Hi Girls!

I have been away for so long, but life has been really hectic so I needed to take time to focus on my family for a while. We also have a beautiful new family member with us...Vicki. She came to live out here in NM with us two weeks ago and I am so blessed to have her in our lives. Here is her profile if you'd like to drop by and say hi to her:

http://community.womenshairlossproject.com/VickiG/

We are moving into our new home this weekend and we will be super busy with all the things that need to be done, but as soon as we settle down a bit and I can concentrate and give my full undivided attention to you all, I'll be back on.

I miss you guys all so much! If I don't respond to everyone that has left me messages, just know that I'm not blowing any of you off or trying to ignore you...I'm just really tied up over these last few months.

I hope all of you are doing well and I can't wait to be back to catch up and see all that is going on in your lives.

Have a great day!

Hi everyone,

I had a few requests from some of the ladies asking me to repost a blog I wrote back on May 13, 2009. Here it is girls...I'm sorry it took so long for me to repost it.

Hello my beautiful sistas,

I have missed everyone so much! I have been so sick with pneumonia. I had been struggling with crackling lungs since sometime in early October, but things continued to get progressively worse as the months rolled on. As each day passed, my breathing got more difficult, my energy levels fell further and depression was in full force. I was not in a good way! Most of my time has been spent in bed unless I have to be up to care for Simmi. Things took a turn for the worse on Dec. 24th and 25th. Dare I say that I ruined Christmas for anyone? Yup. I tried to get up to make Christmas dinner and passed out. I could hardly breathe and had to stay in bed. On Dec. 26th we attempted to go to urgent care, but it was so packed that there was no way I could sit up and even wait the three hours to be seen. We went home and came back in the next day. The doctor didn't do a chest film on me, even though I knew that I probably had pneumonia. The doctor gave me some steriods and sent me on my way. I felt a little better on the prednesone, Advair and Abuterol, but I still was feeling so horrible and my cough was worse than ever. That doctor wouldn't even give me a pneumonia shot! I need a shot every five years or the chances are good that I would get it again. The five years are up this Feb. but he wouldn't acknowledge that I needed one. He was willing to give me a flu shot though. LOL I didn't need a flu shot...I never get the flu! I needed a pneumonia shot! Geez!

After not getting better, I made a few different appointments. Our health insurance kicked in and I was ready to get checked for everything under the sun. I set up my endocrinology appointment, primary care appointments, dental and I was feeling hopeful that I would not only get my pneumonia shot, but get on some antibiotics as well. About a week and a half ago I got in to see my primary care doctor. He listened to my lungs and confirmed that I did indeed have pneumonia. He ordered the script for my antibiotic, and also gave me a pneumonia shot. Yay! Even though I had an appointment set up to see an endo, I asked if he would run some blood work on me to see where my thyroid levels were. The last time my levels were checked I had a low thyroid, but not low enough to treat. So...he ordered the labs and my levels were low. But according to the lab results, it "looks" like they are still within range. After reading up on low thyroid and all the problems that exist, I knew that if this doctor wasn't going to help me, that I would need to actually do something that I am normally opposed to...self treating my thyroid. I did as much research as I could and ordered some stuff. I could feel the affects of what I ordered working right away. It wasn't like all my problems disappeared, but for the first time in a long time, my hands and feet were no longer cold, I felt warm inside, I had some energy and I felt optimistic that I was on the right track. In the back of my mind, I still have these panged feelings of "don't self dose, don't self treat" because hormones are not something I believe I should be messing with...but it was working! Now, usually when I have pneumonia it takes months and months to feel normal after finishing my antibiotics. Right now I still have four days left and I am up and about, feel good, and I can actually think again! What a concept huh?

My daughter Hannah is currently in school and one of the classes she takes is taught by an endocrinologist. She knew what my thyroid levels were and decided to ask some questions after class. The endocrinologist asked what my levels were, and when Hannah told her, she said the doctor was shocked that the doctor I was seeing wasn't willing to put me on proper thyroid medication. She asked if Hannah could bring in my labs, and she told her that she would be willing to write a script out for me to treat my hypothyroid. Yay! I don't have to go this alone, and now I'll have an endocrinologist to monitor me. I cancelled my other appointments (I had two) for different endocrinologists and now I'll be going to the one that is willing to help me. If I feel good right now on what I'm taking, I can't imagine how good I'll feel on a stronger proper dose of thyroid.

That's an update on my health.

I hope you all had a great holiday season and a very Happy New Year!

