Alopecia World
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Writing blogs is so therapeutic
Well, a lot has happened since my last blog post...so I thought I would write another one..this is a great way to keep track.
I went to my doctor who arranged for me to have blood tests. I got tested for diabetes, auto immune disorders, protein and iron deficiencies. I also got my thyroid checked plus a few other things. I had convinced myself this was all down to low protein in my body. Turns out I was wrong. All my tests came back normal. I guess I should have been relieved but a part of me was hoping to get an answer from those tests. I asked my doctor where we went from there. After talking to some great people on here, I learned that it seemed the norm to go to a derm and also that oral steroids work for some people. I mentioned these to my doctor and he told me that the derm will prob refuse to see me and the oral steroids probably wont work. I guess I trusted what he said but as time has went on, I am thinking about going to see my own derm. It sucks that my doctor doesn't really seem to care.
Anyway, I had found a few small patches and up until New Years, I was able to cover them up. I wasn't shedding etc so I thought this would get better by itself. Then as soon as the New Year arrived, my hair started falling out in huge lumps. As of right now, I still have a little bit of hair but I think it will all have gone by next week. I have got to the point where I am so scared to wash or brush it. But this is the card I have been dealt I suppose and maybe it's a test. It has definitely made me a better person, thats for sure.
I got my first wig 5 weeks ago and I got a second one on Friday. I don't know how I would cope without them, Not many people know about my alopecia and are completely unaware of my wig. That's how I want it to stay, at least for the timebeing. This has definitely been a struggle and I have my bad days, as I am sure everyone on here does, but the good days outweigh those and I need to continue to be strong and stay positive. I have cried a lot over this but I refuse to let anyone see that, not even family. I want them to see that I am coping with this.
I am dealing with this with a lot of hope and this site is such a great support. To be honest, I don't think I would have come this far without it. Lets hope the rest of this year is a lot better to all of us.
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Comment by Mary on February 9, 2010 at 12:34pm
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Hang in there. I took oral steroids for a month when my AA started turning to AT in late 2007. They didn't help at all, and I felt lousy on them. My feeling is that this disease just does what it wants. Take care, Mary
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Comment by Sarah McA on February 9, 2010 at 1:46pm
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Hey Mary, thanks...I was actually wondering if oral steroids had any side effects..I guess they do. I guess this is something very unpredictable that we have no say in
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They may have different effects on different people. I experienced a slight weight gain and general "blah" feeling...nothing to dramatic. But, since it didn't seem to be having any effect on my advancing hair loss, I decided not to do it to my body.
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That's so right, Aimee...I don't want people with AA to assume that it's going to progress to AU. I think that many of us who have experienced total hair loss are more active on Alopecia World sometimes, and perhaps that gives the idea that it's inevitable. But, as I understand it, it's actually more rare. I suspect that many people who have occasional patchy hair loss, stability with only small patches, or regrowth, don't continue to post so much or even participate on Alopecia World.
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Comment by Natalie on February 9, 2010 at 2:55pm
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Hi Sarah! I'm sorry to hear that your hair keeps falling out, but I'm glad that you are dealing so well with it. In my own experience, the oral steroids actually had the OPPOSITE effect for me, and I ended up losing more hair in the long run because of them. I'm now AU (which is kind of cool - no shaving!) They are also very harsh on your body (I don't suggest using them). Keep on smiling, Sarah! Your positive attitude will help you pull through this :)
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Thank you all so much for your comments...I think I will be staying away from oral steroids. i did try steroid cream but like you Natalie, that's when I noticed my hair started to fall out in lumps. I know you tried the oral steroids so I guess they are pretty similar. Prior to that I just had 2 patches that I was able to cover up. You guys are all so positive. At the minute I have a tiny but of hair on the back of my head but I think it will be gone soon and I will be completely bald. I'm actually considering shaving my head as its so hard watching my hair fall out. I'm sure you all understand that feeling. I just dont know if I'm brave enough. I think I can feel some regrowth but I dont want to get my hopes up incase they are exclamation hairs. Time will tell I guess. i hope you get some answers from your tests Aimee
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I did get steroid shots into the bald areas for 7 years, plus applying steriod cream twice a day. I don't know if the cream did anything, but the shots definitely made hair grow in the bald areas (but it didn't last). I finally had to stop getting shots when the bald areas expanded to too much of my scalp.
Sarah, there are 4 photos on my page of the night before I shaved it off...here's one:
http://www.alopeciaworld.net/photo/night-before-shaving-it-all-3?co...
I felt SO much better after getting rid of it...I felt in control for the first time in months. I no longer cried every night picking up handfuls of hair in front of my sink, and I was no longer obsessed with examining the expanding bald areas in the mirror. Getting rid of it was really a good decision for me.
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I guess everyone is different. Wow, you were so brave to shave your head. I have less hair than that right now. The top of my head is almost all bald. I haven't taken any pictures as I am too scared to. Sometimes I think I should but I always talk myself out of it. I have got to the point now that I expect my hair to fall out and I dont even check the patches anymore. I am so prepared for going completely bald. I honestly never knew I had it in me to be this strong but I am surprising myself lol
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You will continue to surprise yourself with how strong you are. I think this whole experience has increased my self-confidence. You're way ahead of the game. (pun intended) ( ;-)
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lol...thank Mary..good pun :)
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