Treatment Options

Hands up if you think there's a cure for alopecia!!!

Well I can't see any hands which means you are all geniuses and you are right :)

There is NO cure for alopecia.  Anyone who tells you there is is a damn liar and you better turn the other way and RUN!  Do NOT give them any of your money or time.  Pleaseeeeee.

This disease is a bit of an asshole.  Just when you think you've got it figured out and you're on your way to coping with what has happened, it throws you another curve ball.  For me, that means that some of my hair has started to grow back.  To everyone else, its not that noticeable, but to me, the fact that I now have to shave my head and armpits once a week is irritating.  Hahahaha.  Don't worry, I'm still good though.  I've made my peace with alopecia and I'm fine with whatever it throws at me.  Other people, not so much and that's ok.

One of the things I heard most often when I first lost all my hair was that 'At least its just your hair and not something more serious'.

Don't say that.

I feel like one Alopecian can say to the other Alopecian that 'its just hair' because they've experienced the emotional distress its caused.  Even then though, when people aren't coping, its the last thing you want to hear someone say.  (And if you said that to me, I'm cool with it.  But my handling of my alopecia is very different from other people's so its just something to be aware of.  And I know its hard to know what to say to people.  It's a mix of wanting to comfort and make light of a not so great situation and it is friggin hard to know what to say.  Especially when I didn't even know what I wanted or what I needed to hear.)

While I wholeheartedly agree with the sentiment (and now am very much of the mindset that it is just hair) to a person experiencing such drastic hair loss out of the blue, the effects of the disease are devastating.   I felt like I didn't even know who I was anymore.  I didn't recognize the person I saw in the mirror, I didn't feel pretty and I didn't feel normal.  It was awful and it's the reason why when my dermatologist suggested high dose steroids to make my hair grow back, I almost considered it.

Now, keep what I said earlier in mind, there is NO CURE for alopecia.  But there are treatment options.  I haven't done a lot of reading of the efficacy of all the different treatments but I am a bit skeptical of some things because alopecia is SO DAMN RANDOM.  Here you are just minding your own business and then BAM!  Out falls a patch of hair.  And you're like 'okay cool, I got this, no big deal' and then BAM! Out falls a bigger patch.  But then actually you start to notice some little white hairs growing in your first spot and you're like 'sweet, my hair's growing back. Good job body'.  And then all your hair grows back and you're all good and then BAM!  Half your hair falls out and you're spending an hour a day crying in front of the mirror trying to pin your hair juuuuust right so that none of your patches will show.

It's exhausting.

So basically what I'm trying to say is that the shedding/growth cycle is sooooo random and sooooo different for everyone, is it the treatment that's working or are you just in remission?  I don't really know.  (But obviously there are studies about the treatments and obviously it's working on some people, otherwise it wouldn't be an option anymore).

I will say this though, treatment options seem to be more successful the less hair loss you have.  So if you're like me, you're kind of hooped.  There's stuff you can try, it just doesn't seem to work (and you're hair could decide its going to grow back tomorrow anyway).  If you just have patchy spots, there's more options.  These options include........

(PS: I'm totally talking about non-scarring alopecia just FYI )

Steroids:

Not the 'look at my muscles, I'm so buff!' kind of 'roids but like the 'look at me, my body hates me' kind of stuff.  

Steroids can be really helpful sometimes.  Steroids can also be really harmful.

With alopecia, steroids are either given via topical creams that you rub into your spots, injections into the affected areas or via oral intake.  I want to say that the creams/lotions/shampoos and the injections are the 2 most common ways for alopecia patients and the oral dose is the least common but it may depend on your doctor and your degree of hair loss.

Now, this goes for everything in healthcare, it is VERY important to be your own advocate.  Please make sure you know the facts about the drugs the doctors are suggesting and ASK QUESTIONS.  I feel like steroids are pushed on a lot of alopecia patients (my doctor made me feel terrible for refusing treatment for my alopecia) but there can be some pretty serious side effects from these drugs.  (Not to say that seroids are always bad, when you need them you NEED them and you shouldn't mess around, however....)