My AA stopped and all my patches filled in which means that my hair is growing in again. Its amazing how after not having the swamp cooler on for a few months, my hair is recovering again. I was going to continue shaving my head anyway, but my scalp is hurting really bad. Its so sensitive from the hair all coming in that taking a blade to it hurts even more. I used to use an electric razor, but I had to get rid of that when we moved to NM, so I've been just using my buzzer and then bic'n it. About a week ago, I shaved it and I felt like my head was on fire. I don't know if it was the razor I was using or the shaving cream (or both) but it was bad enough for me to lay off of shaving my head. I feel stuck now. LOL I still don't have enough hair to pull off growing it, but I'll just have to stick it out for a while till my scalp calms down. I may have taken off a layer of skin or something the last time I shaved it (not sure though) because Hannah said my head was bleeding in the back.

I hope the pain goes away soon so I can shave it again. If it doesn't, I may need to let it grow and get a wig or something. I love being bald, but I don't want to scar up my head shaving it, AND I didn't want to have to wear a wig everyday either. I used to get some tenderness and stinging when I used to shave my head, but this is unbearable. My scalp is extra itchy right now with the hair growing in and I have a lot more translucent hairs. That's probably why it looks like I don't have enough hair to pull off growing it. Its like having invisible hair...what good is invisible hair?

Hi Girls,

I have been missing you all so much! I haven't been feeling good at all. I'm having some lung problems right now and there is a lot of wheezing and crackling going on as well as feeling hot and then cold even though I don't have a fever. My hope is that all this is just related to my pneumonia shot starting to wear off. I need to get one every five years or I end up in the ICU. Dom just got a promotion a few weeks ago which included full benefits and for the first time in five years we'll have health insurance as well as vision and dental. It couldn't have come at a better time!  The insurance went into affect today so I can now look for an allergist that specializes in lung conditions as well as a Rheumotologist. I do need to find out whether my lungs are just bothered by the affects of the vaccine wearing off or if Lupus is affecting my lungs right now. Lets hope its just the vaccine. I've been fortunate so far not to have Lupus affect any major organ and so far it just affects my central nervous system (which is under control at the moment).

Simmi had her blood drawn to find out where her levels are for food allergies, and it turns out that it is worse now than even before. We found out that she is also allergic to all tree nuts as well. The most heartbreaking news came when the doctor dropped a bombshell on us...Simmi is HIGHLY allergic to dogs. I can't tell you how devestating that is to us right now. We have only had Sugar for a few weeks and Simmi absolutely adores her. She doesn't sneeze too much around her but she does break out a little. The doctor said that if her eczema starts getting worse or she begins to have problems with coughing or breathing that we will need to consider getting rid of her. We don't want to do that! She is an excellent dog. I really couldn't ask for a better animal than her...she has such a beautiful nature and she is so gentle with Simmi.

Have a very safe and beautiful Thanksgiving! We all have so much to be thankful for. I know I do!

Love you all!

Hi girls,

Please keep my daughter Gina in your thoughts. She has been very affected by the shootings at Fort Hood. She was supposed to come home to our house yesterday when she found out that the man that was going to be driving her was killed. His name was Aaron. Two more of her friends were killed as well.

Keep his family in your thoughts as well. This is so heartbreaking. I can't get in touch with her right now, and we are trying to get her back here by bus, train or plane. Here is a link to an article written about Aaron:

http://www.deseretnews.com/article/705342892/Family-friends-remember-Utahn-killed-in-Fort-Hood-shooting.html

For those of you who know me, I have been very reserved about getting Simmi a dog. I went over it in my mind and I was very sure that while it would be *nice* to have a dog, I had a hard time resolving to actually get one...that is, until Simmi's occupational therapist said it would be a good idea for her to have one. We began looking into the process of getting Simmi a service/assistance dog, but we found out yesterday that their policy is to wait till the child is at least 5 years old before they will accept applications. I was kind of discouraged about that because I was getting used to the idea of possibly having a service dog around. Well, as luck would have it, the every next email after we were rejected from the service animal place, was a woman that was placing her dog on freecycle. My heart melted after I read all about her and then saw the picture...I was hooked. I'm a sucker! LOL We went to see the dog today and Simmi just adored her. Her name is Sugar (for now) and she is really a great dog so far. She is scardy cat for sure and wants to be loved all day long. The owner gave us a three day window to see how do with her at our house and she said that if anything happens that we can call her and that she would take her back. I'm glad we have the three day window so I can see how Sugar does around Simmi. I think they will be fast friends!

Anyway, I thought I would share the newest member of our family with you all.

Hi Girls!

Ok, it has been a LONG time since I have written anything substantial on my website and I am looking for some fresh ideas and angles! I have some serious writer's block right now and I'm totally stumped. My website (for anyone that has not seen it) has been DRY for a while. I write about whatever floats my boat, but lately...geez! I feel like my brain is crusty.

So...give me some topics...it can be about hair, hair loss, life, love, sex, relationships, politics, religion, family. I need me some good shit to write about! My one year anniversary of having the Muse is almost here.

