legacy was too important to pack away like a fading photograph. In a world short on role models, they set standards that can never be topped.
They tested drugs and served as experimental pincushions in the war to eradicate one of the most devastating diseases of this century. Without them, this book on cancer survival could never have been considered. ... Their very being gives us a real sense of what this life is all about if we listen.

The hopelessness I had brought in with me dissipated.

The answer was somewhere within these ten kids. They seemed to have come to terms with their common enemy and were prepared to give it the fight of their lives. I couldn't pity them. Pity is reserved for those who have no fight left in them.

They reminded me of candles in the wind who accept the possibility that at best they are in danger of being extinguished by a gust of wind from nowhere and yet, as they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light.

I made my decision. Humor and optimism had kept these kids in the mainstream of life. Perhaps laughing and believing in themselves was a major part of their survival. These were kids who had every intention of living long enough to go to Disneyland, drive their mothers crazy, live in bedrooms that should be condemned, go to the prom, eat pizza for breakfast, and grow old.

I was looking for a book of triumph -- maybe not over the disease but over despair. Not only the kids, but everyone who had been touched by cancer had to come to terms with it -- the exhausted, guild-ridden mother, the father who lost his five-year-old child, the sibling who felt abandoned, the camp counselor who couldn't stop crying, the nurses and doctors who were all cried out, the friends who wanted to help but didn't know how.

...Somehow I knew when I finished this book, I would never be the same person I was when I started it."

All I can say is WOW!! I realize our AA, AU, AT is not life threatening. However, it often feels like it is. The "mysteries" that surround this "auto immune deficiency" make US seem like a mystery. My personal desire has been and often is "to be treated normally", much like the kids Erma Bombeck speaks of in her book. I don't want to be looked at differently. I don't want to be treated with kid gloves. I want to do normal things and be comfortable doing them I want to be loved and supported, and not whispered about. Much like the kids in this book (although I am merely a kid at heart), I have found that a good sense of humor and my faith is what gets me through bad days or moments.

I take on an attitude of gratitude in whatever I am dealing with, which I didn't say was easy. I just decide that is how I will proceed. I also look around me and see things could really be worse. I don't deny my feelings. I choose to take them my the throat and deal with them. Some days I deal well, some days I don't. Yet, if I look at the attitude of these kids in this book I find inspiration, humor, and hope to deal with own my situation with a more positive attitude.

May you find hope, humor, and inspiration in this day. If you would like to write me but don't wish to do so using the blog, my email address is gbsmudski@nc.rr.com

Hairs to you,

Gina
www.thewomenshop.com

PS. Erma B wrote this book for children surviving cancer in 1989 which was 2 years before her own cancer was diagnosed. http://vava.essortment.com/bombeckermacol_rbzi.htm has a biography of Erma B's life. This article states: "In 1991, Erma was diagnosed with breast cancer and checked into the hospital. She underwent a mastectomy shortly thereafter. Two years later, her kidneys began to fail, and Erma began a daily routine of dialysis. After three years of waiting and daily treatments, Erma Bombeck received a kidney transplant on April 4, 1996. For the first time in her life, she addressed her disease with her readers, writing about illness, compassion, and suffering. Her readers responded with thousands of letters of their own. Erma Bombeck died of complications from the kidney transplant April 22, 1996. She was 69 years old."

Even if we don't have hair, there might be something good to know in this article

2005-08-17T10:31:00.000-07:00

I found an article about "Is hair dye dangerous" in a newsletter I received from "The Compounder". You may be wondering why I would use this information on a site for alopecia. This article offers up some things to consider in using dyes for hair, eye brows, and tattoos. I believe holistic medicine is very important in our lives today as is knowledge. Let me say I am not against the government or traditional medicine. Personally I am proud to be an American and live in a country where we have so many privileges. I am also grateful for traditional medicine because I would not be alive today if it were not for some very awesome Doctors. However, I do believe we must each be responsible to try and gain the "entire picture" for things we are searching for in our lives. The search for truth in all areas is not an easy one. This article is intended to give insight and possibly another opinion to ponder. So, put your thinking caps on and please let me know what you think. Did you have a stressful event that possibly contributed to your hair loss? I don't know, I'm just asking.

The following article has been copied from: http://www.thecompounder.com/ishairdyedangerous.html

I found this incredibly interesting concerning affects of hair dye. He also mentions that "stress is the number one factor causing hair loss in women".

