two years later (spoiler alert: still bald)

hi fam!

it's been a while. kinda because i was lazy and kinda because losing 99.25% of your hair can be a little jarring. since i last posted, i lost all of my hair. all. of. it. eyebrows. eyelashes. nose hair. leg hair (yay!). arm hair... basically every hair except for the hair on one toe and one knuckle. no joke.

the timeline of my hair loss looked like this:
november: a few big bald spots
december: a lot more big bald spots
january: started wearing a wig
february: eyebrows started to go
march: eyelashes started to go
april: eyebrows gone
june: eyelashes gone

it was a solid year with absolutely no regrowth (other than the 8 week stint on an immunosuppressant - but that's another blog post). i've got some tiny patches coming back on my head, a bunch of eyebrow hairs and a few eyelashes. not enough to really toot my horn about, but enough to make me feel good that at least my body can still produce hair. baby steps, am i right?

what's changed? who heckin' knows. i might have slightly less stress. but i still eat my weight in sugar everyday (and love it). i exercise sometimes. no special vitamins or spiked hammers. just livin' my best life and trying to not sweat the bald stuff.

when i saw my doctor / dermatologist, they confirmed that because i'd lost all of my hair (lashes and all) i now have alopecia universalis (i used to have alopecia areata). my doctor also mentioned that going from one type of alopecia to another is basically unheard of.

so, here we are! still on this fun adventure of hair lost (and found). hopefully my menagerie of hair sprouts continue to grow and bring some friends with them!

hair today, gone tomorrow (OMG how have I not used that title before).

This year, my hair went on an exciting journey... down my bathtub drain / into my garbage can. I lost almost all the hair on my head in a 6 week period. In my 18 years of bald spots, I've never experienced anything like it. I'd wash my hair and it would come out in chunks. I could've made a sweater from all of my hair that had gathered on my sweaters.

I finally decided to shave it a couple of weeks ago. It was a tough decision, but I (almost) immediately felt better about how I looked. And apparently I've got a great shaped noggin. Let me show you.

It's weird (and kind of amazing) having a shaved head. Washing my scalp is a breeze! And styling my hairs is an absolute dream. AND (perhaps most importantly) no more hairballs in my bathtub. See! There's (almost always) always a bright side.

goodbye, 2016. and a lot of my hair.

whenever someone asks me if alopecia is caused by stress, i usually roll my eyes (super dramatically) and say that's what doctors tell me, but i don't believe it's true. i'm not sure why i'm so adverse to the idea of it being caused by stress. i guess because admitting that implies that i'm not good at dealing with stress, which apparently is the case. in 2016 i ended a long relationship, changed jobs and my sweet ma was diagnosed with cancer (don't worry, she's kicking butt. hi, ma!). it was a bit of a doozy year for me (calm down, it was full of great stuff too). i never felt overly stressed, but those that believe alopecia is caused by stress, would look at my hair and say otherwise.

i was lucky enough (or stress-free enough) to have a pretty full head of hair for the last couple of years. i am lucky enough to still have my health, family, good friends, a roof over my head, all appropriate appendages... but approximately one ton of my hair has fallen out over the last six months. i worked hard to keep my bald spots covered with headbands and sassy combovers, but i gave in and started wearing a wig to work this past week. for whatever reason (likely the same thing that keeps me from admitting alopecia is caused by stress) i really struggled with deciding to wear a wig again. i guess another "stressful" item i should add to my 2016 list is losing one ton of my hair.

if i believed in new years resolutions, i'd make"not giving a fuck about hair loss / alopecia" mine. but since i don't believe in resolutions (and still don't quite believe alopecia is caused by stress) i'll just have to make not caring about hair loss a goal of mine.

if you're here because you know me / love me (and my bald spots), happy new year and i love you too!

if you're here because you've got alopecia / hair loss, here's to the hair we do / don't have and knowing that it's not a measure of how awesome we are and how much we have to be thankful for.

now get out there and make 2017 a good one!

xo

for fun, here's a photo of my scalp and remaining hairs. i call this hair loss pattern the skullet OR the great lakes if you squint. enjoy!

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!

a story about the time that a hair product changed my life.

friends and strangers, gather 'round for a sweet little story about a girl with alopecia areata who wanted to confidently go out into the world, without wearing a wig. the story has pictures, calm down.

i'm a pro at rocking the female combover, unfortunately for me, one of my bald spots has gotten large enough that my female combover is coming up short. enter life changing product, sure thik. it's an easy to use, lightweight powder that's available in a bunch of shades (mine's medium brown, thanks for asking). here's how i use it: i sprinkle the powder over any bald-ish areas, gently pat it down, re-position my combover, give it a spritz of hairspray to hold it in place and voila! (see photo for voila moment).