Here is my website if you'd like to check it out:

www.alopecianmuse.com

Hi Girls,

I was wondering if anyone would be opposed to canceling the chat tonight? Dom's schedule changed and he won't be home till 6:00 tonight. Of course...you can always enter the Rubber Room and have fun without me, but it would be hard for me to tell him "sorry Dom, I know you have been at work since 3:30 this morning but I got to talk to my girls!" AHAHAH! I don't know what kinda shape he'll be in when he gets home and he may just want to go to sleep.

I should have planned it more in advance too! Let me know what you guys think. I hope you would still go into the chat...but if you all would rather cancel that works too.

When I came across this picture I just had to post it! Isn't this little one just darling? Not a care in the world and never thinking about her bald little head! I envy this sweet little creature!

With Fall quickly approaching, I would love to hear what you all will be wearing to keep your noggins warm! Personally...I want that hat! But I know it will NEVER look as good on me as this sleeping little cherub.

Event Name:

Another Romp in the Rubber Room! (Chat Room) Event Description OK girls...you asked for another Romp in the Rubber Room so here's your chance to get in on the action! heehee

Anyone wanna chat? I affectionately refer to the chat room as "the Rubber Room" because you never know how crazy it will get when some of us girls have been drinking wine. Anyway, I'd like to have a chat just to let loose!

Rules: THERE ARE NO RULES!
Why?: We all have to let loose and have fun...despite our hair loss!

Warning: If you offend easily by "strong language" and "inappropriate girl talk" about men, life, sex, or anything else...ya might want to skip this one. BUT if you don't mind getting a little freaky and letting it all hang out...come on and join me. (Geez, I hope I won't be the only one in there now! AHAHAH)

Event Date/Time Oct. 17, 2009 from 8:00 PM to 9:30 PM

Host:  Angela Location The Rubber Room (chat room)<br /><br />

For anyone confused about the time, it will be held at the following time:

8:00 PM EST
7:00 PM Central
6:00 PM Mountain
5:00 PM PST

Our last ROMP lasted a whopping 5 hours!! I seemed like it was only an hour or two...so please jump in and out when ever you'd like!

Here is a link to sign up for the Event:

community.womenshairlossproject.com/event.php

I haven't written on The Alopecian Muse in quite sometime and I have been researching for my next article. I am still a little scattered these days at home, so commiting to writing the article is a slow process. Anyway, when I get around to writing it, it will be on subject of "Integrity"...I loved all the quotes that I found so far, so I thought I'd post them. They were really cool and inspired me to reflect upon what it means to live with Integrity:

 A president's task is not to do what is right, but to know what is right.
- Lyndon B. Johnson, 1908-1973, 36th President of the United States

 Say not unto thyself, Behold, truth breedeth hatred, and I will avoid it; dissimulation raiseth friends, and I will follow it. Are not the enemies made by truth, better than the friends obtained by flattery?
- Akhenaton, (c. B.C. 1375), Pharaoh of Egypt

 Compassion, in which all ethics must take root, can only attain its full breadth and depth if it embraces all living creatures and does not limit itself to mankind.
- Albert Schweitzer, 1875-1965, Alsatian humanitarian, philosopher, physician, musician, Nobel laureate

No man is wise enough or good enough to be trusted with unlimited power.
- John Adams, 1735-1826, Second President of the United States

 They deem him their worst enemy who tells them the truth.
- Plato, c 427-347 BCE, Greek philosopher

 If the truth doesn't save us, what does that say about us?
- Lois McMaster Bujold, Born 1949, American author of science fiction and fantasy works

Be ashamed to die until you have won some victory for humanity.
- Horace Mann, 1796-1859, American educational reformer

 If your morals make you dreary, depend on it, they are wrong.
- Robert Louis Stevenson, 1850-1894, Scottish novelist, poet, essayist and travel writer

Character isn't inherited. One builds it daily by the way one thinks and acts, thought by thought, action by action.
- Helen Gahagan Douglas, 1900-1980, American actress and politician

Personality can open doors, but only character can keep them open.
- Elmer G. Leterman, 1897-1982, American businessman and author

People who know how to employ themselves always find leisure moments, while those who do nothing are forever in a hurry.
- Jeanne-Marie Roland de la Platière, 1754-1793, French Revolutionary

 A man without ethics is a wild beast loosed upon this world.
- Manly Hall, 1901-1990, Canadian writer and mystic

Nothing gives rest but the sincere search for truth.
- Blaise Pascal, 1623-1666, French philosopher and mathematician,
working in his office.

