1. any heavenly body.
2. a person's destiny, temperament, etc.

Whether you’re reading this because you’re gluten intolerant, suffer from PVFS or CFS, are starting to grow your own veggies, embracing natural and/or alternative remedies, or just want to enjoy the journey with us, please remember I’m not a medical expert, nor am I here to debate global warming. Being diagnosed with a life-changing illness, looking for answers or changing the way one lives can all be overwhelming events, so I hope that by sharing the triumphs and tragedies, you too will benefit in some way from our journey.

I hope you enjoy the journey and if you leave this blog having learnt only one new recipe or started to think about finding your star, then this blog’s purpose has been served.

My two favourite sayings:
Pondering the choices we make at the crossroads is like revision in the school of life. Regretting the mistakes or taking for granted the successes means we have learnt nought.
An attentive student will gain wisdom from the mistakes and joy from the successes. Cartillyer – 2008

'Strength does not come from physical capacity. It comes from an indomitable will.' Mohandas Gandhi

Wednesday, June 27, 2012

The Specialness of Specialists

(Try saying the title of this post three times really fast.)

I visited specialist doctor rooms a couple of times as a child. The quietness of the rooms was unnerving, the many empty chairs gave me the distinct impression that no one liked going there, and the cold, meticulous manner in which the specialist dealt with his patients, i.e. me, convinced me he was the reason people stayed away. 

Since reaching adulthood I’ve discovered that the fees were the more likely deterrent. Specialist rooms are still unusually quiet and half empty, but many specialists that I’ve visited as an adult have been friendly, caring and very helpful in my quest for answers.

In July 2010, the renal specialist that confirmed the diagnosis of nephritis and post-viral fatigue was very down-to-earth and friendly. She explained the functions of my kidneys, told me that apart from the nephritis, which would clear, my kidneys were fine and sent me home to rest.

But as my frustration with my post-viral fatigue diagnosis increased, so did the various symptoms. A blurry spot developed on my right eye. It didn’t cover the entire focus of my eye, just the central focus, so if I was reading a book, the words I was trying to read would have a blurry spot on them. All the words surrounding the blurry ones were fine.

My doctor referred me to an ophthalmologist, so in August 2010, I found myself sitting in another specialist’s waiting room, expecting to be told my blurry eye was another symptom of my post-viral fatigue and to go home and rest. As soon as the ophthalmologist looked into my eyes with a machine that looked like it was designed to torture rather than diagnose, he told me I had uveitis. In light of my recent ‘nasty virus’ and post-viral fatigue he referred me to his colleague, who specialised in uveitis.

In September 2010, my new ophthalmologist read my file and told me that I must’ve had one hell of a virus because it resulted in TINU (Tubular Interstitial Nephritis and Uveitis) Syndrome. He then suggested I Google it.  Being told to Google something by a medical professional was a shock. I stopped myself short of blurting out, ‘Really? You’re happy for me to Google it? Won’t that make me dangerous to myself?’

As soon as I got home, I did as he suggested and quickly discovered why he told me to Google it. Because of its rarity, the only place I could find any decent information on it was in medical journals. So I armed myself with a good dictionary and started reading.

Like many illnesses these days, there’s no specific cause of TINU Syndrome. The steroid drops prescribed by the ophthalmologist cleared up the uveitis and in time my nephritis cleared as well.

During my research, I discovered that people who already suffer from an autoimmune illness, such as Graves Disease (I was diagnosed with Graves in 2001), are more likely to contract TINU Syndrome. I shared this information with the ophthalmologist during my follow-up visit and discovered he wasn’t aware of the connection.

We then spent the next ten minutes as equals, enjoying an intelligent conversation about TINU Syndrome and Graves Disease. I left his office that day with my self-confidence and my faith in the medical profession restored.

I also realised that I’d been researching the wrong things when it came to my post-viral fatigue. If my ophthalmologist didn’t know all there was to know about possible causes and illnesses linked to TINU Syndrome, then why assume that my doctor knew all there was to know about post-viral fatigue?

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