Life Update 2019

Happy 2019, although it’s the middle of February already. It’s been a hot minute since my last blog post… not!

I have gained a few new subscribers and followers, so if you are new here, WELCOME! And if you aren’t new here and have been following me for a while, you’re probably wondering where I’ve been for the last 2 months.

Well, my health took on a life of its own with the treatment I had in November, and it floored me completely.

So much so that I have decided to stop all treatment. I can’t begin to describe how sick I was and what my body went through. And don’t forget to add depression into the mix. I’m at a crossroad right now where we have to make a big decision on what my next steps will be.

Health: When your chronic illness completely floors you

Seeing that we had big plans to travel to London and Paris for Christmas, I just couldn’t bear the idea to be that sick over the holidays, which just added to my decision to take a massive break.

OUR HOLIDAY… What an amazing experience and time we had! I fell absolutely in love with Paris, and London was everything I have ever dreamt off since being a little girl. We had so much fun with our best friends. You can expect a lot of travel photos and posts coming soon.

Eiffel Tower, Paris France - The Blue Eyed Belle

So I thought I’d come on here to maybe just explain, although I don’t really need to as it is MY BLOG. hahaha!

But thank you for still sticking around. I appreciate every single one of you who reads and follows my journey. And I hope you had a Christmas filled with festivities and that your New Year started with a bang!

If you want to read more about my health journey, click here.

I also post on Instagram regularly if you would like to check out more photos or follow along, click here.

Until my next post.


It’s okay to not be okay.

Lately, I’ve been not feeling “okay”. It might have something to do with being in almost constant pain for the last three weeks or the migraines that randomly decides to pop up in-between. So I have just not been feeling all that positive.

the side of chronic illness you don't see on social media
It got me thinking. There seems to be an epidemic of everyone needing to be positive 100% of the time. My Instagram and Facebook (I like to think) is a place of positivity, kindness and love. Well, I try.

But that doesn’t mean that I’m okay 100% of the time. Or that I’m about to burst into a sing-song at any moment. Or that I have a smile permanently affixed to my face. We all have down days, down hours, down weeks and even down months.

I often wonder what it would be like if Instagram or Facebook REALLY showed the realities of life. Or social media in general.

Because if so, it would showcase the hormone-induced snotty comments I get when I’ve had a really crappy day and then snapped at my hubby because I’m moody and in pain. It will show the millions of medications I have to take, and how weak I am some days.

I get it, it’s easy to be a person on the outside, making assumptions. I’ve been there and am still there to some extent. We see what’s in front of us and put on social media and formulate our beliefs based on our observations. It makes logical sense. However, when we judge the surface without understanding what’s going on inside, we fail to grasp the full picture. 


the side of chronic illness you don't see on social media

Every single week I have other people make observations about how I look and then formulate opinions about how I must feel.

They then go on to tell me how I must be feeling based on my appearance. Some days, they are correct, but a majority of the time my outer being doesn’t begin to express the pain beneath it.

I try to brush it off because I’m sure most people mean well. But, it’s not that simple. The neurological symptoms of having a body that fights itself have left me with crippling anxiety and depression. I get so anxious about what other people will think that I sometimes lie to them. I tell them I’m feeling okay because those are the words they probably want to hear and this eats me up inside because I believe in honesty.

the side of chronic illness you don't see on social media

I honestly try (try being the big word here) to share more on social media and through writing my blog because I want to bring awareness to AutoImmune Disease and other chronic illnesses. Because before my health took a major decline, I was completely naive too.

So, What don’t you see when you look at my social media?

→ You don’t see the pain that makes me crumple up in a ball on the bed.

→ You don’t see he migraines and headaches that occur almost every week.

→ You don’t see the insomnia – being unable to fall asleep where I can go for more than 24hours without sleep, or even waking up in the middle of the night and being unable to fall asleep again.

→ You don’t see the weeks on treatment where I have to take 20+ pills a day. It’s a lot of work to survive through those weeks.

→ You don’t see how cold my body is all the time. Unless you know me and know that I constantly have my electric blanket on in bed.

→ You don’t see a lot actually. I wish I could let you live in my body for just 24hours to truly understand this rollercoaster.