Truth never damages a cause that is just.
- Mohandas Karamchand Gandhi, 1869-1948, Political and spiritual leader of India

We ought not raise expectations which it is not in our power to satisfy. It is more pleasing to see smoke brighting into flame, than flame sinking into smoke.
- Samuel Johnson, 1709-1784, English lexicographer, essayist, poet

It is with trifles, and when he is off guard, that a man best reveals his character.
- Arthur Schopenhauer, 1788-1860, German Philosopher

 You can preach a better sermon with your life than with your lips.
- Oliver Goldsmith, 1730 or 1728 - 1774, Anglo-Irish writer, poet, and physician known for his novel The Vicar of Wakefield

The actions of men are the best interpreters of their thoughts.
      - John Locke, 1632-1704, English, Oxford scholar, medical researcher and
physician, political operative, economist and idealogue for a
revolutionary movement, and philosopher

 That man is truly good who knows his own dark places.
- Beowulf

 What we think or what we believe is of little consequence. The only thing of consequence is what we do.
- John Ruskin, 1819-1900, British Writer, art critic, social reformer

Even a lie is a psychic fact.
- Carl Jung, 1875-1961, Swedish psychologist, psychiatrist

 Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, vision cleared, ambition inspired and success achieved.
- Helen Keller, 1880-1968, American blind/deaf author, lecturer

 I want to go right straight down the road, to do what is best, and do it frankly and without evasion.
- George C. Marshall, 1880-1956, American general, statesman

Amy Sky performs Dr. Maya Angelou's Poem "Phenomenal Woman"

I always think of self-acceptance as a “Hard Mistress” if I am not married to it. In our lives during the times of hair loss, we may “mess around” with self-acceptance, but never fully commit to it. This makes self-acceptance a mistress instead a life long lover and partner. We make self-acceptance a temptress, seductive and alluring, but always some how just beyond our reach, calling on her when we are bored with what we have chosen to “marry” and be our life long partner.

I, like so many other people out there chose to “marry” the acceptance that the world and society said was right for me. She was that perfect beauty, ageless, flawless, always fun, carefree and rich. I chose her because everyone around me told me that she was worth it, and that I would be happy if I espoused her and embraced her. But on my wedding night I found that she was not at all what everyone told me she would be. She was cruel, harsh, demanding and full of contempt for my imperfections. She was impatient with my frailties and found them to be totally unacceptable. She mocked me for not looking like the “beautiful people” and said I was less than worthy when I needed her most. Her love for me was based only on what I could give her and how I could make her feel and she gave nothing in return. Her love was an illusion and her beauty faded. I began to avoid her, isolating myself and retreating from all her friends. I feared rejection from her so I kept trying to please her!
But along came this mistress called self-acceptance. She could look deep within my soul and see me for who I was. She had a way of making me feel so special and when I was with her time stood still. She was wise, caring and knew me so completely. When I gazed upon her, it aroused me to be a better person, filled with passion, drive, courage, and life. But she wanted more than I was willing to give and I wasn’t willing to leave the one I married. Feeling hurt, my mistress retreated and hid from me. One day I was filled with jealousy because I saw her with another lover! What could I do to have her back? How do I tell her that she means more to me than the one I chose to marry?

Shall I go home to the one I married, miserable and defeated? Or shall I find my mistress and take her once again and make a committment to love her and adore her…to cherish her and show her just how much she means to me.
She will accept nothing less than that, and that is why she is such a Hard Mistress.

http://www.alopecianmuse.com/acceptance/self-acceptance-is-a-hard-mistress/

Hi Ladies,

Although I do not know much about Bio-Identicals, in going to the FDA today I found an interesting article on the topic. I don't have an opinion for or against the use of Bio-Identicals, but it is always wise to talk with your physician before embarking on any medical treatment. This is the article from the FDA website:

"A natural, safer alternative to dangerous prescription drugs"

"Can slim you down by reducing hormonal imbalances"

"Prevents Alzheimer's disease and senility"

All of these claims have been made by marketers of compounded "bio-identical" hormones, also known as "bio-identical hormone replacement therapy" (BHRT). But these claims are unproven. FDA is concerned that claims like these mislead women and health care professionals, giving them a false sense of assurance about using potentially dangerous hormone products.

FDA is providing the facts about "BHRT" drugs and the uncertainties surrounding their safety and effectiveness so that women and their doctors can make informed decisions about their use.

"BHRT" is a marketing term not recognized by FDA. Sellers of compounded "bio-identical" hormones often claim that their products are identical to hormones made by the body and that these "all-natural" pills, creams, lotions, and gels are without the risks of drugs approved by FDA for menopausal hormone therapy (MHT). FDA-approved MHT drugs provide effective relief of the symptoms of menopause such as hot flashes and vaginal dryness. They also can prevent thinning of bones. FDA has not approved compounded "BHRT" drugs and cannot assure their safety or effectiveness.

During menopause, a woman's body produces less of the hormone estrogen, which may lead to hot flashes, vaginal dryness, and thin bones. MHT drugs contain estrogen or a combination of estrogen and another hormone, a progestin. FDA-approved MHT drugs are sold by prescription only, and FDA advises women who choose to use hormones to use them at the lowest dose that helps, for the shortest time needed.

