Tag: found

lost and found (or: the case of the amazing disappearing and reappearing hair).

welp, it’s with an immense amount of pleasure that i post an updated photo of my hair. last night, for the first time in over 15 months, i went out without a wig / hat / scarf / other random object covering my head. it felt pretty amazing (and a little scary) but mostly pretty amazing. it’s not a perfect head of hair, but it’s 100% mine and i’m not taking that for granted.

i wish i had a better idea of why my hair has decided to come back, but my hair refuses to tell me. i’ve been really good about taking the herbs my tcm doctor gave me (and using that damn sugar plum fairy hammer – name changed to protect its identity). i definitely think that could be part of it. i’ve also been using shampoo that a lovely woman in l.a. (who also has alopecia areata) kindly sent me, which might be helping too. but ultimately i think these results are simply due to the fact that auto-immune system disorders are fucking wack, have a mind of their own and are on their own path of destruction (and regeneration). there haven’t been any major changes to my diet, exercise or sleep habits. i think it’s just pure luck, and nature running its course. whatever it is, as long as my hair is growing, i’ll take it!

i do have some small-ish new spots, but nothing compared to the craziness of the photo from june of last year.

shout out to my amazing friends, family and strangers from the internet for making this whole sack of shit experience much easier and a lot less lonely. you’ve helped me regain my confidence, learn how to put on a wig like a pro, chill the fuck out and get over myself. this blog has been super helpful for me to track my progress, but it’s also been great as it’s allowed me to interact with people in situations similar to mine. strength in hairloss numbers!
the alopecia project.

the itchiest (and most successful?) alopecia areata treatment i’ve found: squaric acid dibutylester

in may, my dermatologist and i set out on a fun new alopecia areata adventure where we made my body allergic to a compound called squaric acid dibutylester (which from here forward i’ll just refer to as squaric acid because dibutylester is a ridiculous word to type more than once) by applying a concentrated solution of it to my arm. (see amazing bicep photo below). this photo does not do justice to how itchy this got. like, the itchiest itch i’ve ever itched. it took about a week for the reaction to peak and eventually the reaction had to be stopped with cortisone (yay, steroids!).

next step was a less concentrated formula that i applied to my bald spots once a week. on a scale of 1 to “the itchiest itch i’ve ever itched”, the formula that i apply on my scalp is probably a 6 or 7. the sensation lasts for about 36 hours, then it gets flaky, then at day 7 it looks like a “normal” bald spot again and it’s time to reapply. i’m so happy to say that it’s all worth it because typically after a few weeks of applying, i can start to see hair growth. (see amazing scalp photo below).

the idea behind squaric acid is that when applied to a bald spot, the allergic reaction earns the attention of your immune system as something to fight, rather than fighting with innocent hair follicles. i believe this treatment is also done with poison ivy, the downside being that poison ivy is a substance that you could run into in nature, whereas squaric acid is man-made and there’s very little risk of running into it on a hike and having an over the top allergic reaction. does that make sense? i’m not a doctor.

i’m still applying the squaric acid to my menagerie of bald spots every 7 days, and happily scratching away, eagerly waiting to meet my new hair sprouts.

yay, chemistry!
the alopecia project.