What is Alopecia??

Guyssssss

Today is the LAST DAY of Alopecia Awareness Month so I thought maybe I should do a post about Alopecia and what it actually is.  (Yes, I have been a procrastinator my whole life.  I like to think I work well under pressure...my family would probably say otherwise...)  So here is your little education session about this funny little disease of mine :)

Number ONE:

It is an AUTO-IMMUNE Disorder.  Meaning...one day your body decides to be a bit of an ass and starts attacking itself for NO APPARENT REASON.  In the words of Stephanie Tanner, 'How rude!'.  And it is.  Exceptionally rude.  One day your walking along and everything is all fine and dandy and then BAM the next thing you know your body throws a temper tantrum and all your damn hair falls out.

As of right now there are over 80 types of identified autoimmune diseases and they can affect any part of the body.  Alopecia (obviously) affects the hair follicles (but nothing else, so that's nice).

Number TWO:

It's not really genetic...but kind of might be??  When I was researching all the stuff about aloepcia when all my hair was falling out, I tried to convince myself that I didn't have it because none of my family has it.  Turns out, that doesn't matter.  Only 25% of people with alopecia have a family member who also has it.  (I might have made up that stat but it's somewhere close to that anyway).  So, just because your mom has it doesn't necessarily mean that you will get it too.  (Unlike male pattern baldness because I'm pretty sure if that's in your family you're kind of S.O.L.  But its ok, being bald is 'aight).  Now, all that being said, there is some talk that they have identified the gene that causes alopecia and its closely linked to rheumatoid arthritis and type 1 diabetes (which I did not even know was auto immune until I heard about this research).  They still have yet to determine what turns the gene 'on' but they be workin on it :)

Number THREE:

Alopecia most commonly starts in children.  But once again, I kind of think this is a lie.  The more people I meet with alopecia and the more stories I read on message boards and what not, the more I'm convinced that it actually doesn't matter how old you are.  BUT 'research says'  that it most commonly presents when you are a child so we are going to go with that.

Number FOUR:

There are a ton of different types of alopecia but there are 3 forms that seem to be more common than the others.  They are:

1) Alopecia Areata: This one is the most common and some people don't even know they have it.  Areata means 'spots' and usually when it first presents the spot of hair loss is no bigger than a quarter size and a lot of the time is easy to disguise.  What I mean by some people not knowing that it's there is that a lot of the times the spot can be hidden at the back of your head and it's actually your hair dresser or friend, etc that can see it first.  Sometimes people only ever get one spot, it grows back and then it never happens again.  Sometimes one spot turns from quarter size to half your head.  And sometimes one spot turns into multiple spots turns into a whole not lot of hair on your head.

2) Alopecia Totalis:  This type of Alopecia means you are the lucky winner of no hair on your head but still having to shave your legs!!  Worst. Ever.  Basically its a total hair loss on your head and face but no where else.

3) Alopecia Universalis: This is the least common when we talk about the 3 main types of alopecia and (spoiler alert!)  this is the type I've got.  Alopecia Universalis (aka AU) is the absence of alllll your hair.  And I mean all.   I haven't shaved my legs in a year and it is grand.  I do get these random super white (like almost see through) hairs that grow in my armpits (lame) and a few bits on my head and eyelashes but its really nothing to get too excited about.

Number FIVE:

There is NO CURE and if someone tells you there is one, they are a damn liar.  Seriously.  There are treatment options out there which I will explain in my next post (and also why I'm not doing any of them) but there is no known and proven way to permanently reverse the disease process.

Number SIX:

Alopecia is completely unpredictable.  That means that one day all my hair could grow back.  And then it could fall out again.  Or it could not.  Or it could fall out in patches.  Or it could never grow back.  The possibilities are endless really.  That's why I don't get too excited about hair growth because it doesn't mean squat to me anymore.  That's what wigs are for ;)

(The exception to this would be if you have a type of scarring alopecia which means that the hair follicles are actually damaged and can't produce hair.  Mine aren't damaged, there is just inflammation at the hair follicles which makes my hair not grow).

Sooooo that's kind of it in a nutshell but I could have forgotten something since this is the end of my set of night shifts and I'm currently functioning at approximately 30% brain capacity (don't worry, I could still totally help save your life :) ).  Next week while I'm soaking up the sun in the DOMINICANNNNNNNN I'll let y'all know about the treatment options.  If you have any questions holla at me yo.

