This Lupus Life

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

One week later

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The last thing you have heard from me is that I was awaiting news from a special panel of doctors from Royal Perth Hospital. I had to wait for this because I had one of my stroke-style partial focal seizure incidents on August 5th which lead to the discovery of yet another large brain lesions. After the initial hospitalisation at Fiona Stanley Hospital I returned to my neuroimmunology team at Royal Perth Hospital to find what direction they would be taking my health treatment in. The unfortunate news was that, at that time, they could not see a way to progress. All their ideas, treatments and current understandings of my health for the past two years regarding this circumstance were proving to be misguided.

How to read this #MRI: it is reversed, the big white patch in the bottom left is in the back right side (right posterior #cerebellum) of my #brain. In the big white patch is a smaller, brighter white spot. This spot is the scarring from my old #lesion. The lighter white patch is my new current lesion. The lightness in the convoluted #brainmatter (cerebellum) in that area of my brain indicates a general #inflammation. Otherwise its all good. That lesion feels to be the size of an elephant made of razors. It hurts. Don't forget to look through my older posts for the original lesion MRI! #cerebral #cerebralvasculitis #vasculitis #cerebritis #lupus #SystemicLupusErythematosus #sle #autoimmunedisease #chronicallyill #chronicillness #steroids

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They didn’t know what was wrong with me.

I left the meeting knowing my neurologist, head of Royal Perth neurology department, was on the case. She was discussing me with many different department personnel and they would be able to help decide what might be needed next.

Wednesday in the 10:30am lecture I took the first call from Dr Wit. I would be going in to Royal Perth as soon as they could get me a bed. They will call me when that happens.

In the 11:30am tutorial I took the next call from Ward administration. My bed was ready for 2:30pm.

I stayed to finish the class, informed my tutor, then left for home.

On the bus Ma called. Did I need her to come to Perth?

No, it would just be some tests and no point in her coming up. I will just get the train in to the hospital one day and come home the next. If I seriously thought I would need her I would ask. I was not worried so I assured her she’d be better off to stay at home, given she had only just arrived back there the day before.

By dinner time I was admitted and had been visit by the new Wit from Neurology. MRI first thing in the morning, followed by an afternoon Lumbar Puncture to test some things that hadn’t been tested last time. Just after breakfast I was mistakenly taken on one of my roommates tests. I was in a room with three other young girls, all of us stroke patients. I was the eldest. It was a grim fact. I was returned to my room in time for a full discussion with Ms Leo, Head of Neurology. This began a series of long and troubling recounts (about six to 8 in total for the day) of why I was in and what it probably meant. The MRI and Lumbar Puncture would determine what happened next, they still weren’t committing, but they eluded to the idea that they didn’t feel it would show enough that they would feel better.

They were right. My MRI showed that the IV prednisolone had pretty much not had an impact. There was too little change for their liking.

The treatment I have been on since December 2013 has not been working.

This means it most likely isn’t a Systemic Lupus Erythematosus (SLE or Lupus) phenomena.

Or a Vasculitis one either.

We are back at square one.

They will need to cut out a piece and see if that can tell them more.

I conceded it was time my folks came back to Perth. When they arrived they informed me my step-grandfather was in another hospital. He had pneumonia and most likely a stroke. At age 91 we began to come to terms with his health situation, and how much my Na, his wife, should be told.

My elder brother T-Dog had left on a short holiday the Sunday before this all happened. He was MC at a wedding for our old housemate in New Zealand. Yet another question of how much to share.

Friday evening brought the decision.

I was to have a biopsy on the lesion. They would cut a hole in the back of my skull and insert a hollow needle into a small amount of points in the area, taking small samples of the tissue. There are risks. All brain surgery comes with risks, they are all traumatic events. There is a small chance of brain damage. Death. Epilepsy. Big bleeds.

Am I okay with a transfusion, if it is required?

I just agreed that I wanted them to do whatever they thought would bring an answer. I wanted them to test so they could treat me.

Saturday I started developing a kidney infection.

My step-grandfather passed away Sunday morning. He was a great man and was a blessing in the lives of my father, uncle and Na. I wish I had said goodbye but…well…my risk of infection kept me away.

Monday afternoon (today) they discharged me. T-Dizzle came back with ear and chest infections. The trip wasn’t as he had hoped regardless of local events.

Tuesday I have the GPS MRI. It will allow the Neurological Surgeons to identify where to cut, drill, take pieces of my brain.

Wednesday I have my pre-operation appointment with Sir Charles Gardiner Hospital.

Thursday I will see my Psychiatrist. I have one of them now. Elvis. He is wonderful, but then, he should be shouldn’t he?

Friday morning is the surgery.

Friday is Da’s birthday.

This week is my first study break from university. I handed in my first assessment yesterday. I had to beg for an extension that I did not need. I will try to finish one ahead of time this week. I have a prac placement the first two weeks of October. Are you starting to feel the chaos that is in my head?

The first thing I did when I got home today was unpack my bags and make corn chowder. These feel like the only thing that I have control of. I certainly don’t get a say in how my body is turning out.

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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.

8 thoughts on “One week later

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