Why We Go Gray and Is Hair Dye Dangerous? by Robert Filice, M.D.
While certain people are able to accept their graying head with equanimity and grace (Barbara Bush), and others look great with white hair (Sean Connery, although he does color his eyebrows!) or proudly think of it as a sign of increasing wisdom, many people panic at the sight of that first white hair. In general in this youth-oriented society, most of us want to look as young as we can. Maintaining hair color is a very important component of that quest. Graying hair and eyebrows make the face look washed out, and take the vitality away from most people’s appearance. Usually the graying process is gradual, but it is true that in rare cases some people have grayed very quickly when subjected to huge stress. Part of this occurs because the stress made darker hairs fall out, making the gray ones stand out more prominently. Plus the hairs coming out of resting phases come in white. Existing hair does not convert into gray hair. In keeping with the hair cycle, new hair from previously resting follicles grows out with less pigment and shows up as that dreaded gray hair. Stress is the most common cause of hair loss in women. As a general rule in Caucasians, 50% are 50% gray by the age of 50. This varies by ethnicity. It is not unusual for graying to begin in the 30’s, but if I see a patient who is very gray in their 40’s or 50’s I will always ask when the graying process began.
An early start to getting gray hair (often well advance in their 20’s) is a very characteristic feature of the individual with a usually undiagnosed underactive thyroid. This phenonmenon also occurs in families suggesting a genetic component, but there is a familial/genetic component to hypothyroidism also. Other hormonal factors have been definitely implicated in graying. Deficiencies of DHEA, testosterone, and growth hormone, and too much DHT (dihydrotestosterone) are the leading suspects.DHT is the testosterone metabolite thought to also be responsible for male pattern baldness. In that case there is complete nutritional strangulation of the hair follicle, while with graying there is just a partial interference at the follicle’s root. Stress induced graying may be from depletion of adrenal hormones and the associated trace mineral depletion that can go with it. Whatever the proximate cause, gray hair occurs because of the loss of the pigment called melanin in the keratin producing cells of the hair shaft (keratinocytes). When these cells die they become part of the keratin of the hair shaft, and retain the melanin, thus giving hair its color. Blanching occurs because the melanin producing melanocyte cells decrease or stop producing it, and stop passing it over to the keratinocytes. What you see is actually a transparent hair the natural color of the keratin. There is no white pigment in the hair.There are some additional known factors that affect the graying rate. Premature graying is 4 times more likely in smokers. General stress and physical illness also accelerate the process. I also believe that anything that increases free radicals or diminishes anti-oxidant defenses is likely to speed up the graying rate. B12 deficiency and associated pernicious anemia are also associated with this problem. Early graying (before 40) is clearly a sign of accelerated aging, and a recent study found an associated increased risk of osteoporosis in such patients later in life.There is definitely some evidence that the use of commercial hair dyes can be hazardous to your health. I remember thinking when Jacqueline Kennedy Onasis died that her use of dark hair dye might have played a role. Sure enough, Hodgkins disease and multiple myeloma are suspected of being related to the use of such products. And data from the National Cancer Institute suggest that 20 percent of all cases among women of non-Hodgkin’s lymphoma, the disease that killed Jacqueline Kennedy Onassis, are due to women’s regular use of commercial hair dye products. The evidence is also suggestive of an association with breast cancer, as reported in The Breast Cancer Prevention Bible (Macmillan 1997). The dye para-phenylenediamine (PPED), used in virtually every commercial permanent and semipermanent product appears to be the culprit. It was shown in 1986 to be carcinogenic to the breast following oxidation with hydrogen peroxide, precisely as these products are used by women. Further evidence of the cancer risk from hair dye use comes from studies of hairdressers that have provided clear evidence both men and women are at heavily increased risk for bladder and other cancers. Finally, hair dyes may also pose a risk to children whose mothers used them shortly prior to conception or during pregnancy. In fact, the risk of childhood cancer could be increased by as much as tenfold. It appears safe to assume that the darker the color, and the more frequently it is used, the greater the health risk. The fact that the hair color industry is legally exposing millions of women to carcinogenic chemicals without label warnings is, in part, due to legislation governing cosmetics dating to the 1938 Federal Food, Drug, and Cosmetic Act. At that time, intensive special interest lobbying on behalf of the hair dye industry persuaded Congress to exempt the dyes used in these products from government regulation. Under the Act, only an acute health hazard warning is required to be included on the product labels that blindness might result from use on eyelashes and that a preliminary test should be conducted to avoid allergic reactions. This legislation shouldn’t be an excuse for the Food and Drug Administration’s inaction on this issue. The fact is that the FDA has never gone to Congress asking for regulatory authority over hair dyes. Nor has it advocated explicit labeling of hair dyes for their carcinogenic hazard. The FDA has always heeded lobbying pressure from the hair dye industry. The dirty secret behind hair dye’s glamorous façade remains concealed in a complicit unspoken pact between Congress, the beauty industry, and lobbyists. As in other areas of medicine and health, the government and the FDA are not necessarily our friends.While we are trying to optimize the system by correcting hormonal and nutritional imbalances, and helping to slow and in some cases reverse the problem of graying, I urge my patients to read labels and meticulously avoid all hair dyes and other substances containing para-phenylenediamine.. Aside from its cancer causing potential this substance is also extremely allergenic. Be aware that in some places of the world it is also being substituted for henna for making temporary tattoos. Henna is expensive while PPED is cheap. The resultant allergic reactions can sensitize the patient in such a way that they are then permanently unable to tolerate any topical cosmetics on the skin. A tip-off to the presence of PPED is a cautionary label that reads like this: “Caution: This product may contain ingredients which may cause skin irritation on certain individuals and a preliminary test according to accompanying directions should first be made. This product must not be used for dyeing the eyelashes or eyebrows; to do so may cause blindness.” One of the so called natural products that got a full caution in a safety review in both risk categories (Allergies/Irritants and Cancer) is Antica Herbavita Herbal Permanent Hair Colors. Hennalucent by Ardell got 50% cautions in both categories as well. Both of these were darker colors, however. However, even the lighter shades with some companies are filled with PPED: for example, Clairol Ultimate Blonde and Clairol Ultress Gel Colorant (Dark Blonde.) Clairol Balsam Color Conditioning Shampoo-In Haircolor (palest blonde), and all colors of Clairol’s Nice and Easy.Thankfully for those that value their color, there are some safer alternatives. Pure henna color like Light Mountain Henna, and Paul Penders “Color Me Naturally” are two. These are herbally based, totally safe, and work extremely effectively without ammonia, peroxide, lead, or sulfur. There is another class of product which definitely works and is more applicable for men because of their shorter hair. These products DO contain lead acetate in minute quantities, and are applied like a hair tonic. Theoretically according to the product literature there is no absorption from the skin or the hair, but there is a caution to wash the hands after application because it can cause skin irritation. Certainly the lead would show up on hair mineral analysis as a component of the hair, in this case an external “contaminant”, but the important question would be whether there is any associated increase in internal lead levels. This has been studied with blood lead levels, and the results showed there was no increase in blood lead as a result of use of these products. This type of “progressive” hair dye product (example Grecian Formula, Youthair, and a Life Extension Brand ) is also endorsed by the Life Extention Foundation, a group of researchers and consumer advocates that I trust and respect. These products work by acting like melanin in the keratinocytes, and wonderfully restore the person’s original hair color, whether brunette of blonde, gradually over time. There are no colors to chose, and the amount of darkening can be controlled by the frequency of application. Some other common sense precautions for those who insist on continuing to use commercial dyes are these suggestions:• Don't leave the dye on your head any longer than necessary.• Rinse your scalp thoroughly with water after use.• Wear gloves when applying hair dye.• Carefully follow the directions in the hair dye package.• Never mix different hair dye products because of potentially harmful reactions.Professional colorists can also lessen their client's exposure considerably by using a more time-consuming process which places color as close to the scalp as possible without actually touching it.In summary, the person who wishes to do something about safely restoring the color to their hair should obtain a natural medicine evaluation of nutritional and hormonal status as early into the graying process as possible. Supplements and natural hormones can definitely help. Until the FDA requires large scale studies of PPED containing products, their safety is definitely in question and they should not be used, especially by pregnant women. Substitute all natural products which do not contain PPED.
Caring Medical 708-848-7789; Oak Park, Illinois"

