Monday, 29 February 2016
The Hair Massacure
Tuesday, 2 February 2016
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
Saturday, 9 January 2016
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’

























