This Lupus Life

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

A lack of inflammation

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I’m sitting here listening to Islands by The XX reminiscing on the joy that was the few days before Christmas and a thought occurs to me. In the whole epic situation that is unpacking from an overseas adventure, Christmas and New Year’s celebrations I forgot to share with everyone the most exciting news. I guess if you have read the last few posts from me you will be able to piece together my news, but just for clarification I will now put into words the exact situation as it unfolded.

In the last few days of my holiday I felt as though woken from a dream. I was shaken awake hard by my conscience, which was pointing with furrowed brows at the mound of rubble that I had allow to accumulate in an excuse for living while I was in the haze of coping with an impossible situation. There are things people will forgive when the situation is avoidable. For instance: soiling yourself when you have no bowel or bladder control, falling down when someone punches you out and yawning when you are tired (none of these were me by the way). Being rude to people caring for me, not offering to help with simple chores and hogging the television every day (these sadly were me)? These were some of the poor, inexcusable behaviours for which I should have known better.

As the haze cleared I was horrified and near-on in tears daily as I reflected. For the first time in longer than I can remember (literally as I cannot really recall much of the time before I developed the brain lesions) a fire began to burn inside of me. I wanted to be better. I wanted to be active, not just hoped and mused over the notion. I was ready.

But why? Was it being out of my comfort zones? Was it putting an ocean and national border between my doctors and parents? Was it having to navigate a different culture, climate and not destroy the link between my travel companion, which always will become more tenuous in travel situations.

I was mostly sedate and withdrawn, both physically and online for the remainder of September. Lupies, Chronic sufferers and even just some people with low energy reserves will appreciate that this was just my recovery from an exhaustive 10 days. I was sleeping 14-16 hours most days during this time. A good, healing sleep. When my mother came up to visit, and even before then on phone calls, she continued to exclaim how much I sounded like I had changed. To be honest, since my lesions I have hated talking on the phone, or at all really.

Mid-December I was booked in to Royal Perth Hospital for an MRI. A brand-spanking new machine had been delivered, with new ‘outfits’ (pants and bottoms not gowns!) to match. I showed up, ran through the drill and took my late-afternoon nap in the machine. It was no quieter than the old one, nor more comfortable, but sleeping in these things has never been an issue for me regardless.

Trivia: A brain MRI is the only place where I can actually fall asleep easily and almost instantly. Another ‘comfort zone’ of sorts?

My appointment with the NeuroImmunology Team was not booked until the new year, January some time. They weren’t even due to meet from the end of November until the start of January.

And yet there was an exception.

December 21 2015 as I was tidying up my bedroom the phone rang. I thought it was mum. No one else really calls me and she was getting me somethings at the supermarket.

It was one of my doctors from the team. He quickly and simply explained the scans had come back and my brain looked great. The treatment had worked. There was a significant reduction in the size of the inflammation. He asked if I had been having any symptoms or presentations  that concerned me. He asked how I was feeling on my medications. Then he asked if I would like to begin lowering my Prednisolone dose.

I was so delighted the conversation merged for a while as we both began speaking at the same time confirming details and expressing pleasure. The call didn’t last long. We confirmed my new dose and then he left me to go spread the word, which I did, but not until I had a day to myself to process and another day for just my immediate family and closest friends to hear and process.

Lots of tears, lots of hugs, lots of joy.

It was the best Christmas present ever. Two years I had just left hospital for the first time and now I was confirmed to have an empty head (pun intended!) We knew this to be true, as my parents were telling anyone who would listen how it was nice to have “their little girl back after all these years” and I agreed because I didn’t get angry and confused at everyone who breathed and moved in the same room as me.

We knew the end was in sight.

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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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