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Get to know us & Life update



It’s been a few months since the last time I posted on the blog. Life just happened. There’s no other way to explain it. My husband changed jobs to a better position and I quit mine. I’m on treatment every single month now. I am a bit weaker since I skipped some treatments. (No more skipping every now and again just because I’m not in the mood for it or scared to take sick leave from work.) I’m also studying again too. I finished my Fashion Styling courses and I’m now busy with Fashion Illustration. Life was a bit on the hectic side and depression is a big fat nasty bitch. But I’m back to blogging again.

So no blog is complete without a little “Get to know Us” post. So sit back and read our answers to some silly questions we found on the internet. You might just really get to know us a little better.

How many kids do you want to have?

Him: 2 will be cool

Her: I’ll also like 2… Twins will be awesome!

Bushveld or Beach?

Him: Bushveld

Her: Same. I’m not a big fan of the beach.

What’s the first thing you do in the morning when you wake up?

Him: I put the kettle on to make us coffee. Every. Day.

Her: I greet our dogs and then drink coffee haha

What’s the best concert you’ve been to so far?

Him: Wow, there’s been a lot… Metallica has to be my pick.

Her: Yes, going to as many concerts as possible is our thing. But Rammstein and Metallica are my picks. I can’t choose between the two! It’s like choosing a favourite kid/pet. Foo Fighters and Iron Maiden was mind-blowing too. On to the next question. This one is difficult to answer.

What is your favourite TV series?

Him: Vikings

Her: The Walking Dead and Game of Thrones. Why can’t I just choose one? I see a pattern here…

Where were you born?

Him: Moedersbond Hospital in Pretoria haha that was really the hospital’s name

Her: In Kempton Park Hospital now known as the “Ghost  Hospital”

Grab the book nearest to you, turn to page 21, and find line 9:

Him: “Mainly he learned by playing along to skiffle groups.” LEMMY

Her: “And while Coco laughs along with the rest of them, something experimental and impulsive in the music chimes with her sense of novelty in being here.” COCO CHANEL & IGOR STRAVINSKY


What is currently your top 3 favourite apps?

Him: I don’t really have a favourite. Apps don’t bother me.

Her: Rain Rain (for the sound of thunder and rain when the sun has been shining too much), Instagram and Covet (a fashion game).

Would you rather meet an alien visitor or travel to outer space?

Him: Easy… Travel to outer space!

Her: Can I choose both? haha! I would like to travel to outer space, but I’m Claustrophobic and the idea of being “trapped” inside a spacecraft is kind of scary. So until I conquer my fear, I’ll go with meeting an alien visitor.

Favourite Perfume?

Him: Juan Paul Gautier

Her: Coco Chanel Chance

Weird Interests?

Him: Gory videos, with blood and sometimes death too. This is gonna sound worse than it is…

Her: Conspiracy Theories. I can get sucked into the dark side of the web real quick.

What quote do you live by?

Him: “Wanting to be someone else is a waste of the person you are.” a quote by Kurt Cobain that I’ve always lived by.

Her: It is what it is… It’s actually a quote from my husband’s BFF, Rob. He says this pretty much about every hard situation in life. It is what it is…. And it just stuck. Whenever I feel down about something that happens in life, I try to see it for what it is and move on. (Thanks for teaching me that Roberto. xx)

It was kind of weird going “with the trend” of a get to know us blog post. I specifically don’t usually go along with trends, but this was fun. Especially doing it with the hubster.

What would your answers be to some of these questions? Tell us below!

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This Body Holding Me

This is not an easy post to write… If you know me, you’ll know that my illness is not something I talk about openly unless you ask me. I don’t really know why. Maybe I feel vulnerable. Maybe it is because I hate pity. Or maybe it’s because I know not a lot of people wants a sick friend, which is fine. And I also think I still have trouble just accepting. It is not easy to have this overwhelming feeling of your own body betraying you.

It all started when I was about 14 or 15. I remember coming home from hockey practice and I could not stay awake. I was so tired. I slept from 3:30 the afternoon till the next morning. And I would still feel tired. Then the vomiting started. I could not keep anything down. My mom took me to the doctor and he diagnosed me with yellow fever. The first of many misdiagnoses. The vomiting continued. And I remember my mom stressing that this could not be right. I was vomiting up to 7 or 8 times a day. And the medication the doctor gave me, did nothing.

