Hair today, gone tomorrow

How uncreative of a title, right? I guess in a way I'm still trying to find the fun and humor in my diagnosis. I had my scalp biopsied last Thursday and got my diagnosis a week later. Diagnosis: alopecia areata.

For people who don't know what this is let me try to explain what I've learned so far. It's an autoimmune disorder where your immune system attacks your hair follicles, making your hair fall out. They explain it like your hair follicles go dormant and just stop making hair. Typically people with alopecia areata will lose hair in circular spots all over their head. I have a diffuse form where I have lost hair from my entire head. If I had to guess I'd say in the past two years I've lost over 50% of the hair on my head. This disease does not mean I have a weak immune system. On the contrary it often signifies the immune system is great and so effective it starts to hurt itself. Strange isn't it?

The thing that is hard about this disease is that its different for everyone. The doctors can't tell me how much more hair I will lose or what treatments will work for me. They can't tell me if a treatment does work that my hair won't fall out again either immediately after treatment or years down the road. There have been people with alopecia areta that lose all of their hair over a 2 week period and their disease turns into a bigger form of alopecia (totalis or univeralis). It's scary to have unknowns like that.

My doctor wants me to make a follow up appointment (which I will do when the office is open Monday) and begin treatments. She wants to use a squaric acid treatment on my head which supposedly irritates the scalp and sends white blood cells to the surface, making your follicles come back to life and in the end making your hair grow again. The side effect of this treatment is a poison ivy type rash all over your head that will hurt and itch. It may also discolor the skin on my scalp. Sounds fun right? Even worse is the percent of regrowth for people that have had the significant hair loss that I have is only about 40-60%, with many people losing their hair once treatments stop. Also as a side note I think my eyebrows are thinning again. I looked at them yesterday and feel like they are a lot smaller and thinner. My eyelashes however seem to be the same. When my hair fell out heavily two years ago my eyelashes and eyebrows thinned a lot but grew back. Nothing I can do to prevent that though.

To be honest, when I read my biopsy results I broke down crying immediately. I went inside the house and locked myself in the bathroom so the kids would not see me cry. I mourned the loss of my hair and I searched for the strength in myself to help me deal with these facts. I kept asking why me. I kept thinking about the fact that I may never have my hair back or that it may continue to fall out despite treatments. I felt embarrassed for myself. I felt embarrassed for my boyfriend. I feel like the worlds eyes are on me and people are wondering what's wrong with me and wondering why my hair looks so bad. I know people are assholes. I can't control what others think. It just kills me that people may think bad things toward my boyfriend for his freaky balding girlfriend. Or think bad things toward my kids or toward my friends. *sigh*

I started using women's minoxidil at my dermatologists suggestion (while waiting for biopsy results). I told a few coworkers and a few snickered at knowing I was using "Rogaine". It made me feel painfully embarrassed. I'm already self conscious about the fact you can see my scalp through my hair, and now even more upset that it could get worse instead of better. It made me feel even more afraid to try treatments that will leave noticeable marks on my scalp (bumps, redness, flakes, etc) that I won't be able to hide without covering my head. I don't even know if my employer would let me use something like a navy blue chemo wrap to protect my scalp during treatments and help prevent me from feeling more embarrassed than I already do. I need to work up the courage to ask.

My only real complaint about the Rogaine treatment so far (aside from the dermatologist telling me the incorrect strength to get) is that its drying out my hair. It also makes my hair feel like its got gunk in it (similar to the way lots of hairspray would make it feel). I don't like it. Makes my already sad hair look sadder. I'm seriously thinking of cutting it off while I start treatments. No point in having sad little bits of long hair hanging from an irritated scalp. Not like seeing it makes me feel better. Sometimes I feel like if it were gone I'd have less time focusing on how sad it looks... I've been fighting the urge to shave my head all day. I've got nearly half an inch of blonde showing already. Blah, I keep crying. Talk about feeling crazy.

After doing more and more reading about alopecia I also spent money on a cheap wig to play around with at home. I don't know if I can ever bring myself to wear it out in public or to work. I struggle with that whole fake aspect and that people I work with or interact with will know its a wig. I even feel embarrassed about potentially wearing it. I feel embarrassed about my boyfriend having a girlfriend that has to wear a wig. I mean, what if it fell off? What activities would I have to refrain from with a wig on? To think of how embarrassing it would be to fall off during sex!?! In a small way I do like the idea of changing wigs like you change accessories. Be someone new every day. It's a neat idea, even if its one that I will struggle with.

The more I learn about the disease the more I keep feeling upset. 1 in 5 children born to a parent with alopecia will get the disease as well (from alopecia areata to full alopecia universalis). I may end up giving this to my children and they will have to feel all these things that I am. It's a horribly sad feeling...

This diagnosis is definitely a roller coaster of emotion for me. I can be fine one minute and sad the next. This is all normal I'm sure. It does make me feel a little unstable though.
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What I worry about most is that I DONT want people to feel sorry for me, or pity me, or wish thing different for me. This is just what it is for me. As Ginny said to me- its an opportunity to learn my body better and to get people to help me feel better as well. I can't make this disease go away but I can be as positive as possible about it. If anything this is an opportunity to become a stronger person. I am not my hair. I need to keep my head up and also show my children that people are different (some lose their hair) and that inside we are the same. That people that are different than them are just as awesome as them inside and out.

My hair may come or it may go (and maybe go all the way) but who I am inside will stay strong and stable. I may still cry and I may still mourn what I don't (and may never) have but that doesn't mean the disease is conquering me. It just means I'm learning to be better.

If anything this diagnosis just serves as an excellent excuse to start wearing more hats and beanies.