Much love,

Moi

The Engagement

I asked the boy how I should start this latest blog and these were his suggestions:

'Once upon a time in New York....'

'The Bald Leopard went to New York....'

'I know an Ironman...'

Have I mentioned the boy is an Ironman?  Because I think he wants everyone to know ;)

So yes, once upon a time (at the end of May) we went to New York.  I had never been to New York so I was quite stoked.  Plus it was the first time Paul and I were going to be just the 2 of us in months.  Long distance relationships are hella hard so any time we get together is precious and the fact that this time we got to travel together as well was a bonus.

We had kind of been talking about getting engaged for a while (aka I kept sending him ring emojis next to a bride emoji) and I was secretly hoping he would pop the question in New York.  However, I had told him that it was mandatory to ask my dad's permission before he asked me and as far as I knew he hadn't done it yet.  I met up with my parent's before I left and they informed me that no, he had not in fact asked them yet.  

'Are you kidding me?  What is he waiting for?  I bet you he's not going to do it in New York because that's when I want him to do it.  Watch him make me wait until the summer just to annoy me.'

Now before anyone goes and calls me crazy, there is something different about being in a long distance relationship.  Especially when you are as long distance as we are.  You have to have a goal or a direction that you are going in, otherwise you're just gallivanting around the world for years (which is fun but also kind of exhausting) and find out that 'wait, i'm not going to live where you live' and 'hold up.  I'm not living where you live' and then you're screwed.  SO...we had genuinely talked about this...who is moving where, when we are getting married, etc so I knew a ring was coming and I love bling and I'm super impatient :)

So I told my parents I no longer cared if he asked their permission and off I went to New York.

Anyone else ever been in a LDR (that's long distance relationship for those of you not up on the lingo.  I got tired of writing it out but I feel like I just defeated the purpose of using an abbreviation but from now on that's what I'm going to do, m'kay?).  Anyway, there's this moment when you see each other in person for the first time in months and you're like 'Geez, is that really you?  Like in the flesh?  Like you're a real person that I can actually touch and not just make faces at through a computer screen?  You mean we can actually talk to each other and not just text?'  And for a very brief moment its a bit of a shock that there they are, just standing right in front of you.  But then its amazing, because there they are, just standing right in front of you and everything is right and your mind is at ease and your heart feels full.  Those are the best moments x

So I told myself, 'Don't think about getting engaged.  Just focus on enjoying the trip and being together' because I didn't want to walk away from the trip feeling disappointed due to the lack of bling and forget that "HEY!  We are in NEW YORK and we are TOGETHER and this is AMAZING'

Turns out.....he did it on the first day we were there :)

We were walking through central park enjoying the views and trying to find all the famous spots.  The weather was perfect, the birds were singing, the squirrels were aggressive, you know, the usual.  We came up to a nice wooded path with benches along the way and sat down to have a break.  Well actually I sat down to have a break, Paul walked around desperately trying to find a place to pee in the middle of the park.  So romantic :)  

Apparently this wasn't a good place to stop so we kept walking until we came up to the lake with the boathouse.  I found a rock to hang out on and Paul took some pictures before sitting on the rock below me.

Now he would like everybody to know that he was sitting below me.  And I would like to add that he was sitting.

We kind of have this thing where Paul is a present-fiend and I usually oblige by bringing him chocolate or chips and what not from home every time I go to visit.  This time was no exception as I had brought him a bag of chocolate Easter eggs and a big Easter bunny.  So we are sitting on the rock and he says

'Do you want your present now?'

'Oh I get a present this time do I?'

'Well ya...'

And he opens up his camera bag and pulls out a big shiny box.

'What is this?'  As if I didn't know....;)

'Well open it'

'Should I?'

'ummm yaaaaaa'

So I open the box and he goes,

'So do you want to marry me?'

What do I say?

'Really????'

Not because I was surprised or didn't have an answer for him, but he was still sitting on the rock!  Clearly I forgot to tell this boy that getting down on one knee was also a requirement.  But of course I said yes anyway and will now forever hold the fact that he didn't get down on one knee over his head for the rest of his life (because I'm pretty sure that's what people in mature relationships do).  And he will try and convince you that he was practically on one knee because he was sitting below me on the rock. 

Men.

But then after he put the ring on my finger he gave me the speech.  And it was a damn good little speech.  Every girl wants the speech, almossssst as much as we want the bling.

