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My autoimmune disorder journey (part 2)

autoimmune-journey-part02b

There are two parts to my journey, if you haven’t read part 1, you can read my previous post My autoimmune disorder journey (part 1)


The autoimmune disorder ‘went away’ after 18 months of cortisone treatment and I lived a normal life for the next twelve years. I got married, went through two normal pregnancies and eventually hit the divorce after loads and loads of stress…

A month after our separation I started getting a red, swollen rash on my chest… I didn’t make much of it… just put some coconut oil on and continued… I also lost about 10kg on my already small 1,63m frame.

After our December holiday in Cape Town, I spent one saturday in the vegetable garden. The next day my muscles were aching, but I just put it down to working in the garden. A few days later the aching still wasn’t gone and the rash became worse….

After putting the girls to bed that night, I made a cup of tea and quietly sat on the couch. My body started communicating with me… Then it hit me… My brain recognized all the same symptoms, but this time the rash was worse than the muscle pain and stiffness…

The next morning I phoned my ‘new’ family doctor for an urgent appointment and requested certain blood tests which I remembered from 12 years ago… and once again they indicated elevated blood enzyme levels…. I already knew it, but this just confirmed it…

I was shattered…. How am I going to make it? I have a full-time job. I have two young toddlers that need me. I have my own household to run. I have freelance jobs I need to finish. I wasn’t 20 years old and still living with my parents….. This time I was a single-mom with responsibilities!

We booked an urgent appointment with a specialist physician who admitted me to hospital the next week. They ran several different tests – MRI scans, cancer markers, barium swallow tests, ultra sounds, blood tests…. you name it, they did it…. and also gave me about 200mg of cortisone intravenously. The cortisone made me feels much better within a few hours. I didn’t have constant fatigue… I could move around without being aware of every muscle…

But since I had a lot of time on my hands, I also started doing my own research… I came across a website that said all autoimmune disorders are linked to leaky gut syndrome and allergies – which sounded very weird at first…. so I asked the doctor to test my allergies, which came back clear.

I left the hospital after a week, feeling better and hopeful. But less than a month later a slight scab in my hairline turned into a serious inflammation. I was admitted to hospital for another week, this time on 800mg of intravenous cortisone. I got the notorious cortisone moon face and some serious water retention.

Two weeks later and 60mg of cortisone tablets daily, the lump in my neck became the size of half an egg and skin necrosis in my neck causing a massive scab that oozed 24 hours a day…. (Sorry for the graphic images)

All of this was happening at an alarming rate and I felt helpless…. despite the medicine, my condition was worsening by the day.

Around this time of despair my mom bumped into an old friend of hers and she told my mother about her autoimmune disorder (rheumatoid arthritis). And how she started seeing an amazing Chinese lady who used acupuncture, cupping and Chinese herbal medicine and how she has been medication and pain free for the last two years….

Now, I don’t believe in chance…. I believe this encounter was meant to happen! So I made an appointment with the Chinese lady and we started slowly weaning off the cortisone… I reduced 5mg per week over the next several months….She treated me three times per week in the beginning, which went down to twice per week, then once a week, once every two weeks until I saw her once every six weeks. She treated me for nine months…. and her treatment worked wonders in my body.

The scab from the skin necrosis slowly started coming loose, but it was inflamed and oozing the whole time. To put it in plain English – it was disgusting!!!

With the help of my best friend, Google, I came across the AIP diet – Auto Immune Protocol and Danielle Walker’s website, Against all grain. For the first time I didn’t feel alone in my journey. For the first time I felt real hope for the future. If she could do it, so can I!!

I started the AIP diet – where you basically remove all dairy, gluten, all non-nutritive sweeteners, grains, legumes, nightshade vegetables, seeds and nuts from your diet. Being the foodie that I am, it was the hardest thing I’ve ever had to do in my life! I was in tears almost every night. But I was determined to get better.

We visited friends over Easter time and I didn’t want to be too fussy with food, so ate all the foods they made. Also, I wasn’t sure if the AIP thing was really working. But I quickly realised it was when I started eating the ‘AIP forbidden foods’ again…..

After my body recovered from the food fiasco and I followed the AIP diet religiously again, I slowly started introducing the ‘forbidden foods’ one by one to see what kind of reaction my body had to each one. I quickly came to the conclusion that gluten, dairy and non-nutritive sweeteners are a no-go for me.

It took a lot of time and a lot more patience for my body to heal from the damage that was caused. But after almost two years, I feel things are under control. I still follow the Paleo diet and it works very well for me.

It took a lot of time and a lot more patience for my body to heal from the damage that was caused. But after almost two years, I feel things are under control. I still follow the Paleo diet and it works very well for me.

I realise showing a few pictures of what happened on the surface doesn’t even begin to explain what went on inside my body – extreme stomach cramps, the worst diarrhoea (within 30 minutes of eating the wrong foods) and the intense fatigue that accompanied all of this are only a few things. But more than all the symptoms, I realised I have the ability to get better. Because people like Chris Beat Cancer could heal stage 4 cancer through a lifestyle and diet change, then so could I…

The mindset I initially had about my autoimmune disorder has changed significantly. Initially I saw it as a disease, but now I feel it came as an urgent message and forced me to completely relook my life. The first step was changing my diet, but I also started looking deeply into what I feed my soul. So I’m taking a 30minute time-out most days to attend a meditation class at work. I’ve looked at the aspects in my life causing the most anxiety, this is where the ‘minimalism seed’ was planted that is in full bloom two years later.

Over the past two years I’ve seen myself grow more and more into the person I need to be. I realize every day is a step in our journey and change will always be the hardest right at the start, but once it becomes part of your daily life and routine, you forget what it was like initially.

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