taking the treat out of treatment. my new alopecia areata treatment plan.

my wonderful naturopath (seriously, she's amazing) has suggested i try many not so wonderful things since since she started treating my alopecia last year. examples of not so wonderful things include: rubbing onion juice on my head, applying an oil concoction to my head every night for 3 months, drinking horrible tinctures, not eating sugar, and so on. when she suggested i try an anti-inflammatory diet that involved cutting out awesome things like; gluten, dairy, soy, eggs and sugar, my initial response was no. i really like sugar. when she said it would only be for 3 weeks, it seemed bearable.

here's the new plan; i'm keeping up with all the stuff listed in this blog post here,
http://thealopeciaproject.blogspot.ca/2013/01/taking-stand-for-my-strands-my-current.html
and as of friday, for the next three weeks i'm officially gluten, dairy, soy, egg and sugar free. i can eat lots of veggies, chicken and limited fruit. i also have to continue drinking the blood cleanse tea that was made for me by my 300 year old herbalist. i describe the tea in the link above as well. my naturopath also recommended applying an anti-inflammatory cream twice a day instead of cortisone. deets listed below.

i know people eat healthy everyday. good for them! i'm not one of those people. i eat relatively healthy, but i definitely eat gluten + dairy + soy + eggs + sugar pretty much daily. it'll be tough, and will mean missing out on goodies at a baby shower, a couple of concerts, a work event and a retirement party, but hopefully it'll be worth it. i've spent the last couple of days trying to get myself and my fridge ready for it. i've also eaten a bit more candy than usual, just in case it doesn't taste as good in 3 weeks when the diet is over.

--

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.
--

i'll keep y'all posted on how it goes.

things worse than alopecia. part 2.

sometimes my bald spots get me down, for those days i've got lists about why life is awesome and what makes me lucky. i don't actually want to post those lists online, so here's a slightly over the top internet version. if your alopecia areata (or other unrelated problem) is getting you down, feel better, because things could be worse. and if you have one of the conditions below, i am truly sorry.

for your reading enjoyment (hopefully) here is part 2 in an ongoing series of things worse than alopecia areata.

• epidermodysplasia verruciformis. sure there's a poem about how lovely trees are, but it would probably suck to turn into a tree.
• living in an iron lung. unless mtv started a series called "pimp my iron lung" in which case, it could be cool. 
• pica disorder. if you have pica disorder, you'd eat dirt, because you want to. which i suppose is better than eating dirt and not wanting to. 

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. 

hypnotizing the alopecia out of me.

according to the internet, there has been some success in treating alopecia areata with hypnotherapy. the general consensus seems to be that alopecia areata is caused by stress / anxiety / depression. i don't necessarily believe this to be true, but since i'm trying almost any solution i can find online / in real life, i figured i'd give it a shot.

i had my first session a few days ago. it was interesting, and definitely not what i expected. mentally, i was much more alert than i thought i'd be. physically, i was pretty relaxed and would've loved to have taken a nap. the appointment started with my hypnotherapist helping me write statements that she would say to me when i was hypnotized. they were mostly about:

• acceptance (of alopecia areata, and whatever hair loss happens as a result of it).
• embracing the future and unknown (worrying less).
• feeling positive (about myself and the world around me).
• encouraging good health and hair growth. 

i got myself comfy in the chair and she began talking about how relaxed i was getting, and then there was lots of counting down to how much more relaxed i would get. she read the positive statements to me, and repeated them twice and then she counted me out of hypnosis. that entire process took about 15 minutes. i recorded the whole thing on my phone so i could listen to it at night before bed. when i left the appointment, i felt amazing, positive and euphoric. like, tipping my hat at various strangers kind of good. my next appointment is in a week. apparently that session will be a deeper, more intense hypnosis. i'll post an update after that.