Turns out he had asked my parents...about 2 months ago...and they had legit managed to not let it slip which I am actually incredibly impressed with and they get major props for that.  And he had bought the ring months ago and had thought about waiting until the summer to propose but really he needed to do it now because 'it's really hard to have something that I can't talk to you about because I tell you everything.'  And if that isn't friggin adorable, I don't know what is.

And then he talked about my bald bald head.  And how when you first meet someone obviously looks play a factor in attraction.  But when I lost my hair, it didn't change anything for him.  At all.  And then I cried.  Like a lot.  Because hair is such a huge part of our self esteem and making ourselves feel beautiful.  And sometimes its hard to imagine feeling wanted or attractive without flowing locks and flirty lashes.  But not for one second have I ever felt that way around Paul.  He's been such a huge part of my coping and I am forever grateful that I managed to find him in this world with so many fish in the sea but very few good men.  Because the people who love you the most are never going to care if all your hair falls out, that's not why people fall in love.  They fall in love with you, as a person and your quirks and your insecurities, and that my friends is a beautiful thing.

So here I am, a bald girl totally engaged to the man of my dreams.  A person who meets every single expectation, want and need I never even knew I had and I couldn't be happier or more excited. So cheers to the boy who is now the fiance and soon to be the Husband (yup, that gets capitalized).

And to think, I used to tease him about him losing his hair....

Refresh

Oh hiiiiiiii

Long time no talk.

My bad.

This year is utter chaos.  And it is stress. If my hair hadn't fallen out last year it sure as hell would have this year.

Turns out a combination of a long distance relationship, not getting granted any of your summer vacation, ongoing stomach and gut issues, anxiety, a less than stellar workplace environment, 3 weddings (being in 2 of them and destination for the 3rd), crappy eating habits and major body issues lead to an incredibly exhausting year.  Who knewwwww 😜😁😃

All good though because my eyebrows are looking fab!!! Got my touch up done today and I am super in love with them 👍🏻

Stay tuned for a new blog next week where I tell you all about how I just got ENGAGED!!!!!! Because yes, that happened and yes I'm going to be a bad ass BALD BRIDE 👰🏼

Cheers love bugs.  Talk soon x

Before the touch up:

After the touch up:

Gettin' My Tat On

Hands up if you’ve heard of microblading!!!

Ya....I hadn’t either, but thank goodness it exists.

I’ve mentioned before that losing my eyebrows was a HUGE deal to me- it was almost worse than losing all my hair.  Over the last few months they have completely vacated the premises so I’ve gotten ok-ish at drawing them back on.  But I hate it.  Like really really hate it.  And I hate not having eyebrows so I’m feeling a bit of a lose lose situation here.

I would have never considered getting my eyebrows tattooed previous to this alopeica business. Number 1: I had no need for it, if I wanted my eyebrows to pop a little I could just fill my existing ones in and 2: I’m a big chicken.  Like big big chicken.  I don’t do pain, at all.  You better believe that some hardcore drugs will need to be involved if I ever need anything more than an IV (helloooooo propofol!!!).  I’m also a HUGE commitment-phobe when it comes to permanently altering my body.  Too many what-ifs and I don’t want my saggy old skin to look super ratchet when I’m a grandma.  

Cue microblading.

I honestly don’t remember where I first heard about microblading.  I want to say it was probably from Instagram as I searched through pictures of other women with alopecia.  Unlike traditional eyebrow tattoos, microblading is only semi permanent.  That’s because the pigment/ink only goes into the superficial layers of the skin.  Typically microblading tattoos last 1-3 years depending on the pigment colour and how your body reacts to the process.

I had my appointment earlier this week and I was surprised at how calm I felt about the whole thing.  Sure there was an element of fear but mostly I was just excited to have it done.  I was getting downright miserable drawing my brows on every morning and not really willing to go without.

After filling out all the necessary paperwork, my technician, Dawn, took me back to the tattoo room and went over the whole process with me.  The next step was to draw on the outline of my new brows.  I laid down on the table and she measured, stenciled, measured, sketched, measured and altered the sketch until both sides matched (remember: eyebrows are sisters, not twins!!).  She gave me two different options in regards to shape of my brows and I headed out to the waiting room to show my friend (Marianella) and my youngest brother (Michael- the one with the pink hair).

