ROTTEN TO THE CORE: Hereditary Angioedema (HAE)

ROTTEN TO THE CORE: Hereditary Angioedema (HAE)

Hereditary Angioedema (HAE)

I sometimes forget that I have HAE. Those are what I refer to as the good days- the days where I don't get attacks (what we call our episodes of sickness). Sometimes the good days last for months at a time. But other times the attacks are constant. Since this disease is a bit of a freak of nature to begin with (only about 1 in 150 000 are affected) it's not surprising that it's also unpredictable in it's ways. You can never really know when it's going to start but when it does... you're in for a ride.

HAE doesn't care about you. It doesn't care about your obligations, your priorities, your plans. It'll occur whenever it wants to and also last for an undetermined amount of time. An "attack" consists of the swelling of one or various parts of the body, both external and internal. Most people who have HAE don't really know what causes their attacks. Some people have theories or educated guesses about what could be causing theirs, and when they stay away from certain foods, etc that they think are the "triggers" they do see a difference. Because of this, people often compare it to an allergic reaction and let me tell you that is the worst thing you could ever say to a person who suffers from HAE. It's bad enough that nobody understands what we're going through, and that most doctors don't even know that this disease even exists or how to treat it. 
I'm constantly searching (in vain, up until now) for people who might be able to relate. I've searched for groups on Facebook, I've scoured the internet.. and here I am, thousands of Google searches later, blogging about how lonely this disease can really make you feel.

So consider this my invitation. I'm reaching out my hands. I'm extending an olive branch. If your eyes should ever happen to meet this little paragraph of words and you suffer from hereditary angioedema, or anything similar, and want to communicate with other people who feel your pain, don't hesitate.

Leave a comment on this blog.
E-mail me: celinaflores@live.ca
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le metro de montreal...

Sometimes life is funny. You know, in the stupid, frustrating way that we all accept every single day. Sometimes it's just stupid in a way that is entirely unfunny but still just as frustrating. Like when you really start to wonder when common sense went entirely out the window. Tonight while getting on the metro after work I found an empty seat and sat down. A few stops later a woman gets on with her son. She sits beside me and continuously gives me this look that says "I want my son to sit with me, can you move?". Well first, no. I had a long ass day whether it looks like it to you or not. Your son is about 5 years younger than me. He's in better shape. He can stand. So the ride continues in this awkward manner without me knowing it was just about to get worse. A blind man gets on the train. I spot him instantly and get up off my seat to offer it to him. I keep one foot directly touching the seat so no one can sit down and I try (in vain) to reach him, tap him, get his attention to tell him he can sit down. Well the train shifted at that point so I fell a bit forward and in those split seconds, the woman's son sits down on my used-t0-be seat. I notice immediately and I look at her like, "seriously?". So I say to her, "c'est parce que... j'allais donner mon siege a le monsieur qui est aveugle", roughly translates to: this seat was not meant for your son. She attacks me right off the bat. I don't decide who sits in what seat. I can't tell her that her son can't sit there. Who do I think I am? Are you fucking kidding me?! You're reprimanding me for trying to do a good deed. Kudos to you. And great lesson you're teaching your children. And, in fact, I do decide who gets to sit in my seat when I left my seat for a specific reason. That's what public transportation is about. You can sit your fat lazy ass down for as long as you want but when a disabled/pregnant/elder/etc person gets on the train, ya move! I couldn't really believe this stupid exchange. In my eyes, it was totally unnecessary. I really didn't need to get yelled at today, much less for a reason that makes no sense at all. Whoever you are, lady, I hope you're proud of yourself.