One of the worst things is how fast symptoms can change.

Unless you are close to me, you probably don’t know me well enough to notice this. But the symptoms change quickly. I can get up in the morning full of happiness and think it’s going to be a great day, only to find an hour later that I’m in pain and want to vomit. My moods change quickly too.

My point is, everyone on social media looks like they’ve got their shit together, but most of us are just as muddled as the other.

Some people are just better at pretending they have their life together. Trust me, even the most gorgeous, glamorous Instagrammers still have stuff going on in their seemingly flawless lives that all of us are dealing with too.

I share this and the side that you don’t see because some people tend to make assumptions from a person’s “highlights reel”.

We should all remember that there’s more beneath the surface. Outer appearances only tell so much. You don’t always have to be your perfect self. Or an all-singing-all-dancing smiley creature.

It’s okay to not be okay all the time.


You can read more about my health journey HERE.


Just a Reminder…

I needed this reminder yesterday… And thought some of you might too. ♥

Just a reminder /autoimmune disease/flare up/herx/


Some days it’s just hard to hide the fact that I am devastated by this illness. I think one of the worst parts is that you can have several bad days in a row, and handle it just fine. Then one day you lose it because you’ve gone so long just handling it that you eventually get to a point where you just can’t do it anymore.

But after a day of grief, you pick yourself up again and start anew. Tomorrow is a new day. ♥


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 and concerts too. All the things that make my heart beat faster.

The Blue Eyed Belle 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. Although I’m not permanently wheelchairbound, I do need one for rough crowds and when we need to walk far distances. 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! ♥

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.

Goddess Revolution #1 Body Confidence

It’s no secret that I battle with body confidence.

Body Confidence

Having an auto-immune disease, it’s not easy to not feel betrayed by your body. It is something that I’m trying to get over. And I have made a point to remind myself that this body (ill or not) is mine, and will be mine till the day I die. So I want to start loving every part of it. From my boobs and butt to the more hardcore stuff, like all the scars too. Because every scar, big or small, tells a story of what I’ve been through and how far I have come. Loving the parts of you that are considered unconventional or unattractive is undoubtedly an act of rebellion. You are not meant to be perfect. There is something so beautiful about a lady that loves herself. And I’m lucky enough to have said bad-ass girls as my friends who inspire me each and every day. There is beauty in being carefree enough to embrace the same things society told you not to.

So I asked my girls what they loved about their bodies, what gives them confidence and why every woman should embrace her body… Here’s what they had to say.


Lizle Van Der Westhuizen


I appreciate my back. It’s out of sight most of the time hahaha! Honestly, I would have to admit that I think overall I am not too badly built. I can gain weight fast and also lose the weight just as fast.


Looking neat and well dressed. Along with some makeup. Confidence for me means going into a room and just being myself. Good looking hair and a smile goes a long way along with inner strength to say how you feel no matter who or what you need to face.


Loving yourself first means you are able to love others and accept all their mistakes. Hating your body can be a temporary thing. All women of all sizes have the ability to change their appearance, the only thing that really needs to be changed is the mind and willpower. Starting a diet without willpower is bound to fail and this statement goes parallel with all addictions and difficulties that women have to deal with. It’s harder to judge another person once you place yourself in their shoes.


Tiffany Prinsloo 


Definitely my eyes and hair. I’m lucky I have really big eyes and long lashes and my hair does what I want it to do. Blessed.


Music. Listening to powerful women like Beyonce or Fergie some of their music make me feel fierce… haha!

Gym. Walking out the gym after just killing a workout, lifts my spirit instantly.


It’s the only one you have, you can’t swop it or trade it, you have to learn to love who you are and be comfortable in your own skin. How boring would the world be if we were all the same…



Tanya McGeer


This is quite a difficult question to answer. I think there are some women, like myself, who find it difficult to say what they like, or in this case, love about their bodies. The one thing I do like about myself is my hair. I have curly hair so I can do whatever I like with it. If I want to make a messy bun – yay, if I want to braid it – why not, if I want to straighten it – go right ahead. My hair is very loyal! It will never let me down!


