Featured Blog Posts – May 2008 Archive (29)

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Missing my eyelashes

I guess I'm having a reaaaally bad week, I'm missing my eyelashes more than ever. I got a new full lace wig (I call it my hair by the way, hate the word wig) recently and I love it , so i don"t really care about being bald. Got my eyebrows tattoed and I like them so that is OK. But my eyelashes can't be replaced...I don't wear the fake ones unless going to a party or something like that but even when I do, it's just not the same ...Lost my eyelashes 6 months ago and I wonder if they will ever… Continue

Added by Gina on May 29, 2008 at 8:00pm — 13 Comments

The results are in

The doctor’s office called yesterday with the results from last week’s blood test. Nothing remarkable. I’m relieved, yet disappointed, as I was hoping for a treatable cause along the lines of a fungal infection. Amazing that one would wish for a fungal infection. All things considered, the alternatives could have been much worse than a dx including the term idiopathic – that’s Latin for unknown origin…medical speak for they don’t have a clue.



They offered a referral to a… Continue

Added by Tony on May 29, 2008 at 11:55am — 1 Comment

Different Types of Alopecia

First of all, I want to say that everyone on this site is such a wonderful and beautiful person both inside and out.



So folks, I am not totally bald (I know I need a picture, but my husband hates taking them and I hate asking). I guess I have felt that having really thin hair on top is both a curse and a blessing all the same. I mean since I have eyelashes and eyebrows I am not as susceptible to illness, but also people still question me about why I wear a wig and what kind of… Continue

Added by Danna on May 29, 2008 at 12:33am — 6 Comments

In defense of Carol's recent blog

Carol has a blog entitled, "Treatments are NOT cures" on her page, and it is definitely a hot-button subject guaranteed to get a lot of buzz. I am in total agreement with the blog posting, and you can read it on her page at your leisure. However, in the interest of conserving space on her page, and to provide an additional space for your opinions, I have chosen to post my response to the blog here. Please tell me what you think.



Carol, I'm glad you made this vent rather than… Continue

Added by kastababy on May 28, 2008 at 9:30pm — 7 Comments

2nd derm appointment today

Well so I had my 2nd dermatologist appointment today. It was kinda depressing. The doctor was upset the spots had spread as much as they had in only 3 weeks. He said, "I had a feeling this was going to happen with it having coming on as quickly as it did." He said that usually when it starts so fast like that (I had 4 spots right away within a week at first) that the treatments are usually not as successful as someone who just goes in with one little patch (based on what he's seen in his… Continue

Added by Mandy on May 23, 2008 at 3:44pm — 4 Comments

Support Groups

I’ve kept pretty much to myself these past few weeks. In retrospect, distancing myself from family and friends was a not one of the smartest things I’ve ever done. As the saying goes, “no man is an island”. It was time to move forward.



Despite my trepidation, I ventured out to the local NAAF meeting last night. Glad I did. What I found was support, camaraderie, and much needed laughter. As if amongst family and old friends, I felt comfortable figuratively, as well as literally,… Continue

Added by Tony on May 23, 2008 at 11:40am — 6 Comments

I've become a human pincushion

I’m not a fan of needles. But about once a month I would make myself suffer and go to the dermatologist’s office just to get the injections in hopes of making the hairs grow back on the ever-growing bald spots on my head. A few times with little to no effect and I decided to start looking for something else.



One day after missing a class because of my dermatologist appointment I went to talk to my professor about making up the work I’ve missed. The teacher (science course) also… Continue

Added by Drew on May 21, 2008 at 9:34pm — 5 Comments

My new Hair!

As my previous post said, all my spots are really in the back of my head. So, I can cover it if it is not a windy day. We'll yesterday I went to the mall. The little carts that they have in the center of the mall? They have one that sells hair extensions. They just clip in, and you take the in and out everyday. It is synthetic hair. So I tried it! I love it! I have pretty long hair. And I love the weight of them, it won't blow as much on the windy days, and will look cute in a pony tail! We'll… Continue

Added by Jennifer on May 21, 2008 at 11:00am — 3 Comments

Talking to my daughter

Kids. They know more than we realize yet less than they might think. Disinformation is often more troublesome than no information at all. Imaginations run wild, thinking the worst…afraid of the perceived truth.



Such was the weekend. I was worse for wear but managed to smile despite the trials and tribulations of the week. Apparently my best attempt at a happy face was less than convincing as my youngest daughter sensed something was amiss. Her nervous demeanor was obvious as she flit… Continue

Added by Tony on May 19, 2008 at 11:58am — 2 Comments

Ode to Little White Fuzz

Oh, little white fuzz

on top of my head

You are so short and white



Oh, little white fuzz

so soft and cute

Inspire the other patches...you might!





LOL. Dunno...just feeling silly today. But seriously...so when I got the first steroid injections on May 2nd, I had 4 spots at the time. Now 3 weeks later, I can see a small patch of white hair coming in in one of the spots...but just one. I'm trying to think about this logically...and if it was the… Continue

Added by Mandy on May 19, 2008 at 11:57am — 3 Comments

Relationships...