Size 6 is The New "Fat"

I was having a conversation with my little sister about Karl Lagerfeld's comments about Adele being "beautiful... but too fat" (insert eyeroll and middle finger here). I thought that was enraging enough but she went on to tell me that recently an article had popped up on the internet saying how size 6 is the new plus size. Say what? Not only is that completely ridiculous but it's so dangerous. I mean, let's say you're one of those people who think I'm the one being completely ridiculous. Just think about it this way: what message does it send to actual plus size women when you tell them the spectrum has been broadened to include girls who in their minds are downright tiny, especially in comparison to their own selves? Is the mission to make them feel fatter, to make them feel even more that they are not accepted? And to the "new plus size" girls, is the mission to make them feel fat, period? Fat. The word itself is so... abstract. What is fat? That squishy yellow matter they always bring out on doctor shows? That little roll that sits on top of your jeans when you sit down? A few extra pounds, or a few hundred? Personally, I wish we lived in a world where no one had to be considered plus size. Why can't all women be catered to at one store? Why does one group of women "deserve" nicer clothes? Why does one group of women need their own special store? Why can't we all just co-exist without looking at the size of our bodies, without ostracizing another group of people into their own respective corners so we can pretend they don't exist. The fashion industry as a whole (whether it's Dior or Forever 21) needs to step up it's game in terms of catering to more than one type of girl. I'm afraid the end result will be a world full of eating disorders. But I'm also afraid people would be more comfortable with that.

weird

It has just come to my attention that my blog is largely viewed by people in the United States and Russia. I honestly, honestly hope that you all don't think I'm crazy. I have always been under the impression that nobody looks at this thing. I would like to know you guys! So please come forward and be crazy with me. x

opinions are like....

I've noticed recently, either because this is new or because I am now old enough to recognize it, that people try way too hard to change the opinions of others. I understand it in the case of an opinion that is of a dangerous nature (racism and the like) but honestly, if it is of my opinion that, say, ketchup is disgusting and you're threatening my life because of it... you have problems. You'd think (or at least I would) that since we've been in existence for two thousand and almost twelve years, someone would have realized by now that we are all different and therefore do not all think the same way. And isn't that the point of being alive? I'm all for a debate, usually, but why has it reached a point where everything has to be debated. Can things not just be left alone? My opinion will not change your life and the same goes for yours to mine.

i don't do mornings

so, I've been jobless for 2 months. just came back from a vacation to cuba. one can say I've really been enjoying my sleep. well, maybe a little too much but fuck it, it's my life and my problem to deal with. cut to this morning. i usually wake up at 7:45 am when my boyfriend gets up to go to work, and I'll typically stay awake with him until he leaves and then go back to bed. yeah well... I get back into my beautiful big comfy bed, close my eyes for half a second and then *BZZZZZZZ* oh bliss. the city has decided to dig up my lawn today. why on earth is this necessary? i mean there is quite literally a 15 foot hole in the ground, directly in front of my home, and for what? it's november. so I'm basically just waiting until I can go back to sleep. it's 2 pm now, by the way.

Omnivore vs Carnivore

First off, let me just pre-face this post by saying: what the fuck? When and why did this ever happen? And why does it seem like it's always coming from the vegetarian/vegan camp? Listen, I don't pretend to actually care about the opinions of others whether it's about my sexual preference, the color of my toes or, now, the damn food I eat. But seriously- why does everyone else care? I don't care that you chose to not eat meat, so why do you care that I chose the opposite? I wouldn't even call it a choice. It's just the life I have lived for 21 years. I don't have a problem with it, it doesn't bother me in any way. I never even think about it. So it makes me laugh that apparently everyone else on this earth is losing sleep over it. Let's make this really simple. I never have, and never will, try to tempt you with a juicy steak or a chicken nugget. So please don't try to "tempt" me with your lettuce. Also, what is this bullshit about my heart being significantly lesser than yours because I eat cheeseburgers? All of a sudden, I don't care about animals and I want all of them to die a most painful and gruesome death. While we're at it I want their souls to rot in the fiery pits of hell. Seriously? Go fuck yourself. I have been a loving mom to endless amounts of birds (though I am actually afraid of them), hamsters, rabbits, a piranha and even a hedgehog. I love my dog more than I love anything on this earth. The compassion I have for them is the kind that would make you believe I physically gave birth to these furballs. I've been known to take an animal in even if, in all aspects of my reality, I could not. I did it anyway, because of the love I have for these babies. And yet, I am a heartless meat eating wench. These statements hold no real, valid argument. I equate it to any kind of judgmental "ism" there is out there. Racism. Fascism. Veganism. What's the difference?