Some "BHRT" drugs are compounded in pharmacies. Traditional compounding involves combining, mixing, or altering ingredients by a pharmacist, according to a prescription from a licensed health care professional, to produce a drug that meets an individual's special medical needs. FDA considers traditional compounding to be a valuable service when used appropriately, such as customizing a drug for someone who is allergic to a dye or preservative in an FDA-approved medicine. But some pharmacies that compound "BHRT" drugs make unsupported claims that these drugs are more effective and safer than FDA-approved MHT drugs.

FDA is taking action against pharmacies that make false and misleading claims about "BHRT" drugs and is encouraging consumers to become informed about these products and their risks. Here is some information to help sort the myths from the facts:

Myth: "Bio-identical" hormones are safer and more effective than FDA-approved MHT drugs.

Fact: FDA is not aware of any credible scientific evidence to support claims made regarding the safety and effectiveness of compounded "BHRT" drugs. "They are not safer just because they are 'natural,'" says Kathleen Uhl, M.D., Director of FDA's Office of Women's Health.

Drugs that are approved by FDA must undergo the agency's rigorous evaluation process, which scrutinizes everything about the drug to ensure its safety and effectiveness—from early testing, to the design and results of large clinical trials, to the severity of side effects, to the conditions under which the drug is manufactured. FDA-approved MHT drugs have undergone this process and met all federal standards for approval. No compounded "BHRT" drug has met these standards.

Pharmacies that compound these "BHRT" drugs may not follow good drug manufacturing requirements that apply to commercial drug manufacturers. Compounding pharmacies custom-mix these products according to a health care professional's order. The mix contains not only the active hormone, but other inactive ingredients that help hold a pill together or give a cream, lotion, or gel its form and thickness so that it can be applied to the body. It is unknown whether these mixtures, which are not FDA-approved, are properly absorbed or provide the appropriate levels of hormones needed in the body. It is also unknown whether the amount of drug delivered is consistent from pill to pill or each time a cream or gel is applied.

Myth: "Bio-identical" hormone products can prevent or cure heart disease, Alzheimer's disease, and breast cancer.

Fact: Compounded "BHRT" drugs have not been shown to prevent or cure any of these diseases. In fact, like FDA-approved MHT drugs, they may increase the risk of heart disease, breast cancer, and dementia in some women. (See www.nhlbi.nih.gov/whi/index.html for information on the Women's Health Initiative, a large, long-term study that tested the effects of FDA-approved MHT drugs.) No large, long-term study has been done to determine the adverse effects of "bio-identical" hormones.

Myth: "Bio-identical" hormone products that contain estriol, a weak form of estrogen, are safer than FDA-approved estrogen products.

Fact: FDA has not approved any drug containing estriol. The safety and effectiveness of estriol are unknown. "No data have been submitted to FDA that demonstrate that estriol is safe and effective," according to Daniel Shames, M.D., a senior official in the FDA office that oversees reproductive products.

Myth: If "bio-identical" products were unsafe, there would be a lot of reports of bad side effects.

Fact: "Bio-identical" products are typically compounded in pharmacies. "Unlike commercial drug manufacturers, pharmacies aren't required to report adverse events associated with compounded drugs," says Steve Silverman, Assistant Director of the Office of Compliance in FDA's Center for Drug Evaluation and Research. "Also, while some health risks associated with 'BHRT' drugs may arise after a relatively short period of use, others may not occur for many years. One of the big problems is that we just don't know what risks are associated with these so-called 'bio-identicals.'"

Myth: A pharmacy can make a "BHRT" drug just for you based on hormone levels in a saliva sample.

Fact: "Advertisements that a drug can be created 'just for you' based on saliva testing are appealing," says Uhl, "but unrealistic." Hormone levels in saliva do not accurately reflect the amount of hormones a woman has in her body for the purpose of adjusting hormone therapy dose levels. A woman's hormone levels change throughout the day, and from day to day. FDA-approved tests can tell a woman's hormone level in a specific body fluid, such as saliva, blood, or urine, at that particular point in time. "These tests are useful to tell if a woman is menopausal or not," says Uhl, "but they have not been shown to be useful for adjusting hormone therapy dosages."

Myth: FDA wants all compounded hormone therapies off the market.

Fact: "We are not trying to pull all compounded hormone therapies off the market," says Silverman. "We believe that, like all traditionally compounded drugs, a woman should be able to get a compounded hormone therapy drug when her physician decides that it will best serve her specific medical needs. But we also want women to be informed and careful about choosing products that have not been proven safe and effective. And pharmacies cannot promote compounded drugs with false or misleading claims."