The different types of clothes that I wear. I’m not much of a makeup lover, but if I feel good about what I have on that day it boosts my confidence quite a lot!


The thing is, women are made to believe that they are not allowed to say: “I am beautiful”, otherwise you are seen as vain or self-absorbed. Society has made us believe to only see the negative things about our bodies and personalities, in general. It’s a difficult thing to tell somebody to love the body that they are in because I think everyone, male or female, has something that they wish to change about themselves. The important thing is: one should feel comfortable in the body that one is born in. That is quite a tall order. But, to be comfortable in your body – to love your body, you should accept the person you are with all of its flaws and imperfections. Only then will you be truly happy!


Wanda Koekemoer


I love the fact that I’ve made peace with it. Having to walk naked past a mirror every day for a month seems to soften the eyes. Now I just do maintenance for my old age, bit of pilates here, bit of mountain biking there …(some sushi..Ed’s diner burgers….pizza….*thought bubble*)


I have a big bear that constantly tells me I’m beautiful, or that the outfit I chose/ hairdo looks good on me. (Lack of confidence makes me stare at him in disbelief, but I’m happy that he feels that way about me. It’s slowly building my confidence)


Because..who cares, everyone is different. Everyone has something unique to them. There is more to you than your body..unless you’re a skinny model (I’m stereotyping..sorry :P). As long as you have people in your life that compliment and support you (each other), who cares what the rest of the world thinks. They probably have lots of things hidden in their closets which they should rather deal with instead of wasting their time gossiping about other people’s bodies.

Sune Bissett


My lips. Like many young women, I’ve struggled with body confidence issues, so I decided to focus on my stronger features instead.I love the shape of my lips.


The amazing women in my life. We support each other in many ways, especially when we need reminders that we are not as simple as our reflection or the number on the scale. It’s easier said than done, but the love and support of a dear friend do wonders. I also love dressing up wearing lots of perfume and lipstick. It’s just something that makes me feel good


I am almost 24 and the struggle continues. Often I have to remind myself that being happy and healthy is the only thing that matters. I am not 100% there yet, but I plan to be. Constantly comparing yourself to supermodels and hating your body is very exhausting. Learn to love your body and set the example for others.

“Let me ask you something, in all the years that you have…undressed in front of a gentleman has he ever asked you to leave? Has he ever walked out and left? No? It’s because he doesn’t care! He’s in a room with a naked girl, he just won the lottery. I am so tired of saying no, waking up in the morning and recalling every single thing I ate the day before, counting every calorie I consumed so I know just how much self-loathing to take into the shower. I’m going for it. I have no interest in being obese, I’m just through with the guilt. So this is what I’m going to do, I’m going to finish this pizza, and then we are going to go watch the soccer game, and tomorrow we are going to go on a little date and buy ourselves some bigger jeans.” –Elizabeth Gilbert – Eat, Pray, Love


Madelein Ackermann


To be honest, I’m not quite sure. I’ve always struggled with body confidence too! Being the “chubby” friend means you’re always wishing you were prettier and skinnier…like all your hot skinny friends…

But it’s my body, no one else’s. It’s healthy and everything works as it should…except my brain…sometimes it takes weird twists and turns. I’ve got pretty green eyes and always get complimented on them.


Feeling pretty…wearing a new scarf, my favourite perfume or trying a new hairstyle.


Work with what you’ve got, we can’t trade in our bodies for a newer model. We are wonderfully and fearfully made, believe it!


Nadine Conradie


The thing I love most about my body would most definitely have to be my cesarean scar. After a routine checkup with my gynecologist in December 2015 I was informed that I have high severity abnormal cells. Being a healthy 28 year old this was not something that I was expecting at all. In January 2016 I had to undergo an operation where they were going to remove the abnormal cells, however, after the operation, the gynecologist informed me that she was unable to remove all the cells. As if that wasn’t enough, I was told that if the abnormal cells are still there by December 2016 they would need to do a full hysterectomy as the abnormal cells would turn into cancer. This meant, if I ever wanted kids, I had to do it now. Even though I was not married, I was in a loving relationship with someone who wanted kids just as much as I did and we didn’t even think twice. We knew that we were racing against time and immediately started trying. After about a month our prayers were answered when I learned that I was pregnant. I got a lot of flack from a lot of people as I was not married, but to this day, I will do it all again. I have been blessed with a beautiful baby boy, and no matter how many scars, stretch marks and extra weight I gained, I would do it all again in a heartbeat. The scar that I have that most people would consider hideous or disgusting is a constant reminder of everything that has happened and how God has blessed me beyond measure.