Luckily Marianella picked the same eyebrow that I liked.  She was given strict instructions on our way to the appointment to not let me do something that I wasn’t comfortable with and her opinion means a ton to me so I would have been having some major self doubt if she picked something else (crisis averted).  Next Michael got to have his say.  He picked the same as Marianella (which he told me later he really only chose because Marianella did because he couldn’t really tell the difference between the two).  And finally I Skyped with Paul.  That’s when the long distance thing sucks the most- when you have big stuff going on that the other person can’t be around for.  Luckily though, time zones worked out ok and we were able to have a chat.  He was a ton of help (cue eyeroll):

‘Which one do you like?  The right or the left?’

‘Ummmmm.....I think the one on your right.’

‘Well that’s no good, the rest of us said the left.’

‘Oh, well ok.  That one’s alright too.  But not that colour.’

‘It won’t be this colour, that’s just the pencil.  And it won’t be that big either.  She just has to draw it bigger so she can fill in the outline.’

‘So basically you’re telling me that what I’m seeing is actually nothing like what it’s going to look like?’

‘Well no, the shape.  Is the shape ok?’

‘Ya.........(long pause).......actually I’ve gotten used to them already.  Ya.  Get them like that’.

Good talk darling ;)

After we all agreed on the shape, I went back to the tattoo room and Dawn drew on the outline with a waterproof pen and put on the numbing cream.  The numbing cream needed to sit on my skin for ~15 minutes so I got to sit and chill with my peeps for a bit and then it was time for the process to begin!

After picking the pigment that Dawn thought would look best on me, we got started on the outline of the brow.  (Ha!  ‘We’.  Just kidding.  I did nothing but lie there but without me there’s no tattoo.)  

‘This part may feel a bit pinchy’.

Now, if you are scared of pain like me, do not let that stop you from microblading.  Like at all.  Whatever is in the numbing cream is theeeeee shit.  Bam! 

She made the first cut....

‘And.....’

‘Ya, I feel nothing’

Like legit.  I felt almost nothing for the vast majority of the tattoo.  It was just the end that I started to get a little sore but that is partly because my body is an asshole.  

I’ll explain in a minute.

Now, if you’re like me and don’t really do your research before getting certain procedures done (I didn’t want to freak myself out, ok???) you may think that microblading would involve a tattoo gun.

It does not.

It’s actually more just like an exacto knife.  I don’t really know how the whole process works but there’s an exacto knife thing and a little tub of pigment and then some sort of magic in-between (and more topical anesthetic). 

So anyways, back to my body being an asshole....

Basically they make little cuts in your skin (and while you don’t really feel much you do hear scratching which is a tad bit unnerving but I just tried to ignore it).  Well, your skin doesn’t really like to be cut (turns out) and then it gets really angry and makes you bleed and swell and such.  (Which I didn’t really think about but probably should have known but because I didn’t think about it I was a bit freaked out.  But Dawn was super awesome and reassured me that this was all normal and plus she has this other magic stuff that makes the bleeding stop and honestly I didn’t even know I was bleeding until she told me so it really wasn’t that big of a deal at all.).  Butttt my skin was extra super irritated at the whole thing and did a little bit of extra swelling which meant that Dawn couldn’t put as many hair strokes in on this initial appointment.  It was all like ‘get this pigment out of me!’ and I was all like ‘Shut up and take it you stupid skin!  If you wouldn’t have made my hair fall out in the first place we wouldn’t have to do this!’ (I said this in my head because I didn’t want to weird Dawn out but I feel like having arguments with your body when you have an auto-immune disease is a completely rational thing to do).

During the whole tattoo Dawn sat me up and measured things a couple more times and made sure I was comfortable.  The thing with microblading is that the colour fades and your body might decide to ditch the pigment a bit (like areas of my eyebrow that were more swollen and NOT letting the dang pigment in could fade to nothing over the next couple of weeks) which is why most places include a free touch up 1-3 months after your first appointment.  So while I was busy having an argument with myself in my head, Dawn was busy assuring me that whatever happens, we will make sure everything is perfect with the touch up.

When she was all finished with the tattoo she sat me up and gave me a mirror to check myself out.  I was in shock.

Literally.

But not like a ton of shock, just like the appropriate amount of shock that you should be in when you get your forehead cut open.  I think I scared her a little cuz I was pretty quiet and all like ‘Ya, cool, this is great’ but like maybe not as excited as some people are.  But I was totally legit excited about it because ‘Look, I have a face!’...but holy crap, I got a tattoo.  And wow.  And this is crazy.  And yesssssssss.  There were a lot of things going through my mind :)

For the first hour or so after the tattoo I felt a bit like I had had Botox and I couldn’t really move my face and that if i did move my face then my eyebrows would fall apart.  