If you would like to respond to me but not through the blog my email is gbsmudski@nc.rr.com.

Hairs to you,
Gina
www.thewomenshop.com

Great Site

2005-08-15T15:17:00.000-07:00

Hello Hello!!

I found a website called www.hiphat.com that has some great products. I ordered a few of their products to "test" for my shop to see what I thought. Let me tell you, these are GREAT. I absolutely LOVE the soft cotton caps that allow your scalp to breath. These are made of a fabric called "cool max". I have ordered 3 items, hair on the scarf, hair for any hat, and hair for any ball cap. Choosing the style of hair was the hardest for me (straight, curly, or sort of curly) so I tried one of each. Let me tell you these are awesome. It is 90+ degrees outside right now and I have been trading hair styles all day. WHAT FUN THIS IS!! These things are so comfortable. I have worn a straw hat with one and a ball hat with the other. For someone with cancer or with AA, AU, or AT there is hair around the base of the head as well as around the side burns and bangs if you want them.

I'm going to begin carrying these in my shop, but wanted to share the site with you incase you wanted to order them on your own!! In the past if I wore my normal wig with a hat in the summer it was just too hot!!! Hiphat products are just so comfortable, it is amazing.

Tomorrow I will continue to search for soft stylish hats for those of us without hair. Soft and stylish are key words. We want to look great, very natural, and be very comfortable. So I am off to search for more, but wanted to share what I found incase you are looking for something more than a wig and more than a hat.

Hairs to you,

Gina
www.thewomenshop.com

Starting Each Day

2005-08-15T15:06:00.000-07:00

Yesterday was Sunday. I watched a movie called "Hitch". It was a cute movie, possibly a "chick flick" but it had a lot of substance to it. Wil Smith stated in the movie as his character Hitch, "Begin each day as if it were on purpose". I sure someone else has said that before. Yet, it seemed that was the first time I had ever heard it said. Suddenly it applied to me and my hair loss. Many days I slowly rise out of bed and go on autopilot. I go through the motions of doing what I know needs to be done. Some days I actually look in the mirror and wonder what happened to my hair as I see this person staring at me with sparce hair. Other days I laugh at myself with what little hair I have sticking out all sorts of ways and I call that my bozo the clown hair do!!

Yet, when I heard Hitch say "Begin each day as if it were on purpose", I started rethinking my daily routine. What if I were to rise out of bed with purpose, with meaning, with immediate direction? How different would my day be. I would already have my day planned. I would not cringe when I looked in the mirror.... ever..... because all of this somehow has a purpose. Beginning each day with a purpose may be routine with many, but like I said, it takes me awhile to gain consciousness. It takes me awhile to accept that my hair didn't grow back over night. It takes me awhile to make the best of me so I can make the best of my day.

I don't know if this will impact you or not. If it does... please comment. Let me know if somehow that one small statement..... begin each day as if it were on purpose..... makes a difference in your life.

I'm beginning now.... beginning each moment as if it were on purpose.

Hairs to you, Hairs to hope, Hairs to simply knowing we are here on purpose.

Gina
www.thewomenshop.com

Wigs and Hair Loss

2005-08-05T09:11:00.000-07:00

Making a choice to wear a wig is a big choice. I often found myself fighting the "wig thing" for many reasons. I was afraid I was not being myself or that I was fake. I was afraid it would blow off in the wind. I was afraid people would make fun of me. Yet as I look back I find that I was my biggest "enemy". My fears held me from moving forward.

Here are a few things that help me when I think about wearing wigs now.
1. I can wear them or not and still be me!
2. I can wear them and enjoy them!
3. I can change my hair color and style as often as I would like (or as often as my budget allows).
4. I can fix my hair the night before I need it and not have to worry about it in the morning or before the event.
5. I can see the back of my hair without a mirror.
6. I don't have to sleep in curlers.
7. I can wear lots of fun hats.
8 My hair can be anything I want it to be.. straight, curly, wavy, blonde, dark brown, red, short, long, medium length .. or anything in between.

I know it is not easy to take that first step in wearing a wig. For me it was as if by purchasing a wig I was giving up on my hair ever coming back. Today I see it as simply accepting the facts before me and chosing to not allow those facts to hold me back. I also know that if I wear the "right" wigs that don't put pressure on my scalp and are hand tied I will not prevent my hair growth.