In addition, FDA has not approved any drug containing the hormone estriol. Pharmacies should not compound drugs containing estriol unless the prescriber has a valid investigational new drug (IND) application. INDs provide benefits that include allowing physicians to treat individual patients with drugs that are not FDA-approved, while also providing additional safeguards for patients.

Myth: All women who take FDA-approved MHT drugs are going to get blood clots, heart attacks, strokes, breast cancer, or gall bladder disease.

Fact: Like all medicines, hormone therapy has risks and benefits. For some women, hormone therapy may increase their chances of getting these conditions. However, there are no convincing data that there is less risk of developing a blood clot, heart attack, stroke, breast cancer, or gall bladder disease with a "BHRT" product. Women should talk to their health care professional about taking hormones. If you decide to use MHT drugs for menopause

• use at the lowest dose that helps
• use for the shortest time needed

If you are taking a compounded "BHRT" drug now, talk to your health care professional about treatment options to determine if compounded drugs are the best option for your particular medical needs.

http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm049311.htm

The title of my entry is "In Much Grief and Heartache Do I Write This Entry" and I have to say that it is indeed difficult for me to write. Let me start by saying that I love each and every one of you so very much. You are my sisters and my friends. But sisters and friends also tell the truth, and sometimes the truth hurts.

We come to the Network to seek comfort, support and hopefully some answers, and at times in an innocent attempt to compliment another member, that member can become hurt. For those of you who are new or don't know what I'm talking about, I would like to express the deep pain and heartache of MANY other members of this wonderful Network.

Since almost all (if not all) of you already have experienced the embarrassment, shame and humiliation of losing your hair in varying degrees, and understand the pain of explaining to family and friends, lovers and husbands what you are going through, we seek solice in this place. A comforting word, a gentle answer and most of all, understanding...because we have all been through the pain. What pain? The emotional pain of trying to show our hair loss to those closest to us and them dismissing us. Belittling us. Treating us like its not so bad and its all in our head; Like we want attention, or even like we are unstable in someway. Unglued, unhinged and imagining the whole thing. What could be worse than the pain of our family and friends minimizing our loss, our emotional pain and our absolute vulnerability? Well, it would be if another member of the Network or Forum did it to us too. It cuts deeper than if a family member said "its not that bad, you can hardly tell." It takes courage for members of the Network or Forum to post hair loss pictures. Some are so mortified by their loss that they will NEVER post a picture. Are they afraid of what other ladies with similar loss would say? Not necessarily. What has been expressed to me, time and time again, is their fear of posting pictures because of a comment that another woman made about a hair loss photo posted.

Let me give you some examples, and let me be very clear that this is not directed at any one person; my intention for saying these things is to help others be mindful the next time you would like to say something about another member's hair loss photos:

• It's hardly noticable! OMG, if only I had as much hair as you.
• What I wouldn't give to be where you are right now...my hair looks like shit in comparison to yours.
• You must be at the begining of your hair loss, because mine looked just like yours did. If I could go back and have that much hair again, I would not have spent most of my younger years worrying so much. Lighten up, its not that bad!
• You are so beautiful, wow, you finally posted pictures! The way you talk about your hair loss in the past, I thought your hair loss was more progressed than it really is. Why are you so freaked out? I would give anything to have as much hair as you have now!
• Wow, your hair looks so good, how could you be depressed?
• I know you think your hair looks like mine, but mine is much worse than yours.
• I can't even tell you have any missing hair.
• You're hair is so much thicker than mine.
• Some people just have thin hair naturally, I wouldn't worry, your hair looks perfectly normal.
• Some people just have very thick hair, you must be one of the lucky ones! Your hair looks normal, I never would have guessed you had any problems with hair loss.

Those are just a few off the top of my head that I have read in the time that I have been a member of this Network, but many times the above statements are said over and over. I have sent private messages to others when I have read these kinds of comments, asking others to kindly be mindful that their compliments are actually hurting other members. Sometimes my private message was received well, and at other times a woman felt she needed to defend her position and state that she meant no harm by it and going back to the member she left a comment for and stating her position all over again, digging the wound even deeper and in the end hurting the person she said she was really complimenting. She honestly didn't think her comment was hurtful in anyway and would go and appologize to the woman she complimented. Remember we are all raw emotionally at times, and extremely vulnerable and in the end the person offended in a quest for self preservation will say "Oh no, you didn't hurt me by that comment. Its ok, I knew what you meant." But many times that is not the case. I know that for a fact because I get a private message about it. These private messages are never bad mouthing another member. The message is always about how to handle the compliment and how it hurts them deep inside. It has nothing to do with the other person and more to do them feeling hurt and minimized.