They did not.

Since then I’ve just been trying to be super diligent about doing my proper aftercare because I want these mofo’s to look ON FLEEK for as long as possible.  

This turned in to a really long post.  Hopefully I got all the procedure stuff right but I might be wrong so don’t quote me if you’re all like ‘I’m getting my eyebrows tattooed’ and they come at you with a gun and you’re all like ‘THIS IS NOT WHAT I WAS PREPARED FORRRRRRRRR’.  Dude.  I don’t know.

Also, couple shout outs are in order:  First of all if you are in the Edmonton area and want to get your brows bladed check out Iron Orchid.  She has an Instagram account and I just feel like her brows are the most natural looking out of all the ones I’ve seen.  Dawn is super nice and makes sure you are happy with everything and explains everything as she goes.  She is moving to Mexico in May but is planning on coming back every 6-8 weeks to take clients (cuz tickets are only $400!) but if I can’t get in to see her because you take my spot....friends off.  And if she ever decides to only be in Mexico....guess what Paul?!!!  We’re going to Mexicooooooooo.

Super special thanks too to my parents and Paul’s parents who helped out with the cost of the procedure.  It literally means the world to me.  It’s so nice to feel like I have my face back :)

In summary....

Super stoked with the brows.  It will be interesting to see how they heal and how much work we will have to do at the next appointment.  (P.S: the whole process including the consultation took about 2ish hours).  I’ll keep you updated as it goessssss.

The Hair Massacure

Last week I had the pleasure of shaving my brother's head. 

It was super satisfying.

For those of you who don't know, the Hair Massacure is a local fundraiser for our children's hospital and the Make a Wish Foundation.  Participants collect donations and then head down to West Ed on the event day to line up and have their heads shaved.  Most participants opt to dye their hair pink in January as a way to bring awareness to the campaign and add a little more fun to the fundraiser.

My brother did just that. 

I wanted to shave Michael's head for 2 reasons:

1. When else do you have the opportunity to take clippers to your brother's head and not get in shit for it?

2. I wanted to know what it felt like to shave someone's hair off (I was always too chicken to do the event on my own and now won't really have the chance ;) )

I was surprised at how nervous my brother was to shave his head, especially considering he had participated in the event before.  He mentioned how many people had commented on how 'brave' he was to dye his hair pink but no one had really mentioned anything about the hair shaving bit.  It's funny how people just assume that men will be ok with having their head shaved but not ok with having funky coloured hair.  For Michael, the apprehension was in the head shaved itself, he would walk around with pink hair for a long time and not really been fazed by it but the thought of having a closely shaved head bothered him.  I don't blame him.

I think men affected by alopecia are often over looked. 'Oh it's easier for men. It's normal for them to be bald' is often uttered but how true is it? Sure, it is more common for men to lose their hair or have receding hair lines but does it mean that it affects them less? I mean, here is my brother who is not an overly vain man, who knows his hair is going to grow back, and he's still a bit nervous about shaving it off (of which I don't blame him and he took it like a champ.  The only potential for watery eyes was from when I got hair in them because apparently you're supposed to shave it front to back not back to front.  I don't have hair! How am I supposed to know????). Point is losing your hair sucks. Man or woman.

After the shave we got interviewed by the news (see clip below....hopefully.  If it works fast forward to 12:00) Not going to lie, because this fundraiser is for cancer research I felt obliged to tell the cameraman that I do not in fact have cancer.  Hard to say if he was going to ask about it but I wanted to avoid an awkward situation :)

Thanks for letting me shave your head Mikalev :). Let's do it again sometime ;)

http://edmonton.ctvnews.ca/video?clipId=811262&binId=1.1203553&playlistPageNum=1

The Final Hair

It’s much less obvious when the rest of the hair on your body starts falling out. 

It took me 3 weeks to notice.

I looked down at my legs one day, counted back to the day that I had dropped the boy off at the airport, and my heart sank.

But I was in denial.

‘Its not falling out, its just not growing’ I told myself ‘There’s still hair there, its just stunted but it will come back’.

Now you may be thinking to yourself ‘Why is she complaining about not having to shave her legs??  That sounds amazing!’

Not going to lie, it is rather convenient.  The problem is I knew what would come next...the rest of it.  And I mean everything.

I decided to bring a friend to my final dermatologist appointment and gave her strict instructions to not let the doctor leave the room until I had all my questions answered (even if it meant she had to stand in front of the door).  I just wanted some answers, and I wanted someone to tell me the truth.