At one point I shaved my head to order a vacuum piece. That was a BIG step. I just knew deep down inside that if I shave my head what little hair I had would never come back. Yet I was determined to have a natural looking head of hair. I wore the vacuum piece and many other styles of wigs and my hair that was going to come back ..... came back! What wasn't going to come back didn't. I have actually shaved my head at least 3 times as of the writing of this blog.

For me, looking natural and being comfortable are KEY in purchasing a wig. There are certain types I personally don't care for because they can trigger headaches due to the pressure points they touch. However, all wigs are a blessing and we are so fortunate to have so many choices. Of course, I believe the ones I carry are the best, but I am a little prejudiced. I didn't open my Shoppe and then find the wigs. I found the wigs, was working for a major telecommunications company and was down sized. After the downsizing the flame in my heart to help others who are going through what I have gone through (and what I live with) became a full fire.

So here I am... hair and all (or Gone Today.. Hair tomorrow) ... simply wanting to help in some small way. Hoping you will share your story either on my blog or send me an email directly if you are not ready to go public... and that is OK!!

Hair to help!

Gina ~~~ www.thewomenshop.com~~~~ gbsmudski@nc.rr.com

Do we grieve our hair loss?

2005-07-31T12:07:00.000-07:00

I know there are many reasons for hair loss and alopecia is just one of them. I see clients weekly who are losing their hair due to alopecia (AA, AT, and AU), chemo, radiation, cancer, other dermatological causes, other auto immune deficiencies, and other reasons beyond medical labeling. Some will say they have been told stress caused it, some will say a traumatic experience caused it, and others simply don't know but begin looking into genetics. I still don't know what really caused mine. What I do know is that it happened. I know that after I went through many many tests and no results came from those tests I was told I had alopecia. When it was diagnosed in me (33 years ago) they still related my condition to male pattern baldness which today they classify as different things. The Doctors felt that the many drugs I had to take to keep me alive as a very sick child didn't show all their effects in my body until my teens which some medications do. The Doctors also felt that since my Mother and Grandmother had "male patterned baldness" that it was something I was genetically predisposed to getting. My condition was just stimulated earlier than theirs. However, the Doctors did not have any "solutions". I felt very alone, filled with shame, and frightened.

My "reason" for my hair loss may be different from yours, but the life changing result is the same. The result is a change of life for those of us facing the challenge of hair loss. It is also a change of life that affects those that love us whether it be a spouse, a significant other, a family, our friends, or all of the above. 33 years ago there were not a lot of solutions. I tried anything and everything people suggested. Wig shops were out in public so MANY could see me trying on different hair. I was crushed and felt humiliated each time I would go to try on a new wig.

What I have found through my experience is that the stages of grieving do not just apply when we lose someone we love. They also apply every time we experience a loss, from the "simplest" things (like missing a phone call) to the "complex" things (like missing our loved ones). When I started seeing my hair loss as a huge loss in my life, I started seeing myself as going through the grieving process with that loss.

Probably the most well-known of author about grief might be Elizabeth Kubler-Ross. Her book, "On Death and Dying" identified five stages of grief in terminal patients.
The stages Kubler-Ross identified are:
Denial (this isn't happening to me!)
Anger (why is this happening to me?)
Bargaining (I promise I'll be a better person if...)
Depression (I don't care anymore)
Acceptance (I'm ready for whatever comes).

I know have gone through each of the stages she describes concerning my hair loss. Somehow being able to put a name on it made sense. I also learned that just because I have gone through all the stages doesn't mean I won't go through them again and again. We can go through the stages rapidly especially for "simple" things (like not being able to attend a game due to a rain out). However, I have found the more "complex" our loss, the longer the process takes. Some grief experts say that when we face a death, it can take two years to go through the entire grieving process.

Sometimes I feel a bit like an onion! I feel like layers of myself have been peeled away only to find that there are more layers. An example of this is I have a little dachshund. He is a sweetie, is 11 years old, is "red" in color, and is my "baby". I know that probably sounds a little absurd, but I could not have children, so he really is like my child. His name is Worf. He has been recently diagnosed with cushings disease and the prognosis is not great for him. Everything I read states that once dogs are diagnosed with this they usually only live about 2 more years. To make things more complicated he is also diabetic and on 9 units of insulin twice a day. Unfortunately the combination of diabetes and cushings is not good because he needs insulin due to the diabetes yet the cushings causes the body to produce such high amounts or cortisol in his body which makes him insulin resistant causing his insulin need to be increased more often than other diabetics.

When Worf was diagnosed with cushings syndrome three weeks ago, my heart broke. I went through the denial (no this can't be), the anger (why is this happening to such a sweet little fella, I don't want to lose him), the bargaining (maybe if I do something different this will go away), the depression (rather than the I don't care emotion Kubler Ross describes I go through a deep sadness and missing him already), and then I'll work my way through to acceptance (he is here with me, I can't change things, so I'll make the best of this as long as I can and keep him as comfortable as possible for as long as I can).

Although my emotions have worked through these stages (and the stages are not something you can force, they simply will happen), I find myself going back through the depression and acceptance. Apparently this is a "normal" process described by many authors who deal with grief.

I used the example with Worf as a stepping stone to say that I have also gone through all these stages with my hair loss. Hair loss is a big loss. All of my life I have heard "hair makes a person", " hair is our crowning glory", "hair is the person", etc. Seeing my hair fall out was so traumatic and challenged the very core of my being. Learning about the stages of grieving helped me to identify what I was going through. I know I have gone through all of these stages at least once concerning my hair loss. However, as each new day presents itself I find that I may still have something to deal with in a previous stage. Yet the stages don't last as long concerning my hair loss. Each time I identify where I am, I then am able to deal with the acceptance better. I seem to be freer to enjoy my acceptance.

