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Why I Blog

I always wanted to blog. I can remember starting to talk about it back in 2008. But I never had the guts. “What if people think I’m stupid”? was one of the things that came to my mind a lot. The other reason I was scared, was because of time… (yes it is time-consuming) But I was scared that I might not have felt up to it after treatment or a random flare up. But I’m so glad I started this blog.

I have always wanted to journal my life. I have at least 5 empty journals in my study right now to prove my good intentions. I just don’t want to forget all the good stuff, and I want to remember all the bad stuff too, to be honest. I want to read back in a year’s time and see that I overcome certain things that tried to knock me over.  I want to remember it all…to reflect on it, to share it, to keep it close to me. And I want to remember all the travels, laughs, good food and concerts too. All the things that make my heart beat faster.

Why I blog

When I played around with the thought of blogging some more, I thought that I will blog about all the fun stuff, and leave out anything and everything about my illness. But that would have been fake as it is such a big part of my life. Whether I like it or not. So I made the decision to include it. Every raw detail of every step of my life. And I’m so glad that I did because the feedback I got blew me away.

A lot of people asked me how we travel so much and go out so much while dealing with an illness too. And I just never made it an option in my life. I never gave myself the choice to sit back and let life slip away. I took it as it was. I wanted to live my life as normal as possible and I’m sure I can say that I almost succeed.

I got asked how we take a wheelchair everywhere we go as a lot of people are under the impression that when you make use of a wheelchair that your world becomes smaller. And I want to prove them wrong.

I want to show that you can go almost anywhere and still do almost everything that healthy people do.

I also want to blog to raise awareness. To show the censored side of what your own body can do to you. To show and enlighten people about what treatment does to you.

I want to blog to give hope to those who no longer have hope. To show that you can travel, eat, go out and have a good time with friends while battling for your life too, and still smile.

Positivity is a choice.

I haven’t been blogging very long, but I hope that I have the opportunity to do so for many years to come. I wouldn’t have had come this far in life without my hubby who supports me during every second of it all.

Thank you to every single person who read my blog. Thank you to those of you who send me inbox messages on social media telling me that I inspire you. You guys make all of this worth it! ♥

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17 Things I learnt in 2017

As 2017 comes to an end, I can reflect on this year and just how quick it flew passed me. Still, quick or not, there is always something I can take with me into the next year. Some things that I learnt.

“Smart people learn from everything and everyone. Average people from their experiences. Stupid people already have all the answers.”

Here are 17 things that I learnt in 2017.

  1. If you ask someone how they are doing, do it with the sole intention of genuinely wanting to know how they are.
  2. You don’t know everything.
  3. Be kind to animals and people older than you. Always!
  4. Nobody knows anybody completely and that’s okay.
  5. Be gentle, but be aggressive. Take a stand for what you believe in.
  6. Accept Help…
  7. When in doubt, wear black. Black will always make you feel better about yourself.
  8. Always give tips. Whether it is a couple of extra Bucks to the waiter or a piece of mind to a friend. You never know how much you could be helping someone.
  9.  A good skincare routine is not a luxury, it is a necessity.
  10. Nothing worth having comes easy and life doesn’t give handouts.
  11.  Everyone has days where they don’t want to get out of bed. And it’s good to listen to your body on those days.
  12. Your body is merely a shell. Look after it. Decorate it. Keep it healthy. It is up to you.
  13. Don’t hold grudges. Don’t allow yourself to hate anyone. Forgive them. Wish them well. Hating someone only harms your own heart and soul.
  14. I have amazing friends!I always thought I was terrible at making friends. I convince myself that everyone won’t like me before they’ve even met me. What you do need though is good people and I learnt how fortunate I am to have the girls I have in my life already. The girls who knew me when I was even more embarrassing than I am now. The girls who have been there despite me not having a great social life due to my health but still messaged me every weekend just to check in.

    I realised that my heart is full and my circle is amazing.

  15. Don’t allow the opinions of others to choose your destiny.
  16. Sorry… It’s hard to say it but it’s even harder to accept it and move the hell on.
  17. Live for yourself. Breathe for yourself. Do everything in your life for nobody but you. This is your life. This is it

 

 

Writing this was incredibly therapeutic.

Thank you to everyone who religiously read my posts and who supported me on this journey. I hope 2018 brings you joy and happiness to your heart’s content.  Happy New Year! xxx

Herxing… Say What?!

So a lot of you may be wondering what that weird word means. I remember the first time I heard of it was when I read an article about the treatment I was receiving. I was never a person to google any medication or the side effects of said treatment and medication. I don’t feel the need to, as I take it as it is. I need the treatment, so why scare myself into something that may or may not happen while I am on treatment.  But when I came across the article about Herxing, I finally knew what my body was going through.

So let me explain.

People who know me know that I always get sick when on treatment. And some of them are under the belief that it is just the side effects of said treatment. But in reality, that’s just the tip of the iceberg.

Herxing is also known as Herxheimer Reaction. Herxing occurs when injured or dead bacteria release their endotoxins into the blood and tissue faster than the body can handle. This creates an exaggerated response from the body and this treatment can be nearly just as harsh as the illness itself. This can start almost immediately after the medication is taken.