We sat down in the office and in walked the resident.  After explaining my story to him, he went out to get the Attending (can I still call him the Attending if its in an office and not a hospital??).  He shook my hand and then made me sit in the dentist-esque chair.  And then....get this...he LOOKED at me.  Imagine that?!!!  He looked at my head, he looked at my face, he looked at my arms, he looked at my legs and then he sat down beside my friend.  And then we had a chat.  A real honest conversation about what was going on.  

‘Well its definitely alopecia.  We know that.  You seem like you’ve done your research.  I’ll try whatever treatment you would like to do but you know its not likely to work right?’

What?  No scalp biopsy?  No steroids?  No injections?  No products to sell?

But of course I knew none of it would work and it was honestly a huge relief to have someone of a credible background (aka not just my own research) finally tell me the same thing.

‘Again, if you want to try something, anything, you can come by my office anytime.  Just let me know if you change your mind.  And there are a few ongoing studies now that are showing some promising results so its not like people aren’t working on it.  I just don’t have much to offer at the moment.’

‘And the rest of my hair?’

‘It will likely fall out too’

He let me look over my list of questions and made sure I had nothing else to ask him before he left the room.

And then I cried.  Ugly cried in the parking lot of Tim Hortons for an hour.  Straight up.  All the while my friend tried desperately to make me feel better.  (Sorrrrrry MA ;) )

I knew the hair on my legs was already starting to fall out but about a week earlier I had taken a look at my eyebrows and noticed some thinning.  I had a bit of a panic attack/full on ‘why me’ session and tried to convince myself that it wasn’t true.  But after this appointment I knew that it was.  Even though I knew in my heart of hearts that it didn’t matter what I did, I have no control over my hair growth, it took me a full month before I started washing my face normally again and not being super careful around my eyebrows so as to not ‘disturb’ the hairs that were holding on.

I had told Paul after he shaved my head that I could live with being bald, but heaven help me if my eyebrows fell out.  Anything but the brows.

It may seem stupid but I’m very attached to my eyebrows.  I’ve always been quite proud of them.  I never really had to do anything to them, very minimal plucking, no shaping, they were just right.  And they framed my eyes well and they made me look like me.  When I realized that they were going to fall out too I straight out lost my mind.  I cried at the drop of a hat and didn’t want to leave the house.  It got so bad that the boy was considering flying for another visit.  I couldn’t handle it and I didn’t want it to be true.

I know it all sounds a bit dramatic but I dare you to try it.  Being bald is one thing.  Not having any eyebrows is one thing.  Not having any lashes, ok.  All three?  It’s shit.  Complete and utter shit.

My biggest fear was if I would be able to draw on my eyebrows and not make them look like a disaster.  I knew people already would be looking at me because I was bald and I’m quite comfortable knowing that people are likely talking about it.  But I really didn’t want them saying rude things about my feeble attempts at making myself look a bit more ‘normal’.

I don’t know, I’m having a hard time putting this into words.  Could be because this is where we finally get up to present day me and I’m still trying to figure out how I feel and where I’m at.  Maybe that’s why its taken me so long to write this post.  Because its finally wrapping up my journey thus far and I can start to write about current events, but I don’t know how to properly ‘wrap’ it up.  

Hmmmmmm

Well lets go with this:

-I am done with dermatologists and don’t really feel the need to ever see one again (unless its for a prescription for a wig to see if Blue Cross will cover something)

-I’ve gotten to be ok at drawing on my brows.  (I have 3 hairs left on my right brow and about 10 on my left brow).  Up close you can absolutely tell that they aren’t real but I feel like from farther away they seem to blend in to my face.

-That being said I HATE waking up without eyebrows so I am seriously looking at getting them tattooed (not the block tattoos, a newer technique called micro-blading that creates realistic looking hair strokes.)

-I’m unimpressed with my eyelashes at the moment.  Again, I knew it was coming.  I was prepared.  But in the last week or so they’ve decided to vacate the premises.  I told myself that losing my eyelashes wouldn’t be that big of a deal because I can glue on fake ones every day, but lets be real, that’s not happening.  I am hella lazy and do not have enough time to be worrying about fake eyelashes when I start work at 6:45.