Don't get me wrong, I don't think the stages are easy. I don't think they go quickly when we experience a new loss. However, I do think they are helpful to be aware of when we have a loss so we may identify where we are, know where we are is "normal", and once we get to the acceptance stage no matter how brief... to celebrate the acceptance.

Sometimes I celebrate my acceptance by giving thanks, other times by having a wonderful cup of coffee, sometimes by sharing with a friend or writing in my journal, other times I'll celebrate with a new wig or a new head band or something fun that can fit into my budget.

I would love to hear from you about where you are and if you agree about the grieving process and hair loss.

Hairs to you,
Gina

www.thewomenshop.com

More than 90 million people in the US have thinning hair

2005-07-25T20:05:00.000-07:00

I was reading an old issue (January 2005 issue to be exact) of the Magazine called "DaySpa". The title of the article was "Gaining On Hair Loss" by J Elaine Spear. This article stated that:"More than 90 million people in the US have thinning hair." It went further to state that "more than 30 million of these follicle-challenged folks are women, according to the Women's Institute for Fine and Thinning Hair."

The article pointed out "Even though a man may feel devastated about hair loss, being bald is socially all right for men," However, "the same isn't true for a woman. A bald, sexy Pamela Anderson? I don't think so! So much emphasis and value are placed on a woman's crowning glory that it's hard to even compare the impact hair loss has on them with its effect on men."

The article sited that "A 1999 study published in the Journal of women's Health and Gender Based Medicine confirms that female hair loss is associated with self-consciousness, jealousy and feeling of powerlessness about the conditions. These feelings are so commonplace that many psychologists now refer to them as ravenously envy. A study reported by the Academy of Dermatology also suggests that women with hair loss have a higher incidence of letting hair loss interfere with their daily lives."

A couple of years ago I researched the number of women in the state of NC with tumors of any kind who faced the challenge of hair loss. That number at that time was 40,000 women in that one year. I found this information with the Tumor Board at Duke University Medical Center.

I share this information because I know how devastating hair loss can be. It doesn't really matter if the hair loss is "temporary" caused by catalysts like chemotherapy, radiation, stress or drug interactions; or if it is "permanent" from scenarios like alopecia, brain surgery leaving the follicles dead in that one area, or other autoimmune deficiencies, The end result leaves us having to go through the grieving process, and realizing that life is really more than about hair.

I know I still go though denial, anger, and acceptance in cycles as part of the grieving process. However with wonderful hair solutions out there, we can choose not to allow our hair or lack of it be a distraction. Once we begin to accept that we are OK with or without hair we are heading in the healing direction. That choice is not easy, but it can be done. We can lead full lives with the help of natural looking, hand made, hand sewn wigs, and hats, and turbans, scarves, and other accessories. We can accentuate the positive... our eyes, our neckline, our cheek bones, our lips, and look in the mirror and tell ourselves that we are loved JUST the way we are.

I so admire the many women out there that I have the opportunity to meet who are so comfortable with who they are they don't need wigs or prosthesis. But, I can't say I am there yet. I am more comfortable at this point in my life letting people know I have alopecia areata and sharing with them how I might be able to help them in some small way concerning their own hair loss.

My Dad used to always tell me that "You can't tell a book by it's cover". I used to get so upset because I felt so left out, so full of shame, and unable to get over my own loss. Yet today his words still ring true to me. I have met so many wonderful people. Yet if I would have stopped at the "cover", I would have been the one missing out on someone totally awesome who touched my life deeply.

No, I don't walk up to people on the street and say I can help you, but I do let people know that I have lost my hair, with the hope that I can help them through the grieving process as well.

I think the good news is that we are not alone. We don't have to feel like the lone ranger. There are many others out there exactly like us (90M to be exact, 30M women).

Help is out there for the asking, and as Martha Stewart says "It is a good thing"!

Hairs to you!
Gina

Finding Support

2005-07-24T14:51:00.000-07:00

Some sites that I have found to offer some great support and/or chat areas are http://groups.msn.com/WigSupport. This site has a support group you can join as well as a lot of information on purchasing the right wig. Another great support group that I have joined is alopeciaareatasupportgroup@yahoogroups.com. There have been some great people there as well who are experiencing hair loss due to alopecia.

I'm searching for other sites as well and will let you know what I find.

Hairs to you,

Gina

Do you have alopecia and feel alone as you face the challenge of hair loss?

2005-07-14T13:34:00.000-07:00

Did you know that more that 30 million women in the US in any one year live with the challenge of hair loss? This was according to statistics I found back at the end of 2002. I know I felt very alone when I found that I was losing my hair. Today I meet many people who must face the challenge of hair loss. Some do so gracefully, some do so in denial, some do so with humor, some do so with dignity, some do so with anger, some do so in peace, and some do it with all I've mentioned depending on thngs going on in their life.

Out of my personal experiences, research, trials, tribulations, and finally a peaceful acceptance I knew I wanted to help others who must face living life with the challenges of hair loss. I knew I wanted to help others if only in some small way to avoid some of the experiences I had. So.. here I am. I offer some wonderful hair solutions, wigs, prosthesis, and accessories so it won't take you 30+ years to at peace exactly where you are.

Being a source of help and support to my clients are the reason I opened my shoppe. However, I want to be sure I stay on top of what people with hairloss are looking for, what they need, and most importantly what things would make their visit complete (such as a free newsletter, free tips, etc).