So.... I haven't really written any 'blogs' before... (weird word)... Anyways, so I'm just basically gunna vent. I'm sure some of you know exactly what I'm talking about.



You know what I'm pretty sick of? Meeting a guy while I'm wearing a wig, then adding them on facebook or msn and they see a picture of me bald and they just stop talking to me or avoid hanging out and whatnot. I'M SORRY, because we all asked to have this, right? I'm not complaining about it but it would be nice to… Continue

Added by Courtney on May 19, 2008 at 12:30am — 9 Comments

Peace

Just had to write and say how at peace I finally am with this whole thing. Having aa was so damn hard on me, but now that I have au (which you would think would be worse) I just don't seem to care. Everyone has been so awesome -- even jealous -- that I no longer have to shave my legs that it's almost funny! I am lucky to have a husband and kids who honestly don't care what I look like. I'm beautiful in their eyes and that's what's important.



It's strange.....I really don't know what… Continue

Added by Daria on May 18, 2008 at 7:11pm — 2 Comments

Mother’s Day Massacre

I figured that sounded like a good term for this story. So mother’s day became a double holiday for my mother as it was also her birthday this year. So when Sunday came we went out to a very nice restaurant which is very popular especially on holidays.



From the start my mother could tell I was uncomfortable. For the last couple weeks I have worn my Atlanta Braves hat backwards pretty much everywhere. Since this was a nice restaurant I wasn’t going to try to wear my hat however. I… Continue

Added by Drew on May 16, 2008 at 8:39pm — 5 Comments

Hope and optimism are powerful teammates

Hi everyone, I should clarify what I wrote in my previous blog. I got way ahead of myself and skipped over details that I feel it is only right to share with you. The Alopecia Registry is not directly researching for a cure. They are only data collecting at this point. I feel, however, that without participation, no progress can be made in our cause. And that progress can possibly lead to a cure.



I spoke with my rep at MD Anderson today. She stated that answers I provide on their… Continue

Added by Kelly on May 16, 2008 at 3:23pm — No Comments

An epiphany

Epiphany - the sudden realization or comprehension of the essence or meaning of something.



I did some web surfing last night, trying to get a handle on both my emotions and the reality of alopecia. Somewhere between the dark and the light I had an epiphany. I can choose to wallow in self pity, wasting hours, days, even years which are then gone forever. Or, I can take the bull by the horns and live with passion, regardless of the opportunities, even those disguised as obstacles,… Continue

Added by Tony on May 16, 2008 at 12:02pm — 3 Comments

Growing up with AA!

I was diagnosed with AA when I was 5. I grew up in a private school from kindergarten to 8th grade, It was a small school, my 8th grade graduating class was 6 people! lol We'll when I was in kindergarten, my mom was blow drying my hair and saw a spot on the back of my head. After that I think I lost probablly 40-50% of my hair. My Aunt took me to the doctor, my mom was always working. I love my Aunt by the way! The doctor said I was going to loose all of it. My teacher stood me in front of the… Continue

Added by Jennifer on May 16, 2008 at 11:25am — 6 Comments

The past 8 months...My story so far

So much of my life has changed within the last 8 months I don't even know where to begin. This may just be a way for me to vent but if anyone takes the time to read this kudos to you, and if you leave me some tips of feedback, it is greatly appreciated. I don't even know if anyone will read this.



I guess it all started at the end of last summer. I had just been hired to coach soccer at my old high school/middle school and was really excited. I have played soccer since I was 5 and… Continue

Added by Drew on May 16, 2008 at 2:41am — 4 Comments

My experience with AA thusfar...

My hair first started falling out the week of April 28th, 2008. I had my first doctor visit on May 2nd and received my first round of steroid injections. It is now May 15th and my hair just keeps falling out. I've got 10 bald spots now. At this point I really just wish it would all fall out so that I don't have to deal with these patches and wondering every day what's going to happen.



Numbers 3 & 6 were the first ones and have definitely grown. 5 is a tiny newbie.…

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Added by Mandy on May 15, 2008 at 10:57am — No Comments

Help find the cure

Have you registered on the Alopecia Registry? http://www.mdanderson.org/departments/alopecia/

It will help MD Anderson with research on the exact causes for Alopecia. It is also possible that you will be asked to go to level 2 and actually partcipate in a research study. I was surprised when I was asked to participate in the research. I am now in that process and would appreciate your good thoughts and prayers for it to go smoothly. I must fill out paperwork, visit a dermatologist and get… Continue

Added by Kelly on May 14, 2008 at 8:00pm — 1 Comment

A Little Upset...

Well, I AM RJ posted a forum called "What has alopecia done for you?" I wanted to read the responses, and well just got down.Everyone seemed strengthened for it and strong. So, I started thinking "what has alopecia done for me?" My answer, nothing. It has made my daughter's life such a struggle so far, and I am not looking forward to the future with all of the frustrations to come with teasing and dating. I don't know what to do. I am so upset tonight with the thoughts that this disease has… Continue

Added by Miranda on May 11, 2008 at 12:12am — 10 Comments

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