 

All you need to know about Herxing

Essentially, the body is trying to get rid of the released toxins much faster than it is able to. The bacteria also live inside the white blood cells and killing these bacteria through treatment also results in the death of the host cells. In turn, the immune system releases a response to everything that’s going on inside the body. This is especially rough on my liver, which is a storehouse of drug and poison residues.
The more severe the infection/illness the more severe herx symptoms are likely to be. But this is not such a bad thing. A lot of people may think that feeling extremely bad is a sign of the antibiotics’ side effects and then stop taking the treatment. When in fact, it is a good sign in regards to the amount of bacteria it kills off. Yes, you suffer a great amount for 7 days, sometimes a week after that too. But pushing through is just something I keep my focus on.
Some of the symptoms that I have personally experienced:
  • Migraines
  • Muscle and Joint pain: this is a hectic one to endure because I normally have muscle pain on a daily basis but it gets a million times worse during treatment and the week thereafter. 
  • Weakness: Like I need more of this, haha!
  • Dizziness: To the point of feeling like your about to pass out.
  • Short-Term Memory Loss: I started noticing this when I wanted to tell my husband something and he replies with “you already told me this”. It was so scary to notice that there have been days that I only remember waking up and going to bed. Nothing in-between… I haven’t told a lot of people about this one. 
  • Night Sweats: Waking up and feeling like I got out of the shower. But I’m freezing cold… 
  • Chills/Feeling cold all the time: I have my electric warm blanket on my bed through the whole year, and switch it on when I need it. 
  • Metallic taste in mouth: I have no way of even explaining this one.
  • Vomiting
  • Sleep Disturbances
  • Fever
  • Heart Palpitations: I hate this one. I get scared when this happens. 
  • Uncoordinated Movement
  • Pain in Neck and Shoulder Blade Area: This is also very painful. Think along the lines of being 6, growing up with a sibling and having that fight where you hit each other with a fist and they knock the wind out of you… hahaha! Can’t think of a better way to describe it.
  • Emotional: My emotions go crazy. If I’m angry I’ll probably overreact and snap. Commercials make me cry. You get the idea.
  • Extreme Tiredness
  • Sinus

How to detox from a herx

 

Usually, I try to take a really warm bath and I add some Epsom Salts too. I drink water with a few slices of lemon. Resting as much as I can, which consist of staying in bed. I have also heard that drinking Indian Tonic Water helps a lot. My Specialist advised to always eat a big meal before taking those strong antibiotics, even if I feel nauseous. One of the things I do when I feel that it becomes unbearable is to take a pain tablet with half a sleeping tablet and also having my electric blanket on, then taking a long nap. And on some days, after a few minutes of begging, my husband will massage my sore muscles. Some people have recommended that relaxing inside a steam room will also help flush out the toxins from your system. Mostly there isn’t anything you can do to avoid it, but doing these small things can make a difference.

I wish there was a better way to explain this. But there really isn’t. And at the end of the day, hopefully, this helped at least one person understand the whole I’m on treatment and feeling horrible saying.

As a human being fighting this battle almost every day of my life, I ask you to join me in making a kind gesture to someone every day, because everyone you meet is fighting some battle you know nothing about. Educate yourself and remember your kindness goes a long way. Together we can make a difference.

If you are new to my blog, you can read my full story HERE.

Dear Depression

Dear Depression

What better day to write to you than World Mental Health Day.

I don’t think I remember the first time you paid me a visit. As I never really thought that it was a big deal. I always thought that I will be able to deal with it. Little did I know that it can and will be life-changing.

I do remember when you paid me a visit at the end of 2015 and almost the whole of 2016. Like a dark coloured dust cloud, you blew into my life and covered everything I thought to be beautiful, that had meaning to me, in a black dust. Nothing was beautiful anymore. I struggled to see past the blackness of it all. You made me feel worthless. Like I was somehow a waste of space on this earth. You made me believe that everyone around me felt the same about me too. Like nothing I will ever do will be good enough. I hated myself. I shut myself off from everyone that cared for and loves me. Scared, because I didn’t know what to say or how to act normal. I didn’t want them to perceive me as broken. Or well, more broken than what I already was. I felt tired to pretend to be okay. When clearly you took everything from me and made it black. Dark. Useless.

I wanted to scream. And I wanted to give up on so many occasions. I missed the old me. The happy me…

Although it feels like all I’m doing some days and weeks even, is to keep my head above water. Not to drown. Almost like I’m barely surviving. I still have days where I want to curl up in bed and just cry.

I can hear you knocking, pushing and kicking at the door. Trying to make your dark dust my home again. And every single day, I will push back. I will fight you! I’m scared that I might not be strong enough one day and that you will win. I’m so scared that on some days I struggle to have a normal day.

But listen here depression, as 2017 almost comes to an end, I am still standing here. I am not worthless like you made me out to be. I am a warrior. And I will fight with everything I have in me to never fall into your dark dust cloud again. I am determined to lose you forever.

Depression and anxiety doesn’t make me weak! Far from it actually. I’m stronger because of you!

I have very amazing people in my life, and you will never make me doubt that again.

I very well know how this could have turned out if I have let you win. You could have made me give up on life. And I almost did. But I will keep on fighting you.

And for now, I’m winning!

So please fuck off. 

From the person, you thought you had power over.

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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.

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Our Beautiful Wedding

What better way to start off my very first blog post than our wedding day. Today, 3 years ago on 14 February 2014, I married my best friend and soul mate. We got married at the beautiful Red Ivory Lodge in Hartbeespoort.

Because we love music so much, it was a no-brainer that we wanted to incorporate that into our big day.  Our tables had band names instead of table numbers. And our first dance was to Metallica’s Nothing Else Matters.

There is absolutely nothing I would’ve wanted differently. I got to marry a bearded hottie and everyone we love celebrated with us.

All photos by the talented wedding photographer Adam Hilton.