i just did a took a brief survey of two (myself and my friend) and we both agree that i'm typically a happy, upbeat and positive person. i don't really get stressed, and am definitely not depressed. that being said, i am a bit of a worrier, which i'm trying to get in control. over the last 13 years of having alopecia areata, this is by far the worst it's ever been, but it's definitely not the most stressed i've ever been, which is why i have a hard time believing the two are related. i'm still hopeful that hypnotherapy might work for me. and event if it doesn't, that feeling of euphoria i get afterwards, is pretty great.

coping and not coping.

late last week i was in panic mode about my hair, lack of hair and possible worst case scenarios (ie., what happens if i lose all my hair, everyone disowns me and the sky falls down). i was pretty upset. i let myself wallow in it for a day, then i slept it off and woke up the next morning ready to kick some alopecia butt. i think sometimes it's important to hit a low-low, really feel it and then use that negative energy to motivate yourself into something positive.

IF all my hair fell out, i'd buy 1 (or 12) kick arse wigs. i'd never have a bad hair day again.

IF my hair continues to fall out in the patchy way it has been and i'm no longer able to use my hair as a donald trump inspired comb over, i'd buy some hats and scarves and rock that look. i've also been researching partial wigs, and a hair thickening powder that's used in the film industry. i haven't tried it yet, but i've heard and read good things. here's a link if you're curious. http://www.surethik.com/

some days are easier than others, and i find it's the fear of the unknown that's scarier than anything. i used to get so upset when i found 1 bald spot. now that i've got 9 and counting, i'm trying to freak out less, and do a better job of appreciating the hair i've got, while i've got it. at the risk of sounding silly, i'm trying to look at this as an adventure. each day brings something new, whether it's a new bald spot, or new hair growth, or a new friend in a similar situation. i think there's a bigger lesson on acceptance and coping that's happening here. i might come out of this without any hair, but at least i'll have learned a lot about dealing with the unexpected.

tomorrow's adventure: hypnotherapy!

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.

2 lesser known alopecia solutions that totally didn't work for me, but totally might work for you.

1. don't eat raw eggs.
biotin deficiency can cause alopecia (and brittle hair). raw eggs (specifically the whites) bind to biotin and deplete the body of it. for the record, i never sat around eating raw eggs. however, i did sit around eating cookie dough and cake batter. did i mention that i enjoy baking and like sugar? i used to take a biotin supplement by natural factors - http://naturalfactors.com/caen/products/detail/2828/biotin

2. onion juice will put hair on your head. maybe.
the internet (and real life) are full of people that insist putting onion juice on your pesky bald spots can help hair regrow. i've tried this, and yes it made my hair grow back, but my hair (so far) has always grown back. did it make it grow back faster? maybe. just try it. so you'll smell like a salad bar for a while. you could smell like worse things.

the wisdom to know the difference.

i'm not religious, and i'm not an alcoholic, but i think the serenity prayer is a sweet way to keep shit in check. i think this is pretty sweet, and alopecia appropriate, too:

for every ailment under the sun

there is a remedy, or there is none;

if there be one, try to find it;

if there be none, never mind it.

-  w.w. bartley

since my diagnosis 13 years ago, i've seen 5 doctors, 2 specialists (dermatologists) 2 naturopaths, 1 homeopath and 1 herbalist. so far, none of them have been able to cure my alopecia areata. i haven't exhausted every option yet, but at a certain point, i think i'll just have to accept that this is the way it is and find comfort in the fact that i don't have all my hair, but i have my health (which is already a pretty comforting thought). anyway, i think this poem hits the mark.

taking a stand for my strands. my current alopecia areata treatment regime.

since my alopecia areata has gotten worse over the course of the last year, i've tried to be pro-active about treating and seeking alternate solutions. sure, none of them have really worked so far, but at least if i lose all my hair, i'll know it didn't happen for a lack of trying to keep it. or maybe, hopefully, something will help.

shampoo:
i try to stick with natural shampoos. i alternate between:
- ferlow botanicals, neem shampoo
http://www.ferlowbotanicals.com/12.48.0.0.1.0.phtml
and:
- giovanni, tea tree triple treat shampoo
http://www.makeupalley.com/product/showreview.asp/itemid=17629