I was told to go see a specialist for some test. “Some” being an understatement. They concluded that my CPK level was 26500. More tests followed. I remember one of the tests included big needles being stuck into my legs straight to the muscle and nerves system to see if they are affected too and how much. A lot of operations followed too. The point being they could never find the cause.

They started treating me for Dermatomyositis (a skin and muscle disease). The first treatment was Cortizone. In pill form, in drip form, in any form possible. I went from weighing 55kg to weighing 90kg in just 3 months. I don’t even think there is enough writing space here to even begin to describe what that did to my body. I was in the hospital every month for almost a year. All the treatments and medication made my immune system weak, so I couldn’t fight off any bacteria or infections.

The worst I can remember was being in the hospital and they could not find any veins to give me a drip. They poked me 9 times. In this very same hospital stay, they did blood tests and somehow my lungs were not functioning like they should. Meaning my body and brain weren’t getting enough oxygen. I wasn’t really conscious for the most part, but I remember seeing my mom cry and a flood of nurses taking my bed somewhere. I woke up in ICU, with machines helping me breathe. People weren’t allowed to bring any germs near me so everyone had to wear those hospital masks.

By this stage in my illness, I don’t even remember all the medication I have been on or how many operations and test I have had.  But through this all, my CPK did not change much.

By the time I turned 18, they recommended I start receiving Chemo. This was not a joke anymore. And I remember feeling like, if I want to live, I have to do this. Chemo is not for the faint at heart. This is something I will never wish upon anyone. Not even my worst enemy. No one deserves this.

How do I even begin to explain what it feels like? I don’t think there is a way. I remember crying and throwing up a lot. I remember the smell of anything making me sick. The smell of someone’s perfume, the smell of food, the smell of ANYTHING. Even sounds were too much for me. People laughing or just chatting, people whispering, the sound of cars on the freeway, the sound of the tv. I was on chemo for 2 and a half years, when they told me that it too, like everything else, is not working. They wanted me to get a bone marrow transplant. They sent me home and told me to think about it. This right here, was where I gave up. I wanted nothing more. And I refused to go back.

I was stagnant like that for about 3 years of my life. I had my good days and my bad days.

I was convinced to go see some of the world’s best specialists. As everyone around me has not given up hope like I did. They were fighting to keep hope.

I went to see a specialist from Washington, DC. He was here in South Africa for a week, and he sometimes sees people too. He too, like 8 or 9 before him, told me that I will die because of this illness. I might have a long life, or this illness might take over and progress really fast and I might die soon.

Yet again, I gave up. I was done, and I refused to see any doctor or specialist again in my life.

Until one day, a few years later, my boyfriend then (he is my husband now) and a few family members, convinced me to just go see this one last specialist and they will never bother me about it again.

She did some hardcore tests. And found that I have certain bacteria in my system. Most people are immune to those bacteria, but I wasn’t. What happens is, my body picked up this bacteria somewhere, (possibly a tick) and if I was diagnosed sooner, I would have been healthy by now. Doctors these days treat your symptoms and are not finding the cause of what is wrong. But because it went untreated for almost 9 years, the bacteria took over a lot of organs in my body. The bacteria made my muscles its home. Hiding there. So my immune system attacks my muscle group, trying to fight it. This in return, releases a toxin that places a lot of pressure on my liver, giving me an enlarged liver too. She’s been treating me for a while now and my CPK is the lowest it has been my entire life, 4295. Normal being between 10 to 120.

This disease has brought me to my knees. There are so many nights where I wished to die and prayed that this pain will be over. But Life has different plans for me. And for now, I feel motivated to face everything the world will send my way. I’m stronger than I thought.

For the people not understanding what your CPK levels means: Creatine Phosphokinase is an enzyme in the body. It is found mainly in the heart, brain, and skeletal muscle. When the total CPK level is very high, it most often means there has been stress or injury to the muscle. Extreme muscle breakdown floods a person’s blood with CPK and additional chemicals and toxins. Some of these are toxic to a person’s kidneys and liver, making the condition life threatening.

If this illness is left untreated, it could cause heart, lung and kidney failure.

And for the people wanting to read more about this disease, wanting to check out my amazing specialist or the Carte Blanche episode she was on, click HERE.

This is basically what I have been through the last 15 years of my life. And to those who really do care, I appreciate you more than you’ll ever know. Sticking to my side and just being there, has kept me going on more days than what I care to mention.

This body, this body holding me
Be my reminder here that I am not alone in…
This body, this body holding me, feeling eternal
All this pain is an illusion – Tool (Parabola Lyrics)

One of my Best Friend’s favourite songs that she played to me.