Panic at the Niko

I am having anxiety attacks these days. I wrote a whole blog about it but my text program on my ipad took a crap and killed it. So today I start over (somewhat) and add on some new bits and pieces.

So yeah, anxiety. As I write this I'm coming down from what would have been a big anxiety attack. Thank god for medication. Between puppy sitting and having a rambunctious child, sometimes its hard to break away when anxiety strikes. After much thinking on the possible causes, I think the anxiety is a combination of two things- one being my job, two being my hair. The job thing I'm sure ill elaborate more on later. The second, the hair, is what caused my anxiety today.

I have officially started treatment for the alopecia. I am using three topical treatments on my head, all together. One is an antibiotic, one is a steroid, and the last is the Rogaine. Today was my first day using the steroid. It will be used twice daily for two weeks, a two week break, and then resume 2 on and 2 off for a total of three months. The side effects are burning, acne, and thinning skin. Also because it is a potent corticosteroid there is a chance of it being absorbed systemically, which is part of why I am to take two week breaks. Anyhow, I put it on my hair and the result was horrid. Not only did it burn (and now itch like crazy) but its in an oil type suspension. I look like I just rubbed a handful of oil through my very thin hair. I'll tell you, there's no way I will be going out in public looking like this.

The more I looked at my hair the more upset I became. The Rogaine was already making my hair feel straw like and now it looks like I haven't washed it in days. It just makes me feel so ugly that I can't help but cry. That sounds ridiculously vain and kind of stupid as I read it back, but its honest. I put a scarf on my head and then felt even worse. I don't know how to get through this without crushing what little self esteem I have. Bleh.

I keep thinking about the wigs I ordered. I've had a few people make negative comments about how long one of them is. I know people talk and not everyone will understand or be supportive. I am trying my best to just look at the wig thing positively, as many of my friends have said.

This is just so damn hard to go through. I can't even make my words help people understand. It's devastating. I feel so incredibly sad. I'm constantly looking for distractions and things to make me smile. I'm struggling to get through basic days. I feel weak because all of my life, no matter what was happening to me I was able to pull my shit together and not get stuck in depression. I never had anxiety attacks, even after my dads suicide. But here I am with my hair falling out and its like all of my coping mechanisms are broken. What happened to the strong person inside of me?

I Know people feel weak sometimes. I know that everything I'm feeling has been felt before. Today is just a day where I struggle to remind myself that it gets better. I'm lucky- I have a wonderful support system of best friends, new family, and my wonderful children. I'm going to get through this BECAUSE of them and FOR them. I'm having a rough time right now but soon I'll be better. I know this in my heart because I recognize it, acknowledge it, and take steps to make it better.

On a random yet related side note: I've gone gluten free starting today. For the first time in a long time my stomach hasn't hurt AT ALL today. I know there will be a learning curve here but I'm already happy to have one good gut day.

So that's all for now. I'm gonna go snuggle the puppy. Thanks friends for reading.

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.