-I’m comfortable with the unpredictable pattern of alopecia.  At one point a couple of months ago I had a ton of hair growing back and now its all fallen out again.  That is what alopecia does and why I say that hair growth means nothing to me for the rest of my life.  Even if I were to have all my hair grow back again, I’d be happy sure, but I would never attach myself to it like I had been before.  It takes waaaay longer for hair to grow back than it does to fall out.  And fall out it may and likely will.

-It is amazing to me how quickly you forget what it was like to have hair.  I don’t remember what its like to wash my hair or brush it.  I don’t remember what it feels like to have wet hair or have to dry and style it.  I don’t remember what it feels like to have my hair brush my shoulders or tie it up in a ponytail.  It’s kind of sad, but more just weird.

-I love the amount of support that everyone has given me and I am truly grateful for it.  It has made this process a hell of a lot easier.  However, please do not be offended if I don’t try your suggestions for how to make my hair grow back.  There is no magic pill, no shampoo and no special food that I can eat that will make my body decide to stop attacking itself.  If there were, there’s about 150 million other people that would know about it.  This is an internal and complicated problem.  

-I’m ok.  Really.  I HATE being bald.  Its not an easy thing.  It makes my life a bit easier when it comes to everyday maintenance but I don’t like it.  I don’t have to like it to be ok with it though.  And I am ok.

-I’m looking into making my own wigs (if I ever get some time off).  I took a wig maintenance class a couple weeks ago that I will write about, it was really good.  I’d like to maybe create my own line of cool, sort of funky wigs that could be an alternative for other people going through similar things (or just wanting a rad new look).

-I have other ideas too that I’m super stoked about so stay tuned :)

Next time I’ll talk about what the heck alopecia actually is since I haven’t really told you that much aside from the fact that its an auto-immune disease that makes your hair fall out.  I’ll talk a bit more too about treatment options and why I’ve decided to stay clear of them.  Other than that, the continuation of my blog will be that of my everyday life as an alopecian.  Stories, opinions and projects.  If you have any questions I haven’t answered yet or something you would like me to talk about please feel free to send me a message, I love feedback :)

Thanks for reading my sob stories friends.  Much love x

Sometimes my hair grows back...

And my boyfriend becomes my hairdresser

And then it falls out again...

At least my razors are being put to use

Bye bye brows :(

Dermatologists Are Dicks

l feel like I need to start this post with a disclaimer so here it is:

Number one, the following are my feelings about my situation and my feelings only.  If you are currently experiencing any form of acute hair loss you must absolutely go see your doctor.  It could be a symptom of a serious health issue.  They will most likely refer you to a dermatologist if they can not figure out an answer, because yes, dermatologists are the experts.

I have the utmost respect for physicians in general.  I feel very privileged to have had the opportunity to work with a number of incredibly talented, compassionate and intelligent physicians over the course of my career thus far.  I’ve watched them work tirelessly in the pursuit of finding the ‘answer’ and see a genuine concern for the patient’s well being.

I also know, that despite my medical knowledge and experience, I am not a doctor.  I will never claim to know more than a specialist on such issues.  I am however a fairly reasonable person who is able to keep medical issues in perspective.  Therefore, if you lie to my face and make me feel bad about my decisions regarding my COSMETIC loss, we are NOT going to be friends.

I did my research.  When something in your life changes so dramatically for no apparent reason its only natural to want to know why.  And when you have to wait months before you can get in to see a doctor, you’re going to want to try and find some answers a bit sooner.  

I read articles, wikipedia pages, pulled up medical journals and spent hours on message boards.  I combed through other people’s experiences and compared them to mine.  I knew it was alopecia, I just needed someone to confirm it.

Warning: Rage is coming.

My first stop was my follow up appointment with the initial dermatologist I had seen when I still had hair.  Remember the one who barely looked at me and then diagnosed me with Telogen Effluvium?  That one.

I walked in to his office bald.  No scarf or wig in sight.  Shortly after I sat down in the room the doctor walked in along with his nurse.  He took a quick look at my lab work, said everything looked normal, and then went to explain our next steps:

‘Ok, so now we have to do a scalp biopsy.’

‘Well, do we really have to do that?’ (Because despite the fact that I put needles in people’s arteries on a fairly regular basis, I myself am fairly needle-phobic).

‘Of course we have to do that.  How am I supposed to treat it if I don’t know what it is?’

After I continued to hesitate about the necessity of a biopsy, he laid this one on me:

‘I’m only trying to help you.  Let me help you.’

SCREW.

YOU.

He walked out of the room after telling me to ‘make another appointment when you change your mind’.