Starbucks

This is like an exact play-by-play of my every day life. Yup, still at Starbucks. And it just gets more and more special as the days go by. People seem to think we're robots, or psychic, or just their personal slaves. Nothing's ever good enough, right enough or... hot enough. Like this one lady who requests her latte to be 200 degrees. When, first of all, the machine's temperature stops at 160. And we're not even allowed to make it hotter than that because then our safety is at risk. With all of that explained, she still wants it that hot. "I don't care if your hands shrivel up into a pile of ashes, I want my 200 degree latte!". At least she knows what she wants because most people don't. They call everything skinny, when skinny is a term that is only used on a handful of drinks on the Starbucks menu. They ask for a small, and when you give them a mezzo (tall, if you're anywhere outside quebec) they're like "No, I said small!". They want everything to be perfect, they want their food to be "fresh" (this might actually be one of my favourites...) Nothing at Starbucks is fresh. It comes frozen. The only reason we suggest for your pastry to be warmed in the oven is because it takes away some of the day old hardness. If you want to eat fresh, go home. The breakfast sandwiches come pre-made, so don't ask us if we can substitute the cheese for something else, don't ask me if I can remove the bacon, don't ask me if it can be made on a different bread. When you ask for something that is on the frapuccino board, don't frown at me when it is handed to you because you wanted a hot drink. If you're not even familiar with the products, why not ASK? In general, don't treat baristas like they are inferior to you. Actually, ANYBODY who is in the industry of servicing your needs should not be treated this way. Why would I want to do ANYTHING for you when you're acting like you're better than me. Even hobos act like I'm mildly retarded. #respectgoesalongway

Art

Lately my creative juices have been flowing- something that has not happened in, I'd say, almost a good year of pure, mind-numbing inability to get inspired. The media and what was thrown in my face didn't help much I suppose. With all these images of Ed Hardy, Jersey Shore and half-nude popstars, I was beginning to imagine that all class, beauty and talent had flown out the proverbial window of the world. But a couple of things brought my faith back.

I need to mention SyFy's new show "Face Off" first. It's a reality competition to find the next special effects make up artist, judged by the likes of Ve Neill (Edward Scissorhands, Beetlejuice, etc), Glenn Hetrick (owner of Optic Nerve Studios, and has worked on shows such as Buffy The Vampire Slayer, Heroes, etc) and Patrick Tatopoulos (director). I was hooked from the very beginning, as this is exactly the career that I aspire to have and very rarely, if ever, is it talked about and especially not in the spectrum of having its own show. I'm impressed.

Next, I have never purchased Women's Wear Daily magazine but it caught my eye this month as it was their 100 Year Anniversary issue. The cover itself is just phenomenal. Including everyone from Coco Chanel, SJP, Princess Diana, Jackie O, Micheal Kors and Beyonce, to Madonna, Donatella Versace, Iman, Carolina Herrera, and Linda Evangelista (inside flap). Needless to say the pages are filled with even more amazing and inspiring people and moments from the past 100 years. I will be flipping through this giant issue for the next few months for sure.

And, finally, Annie Leibovitz's brand new Disney inspired photos. You remember the ones with Beyonce as Alice, Jessica Biel as Pocahontas, etc... Well this new shoot includes Olivia Wilde as the evil queen in Snow White (a better choice could not have been made. She is an exact replica, amazing photograph), Penelope Cruz and Jeff Bridges as Beauty and the Beast and Queen Latifah as Ursula from the Little Mermaid, etc. Simply amazing.

girls girls girls

"through the looking glass"

"nerd is the word"

"why, hello thur"

self explanatory

Christmas '10

so much shit

4 days til Christmas... *sigh* I was sick all last week so I missed a week's worth of pay, which sucks, but I got a Christmas bonus. Sweet. "God" works in mysterious ways I guess. I still have a ton of gift shopping left to do and I really suck at this stuff. I'm the kind of person who always wants to come off thoughtful, rather than just shove any kind of gift in someone's hands. But maybe I let me thoughts get the best of me because it has literally left me down-to-the-wire, last minute, freaking out. I was about to head out and so some shopping right now but I figured I'd update this thing first. I was thinking today that I never make new year's resolutions, and that maybe this was why I always feel like nothing in my life ever changes. As Ghandi said, "we must become the change we want to see". I find myself able to quote Ghandi a lot when it comes to any kind of shit that actually matters in life. Go figure.

