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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

Remember this when you're feeling sad...

Ok, well one of my life-long best friends just produced her 1st cd (which is amazing, I might add). Well one of the songs actually was one of the 1st things to make me not feel so sad about my Alopecia. I felt like she was singing it directly to me! Anytime I'm feeling the slightest bit down, I play this song and it picks me right back up. The song is called "I Wish He'd Say." Here are the lyrics. I'm posting this because I hope the lyrics will pick you up like they did for me. You can hear the… Continue

Added by Mandy on May 22, 2008 at 2:00pm — No Comments

My 1st blog post

well I have had alopecia for about 8 months now...the 3 giant patches on top of my head are growing back...you can just call me 'spike'......... but I have now lost about 4 or more inches on the back of my neck and its still going up!!!!! as soon as I figure out all the ins and outs of A-world I will post some pics ..

Added by Gina on May 22, 2008 at 9:47am — No 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

Louisville

I got my package for the conference now from NAAF. Im excited like a little child. Its my first and I really looking forward to it and to meet others with alopecia. I hope to make new friends over there.

Take care everyone.

Hugs, Roger.

Added by Roger on May 21, 2008 at 3:16pm — 2 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

Countdown time....

Well it's 27 days til I leave for the US....



And I'm starting to freak out a little.....camp's not going to be easy with no hair. I'll be living in a room with about 12 other people so they'll all have to know about my lack of hair. Not sure how the kids are going to take it....



Second countdown is to my new freedom suction wig......wait for it.....only 6 days until it should be here and I can't wait! Fingers crossed it does get here on that date! I'm hoping that it's… Continue

Added by Karina Louise on May 21, 2008 at 8:30am — 2 Comments

Cats, hair balls, et al

I’m feeling sorry for the cat. She’s shedding something terrible. Aside from the hair balls, there’s hair everywhere…in the shower clogging the drains, on the floor sticking to my feet, on the counters and in my food. Oh wait, that’s my hair.



Made a trip to the docs yesterday just to make sure something insidious isn’t lurking below the surface. Knowing that I’m 40 something, he began with a well rehearsed ‘it’s natural at your age to start losing your hair” speech. I’m pretty sure… Continue

Added by Tony on May 21, 2008 at 6:30am — 2 Comments

Please give me some advice :(

Sorry, I'm a compulsive blogger! But I really really would appreciate some advice now more than ever. I'm starting to get this sinking, scared feeling in my gut as my 2nd derm appointment this Friday is fast approaching. When I went the 1st time 3 weeks ago, I had 4 spots, which wasn't bad. But now I have 14! Should I let the doctor inject all 14 spots? I hate hate hate the dents/divots that formed in my scalp from the 1st set of injections. They're still there and I hate how it feels! I can't… Continue

Added by Mandy on May 20, 2008 at 8:18pm — 15 Comments

AA Update 5/20/08

Since my diagnosis on 5/2/08 when I had 4 bald spots, I now have 14.



Since my last blog with pics, here are the new ones...



Number 11 is new...small for now



Numbers 12 and 13 are new



Number 14 is on the left side...I didn't photograph it because I have a dorky little mole there...funny how I'm more embarrassed of that then of showing the bald spots.… Continue

Added by Mandy on May 20, 2008 at 11:38am — 2 Comments

It's been a while

I haven't been on in a while. I'm so busy with school, its the only thing that I can manage right now - and I can't only get through that by chanting "Less than thirty days" over and over and over. I'm so tired and ready for summer. It doesn't help that it's been 90 degrees for three days!!!
So I was just popping in to say hello and I hope that everyone is doing GREAT!
XOXO
CAR

Added by Carmella on May 19, 2008 at 9:08pm — 1 Comment

Hello

Hello, I am a breast cancer survivor and have started a new company for female hair loss patients. I just wanted to share our website with all of you who are affected by alopecia. It is www.iwearitwell.com. As you all know it is a mental struggle to try to obtain some harmony in your life when you are faced with hair loss. We have put together some fun, bright and cheerful options to ease your days ahead while eliminating the daily concern of what to wear. I wish all of you many healthy and… Continue

Added by Kelly on May 19, 2008 at 1:09pm — No 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

My pictures...

I delayed putting my pictures of my AA up here because I didn't want people to just feel sorry for me. I have learned to (for the most part) accept this disease as part of my life and to keep living. I won't lie, I still have up and down days, but I am no longer ashamed to tell people what I have and talk about it in public. Gone are the days of "I don't know why I have a bald spot" or my all time favorite: "I hit my head as a child," an excuse for both my bald spot and my personality. But I… Continue

Added by Drew on May 18, 2008 at 1:41pm — 1 Comment

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

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