.........................

vitamins + minerals:
- iron, thorne, ferrasorb (1 cap, 2x/day)
http://www.thorne.com/
*this iron supplement is great. i had a hard time getting my iron levels up. this did the trick.

i always take my iron with
- natural factors, vitamin c (1 cap, 2x/day)
http://naturalfactors.com/caen/products/detail/2838/vitamin-c

- vitamin d, genestra, d-mulsion (2 drops in the am)
http://www.rockwellnutrition.com/D-Mulsion-1000-Liquid-Emulsified-Vitamin-D-by-Genestra.html

- biotin, natural factors (1 cap, 1x/day)
http://naturalfactors.com/caen/products/detail/2828/biotin

- fish oil, ascenta, omega-3 (4 caps, 1x/day)
http://www.ascentahealth.com/products

- magnesium (helps you sleep and poop), rx balance, magnesium bisglycinate (3 caps @ bedtime)
http://rxbalance.com/products.html

 .........................

blood, liver + kidney cleanse tea: from the herbalist / 300 year old witch doctor

contains:
blood root powder
golden seal root
blessed thistle
parsley

1/4 tsp in 1/2 cup water on an empty stomach. 2x/day. disgusting.

i've been drinking this since december 17, 2012. i'm supposed to drink it until it's gone, which will be months and months from now. i'll probably give myself another month on it and then send it down the toilet. the same way that it's sent my food down the toilet more than once.

*there is no link for this because this remedy is older than time. and time is pretty old. 
**when the 300 year old witch doctor gave me the tea, i asked if i could still drink (i don't drink super often, but i've been known to put back some jagermeister). her response was, "drink? do you mean table wine?" cute. i didn't tell her about my flask.

 .........................

topical:
cortisone applied to affected areas 2x/day. 

 .........................

food stuffs:
i love eating! especially sugar and popcorn. and cheese.

i try to eat lots of protein, fruits and veggies everyday.
in reality, i eat lots of protein, candy, fruit and some veggies. i also drink a ton of water, and rarely have caffeine. i'm naturally annoyingly hyper.

 .........................

other things:
i try to be positive and focus on stuff other than alopecia (which is in complete contradiction with having a blog about alopecia and constantly seeking various treatment options). when i'm not blogging / taking photos of my bald spots / seeing my naturopath, i am volunteering / out with friends / watching tv / at work talking about tv (i work in broadcasting, so this is ok) / indoor rock climbing / biking / baking (and trying to not eat cookie dough) / watching animal videos / designing things...

i also try to keep things in perspective and focus on what i do have instead of what i don't.

things worse than alopecia. part 1.

alopecia is no walk in the park, but it's also not the worst thing out there. as an ongoing mini-project on being positive / not wallowing in hairloss, here's a short list of things that are worse than alopecia.

• cancer. this is self explanatory. not only do cancer patients also (sometimes) lose their hair, but they've also got cancer. CANCER.
• aquagenic urticaria. if crying could kill me, i'd be very sad. 
• not having any fingers. if i didn't have any fingers, it would be really tough to constantly poke at my bald spots. it would also be hard to use forks. and almost impossible to use chopsticks. 
• human werewolf syndrome. it's like alopecia but the opposite. and probably way worse. 

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. 

the evolution of a bald spot.

this is the story of a girl and her hair follicles. if you pay close attention, and are very smart at maths, you'll even figure out how old she is.

