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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.

10 replies
  1. Rob & Chris
    Rob & Chris says:

    Wow! What can I say chick! You are simply Amazeballs! We love you as you are, you say people don’t want a sick friend, which is fine, but to us you are so much more than that! You have surpassed the “friend” phase and while in some scenarios “stepping out” the friend zone is a bad thing, just know we will, have and continue to be more than that! We are family, we are there for you, there is no need to feel alone in this journey! Together with your awesome (sometimes nutty, Ok, mostly crazy) hubby you have so much to live for! We love you Rels. Thank you for sharing this amazing story! We look forward to hearing more of the journey to recovery and can’t wait to see and spend time with you again! Chin up chick! WE……LOVE………YOUUUU! Xxx

    Reply
  2. Mieke
    Mieke says:

    What an incredible post! What an amazing and wonderful person you are despite all these things that I’ve just read about that you’ve gone through… Relene, I definitely underestimated what you’ve been through, and even before this I always saw you as an inspiration. This is not for the faint hearted, and thank you for never giving up. Keep up keeping it up????

    Reply
  3. Vicky
    Vicky says:

    OMG ! What an inspiring story and I am beyond blessed to know you as a person. We grew up together ! YOU are the strongest WOMAN I know ! You are amazing. THANK YOU THANK YOU THANK YOU THANK YOU for having the guts to write about this! It could not have been easy. I am so very very proud of you ! You are an inspiration to me ! What makes this so touching is despite the fact that you have been through HELL and back, you always smile ! Your always the life of any party ! I love you so much ! Thank you again for posting this ! xxx

    Reply
  4. Rozelle
    Rozelle says:

    You are beautiful and amazing!! You are my inspiration. Don’t lose hope. We will always be there for you!!
    Love you
    Mom

    Reply
  5. Jacqueline Bosch
    Jacqueline Bosch says:

    To my Best Friend,

    I look at our friendship as a blessing. I don’t know how I would have made it through these last couple of years without your support, your courage, and your love. I thank God every day for sending me such a special friend. Without you this world would be nothing. You have been there for me unconditionally. You never questioned me, you have always supported me no matter what. You are one of a kind that is definitely worth living for. If I could give you one thing. I would give you the ability to see yourself as others see you. Then, hopefully, you would realize what a truly special friend you are.
    “Friends”, a simple word isn’t it? Who are your friends? I use to think friends were people you could laugh and talk to. Now I know that friends aren’t just that, they’re people that touch your heart. You could spend hours with them doing nothing at all, and it can be the best time in your life, just because it was them. They’re the people you can share you secrets with, cry with, laugh with, and just have fun with. They don’t judge you or make you change. They accept you exactly as you are. They look at you and see you as a great person, one they love spending time with. You all share something in common and are tied with memories, tears, laughs, and smiles. You’re tied together by love for the other. I find the time with my best friend, the best time of my life. She is my heart, my soul, my fun, my laughter, my tears, my love and my life. I thank you so much for being a special friend to me. And this letter just remind me why you are my special friend… thanks for share this with me and the world…
    Love your friend,
    Jacqueline.
    xxx

    Reply
  6. Celestial B Purposed
    Celestial B Purposed says:

    WOWZERZ!!! What a testimony of strength, endurance, patience, pain, and survival. I am sorry that you had to deal with so much pain but I am EXTREMELY happy that you were able to find some relief and live a life, that the doctors believed you would not have. This is a great story on how to LiveFree and LoveOnPurpose.

    Reply
  7. Made Adayasa
    Made Adayasa says:

    I couldn’t say anything after reading your post . You are such an amazing and strong girl . God bless you . I’m sorry I can’t create more words to comments your story but I will love to follow your post . You inspiring me personally and for sure to each persons you read your article .

    Thank you , I will be your friends always and will follow all of your story

    Reply
  8. elizabeth o
    elizabeth o says:

    This is mind-blowing and inspirational! I am so proud of you for taking the time to share your struggle with this health condition, Your post will eventually help others in need of such care. Sending you healing light and love…

    Reply
  9. Susan bowman
    Susan bowman says:

    Relene after reading I am taken aback at what you have been through and amazed at how you have dealt with it all.it only shows what a courageous young lady you are, and along with your determination and positivity and the love of those around you,especially your hubby, you will get better! As a mummy I can only imagine what your parents have gone through as well, and I’m sure they couldn’t be more proud of their lovely daughterxxxxxxxxxxxxx Upwards and Onwards!! ❤️

    Reply

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