If anyone has suggestions of what they are looking for, what they want but can't find anywhere, stories to share, encouraging words, bits of real life laughter, or words of inspiration I would love for you to share. The reason for your hair loss may be alopecia (areata, totalis, or universalis), drug interactions, chemo, radiation, cancer, brain tumor, dermatological conditions, or whatever you have found that caused your hair loss. I would be so grateful if you would share with me your story, your interests, your hobbies, and anything else you would like to share. And if you are one of the brave ones who is very comfortable being bald and beautiful please share your what got you to that place. I admire so many people who are facing this challenge because it is exactly that... a challenge. We are different, but once we decide to be who we are, we find we are just fine the way we are. As I have been told it isn't life's challenges that are hard... they are hard only when we perceive the challenges to be hard.

Go ahead... please share with me!!

Hairs to You,

Gina

Hair loss and dating

2005-07-11T12:15:00.000-07:00

Dating was always a fear in my heart. When my hair first started coming out I knew I was very different from other students in my high school. Although that was years ago, I can still remember the feelings I had, the "questioning, silent" looks of others, the "longing to help" looks from my family and close friends, and my fears that I would never really be a woman if I had no hair.

By the time I graduated from high school I had been through every treatment possible to bring back my hair. At that point, I was determined to go off to college and live without wearing wigs. For some reason I had a fear that if people found out that I wore wigs they would think less of me. Little did I realize that women did a lot of things to enhance their beauty which were not "their things". I remember finding out that others wore false eyelashes, false boobs, false nails, fake tans, false butts, and more; yet my hair felt more profound to me. I felt I was being more fake if I wore a wig than others who chose to simply "enhance their beauty" by wearing the false things they wore.

My college roommate to this day teases me because she says "You dated more guys in college than any one I know." I was very committed to keeping my virginity yet playing the field. I wanted to meet people and see different sides to life. However, deep within I was very afraid people were judging me because of my hair ... or lack of it. I didn't want my dates to touch my head because if one hair moved from any point ... I was afraid it looked even thinner. I wore scarves and hats and turbans and they would playfully get pulled off of my head which would totally embarrase me. However, I'd "play" along as if nothing had happened.

Once I started wearing wigs, I then became afraid they would blow off in the wind (and they did) or afraid someone would pull them off my head (which also happened usually quite by accident). I didn't want my dates to touch my head or my wig for fear they would think less of me once they knew I wore a wig. Of course at that time I truly felt that I was very alone in my struggles. I had no idea that 30 million women a year live with the challenge of hair loss (either from alopecia, dermatologcial causes, drug interactions, cancer, etc) . My doctors did not even know of any support groups that I could be a part of. Unfortunately this confirmed my feelings that I was alone.

When I met my husband I had been wearing wigs for a while. He and I had been friends for several months when I decided I really needed to tell him about my hair. We were attending a church at that time and were both part of a singles group in the church. The singles group was planning a beach trip. We both planned to go. Dread filled me because I knew I needed to tell him and other girls I was rooming with before we got to the beach. It took me weeks to build up the courage to tell each of them before we went down to the coast.

Fear consumed me because I knew how special my then friend boy was to me and that when I shared my hair condition with him, he could very well choose not to see me any longer. The same fear came when I thought about the women as well. I had experienced the rejection in my past because of my hair so I felt almost paralyzed. The thought of not going on the trip was entertained. Yet, I had always pushed myself to do the things that I enjoyed.

When I did share my hair condition with all the singles going on the trip, I found an entire group of people who did not think any differently of me. They were supportive and encouraging. My then friend boy who is now my husband had a lot of compassion. What I learned from that moment in my life was that I would start my relationships out with the simple truth. I didn't plan on wearing a sign or shouting it from roof tops, but as conversations presented themselves I shared about alopecia.

Another thing occurred as well. Quite innocently and most unplanned I became a resource for others facing the challenge of hair loss. Today I work with people facing this same challenge and am available to speak to support groups, Dr's offices, cancer support, alopecia support, and I volunteer my time when I am able for children facing hair loss. As things have worked out, my Mother now lives with my husband and I. My Mother is a 3 year breast cancer survivor. Little did I know what an impact my being a resource would also have in that community.

Let's face it... losing your hair for any reason is traumatic. It is life changing and is not easy. However, when people realize they are not alone and that there are some beautiful solutions out there whether they choose hats, scarves, wigs, hand made prosthesis, or going au naturale it is all OK.

Accepting myself was one of the hardest challenges for me to overcome. I had to look myself in the mirror and know in my heart that it was OK if I didn't have much hair (at times no hair). The person I chose to become was inside. Sure people might have to look a little harder for what was on the inside ... but it's there. A friend of mine says I have the perfect romance story to tell, not just about my husband and I; but one that they called "When Harry (hairy) met Gina" and they labeled the story a romance that lasts a life time. "When Harry met Gina" would become a love story about loving myself and my hair whether I am wearing a wig or letting "it all hang out".

Hairs to You and finding your own true love story of "When Harry met ________" (fill in your name).

Gina ~~~~~ www.alopecia.blogspot.com

WHY is my hair coming out?

2005-07-05T07:53:00.000-07:00

In the shower after washing my hair I noticed what seemed to be a huge amount of hair on the drain. My thoughts were "this must be normal", "this HAS to be normal"! Reflecting back over the previous months I recalled all the hair on my pillow each morning and the comments my older brother (11 years older than I) had made. He had mentioned to my parents that something was really wrong. Since he no longer lived at home, he didn't see me everyday making the impact much greater on him. Overhearing his conversation, I began to weep. Thoughts were running through my head. "This can NOT be happening to me." My hair was dark, long, thick yet fine, with soft natural curls. I could sit on my hair.