Most of the time side effects are minimal.  Especially considering that the steroids are usually only used short term and in an isolated spot (unless your taking oral steroids in which case your whole body is getting the goods).  Some things to consider are:  thinning of the skin where the injections/creams are being placed, changes in weight (due to fluid retention), 'brain fog', and a higher risk of infections.  Again, these are worse when you are on oral steroids, but it is still something to consider.

DPCP:

This stands for diphenylcyclopropenone.  It's basically a chemical that you apply to your head that triggers an immune response from your body.  Like 'ack!  What is this?!!  Must respond!'  I think the basic idea is that your body gets distracted by attacking this new thing that it forgets to attack your hair.  

Does it work?  Well it must for some people because it is still prescribed.  However, it is sometimes super painful and irritating and hard to find the right dosage. (And, no one is really sure of the long term effects from constant use, so there's that).

Rogaine:

No longer just for men!!  You can buy women's Rogaine in a fancy pink box!

Yayyyyyyyyyyyyyyyy

This is something I almost tried because it is non-invasive and doesn't seem to have any side effects except for irriation, rash and FACIAL HAIR.  Not always, but on occasion, Rogaine might increase your facial hair growth.  That made me go 'hellll no!  I already have a Ukrainian stache going on, I don't need a beard too!  I'm out.'

PRP:

I want to say that this is a relatively newer treatment for alopecia but it's been used for some other things for a while.  PRP stands for 'platelet rich plasma' and basically what they do is take some of your own blood, spin it in a centrifuge and then take all the plasma and inject in back in to your head.  Somehow this is supposed to stimulate your hair to grow back.  I'm not sure how so you'd have to ask about that if you wanted to know.  There's supposed to be very little side effects to this since you are using your own blood.  However, it is mucho mucho expensive.

JAK inhibitors:

There's been a ton of talk about this recently in the alopecia community.  The story goes that there was this guy in the States who had Alopecia Universalis for a long time.  He got started on this drug for another medical condition and all his hair grew back.  Quite crazy really.  But make no mistake, this is not a cure.  There's studies going on in the States right now and I think the drug has recently become available in Canada as well.  It comes with its fair share of side effects though including unusual bleeding, light headedness, increase in heart rate, tightness in the chest, etc.  If you're interested, chat with your Doc and see if you want to give it a try.  I think the drug that most people are using is called Xeljanz.

There are other treatment options out there too that some people try but are a bit less common.  They include; UV treatment, biotin or other vitamins, other creams and shampoos and dietary changes.

One treatment that I think is grossly underused is this:  Go talk to someone.  But actually.  If you have alopecia and you're having a hard time dealing with it, find a therapist or a counselor or head to a support group and talk to other people with alopecia.  Oftentimes knowing that you're not alone can make a huge difference in how you approach your disease.  And it's always nice to meet fellow baldies :)

Last but not least, I do think it's important to know that NO treatment is also a completely legitimate option.  I think that people sometimes feel pressure to try something just because the doctor wants them to or their family and friends want them to.  If you don't want to try any of the treatment options, THAT IS OK.  Especially when it's estimated that as high as 80% of people with alopecia areata will have spontaneous remission of the disease.  So you just never know.  Oh ya, and by the way...seems to be that as soon as you stop whatever treatment you've been using for your alopecia, there is a very high chance that your hair will fall out again and you're back at square one.  Lame.

Now, I am not a doctor and my blog posts should not be taken as medical advice.  It's just a bit of info for you to mull over.  It's very important that you speak to your own doctor about your treatment options (if you so wish).

I've opted for no treatment and I'm very happy with my decision.  I didn't really feel like treatments were an option for me since my hairloss was so extensive and rapid.  I also made a decision early on that I was better off learning to cope with the disease rather than let it take over my life.  The thought of trying treatment after treatment and having them fail or cause me pain was too exhausting and I couldn't do it.  I do however understand why people try out their options because it is absolutely heart breaking.

The most important part is that you don't let alopecia take over your life.  It's not worth it.  There are so many things that you are missing out on if you do.  Deep breath in, deep breath out and let it go.

You got this x

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 :(