I first noticed my alopecia in Sept 2012. Fast forward to Dec 1, 2013, and I have lost all but a 1 inch strip of hair on the top of my head. I have a head full of regrowth, not too long ( A few inches), but still regrowing. In the last week, I have noticed probably 4 little finger tip size spots of baldness again. I have come to terms that I am starting this process over. This has been devastating for me because I have held out so much hope that I would get that beautiful head of hair back that I so adored for 26 years of my life. My most favorite physical feature... second being my eyelashes, which I am losing as well. The hardest part about all of this has been accepting that there is nothing I can do about it, it is out of my control. My friends don't understand the whole idea of alopecia. They say "Well, just go back to the doctor." Well, I have been to numerous doctors and they all say the same thing.... "It's going to do what it wants. There is nothing you can do." I am helpless. They say, "Well, what causes it??" So many inexplicable notions. It's going to target who it wants, and you have no control. I am not trying to gain anything by posting this, I just know that I can write these words and I have people here who will understand. 

Views: 197

Comment by Rose Marie' on December 2, 2013 at 2:25pm

Yep...I certainly understand.  I think the worst thing for my daughter and I was the lack of control...obviously the hairloss was pretty horrid as well. 

It is frustrating when there isn't the knowledge out there from the general public about what this is and how it effects people.  But that is improving, with places like this and other organisations around the world.

Do your best to be proactive around your alopecia.  Find the things that make you feel good, whether that be a scarf....or a trip away.  Keep searching for your joy and don't ever give up on finding it.  

Take care

Rosy

Comment by wise1 on December 3, 2013 at 6:43pm
Understand we do. Hugs.
Comment by Sunflower25 on December 3, 2013 at 7:22pm

Indeed.

*hugs*

Comment by Kat on December 4, 2013 at 12:42am
I understand and i hate people who try to talk me out of my bitterness when im feeling it. They dont get it. When i was in hs, my best friend has cancer and i always told her the hair was not a big deal! Well, it is! It sucks if youre living inside this bs. I wrote to naaf recently to volunteer for medical research. That's right, im going to be a lab rat and i dont care! Im going to drove five hours to houston to one of the flagship facilities for experiments and try to help. Hopefull something will come of it, but at this point anything is better than believing steroids are going to help after nearly two years!
Comment by Kat on December 4, 2013 at 12:43am
*drive
Comment by Monica Zamora on December 6, 2013 at 3:34am

Just read your post. Hold on and keep coming back to Alopecia World. I too am going through some tough times and it so sucks! I hear alot of people say, "It's just hair", yes I know. I can't tell you I know exactly how you feel but because I'm a mom to an Alopecian, I hate it, I hate the stares, I hate the fear. I spend ALOT of time talking to the Lord and asking for strength and courage to continue to be the mom to ReRe (& my other girls) that I am suppose to be. Treat her the same and encourage her to face the world with the hair loss. It is just hair, right? Either way, I hate the shedding. God has answered my prayers in His ways because this kid rocks! She takes off to school like it's the best thing ever. She started at 2 and now is 9. We are seeing a new doctor and she's on DNCB. Sierra, don't ever lose hope, babe. NEVER. You be strong for yourself and don't allow fear to take your hapiness. You have ALOT to offer whether it be within your family, community, AW, or everywhere you go, you shine. Stay strong and it's o.k to grieve cause it so sucks. I'm here, baby girl. I'm going through some motions too.

Comment by Meekoo on December 7, 2013 at 4:08pm

Reading your post made me remember what I went through when I was first diagnosed, and I am truly sorry that you have to go through this, I hope that one day you will get you're hair back but in the mean time I hope you find the peace and hope that I seemed to find as I continued to live with this disease, wearing a wig helped me gain a little bit of confidence though I would always wonder if people were staring at my wig, after a while though I started using cute accessories with my wig and even changing styles of wigs every other day and if anyone asked me I just smiled and said I like to try out different hairstyles and I can't do that with my natural hair so I wear wigs, some people actually asked me where I bought my wigs and started buying and wearing them too! Anyways hang in there this disease is not something I would wish on anyone I feel you're pain, and if you're friends ask you about this disease tell them to google it, it might surprise them to actually find out that yes there is nothing you can do about it. And always remember this is not you're fault at all this monster targets anyone it wants!

Comment by Sierra D on December 18, 2013 at 12:19am

Thank you all for the kind words and support. I was having a particularly hard night- I'm sure you all understand. I have learned to deal with alopecia for the most part. Every now and then, I have a little meltdown. It's very hard for me to try and talk to friends and family who have no idea what I am going through, or what this is. It's also hard to see old pictures of me and see the hair that I once had and know that I will most likely never have that again. It really puts things in perspective as to how much I have taken for granted in my life. I agree that it is "just hair", and thank goodness it's nothing major. It is hard to remind myself of that sometimes when I can't make myself feel beautiful by playing with make up or putting curlers in my hair anymore. I used to really enjoy experimenting with different things, or going to the salon to get my hair washed and cut- and I can no longer do that. Everything about me has changed, inside and out. It is also very hard when I see regrowth not to hold hope that I could grow my hair back like it once was. I am just trying to find the message that God is sending to me through this experience and trying to figure out what exactly I am supposed to be learning by all this. Anyway, not to jabber too much- but I thank you all for being supportive :-)

Comment by Michelle B on December 18, 2013 at 11:01am

Sierra,  I am right there with you!  I was diagnosed 7 years ago and this last year had been the worst of it.  I lost almost all the hair on the right said of my head and now that it started growing back, I have hug stripe down the back of my head and the hair loss is now starting on the right side.  I have so much hair that shaving would be alot of maintenance, but I have so many bald spots that most any "style" is unsightly.  It's the process that is so difficult, seeing tons of hair come out each day, and also having hair growing back in giving some hope!  I have my meltdowns too and am in need of support, but don't personally know anyone with Alopecia.  Thus far, this site has provided some comfort, but I do get discouraged by those that think that shaving is the answer for everyone.  I get red bumps, etc during my loss, and would not be comfortable with shaving for this reason, but the process of growth and loss is difficult.  Hang in there, and know that you are not alone.  Reach out when you need to!

Comment by Sierra D on December 18, 2013 at 11:10am
Thank you Michelle. Shaving is a very hard choice to make. I struggled with the decision for a long time before I decided to do it. But I only had one strip of hair left at the time. You just can't push it, you have to be 120% ready!! Thank you for your support.

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