My mind raced back to being a small child when I had been very sick. Starting at the age of 4 I was in an out of the hospital due to severe allergies and upper respiratory complications. There were months I would spend in an oxygen tent (what I called my bubble) in Duke Hospital. By the age of 8, I no longer had to continually live in a "bubble". By the age of 12, all the Doctors said I out grew everything and should have a normal life.

Now I stared in the mirror at myself wondering what was happening to my hair. I spent a lot of time in denial (no not the river in Egypt). Surely this hair loss had to be normal, but when I no longer had hair on my head.....there was nothing to deny.

I was angry, sad, ashamed, and was not sure where to turn. My parents took me to many doctors to make sure there was not a blood disease, thyroid problem, systemic issue, dermatological condition, or any other disease. I remember going through tests too numerous to count. After the tests had been exhausted, family remedies had been tried, and cosmotologists were consulted the Doctors concluded that I had "male pattern baldness"/"alopecia". Their diagnosis as to the reason this happened was possibly the medications I had been on as a child caused this "thing" called "alopecia". The Doctors all said that the medications stimulated this condition that I was genetically predisposed to at an early age. They all felt the condition was permanent. Walking out of one of the countless Dr offices, I began to shake my head. I knew I could beat this. I knew this couldn't be happening to me. I knew my hair was going to come back. I was not even sure what "alopecia" was so surely it could not be a permanent condition!

Three years later my hair came back. I knew the Doctors had been wrong. I had my crown and glory back. Unfortunately, my head full of hair was short lived. Most but not all of it came ou again. I tried EVERY trick in the book. My desparation came back. If something said it would grow hair I did it, ate it, drank it, or swallowed it. Dermatologists tried topical steroids that they "tatooed" into my head. Some people said if I put vodka on my head my hair would grow. Others said if I drank vodka it would grow. I even asked to be part of one of the original "rograin" studies at Duke University in Durham, NC but the clinic turned down my application stating my hair loss was too diffuse. The doctors doing the rograin study felt that the amount of topical rograin they would have to use could potentially harm my liver.

I was completely shattered. I was humiliated. I was afraid. I felt hopeless and alone. During this time I was so afraid to be around people because I was the only young female I knew (and the ONLY one that anyone I knew, knew) who had "alopecia areata". I was alone and it appeared that no one could help me find a solution. Many dollars were spent on wigs, hats, scarves, creams, pills, magic solutions, doctors, cosmotologists, and more. Nothing worked.

Getting out in public was very hard for me. However, if I "pretended" I wasn' t any different then I could make it though my days, parties, college, volunteer efforts, holidays, jobs, and life. People would show their compassion to me in the best way they knew how. Yet statements or questions like "I am so sorry you have cancer" or "did you know you are losing you hair?", or "my mother had thin hair and she tried such and such and her hair returned." While their compassion was intended for all the right reasons I would gratefully and humbly go home and cry.

When people started looking at my head more than my eyes when speaking to me, I began my search for what I will call a good "wig". The "wigs" I found were not inexpensive and were very uncomfortable, contibuted to my migraines, had a lot of stitching in them that itched me like crazy, and they could be easily blown off my head in a strong wind or unintentionally pulled off by another person. I can't begin to tell you how much time and money I spent trying either to get my hair back or find wigs I liked. I tried "Racquel Welch wigs", "Dolly Parton wigs", and more. However I discovered that the wigs I was trying were more for people with hair who wanted a change rather for people without hair with sensitive skin. I wore the uncomfortable wigs without security because I could not find other options.

I studied alopecia, the best I could not being a doctor or pharmacologist. My personal findings were that alopecia was a fancy word for hair loss. When doctors's tests eliminated all other possible causes they give the hair loss a name called "alopecia". I had no idea that I had alopecia areata which is basically male patterned baldness. I learned later in life that others have alopecia totalis (no hair on their head) or alopecia universalis (no hair on their entire body). I searched and researched for 25 years and was FINALLY able to find what I call "cranial prosthesis" that were comfortable, hand sewn, hand tied, beautiful, natural looking hair for my head.

I tried the luxurious vacuum type prosthesis. However, I found that for me (since I still have some hair) the vacuum type didn't work well for me. Making the purchase for a vacuum prosthesis was a huge decision for my husband and me. Don't get me wrong, my husband was very supportive. He chose to marry me knowing I had very little hair. He could see the person within. Yet seeing beyond my hairloss was becoming more and more difficult for me. I chose to shave my head (not that I had to shave a lot) so the professional could make a cast of my head. Once I shaved my head, I had to live that way for many months, since my hair grew sparcely and slowly. The vacuum piece took over 7 months to arrive. When it arrived it seemed to weigh a ton. The cap is solid latex or silicone. The price (about 7 years ago) was around $6k. I had to shave my head again to wear this prosthesis but it was never comfortable for me because it was heavy, thick, and didn't breath at all. This type of prosthesis stayed on my head very well. The hair was gorgeous. It looked very natural even pulled back off of my face. I just was not thrilled with having to shave my head constantly for the vacuum to work. I also was not happy with the fact that it did not breathe which made me very hot. The mere weight of the prothesis contributed to my migraines (which started when I was 12). This prosthesis was a beauty (still is) and from time to time I wear it (mostly in the winter). I have met several people that use these and love them because they lead very active lives. They like to water ski, snow ski, swim, etc and the vacuum piece will NOT come off of their head. This type provides solid security for active people.

I researched hair grafts. These were quite costly and required surgery. I was afraid to go down that path because my immune system has never been the best. I was afraid of complications that could arise out of this procedure for me. I know others who have had it done and absolutely love it. The pattern I observed for those who loved the hair grafts process were people who had smaller areas of hair loss. My area of hair loss is not localized to just one area, it is wide spread on my head.

