This Lupus Life

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

Fits and Starts


My hospital visit was only brief this time around. I stayed in for the night, long enough to be seen by many differing Neurologists, have a few more MRI scans of my brain. The incredible outcome was an answer to my last 6-8 months of illness and incidents.

Of curse, now I have the time I can start from the beginning. In August 2013 I had a partial stroke. The symptoms were mostly effecting my visual field and cognitive functions. Over the remainder of the year I continued to have more of these small episodes. Never anything too alarming or serious enough to cause me to go to emergency at hospital or call an ambulance. By November a neurologist had uncovered the cause of these through an MRI in which multiple masses were seen to be growing within my brain. By December I was admitted to hospital and the masses had grown and doubled in number.

When I was discharged at Christmas I was expected to start treatment for chronic migraines.  No one has confidently identified what migraines are but there is much to suggest they are caused by swollen cerebral vessels, as I  had, hence the treatment. This year I have yoyoed in and out of various medicines and the side effects that go with them, or with migraines when I am between treatments.

Three days ago I was in the middle of a performance for university when I experienced another mini-stroke-like episode. It is the first one I have had since hospital last year. I knew what to do this time, I had to get directly to my team Fremantle Hospital. This decision didn’t take much time to make as I lost the ability move the left side of my body and so I fell down stairs and sprained my ankle. I took a seat in a way that looked like it was in the scene until I had to deliver my lines and walk off stage. My director/tutor took me to emergency and waited for 4 hours until my cousin arrived.

By the time I was admitted and settled in to a bed my brother had brought books for the night. My first two doctors came about an hour before midnight. I was woken and tested for observations every 2 hours until breakfast, which is basically standard medical procedure for neurology issues in new admittants I think.

Blood tests, glucose levels, urine test, reflexes and muscle strength, speech, sight and hearing, balance and walking, 3 MRI’s, 8 neurologists, 5 student exams practices and 2 X-rays.

My folks called to say they could finish their work things and be in Perth by lunch. My cousin brought her son in for morning tea and we counted down the hours until I heard something.

Then that beautiful ray of light shone through and the neurologist came and said:

“You had a stroke a while back. That has left scarred tissue in your brain. This scaring is causing you to have seizures that mimic the symptoms of that first stroke. All your partial strokes since then might have actually been these seizures. The steroid treatment did in fact remove all masses and the tests showed these have not returned. The episode yesterday sounds typical of a partial focal seizure, not a stroke, which is why you don’t have long-term damage from them. You will not be able to drive until you have had 6 months without a seizure, but with epilepsy medication we hope you won’t continue with the seizures.”

So. Epilepsy.
Of course I am going back to the RPH neurology team soon to find out more. Maybe its not epilepsy. But it definitely is Lupus.


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.

7 thoughts on “Fits and Starts

  1. Putting the pieces together. Feel better real soon!


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