there are similar products on the market, but i specifically chose this for a few reasons:
1. the ingredients are natural. there was nothing crazy sounding that i couldn't pronounce.
2. my dermatologist gave it a big ol' dermatologist's thumbs up.
3. it's canadian (yay canada!). this point won't matter to you if you aren't canadian. it might not even matter to you if you are canadian.

i'd highly recommend this to anyone looking to cover thinning / balding areas. i live in canada where it's currently winter and sure thik definitely holds up against the frigid, snowy, windy elements. it's made it so much easier for me to go out with confidence (and without a wig). it's $30 for a bottle that lasts me for a couple of months. not a bad price to feel good about yourself.

where the white hair ends.

welp, over a year ago when my bald spots started filling in with the whitest white hair i've ever seen in my life, 2% of me was disappointed, the rest of me was just happy to have hair that wanted to exist on my head (yay hair!). as the months went on and more of my hair started growing, i realized i had less white hair... was it that i had more dark hair growing in and it made the white hair less noticeable, or was it that the white hair started growing in brown? nobody knew. not that i asked many people. UNTIL ONE DAY i found this single hair, holding on for dear life to the tile in my shower.

(note: it's hard to take a photo of a single strand of hair. just ask my cousin whom i forced to help me.)

the darker portion is the root end. magic! science! hair! there's that mystery solved.

for the most part, my bald spots do start filling in with white hair, and eventually their darker pigmented friends join the hair growth party. i've got a few chunks of white hair that i actually think look kind of awesome. my hair dresser wanted to colour them, but my TCM doctor insists that my hair couldn't take it. so here i am, wig-free (yay!) with a few bald spots (no biggie) and some streaks of the whitest white hair, that make me look a few years older, but that's cool. i honestly don't mind.

thanks, hair! i'm happy to have you back.

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!

splitting hairs.

alright people, it's the moment most of you haven't been waiting for. see attached photo for how much ass my hair is kicking. i do not care what colour it is. i do not care what texture it is. all i care is that it is my hair growing out of my scalp and it's almost passable as a head of hair.

what have i done to earn / achieve this glorious hair? i'm not sure. this might sound horribly cynical, but i don't think i can attribute it to anything i've done. i think this is just time passing and an icky disorder running its course.

i'm torn as to whether or not i should attach the less celebratory photos of how much hair i've lost on the right side of my head. i think for today, i'll leave it at this positive post of recovery.

3 cheers for hair!

baby steps (and baby hairs).

i am the proud owner of a lot of new hair sprouts (and a few new bald spots - but let's not focus on those). my hair is coming in white. not blonde. not grey. white. although there's also some darker hair coming in. i hate to sound desperate, but i'll take any hair i get. check out this photo of my hair in april, june and then yesterday. i think i'm finally making progress in the right (and less bald) direction.

here's a list of what i'm doin' that may (or may not) be helping:

TCM:
i'm still seeing my doctor in traditional chinese medicine. i think he's amazing. every time i see him, he does accupuncture, as well as giving me chinese herbs to take twice a day. if you're in or near toronto, i'd highly recommend him. email me if you want his deets. 

supplements:

• silicea, 1 tbsp / day
• iron, 2 / day (thorne, ferrasorb - this is the greatest iron supplement i've ever taken. evar.)
• vitamin c, 2 / day (natural factors, 1000mg)
• biotin, 1 / day (natural factors, biotin)
• vitamin d, 4 drops / day (genestra, d-mulsion)
• magnesium, 3 before bed (canprev, magnesium bis-glycinate)

shampoo / conditioner:

• giovanni, tea tree triple treat shampoo
• kiss my face, whenever conditioner (i put this on my scalp, but use an intense conditioner for my ends)

and i'm still applying this cream to my spots:
homemade vitamin d anti-inflammatory cream:
 combine:
- d-mulsion (genestra) 30ml
http://www.rockwellnutrition.com/D-Mulsion-1000-Liquid-Emulsified-Vitamin-D-by-Genestra.html
- cosmaderm (aor) 30g
http://www.aor.ca/html/products.php?id=47
- aloe vera cream (ferlow botanicals) 60ml
http://www.ferlowbotanicals.com/50.177.0.0.1.0.phtml?hashID=38mu54pdtnhkbn297nfs6310p2

mix products and store in an airtight container. apply 2x / day.

most importantly: stay positive. (written by someone who sometimes sorta excels at it, and sometimes definitely doesn't).

typical male reaction to a conversation about alopecia areata.

me: "i'm actually wearing a wig. i've got an auto-immune system disorder called alopecia areata, which basically means i've got patches of bald spots on my head."

dude: "does your alopecia affect anywhere else on your body?" (while not so subtly staring at crotch).


end scene.

crop circles on my head.

people get so excited about crop circles when they appear in crops.
people get a lot less excited when they appear in someone's hair.