No harm is ever meant by giving these compliments. The comments and compliments are always given with the best of intentions. But they are in fact not compliments. They seem like they are, but they cut deeply to the heart of many women on the Network. The woman getting the compliment, may thank you for it, but then will turn around and may remove her photos from the album. She may take her profile picture down too and finally, she may end up sending me a private message because of how hurt she feels that her hair loss has been minimized or made less than someone elses. This is not a competition ladies. We are not here to "one up" each other. Putting yourself down to another member doesn't make their loss any less hurtful. Just because you may feel your hair loss is so much worse than another's, will NOT make that other lady feel better. Not to mention the fact that the comment actually can hurt a woman that is just reading it.

Here is a scenario: (Name are made up)

Mavis just posted pictures of her hair loss. You tell her that her hair loss is hardly noticable. She has FPB, the lighting isn't the greatest in the photo and you think her hair looks great. You have similar hair loss, but yours is more progressed. You compliment her on how wonderful her hair looks and how lucky she is. But there are 30 other ladies that have read your comment and now they feel stupid for ever even thinking about posting a picture. They don't want to hear "your hair looks great", and now they are wondering if they can even bear to take that hair loss photo and post it. They think they too will be made to feel like its not that bad, when in their heart and mind they know it is.

How many doctors tell you that its not that bad? How many family members look at you like you're crazy? So why treat a fellow member of this Network that way? Why make them feel as though you have it worse then them? Hair loss IS hair loss, regardless of how much or how little you have. The heartache over this is enormous. I can not even begin to express the full measure of pain that these ladies go through when they hear these types of compliments. It cuts. And it sets us back in our healing and moving forward. Those kinds of compliments are like picking a deep scab, and everytime you pick at it, it bleeds. Sometimes it gets infected. The healing process now will take even longer because the scab was picked and a new one must be formed. It is a perpetual state of flux, and a trigger to depression. There are ladies that have come so far in their healing, and I have been blessed to witness it...then, BAM!, a compliment that sends them spiraling into depression and they feel like they are right back where they started. Many don't realize at first that it was the compliment that triggered the depression.

So how do you compliment a woman about her hair? From my experience, I have found that a good time to compliment another member is when it is warrented. They are growing their hair back and they themselves feel they are making progress. Its important to know who you are complimenting. If there is a woman you think looks great and you love the way her hair looks, a wise thing to do is read her most recent blog or comments first. You could go to that new picture she posted and on the picture she says "its getting worse"...that is not the time to tell her it isn't that bad. She feels horrible about her hair. It becomes a knee-jerk reaction. I wonder if the statement "its not that bad" should even be in our vocabulary, because to us it may not be that bad, but to her it IS really that bad. We all have our perception of what good and bad is. A woman could join and she is just beginning to lose her hair. Everyone in her life thinks she is nuts. Is that the time to say "its not that bad" as well? Sometimes silence is of great support. We all look at the photos, and private reflection is at times more powerful than a compliment. Simply saying "Thank you for posting your photos" is a great compliment. Hair is a delicate issue, and we should all know that by now.

One thing that the Network has shown me is that we are more than our hair. We come here because of our hair loss problems, but we discover a lot about ourselves in the process. We realize our humanity. We should never forget that. In our self consumed and often times obsessive behaviors, we realize there are others just like us and we begin to reach out to them. I have seen that as the greatest gift this Network has to offer. The Network affords us the opportunity to step out of our self consumed thoughts and to think about others that are hurting. It helps to ground us.

As I have been growing back my hair, I have really appreciated the compliments that I have received. I cherish them. Do you want to know which one I have loved the most? "I really miss your bald head." LOL My hair growth is promising and disappointing at the same time. I know that. I have appreciated the honesty about how my hair really looks. But not everyone is like me. I may appreciate it, but that doesn't mean that I would go to another lady and tell her what I think about her hair....that is, unless she asked me. I have not had one woman ask me to honestly tell her what her hair looks like. I have to admit that there have been times that I have been absolutely blunt and honest in expressing that a woman shave her head. This I have done because there was very little hair left. Beyond that, I have not been invited to express such an opinion about what I think about a woman's hair. I won't go down that road. I have instead opened my eyes, beyond what the photo looks like and decided to look at something that does not lose its beauty. I have decided to look at the heart and the soul as much as she will allow me into her world. All of you are beautiful beyond belief and I am so blessed to be a part of each of your lives. You all help me to grow, to change, to reach higher, to gather courage and strength. Each time you open up and show who you are, I grow a little stronger. Its not your hair, its your heart. The beauty of your relentless and tenacious pursuit to find the answer to your questions, your reflections about how you feel emotionally. We are growing together. Its something that none of us expected when we joined, but we find ourselves strangely addicted to this place...beyond hair. It is truly the Great Sisterhood. Let us protect one another. We all know which comments hurt us in our everyday life...can't we all be mindful of them as we speak to one another?

Someone is Posing as Me!

