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My autoimmune disorder journey (part 1)

autoimmune-journey-part01b

First off, I need to warn you that this is a long, detailed post about my journey so far with an autoimmune disorder. So I have broken it up into a few different posts. 

I feel the need to document my journey for a variety of reasons:

  • I felt terribly alone when I was diagnosed initially…. I felt like no-one understood what I was going through. And even the second time around, because I opted for natural healing and adapting my entire lifestyle, was extremely hard. If I can reach just one person by writing about my journey – my highs and lows – then my heart will be happy.
  • I find healing in writing. The floodgate of emotions transform into my companions when I can attach a suitable word or phrase to them and I feel like I can make sense of them and embrace them wholeheartedly until they are ready to depart.
  • This journey isn’t easy. And if I have an archive of the road I’ve travelled it’s easier to see how far I’ve come and the mountains I have conquered that initially seemed impossible.

Photo by Paul Dufour on Unsplash

My journey started when I was 20 years old… I’ve just returned back home to South Africa after spending two years abroad in France. Learning French… learning about real life… learning about photography… learning about being homesick… learning about kids while au-pairing three little boys… learning about love and heartbreak… From the moment that I set foot in France, I felt like I have found my long lost ‘home’ – a sense that “I’ve been here before”. I remember how vibrant and alive I felt, and how I didn’t want to come back home. But I figured it was the responsible thing to do – to study and get a job.

Right?

So I came back and started studying Visual Communications at the AAA School of Advertising in January 2005…

Around the same time I started experiencing constant and increasing pain and swelling in my muscles. To cut a long story short, in a matter of two weeks I saw two different family doctors and took two separate sets of antibiotics for (which they believed were) secondary infections of flu.

Basic everyday tasks started becoming a painful effort within a matter of weeks. Even laying down on my bed would cause tremendous pain… I realised, this was something much more serious than the doctors anticipated, and it was progressing rapidly at a daily rate. To top everything off, both my parents were in France. And I realised that no matter what the age, if you’re sick, the only person you want, is still your Mother…

Eventually our Family doctor was back from holiday so I made an appointment to urgently see him – hopeful to get to the bottom of all this. He asked me some questions: can I still perform my daily tasks – yes, but barely. Driving to college in Johannesburg (a 35km commute from Pretoria) was agony, especially in peak traffic. I told him I know it’s not flu, because my body hasn’t responded to any of the antibiotics. He sent me away for blood tests – a full blood count, cancer markers and to check for any major infections… all came back clear the next day.

I was amazed! What the hell was wrong with me?! Was it maybe just my imagination? Was I just exaggerating? I phoned my parents in tear…

I felt broken… I felt like no-one believed me and no-one cared… I felt all alone, trapped in a body that was so young and yet busy failing me!

The next day I saw a Specialist Physician. He listened attentively, asked a few questions. But he had a puzzled look on his face… He sent me for a more blood tests and everything came back clear… so he sent me for another round… also clear… on the third round we hit something. And he phoned me in a panic early on a Saturday morning to ask about the colour of my urine. Telling me if it turns the colour of Coke that I should rush to the hospital to be admitted… my muscle enzyme count was through the roof!!!

Then I realised he was onto something. I felt a flood of relief but also a flood of anxiety…

I saw him the Monday morning followed by an urgent neurologist and cardiologist appointment. By this time I couldn’t walk up a flight of stairs… I couldn’t lift up my legs to put pants on. Walking at a slow pace would leave me breathless.

Between these doctors they came to the conclusion and diagnosis that I have an autoimmune disorder named Dermatomyosistis…

In short, according to Western medicine, an autoimmune disorder is when your immune system goes a bit haywire and instead of attacking bacteria and viruses in your body, it starts attacking itself and the body’s healthy tissue. In my case it attacked the skin and muscle causing serious inflammation…

Yay! We had a name for it!

Yay! I wasn’t completely bonkers!

Yay! We can figure out a treatment course!

They put me on cortisone and immune suppressants for 18months… and told me to live a normal life. That was it…

The symptoms first got worse before they got better… because it attacked all the muscles in my body, including the muscles in the esophagus… so I couldn’t swallow and lost a ridiculous amount of weight… but eventually I started getting better…

It was a bit of an anti-climax to have such a serious condition, which took months to diagnose, and yet I felt like I wasn’t informed about anything… the cause, the way the treatment affects your body, things to avoid… nothing… The internet wasn’t such a big thing back then in 2005 and didn’t have the amount of information it does now…

Continue reading about the rest of my journey in My autoimmune disorder journey (part 2).

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Comments (2)

  • Rosangela 9 months ago Reply

    Dear Miss Tee,
    Thank you so much for sharing your journey. It is truly inspirational, you are so brave for sharing something so intimate about yourself.

    MissisTee 9 months ago Reply

    Thank you Rosangela, I appreciate your comment. It took me years to get to a point of sharing my journey… 🙂

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