I burst into tears, full on ugly crying as the nurse handed me some Kleenex (thank God for nurses).  I felt embarrassed, overwhelmed and I was LIVID.

I’m not good in the moment but if I could go back these are the things I would have said:

1. You’re a dick

2. Friggin LOOK at me.  I walked in to your office bald, I’m not trying to hide it.  That means that no matter how important my hair is/was to me, I’m clearly coping to some extent.

3. You diagnosed me pretty easily last time without a biopsy.  Why do I need one now? (My mom pointed this one out to me).

 4. You’re a dick

 5. If I can figure out its alopecia by doing my own research, why can’t you?  I’m pretty sure you’ve been a dermatologist longer than I’ve been alive.  Surely this isn’t the first time you’ve seen this?  And since it’s not, why aren’t you being honest and straight forward with me?

6. I’m not dying.  Stop acting like I’m refusing life saving treatment.

7. Piss off

I walked out of his office with my mascara running down my face and an awfully snotty nose.  Needless to say, I won’t be going back.

My next appointment was with the dermatologist I initially had been referred to.  My hair had been trying really hard to grow back and I had some solid peach fuzz at the back of my head.  I was stoked.  Absolutely elated.  I was positive that this was a good sign and that my bout with hair loss would only be temporary.

Again, I walked in to this doctor’s office bald.  Absolutely no attempt to hide it.

The doctor came in to the room, quickly reviewed my chart, took a quick look at me and said

‘I’m sorry you’re going through this.  Alopecia is a hard thing to deal with.’

(Funny how he could diagnose me without a biopsy, isn’t it??)

Ok, I thought, this doctor could be good.  He seems sympathetic and honest.

Wrong.

The next thing he did was take a quick look at my head,

‘Hmmm, not much hair there’

Now, I’m not entirely mad at him for pointing this out, but that one, simple, off handed comment completely crushed me.  I had just begun to pull myself together again and I was feeling so much more confident now that I had peach fuzz on my head.  In an instant he completely destroyed that.  I was right back to square one.

He wanted me to do some blood work,

‘I’ve already had that done’

‘Well sometimes things change’

‘No, like 2 weeks ago.  I had all the blood work done 2 weeks ago.’

Now this is the part that really irritates me, and maybe I expect too much, but he then made no apparent attempt to locate said blood work.  Didn’t check his computer, didn’t say he would contact the lab to find out the results, nada.  If you think you need blood work but your patient has already had it done, wouldn’t you want to know the results?  If not, WHY are you ordering it?  And what if the other physician had missed something?  

So instead of looking up my blood work (which I know was normal, that’s not the point), he came up with this treatment plan:

1. A month long tapering dose of Prednisone (an oral steroid)

2. Rogaine (a topical hair growth medicine)

3. Repeat blood work

4. Latisse all over my head every night (I’m pretty sure Brooke Shields does the commercial for this one.  It’s a serum that you put on your lash line every night to make your eyelashes grow longer.)

5. Come back in a month and we will see where we are at

‘You will have to be patient but I am confident we can get your hair to grow back.’

You doctor, are a friggin liar.

I will explain in an upcoming post about treatment options for alopecia and why they are not for me, but this is what you need to know right now:  generally speaking, the more extensive your hair loss, the less likely it is to grow back.  Also, any treatment becomes less effective.  Call me crazy but I expect a dermatologist to tell me that.

Doctors, take note:  It does NO GOOD to try to give your patients hope if you’re not going to be realistic and honest about it.  It’s rude and it’s irresponsible.  (If I hear the term ‘short term intubation’ one more time..... ;) )

I walked out of that office with a $200 bottle of Latisse in my hand (because of course his office conveniently sold it and I wasn’t sure what else to do), feeling more confused than ever before.  Do I start the steroids?  Do I really need more lab work?  Is any of this really going to work?

(Side note: the Latisse that he wanted me to rub all over my head?  The one that I paid $200 for (and am still irritated about)?  The bottle was 5 ml.  FIVE mls.  FIVEEEEEEEE.  So that was supposed to last me what?  A week?  Also, for $200, the applicators are shit.)

About a month later I had my final dermatologist appointment.  Third time’s a charm.  I walked away from this appointment with tears as well.  Difference is, they weren’t angry tears or frustrated tears.  Just sad.

This dermatologist was honest with me.  He treated me with respect, compassion and understanding.  And even though these words broke my heart, they still meant the world to me,

‘You’re going to lose all of your hair’