Hearing the man of my dreams tell me that I look beautiful while I am sitting on the couch with my hair in a bun and no makeup really makes me feel good. I have to admit that a nice pair of stiletto’s also does the trick. No matter how bad my day is going, if I put on a pair of high heels I immediately feel prettier, more powerful and ready to take on whatever life throws at me.


Social media paints this picture of what we should look like to be beautiful but I call bullshit. If we take a second, and turn to the important people in our lives we will see that we are perfect the way we are. I have spent thousands on extensions, beauty procedures, makeup and skin care and all types of stuff seen on social media as I also wanted to be considered beautiful, when all along, my significant other considered me beautiful without any of those things. Women come in all different shapes and sizes and in my eyes, any women, no matter her race, age, weight or height is beautiful. We just need to learn to embrace who we are.



Mieke Botha


My eyes most definitely.

They have always been the part of me that helped me cope with being an extremely self-conscious person, due to having rosacea. Making eye contact and holding my head up in public was always a thing that I had to pay extra special attention to, especially when listening to people or friends otherwise I would come across as rude or uninterested. I hated people coming close to me or invading my personal space because that meant that they could see my face more clearly. But… After realizing that no matter with what skin dilemma I wake up with, I do have beautiful eyes, and it really helped me cope with being more confident and sociable, knowing that there still is something to brighten up my face. They are a daily reminder to me, that even though we don’t always feel beautiful, it is our inner beauty which will still shine through. After all, the eyes are the windows to the soul.


A thing that has always given me that extra boost is feeling extremely fresh and wearing perfume. I have always admired people with clean hair and nails, good breath, and smells great. Therefore it always makes me feel comfortable and confident when I just had my nails done, my hair is looking healthy and shiny, and I’m wearing my favorite perfume (DKNY).


I know that a lot of people say this on a daily basis, but I believe that more women should be comfortable in their own skin and bodies because it has become such a challenge especially in today’s time with advertisement and the internet. It is such a great motivator and example for me when I see a woman being completely comfortable with all her imperfections. She could be overweight, underweight, she might have terrible acne or no hair. It’s as if in that moment when they aren’t aware of themselves or overly focused on their flaws, other people also pay less attention to her flaws and what she’s actually saying. It is much easier said than done, but I learned through experience that faking it till you make it is something that can help you learn to feel more comfortable after realizing that it’s not so bad to be your vulnerable self and that other people aren’t as judgemental and terrible as we are towards ourselves. You will also immediately see a difference in how others start to treat you, not only because you look prettier, but also when you become more vulnerable and comfortable with yourself, others automatically start to become more comfortable around you as well. I am always so thankful to see other women being comfortable in their bodies, despite their flaws, because it shows me that I can also look beautiful without feeling the need to cover everything up.


Jacqueline Bosch


Well if you see me, you will think I’m a perfect number… but yes like every girl, there is always something I find wrong with my body… Well, that is what every girl really thinks… But not every man thinks that.  Even if my body is so skinny and looks pretty… it’s not always the coolest thing because when you start buying close and you release that you (at the age of 30) still need to buy clothes from the kiddies section at department stores, it’s kind of depressing…. well the question is still what I love about my body… I must say it must be my stomach and my hair… Mostly my hair… I can change the colour and whatever colour I change it to I still look pretty… for myself.


When someone gives you a compliment, that’s when I get that extra boost of confidence… a positive word is always good for your soul.


After reading this, how can you not feel inspired? This certainly inspired me!

I decided that GODDESS REVOLUTION will be a monthly feature, where we will discuss some of the hardcore issues women face today and answer some fun questions too. I hope you enjoy it just as much as I do.


Body Confidence / Confidence / Health / Mental health / Love your body / no body shaming

, ,

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.