Still searching for what was best for me, I finally found some light weight, hand tied, human hair, beautiful prosthesis that have turned out perfect for me and my lifestyle. Of course, NOTHING will EVER feel like or replace naturally growing hair. All cranial prosthesis will have to be replaced regardless of how well you take care of them. I have found that having two prosthesis extends the life of each one and gives me a back up when I am washing the other one. I have chosen to use shampoos, conditioners, and spritzes that extend the life of the prosthesis. However, my prosthesis still have to be replaced because they will wear out. None of the cranial prosthesis, wigs, or extensions last forever.

Once I found the hair/cranial prosthesis I liked I found myself with another problem. Now that I have this hair, what do I do with it. When I placed them on my head, I looked like cousin "IT" from the Adamms Family. I went in search for cosmotologists who could cut and style my hair/wig/prosthesis. This was a large challege for me. Many cosmotologists, and rightly so, are afraid to work on expensive prosthesis/hair because they won't grow back. One wrong cut and the hair is ruined...forever. I felt like a kid with a prize balloon in my hand that popped. Here I had an awesome thing and couldn't find anyone to work on it. Now what was I to do.

Today, I own and operate a Shoppe so I can help others who are facing the challenge of hair loss for any reason. KNOW you are not alone. KNOW there are wonderful hair loss solutions. KNOW this is one area of your life that you can do something wonderful about. KNOW there is someone who sincerely cares about what you are dealing with because I live with it just like you.

If you or someone you know is experiencing hair loss for any reason, I would love to hear your story. Together,we an be an inspiration to others as well.

Hairs to You,

Gina www.thewomenshop.com www.alopeciahope.blogspot.com

Through the Looking Glass

2005-06-28T12:13:00.000-07:00

I stepped out of my car. In my right hand I held my nice eel skin brief case. My clothing and hair were impecable (my Mom & Dad always told me you had to look your best especially for business meetings). The business I was visiting was at least a 3 block walk from the parking lot. Walking towards the tall black buildings with the type of windows you can see out of but can't see in, the wind began to pick up and the rain began to pour harder. The umbrella I managed to open was hard to tame until the wind inverted the darn thing. Umbrella totally destroyed at this point, I stuffed it into the first trash can I came to. I tried to run gracefully into the building in my four inch heels (yes they were eel skin too) as both the wind and the rain gained strength. The entry way into the building was lined on both sides with beautiful trees. As I tried to pick up speed to protect myself from getting drenched, the wind also gained momentum. The trees were bending, and swaying. I was moving rapidly .... just not rapidly enough. To my horror ... "it" happened. My greatest fear happened. One of the trees bent over, extended it's branches and GRABBED my wig from my head ... LITERALLY throwing my hair back into the parking lot. I was so embarrassed .. more like terrified. As the wig came off of my head I started running in the direction it was being blown in an attempt to grab it and place it back on my head. At that moment I was praying that no one was looking through their window but more importantly I wanted to get my hair back into my hands and on to my head. Each time I would bend over to grab my hair, the wind would grab it first and toss it further. This "rain dance" went on for what seemed eternity. After SEVERAL moments of chasing my hair ALL over the parking lot I was able to grab my wig and head back to my car. Throwing my hair and my body into my car, I held back tears so I could drive to a place of safety. I placed my sopping wet wig on my head, found a phone and officially postponed my business appointment. Several weeks later and many deep breathing exercises I went back to my scene of my emotional train wreck to follow up with my client realizing from their expressions that they had witnessed my "chase scene". My clients were very kind and their sympathy showed through their eyes, light giggles, and the sale I made.

That was 20 years ago when I cried for days from embarrassement, humiliation, and shame from losing my hair to the wind. Today I enjoy retelling the story and sharing the laugher. I put myself in the position of those looking through their windows on that dreary day to see such a sight that surely brought a smile to their face as they watched.

In 1972 I lost all of my hair at the age of 16. Three years later, most of it came back. A year after that, most of it came out again never to return. My parents tried all they knew to try to search for the reason it occurred and find a solution for their "baby". They took me to endrocrinologists, peditricians, dermatologists, spirtitual healers, cosmotologists, and used "home remedies" to try to help me. For many years I was filled with shame that overwhelmed me due to my hair loss. I felt I did something very wrong. I knew people would stare at my head when they spoke to me and not at my eyes. My heart was broken and I felt as if I would never be a complete woman. I had to fight with myself just to go out with people due to my shame, fear, and guilt. When I went off to college I tried many things to get my hair to return. I refused at that point to wear wigs because they were so uncomfortable and because I was afraid people would pull it off of my head.

I also felt that "wigs" were fake and I was not being my real self. I attended college and graduated always wearing hats or scarves on my head. Those would get pulled off and cause me to cringe within, but I tried to make light of it.

Today it is 33 years later since I first lost my hair. I know that I am not alone. 30 million women in the USA EACH year live with the challenge of hair loss. The reasons for the hair loss are numerous. The reasons are such things as alopecia areata, alopecia totalis, alopecia universalis, drug interactions. scleroderma, trichotillomania, folicular damage, chemical treatments, traction alopecia, cancer, chemotherapy, radiation, along with other many other diseases and dermotological conditions.

Alopecia hope has been started to give others hope. I am very interested in hearing your stories if you would not mind sharing. I am now at a place where I can laugh at things that happened. When I look through my looking glass I know that I have very little hair but I see myself as complete. I know there are many women out there who have lived with hair loss. I am very interested in hearing your stories .. funny... sad... asking for help and hope... whatever the case may be. I believe we can gain strength from each other.

I hope you will share your story with me and others. Share funny things, sad things, or challenges you are having if you are one of the many facing the challenge of hair loss. Maybe we can encourage each other.

Hairs to you!!!