GO GREY

I decided to keep the title even though it doesn't make sense anymore.  This is the problem with me blogging the way that I do.  I'm too fixated on making it like an essay that when it sounds more like a mash up I never post it.  I like my writing to be linear but lately its just a mess.  So heres my current mess.

My brother called me multiple times this week.  I finally called him back because I knew he wouldn't stop until we spoke.  He just wanted someone to talk to.  It's sad really.  He lives on the east coast and is basically a stranger to me.  Our own mother "doesn't have time" for him.  No one told him our grandmother died.  No one told him about my mothers suicide attempt, or at her 51/50 status (however brief it was).  I made the conscious decision to leave my family and stop caring about a lot of the bs, and while I think my brother doesn't acknowledge his part in this, I still find it sad that he didn't know whats been going on.  Anyhow, I updated him and basically gave a lot of "uh huh" and "yeah" responses.  It ended fine.  I'm not getting involved in his life, I'm continuing to keep him at arms distance from myself and my family.  But I don't mind the occasional basic and dry conversation, rehashing bullshit about my mom, or filling him in on details he may have missed.

The one thing my brother and I did agree on is how much we miss our father.  No matter what was going in my dads life he ALWAYS made time for us.  He'd stop whatever he was doing to talk to someone who needed him.  I miss that.  I only wish I could be half the person he was in that regard.

And of course I'm going to talk about my hair.  It seems to be the center of my universe these days.  My stance and feelings are ever evolving and ever changing.  Over the past few weeks I've felt "sticky" spots on my head.  They felt soft and hairless, so I figured they were bald spots.  I was right. Yesterday I photographed the few spots I was feeling and they are indeed hairless.  They are small but they are growing, as well as the fact that I'm getting more and more of them around my head.  Along with this my scalp is breaking out horribly and I cant figure out why.  My only guess is that I worked out multiple times last week while wearing a bandana and that my head sweat a lot.  Regardless of why its breaking out all I know is that I want it to stop.  Its so gross.  It hurts.  Its embarrassing.  Its definitely stopping me from shaving my head, let alone cutting it at all, because they are more visible the shorter my hair is.  I'm trying to put the medication the doctor gave me on the spots but I have hair (though it is thin) and it gets in the way. Stupid stupid stupid.

I keep debating doing the squaric acid treatments.  I worry that I will be unhappy from NOT trying everything.  Yes I am well aware of the fact that this is an autoimmune disease with NO CURE and that while my hair may grow back, it also may fall out again.  I don't know whether its worse to try and fail or try and lose it again.  There is always the chance I will try and succeed.  Who knows.  I keep asking my friends what they would do.  People keep telling me to just shave my head and move on.  However, these people are not losing their hair.  They will not be the ones with bald heads.  They will not be the ones getting looked at and having people wonder if they are sick or why on earth this woman would shave her head.  I know everyone means well and god do I appreciate the support.  *sigh*  I sure hope people understand what I'm trying to say.

And because I'm being honest I'm just going to say it - I took a break from writing this and showered.  My shedding was really bad.  I spent 45 minutes in the shower bawling my eyes out.  I am so angry.  Before showering I was looking in the mirror (as I usually am) and saw that my hairline is receding badly.  I also have a few newer bald spots I had not seen.  Plus while in the shower I could really feel how little hair I have on my head while its wet.  I suppose you can call this a weak moment for me.  A break down of sorts.  I don't know what to call it.  I wasn't even planning on telling anyone that it happened.  I feel like all I am is a sad person and I hate telling people about my sad moments.  So I cried alone, and worked through my feelings, and now I have a headache but at least the tears stopped.  I'm trying to stop bottling up everything inside.  I'm trying to listen when people say that they WANT to let me talk to them.  Its new to me so it's still a big challenge.

All I know is that I am tired of this.  I'm tired of hating myself.  I'm tired of feeling ugly.  I'm tired of all the worry.  I'm tired of all the fears I have.  I'm tired of wanting things I cannot have.  I'm tired of the emotional roller-coaster I feel I'm on.  Basically I'm just tired.

I'm hoping that maybe buying a hat I feel comfortable in will help.  I'm already wanting to cover my head constantly from people.  Looking at the photographs I took made me feel beyond self conscious.  My hair is even thinner than I wanted to admit to myself.  Even though I hate hats I'm hoping something good will come from it.  I don't plan on wearing the wigs soon, despite the positive feedback I've received.  They just don't feel like ME.  I suppose I don't really know what DOES feel like me right now.  I guess I'm still trying to figure that out.

Moments

There are days like today that can feel fine despite the odds. I can wake up tired but functioning. I can smile. I can interact with others like a normal human being. And then in a moment I can feel sad inside and wish that things were not the way they were with me. I think I've taken my hair loss in stride for the most part. Sure I get mad and I get upset but I feel like I'm doing okay. But there are moments, like today listening to two coworkers discuss what to do with their gorgeous hair that something inside of me snaps. It breaks. I think at times that it's my heart. Maybe my spirit. Maybe both. I smile and I laugh and I provide them with my opinion and suggestions. Inside I'm turning to goo. I want to cry but I fight it. What good would tears do me right now?

Goodbye treatments?!??!

Guess what? I'm talking about my hair again. I feel comfort in knowing I'm not the only alopecian that has moments where their world revolves around their hair loss.

I looked in the mirror yesterday evening and discovered that I now have bald patches. Up till this point I just had seriously thinning hair, but now have spots (a few nearly dime sized) that are shiny and completely hair free. It was a shock to me and I didn't take it very well to say the least. I sat in the shower and cried and cried. I felt defeated. And that's when I decided to stop treatments.

I know that probably sounds a little strange. Here's my reasoning: the past few weeks I have felt increasingly awful. From bouts of severe nausea to episodes of dizziness. The only new thing in my life are the treatments. I'm having to use excess amounts of the topical stuff because my hairloss is so severe. Chances of systemic side effects are greater. And given that even if I did have hair grow back, it will fall out if I stop the treatments. I don't want to be dumping chemicals on my head for the rest of my life. I want to be beautiful and happy and healthy. I don't want to put toxic things on my head to MAYBE get results. It just is not worth it to me.

I'm closer to making the decision of buzzing my head. I hate myself right now because of how bad my hair looks, I can't hate myself any more once its gone. If anything I hope it helps me live a free life. I won't have to see the hair all over my pillow and all over my bathroom floor. I will no longer see the handfuls in the shower. It will be relief. Sweet sweet relief. My friend even said he would shave his head too. I have the best friends ever.

I still find myself having moments in the middle of a good day where I feel really crappy. Where I look in the mirror and hate what I see. It can turn a good moment upside down. I find it hard to move past these moments but I keep trying. I try to live on the faith and trust that I have in my relationship with my boyfriend and with my family. Faith that I will be loved and found to be beautiful regardless of what's happening. I need to focus on the trust that I will not be left alone. It's a challenge, but I accept it and I work on it daily.

So thank you to everyone who has listened to my bitching. To those who have received text after text about my hairloss, bald spots, depression- I love you so. This journey is far from over, but its because of all of you that I have gotten this far.