Anyway, I want to start today. Based on many things that have been happening lately. The biggest, most important thing I can think of at the moment is to be more aware and thankful of the people around me. Never think it's ok to not say even a simple thank you. To be able to apologize and be the bigger person, to be able to forgive. To ask them about their day, their life, their feelings for a change. Today a woman who is a regular at the Starbucks I work at baked us a cake. And I just thought that was such a simple but enormously kind gesture of her. She never had to do that for people who she doesn't really even know, but simply did as a thank you. She once complimented my eyeliner and I remember being slightly embarassed, just because I felt very on-the-spot and not to mention just generally surprised that someone was engaging in real, non-coffee-related conversation with me. It's sad to be shocked by an act of kindness because that really shows us what kind of world we're living in. So I really took that to heart and I am choosing to run with this information. Resolution 1, done.

holiday blabber

...been a while since I've updated this thing. And we're so close to Christmas, that's how long it's been. Speaking of Christmas, I've been poring through cookbooks and cooking magazines, racking my brains, trying to find something holiday-worthy to bake. I'm also set to attend an Eid dinner this Friday(for those unfamiliar with Eid: http://en.wikipedia.org/wiki/Eid_Mubarak) so I'm actually searching for 2 recipes.. each one being unique to it's respective celebration.

I'm honestly a bit more excited for Eid than Christmas. Christmas is a bit of a sore spot for my family, always has been. I've been noticing lately though that it's like this for more families than I thought. Or people in general. Some people really, really love it but a lot of people really, really hate it. When I was a child I could never imagine why someone would hate Christmas. Or how they could, rather. But I totally see it now. The (sometimes wasted) money, energy, etc that goes into planning the dinner, the gifts, the perfect festive atmosphere. The more people that become involved in your life, integrated into your family, the higher the stress level gets. Especially when there are people you aren't exactly fond of...

But anyway, I can safely say that what I am for sure looking forward to this holiday season is vacation time!

you'll never find nobody better than me

is there? is there?

remember me...

Nobody's Daughter

track listing:

01) Nobody's Daughter
02) Skinny Little Bitch
03) Honey
04) Pacific Coast Highway

05) Samantha
06) Someone Else's Bed

07) For Once in Your Life
08) Letter to God
09) Loser Dust
10) How Dirty Girls Get Clean

11) Never Go Hungry

Alright. So I've always been a fan of Hole. When I first heard Courtney Love was coming back with a brand-new Hole, I was kind of put off by it. I thought, just like many other critics, "what the hell is she thinking?". I never even took a listen to this album until now.. and all because one of the songs was brought to my attention and I was like, "that's the new Hole?". Not bad. I believe the song was Honey. It really caught my attention. The album as a whole has a bit of a sad and dark feel. You can tell it all came from a very raw place. You can hear her very honest vulnerability on the song Letter to God, which I suspect is about her battle with drugs. It's a very moving and haunting song. "I always wanted to die. But you kept me here alive. Please tell me who I am". "I never wanted to be the person you see. But, thank you".

There are rougher songs, which remind me of old-school Hole, like Samantha, Skinny Little Bitch, Someone Else's Bed. Subject matters ranging from prostitution to a girl who is taking on too much than she can handle. I find most of these songs take getting used to, and there are some I just don't really like. But I suspect I'll be listening to this album for a while, long enough for it to become one of my favorites.. along with the rest of Hole's material over the years.


update: *August 10-2010* After just a few short weeks of writing this blog entry, I've listened to Nobody's Daughter non-stop. And as for those songs I "didn't like"... I love 'em all now!

how much a haircut can change a person

these pictures were taken almost a full year apart. it's scary to me how different I look just by one simple haircut.