As of May 2, 2009 the picture on the left is me. That’s right, this bald chick’s hair loss is going in remission. I won’t know for another six months if my hair is stable, but for now it is. I have both scarring and non-scarring Alopecia. Scarring Alopecia’s technical name is Cicatricial Alopecia. The scar exists under the skin and no outward signs of scarring can be seen. Upon close examination of my scalp, you will however see that there are no openings for hair to grow. The holes are closed up. This is a permanent loss of hair that can NEVER grow back. I have these spots all over my scalp. I also have been through a wide range  of other forms of non-scarring Alopecia which is not permanent. Over the last five and a half years, I have not seen as much growth as I have now. I attribute this awesome hair growth to the lack of mold out here in the South West. Hair that seemed to be missing for so long has awakened like Sleepy Hollow. Those hairs that have been sleeping have chosen to awaken white as snow. It is definitely a very interesting look for me.

So here I am in all my glory. No make up, and newly growing almost full head of hair coming in. I posted that picture yesterday on the Women’s Hair Loss Project Network. Well, today, I get a private message on the Network from one of the ladies who was concerned about a blog site she stumbled upon and it had a picture of ME there. She gave me the link, and I was angry beyond all belief by what I saw. Let me give you a little background about the Women’s Hair Loss Project Network and Forum…

The Network and Forum were created to be a safe place for women to come and talk about their hair loss and seek comfort and support. I wrote an article about the Network if you would like to read it here. Anyway, one of the reasons I love the Network and Forum is that you will not find any kind of advertising for hair loss products of any kind. The owner of the site has dedicated her life to helping women who suffer from hair loss. There are lots of forums and membership sites out there and the one thing they all have in common is that they offer some sort of products. Now, there is nothing wrong with making money, but I believe that there should be at least one place in the whole of the world wide web where women can escape from being bombarded by someone peddling a wig, topper, laser comb, laser treatments, pills and potions all promising to grow that head of hair back. The hair loss product industry is huge! There is a lot of money to be made there. On the Alopecian Muse, I have also chosen NOT to sell any products related to hair loss. My reason? I believe that women can be beautiful bald, and if they see that there is yet another option in being bald, why not?! Not everyone can afford expensive wigs, hair systems, loony “laser therapy” that doesn’t work, hair loss potions, or harmful medication that may or may not help in the hair growth process. We are bombarded everyday with these things, and when you are a woman and you are going bald, you will try almost ANYTHING to get that head of hair back. One woman said to me joking around that if hair would grow back by strangers pissing on her head, she would let them do it just so it would grow again. Was she really joking? I don’t think so. Hair loss is such a deeply emotionally scarring process that leaves both men and women feeling less than beautiful. Less secure. Those of us who have experienced it have gone through times of isolation, pushing away even those we love the most out of self preservation.

So…who is the freaking poser? Well, it is obviously a new member of the Women’s Hair Loss Project Network. You wouldn’t believe it if I told you how many people peddling products sign up trying to sell their shit on the Network. Selling stuff will get you immediately banned from the site, but that doesn’t stop greedy people from trying anyway.

This woman copied pictures of me and a few other ladies on the Network and decided to post them on her blog as HER! Beyond the fact that it is not her in those photos, she is using the picture of ME and my new hair growth to sell an e-book titled “Reverse Female Hair Loss” written by a woman named Ashley Michaels. Why would this chick need to use pictures of women on the Network instead of her own? Not only that, but gives a bogus testimony? It is all a big lie and hoax! This woman is trying to get her piece of the hair loss pie and wants to use unsuspecting women to do so! Do you see anything wrong with that? Here are two screen shots of her site:

I plan on also leaving a nice little blog on the Network directed at her, so after I do that she may actually remove the site and/or pictures. I thought a few screen shots were in order just in case she does decide to take down the site. I will also be reporting this to the company she is trying to make money from…namely Ashley Michaels. There are genuinely sincere people out there that do want to help women with hair loss, and I don’t want to disparage Ashley Michaels name or e-book because I have not read it. I don’t know if her book is just a big lie, or if there is some truth to it. One thing I do know though…if I were selling an e-book and bogus claims were being employed, I would sue their asses for everything they got.

A little message for Miss Becky from “Becky’s Hair Loss Blog”:

Becky,

You have come onto the Network “claiming” to be a woman in need of support for your hair loss, but all you have done is show that you are a money grubbing, hair loss whore trying to make money off the misery and vulnerability of others. Why use our photos? Why not use your own? You make me sick beyond belief.

Go crawl back under that rock you came from you fucking snake!

No Longer Yours,

Angela

For anyone wishing to leave Miss Becky a comment on her blog about all this, I highly encourage it! She may end up removing it, so get over there as quickly as possible and leave her your thoughts! Spread the love my friends. What she did was wrong, make sure to let her know!

Here is her site:

http://beckyshairlossblog.blogspot.com/

Bald Beauty of the Day