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Posted: Feb. 24, 2010 - 9 comment(s) [ Comment ] - 0 trackback(s) [ Trackback ]
Category: Update

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.

Posted: May. 13, 2009 - 30 comment(s) [ Comment ] - 0 trackback(s) [ Trackback ]
Category: Support

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?

Posted: Jan. 25, 2010 - 13 comment(s) [ Comment ] - 0 trackback(s) [ Trackback ]
Category: Update

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!

 

Posted: Nov. 27, 2009 - 10 comment(s) [ Comment ] - 0 trackback(s) [ Trackback ]
Category: Update

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?

Posted: Oct. 17, 2009 - 2 comment(s) [ Comment ] - 0 trackback(s) [ Trackback ]
Category: Update

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.

Posted: Oct. 16, 2009 - 10 comment(s) [ Comment ] - 0 trackback(s) [ Trackback ]
Category: Update

alt

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


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