i think my scalp circles look kinda neat. not neat enough that i'd walk around with them confidently on display, but neat enough that i suppose this could be considered acceptance.

tomorrow i see someone in traditional chinese medicine.
i wonder what kind of horrible things they'll tell me to drink.
post to follow!

the state of the nation (on the top of my head).

sadly for me (and my hair follicles) my scalp is still rejecting my hair at a feverish rate. i'm continuing with all my vitamins + minerals, and applying the anti-inflammatory cream every night (ish). the cream definitely seems to help the hair grow back faster. click here for the "recipe" for the cream.

in other news, i bought a wig this week. bye bye, combover! i went with human hair (it's the hair of four different women, somewhere in europe - thanks ladies!). it'll be nice to be able to go out with my hair down, sans combover and sans headband... even if it's not my own hair. it still needs to be cut, but will be ready in a week. i went to a couple different wig shops, but ended up buying one from gabi's wigs. gabi is amazing (and so is my friend who came with me and watched me try on dozens of wigs and cry a little bit). i got a wig that's pretty close to my natural hair colour, and a smidge longer than my current length. it will be the healthiest head of hair i've ever had. maybe it will inspire my hair to do some growing.

good news / bad news.

good news! a lot of my bald spots are regrowing (and most of them are growing in brown, not white!).

bad news! the parts without hair are increasing, and it's falling out in freaky deaky chunks, which is pretty freaky deaky. 

good news! i'm almost at the re-introduction portion of the elimination / anti-inflammatory diet. which is great, because i really miss cheese, gin and red meat. and i'm hungry. all. the. time. 

the diet itself will be over in a few weeks, which works out perfectly with a trip i just booked to hawaii, which works out perfectly with my latest treatment decision. as soon as this diet's over, i'm going to spend more time focusing on taking care of myself, eating well and being as awesome as i can be everyday... and spend less time focusing on my alopecia. applying cream to my bald spots twice a day might be helping my hair regrow, but on an emotional level, i don't think it's doing me any favours. i get to see progress (which is great) but it also forces me to see more hair loss, and that aspect of it is disturbing for me. i'm definitely not at the point where i need a wig, but it's continually getting tougher to keep all of the spots covered on the top of my head. on the suggestion of a friend i've bought a bunch of silk scarves to wear as headbands. constantly fussing with my hair to keep my combover where it should be, is (not surprisingly) also not great for my ego.

anyway, it could be worse. at least i'm surrounded by great family and friends who don't give a shart how much hair i do or don't have. 

meet the bald spots.

in honour of sunday, here's a series of photos of where my bald spots are at. allow me to introduce you to them. 

on the left, we've got the two spots i've had for over a year. they're starting to grow in thin and white. in the middle, we've got a series of spots that have been forming over the course of the last few months. the one closest to my forehead (that's growing in white) started first, then the one to the left of it started, then the one closest to the back of my head, and that little canal joining the front and back one just happened over the past couple of weeks. i can also see the front one is spreading to the left. these spots are definitely the most worrisome for me, and toughest to cover. it seems as though they're starting to sprout new hair, but it's quite fine and some of it is white. on the right, the larger spot is a couple of months old, and is growing in white. the spot above it is new. 

i have other tiny spots around my head, but as of right now they're nothing of consequence. 

i should also note that i haven't coloured my hair in almost 4 years. the brown is my natural colour, and the white regrowth is my new natural colour. it will be interesting to see if they all grow in white, and if they grow in thick, or if my hair is just going to be thinner now. i actually don't mind the white hair. it's definitely better than no hair.

to be honest, it kind of hurts my heart to look at these photos and see how much worse it's gotten over the past year, but it also makes me thankful for how well i'm able to keep things covered. 

a macro photo of hair sprouts.

admittedly, this photo is kind of gross. it's a little less gross for me since it's my own head and it means my hair is making a triumphant return. if it makes you gag, sorry. but i tried to warn you.

earlier today i had decided to go off the blood cleanse tea. i've been taking it for almost a month, which is a long time to gag on tea twice a day. but maybe it's working. or maybe my immune system is finally chilling out a bit. either way, i'll take it! welcome aboard, tiny hairs.

a theory (one of many).

as everyone knows, the internet doesn't lie. recently, my bald spots have started growing in white. i found an article online, boldly stating that alopecia doesn't attack white hair. obviously my hair outsmarted alopecia and has begun growing in white as a form of self defense. it's just a theory, and i might not be the internet, but i'm pretty sure i'm right. maybe.

can you spot the difference?

the image on the left is about as normal as i can get my hair to look - which is pretty good - especially when you compare it with what happens if i flip my combover / side part to the other side. 

note: the white hairs growing out of the middle of the front bald spot. not sure if you can really see them. anyway, i've got a theory, and it involves those white hairs. i also have a theory about how the light turns off in the fridge, but i'll save that for a different blog.