13 years ago, when i was 19, i was diagnosed with alopecia areata. my hairdresser actually gave me the initial diagnosis after cutting off all my hair, in a move inspired by keri russell on felicity. unfortunately for me, i don't look like keri russell and the haircut wasn't super flattering. fortunately for me, i didn't have my own tv show and as a result, didn't have to deal with the wrath of fans who hated my new haircut. also, fortunately for me, my hair was just long enough to cover my bald spot. i saw my doctor who confirmed my hairdresser's diagnosis. he gave me topical cortisone and said it would likely grow back in a few months.

since then, i've gotten (at least) a couple of new bald spots each year. they always grow back within months and only proved to be mildly disturbing. although me being the skilled worrier that i am, on a few instances i sought out treatment that was slightly more radical than boring old topical steroids. one time i tried going on anti-depressants to see if it would help me cope with stress. it didn't reduce stress, but it did make me feel like a robot. then i tried cortisone injections. i was warned the series of 3 injections required could result in a dented scalp. i ended up with a dented scalp after the first injection, and i still had a bald spot.

a couple of years ago i ended up getting a bald spot at the front of my head that was a bit of a kick in the pants for me. if i can't see my bald spots, they don't bother me. as soon as a bald spot is staring back at me in the mirror, i kinda lose my shit. so i started seeing a naturopath. turns out i was low iron (but not low enough that i couldn't donate blood - sorry to anyone that might have become anemic from my blood transfusions). she suggested i rub onion juice on any bald spots twice a day. not surprisingly, the onion juice smelled a lot like onions and simmered nicely in the summer heat and under my bike helmet. i didn't notice astounding results, but i have read that onion juice does help hair regrow. i don't know why it would. i'm not a scientist. i also switched to using a natural, tea tree oil shampoo.

about a year ago, i developed two, really large bald spots at the base of my hairline. so large that they pretty much raised the base of my hairline by about 3 inches. at this point i started seeing a new naturopath. the larger spots weren't growing in, and i had 4 new spots (a new record. zing!). my naturopath did a scalp test and it came back positive for tinea. she had me apply an oil concoction (coconut oil, olive oil, castor oil and thyme) to my scalp every night to kill any fungal bacteria ickiness. i smelled like pizza and looked like... well i looked like i'd just rubbed oil on my head. after 3 months of this the spots started to grow in (even the two on the base of my hairline - although they started to grow in white. i'm not complaining).

i decided to take myself on a solo euro-vacation for a couple of weeks. while i was there, i noticed one new spot forming at the front of my head. a couple of weeks after that, another one started growing on the top of my head, and then another one, and another...

when you have alopecia, people tell you it's caused by stress. and then they tell you not to stress about it. this is a challenging thing to do (or not do). i should also mention that i know i'm lucky. other than a few drafty areas on my head, i'm healthy, have a job i love and am surrounded by some pretty sweet people. i do feel guilty and superficial for being upset about the hair-loss, and i definitely try to keep it all in perspective. after all, it is just hair. that doesn't mean i'm going to stop fighting to solve this problem. and it doesn't mean having 1 or 10 bald spots is any less jarring on the ego.

in december i saw a specialist who confirmed (again) that it's alopecia areata. by that point the bald spots on my head had spread a lot (and in a way that was different than before) and admittedly, i was pretty stressed about it. and then i was stressed about how stressed i was. the specialist gave me a new prescription for cortisone that i apply twice a day, and reassured me that i would likely never lose my hair. i also went to see a herbalist, who gave me "tea" to drink twice a day as a blood cleanse (did you even know there was such a thing?). it smells like dirt and tastes like nothing i have ever tasted before (in a bad way, not in a good way). it's also been known to make me barf.

when i saw my naturopath last week, she was worried about how much my bald spots had grown. and then i cried. and then she was worried about me crying. and then i worried about me crying. and then her very handsome naturopath supervisor came in, and then i cried more. but eventually i stopped and the next day i felt recharged and ready to keep trying to kick alopecia butt, and buy a new hat in case i run out of hair to cover up with. and that's what brought me here today.

i will likely never write anything this long ever again in my life. or on this blog at least.

i hope people are able to find support, inspiration or treatment ideas from this blog. or at least a laugh. or at bare minimum, a good old-fashioned eye roll.

my next posts will be more focused on specific treatments, will likely include photos (that may or may not be scary) and maybe sometimes, i'll write about dinosaurs.

i hope you check back. and i hope there's at least one you reading this.