This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

Intermission

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I suppose by now you may have noticed I am only recapping a blow-by-blow of this Brain Farts saga. A fair amount of people do not realise that medicine is not a black-and-white science. Bodies do not come with manuals and no two are identical in every facet. When there is a symptom, the doctors will do tests and theorise as to what and why things are occurring. However no gland is ever going to say “I need more of X Protein and the Spleen is only working at 57% of its normal capacity.” So treatments are given as best as they can sometimes and if the initial illness resolves then it is a win.

If there is no obvious cause or explanation for what is happening or why the doctors often continue testing. Doctors like their patients to live and be healthy. Doctors also don’t like being sued or losing their jobs whilst trying to heal people, so they dislike to diagnose prematurely unless the likelihood of error isn’t catastrophic. What I am trying to say is that if they aren’t sure a clever physician will keep their mouth shut and run some more tests, whilst reassuring you of what they are doing and why.

This brings me to the current state of affairs with Brain Farts. When we had looked over the few MRI pages of my brain and joked only about the apparent pockets of air (brain farts), we neglected to notice the white growths filling the right hemisphere of my brain. There were 5 ranging in size and shape. Wally and Paddy had both seen these and were in communication behind the scenes trying to come up with a clue as to what they were, why they were there and what to do. Both specialist had a different idea which required a different treatment, each specific to their field of medicine. Each specialist was conferring with colleagues in other states and overseas for possibilities, making me an international superstar!

Paddy thought of Anti-Phospholipid Syndrome, which is a thickening of the blood due to the proteins in it. This is why he wanted me on the anticoagulant Warfarin. With thicker blood, he thought, I was experiencing a build up of clots in the brain. On the other hand Wally felt it was Vasculitits, an inflammation of the blood vessels, which can be assisted with corticosteroids or  immuno-suppressants. Each was likely with Lupus however the treatments themselves contradicted each other so blindly stepping in to any attempting to heal could be as fatal as leaving me.

The good news is the tests and scan were conclusively showing the growths were not tumours. As I mentioned above doctors won’t talk about what you don’t have and they won’t tell you what you might have until they are quite confident. So being able to glean this much was like pulling out my own teeth, which are healthy thank you very much!

I haven’t mentioned also that while all this is going on I was in the middle of studying for, and taking, my first exams. I was compartmentalising in a big way and running to a point on auto pilot. I wasn’t scared and I wasn’t feeling emotions because I didn’t have the time. I’m not trying to put on a show, this is just how it was. When I had finished my last exam I had very little time to start to process everything before I had my next appointment with Paddy to see if Warfarin was working the trick.

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Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

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