This Lupus Life

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

My Mass(ive) Year

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It’s that time of year again. The year is coming to the close. The trees are being decorated and dinners are being planned with family and friends.This is a momentous time for many people for many reasons and yet for me the festivities are the least of my focus. More importantly in my mind is the fact that I have been living with the confirmed knowledge of cerebral masses within me for a year now.

It was around this time last year that I was organising the removal and installation of lawn in our front and backyards. Coinciding with this my younger brother and I were designing a new flower bed and removing an overcrowding tree situation by the pool. I was teaching yoga privately and through a small martial arts venue, as well as studying primary teaching at university.

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I did not see it as overdoing myself, I was just working at my usual pace, believe it or not.

I had been informed by my neurologist in November that there were over a dozen masses or lesions visible in my brain. They were  nothing to be concerned about, he had assured me. They were not tumours or cysts but rather they seemed to be fluid that had been constricted. There was no answer as to why they were there, only that they were the cause of the visual aura’s, head pain and dizziness I had been experiencing.

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As I was preparing to teach a yoga class my phone rang. I was to go directly to Fremantle Hospital. I had a bed booked. Be there by lunch. So I left. My cousin took me and one of my besties can for a ride and support, we had been planning to spend the day in the garden. I madly raced to get everything in the ground before we had to leave because PRIORITIES.

My admission lasted just short of two weeks. I was blessed with day leave on the weekend and lucky to return home just before Christmas Day. I spent most of the January and February holiday in the couch or by the pool in the shade with a book or piece of sewing because RECOVERY and PARENTS.

Throughout this year I have become very well acquainted with my masses and have come to understand them and precisely what impact they have on my life. I have come to accept my limits and not push them. I think carefully, long and hard about my actions and take care not to overdo myself. I gained a deep value and appreciation for simple things, conversations and the relationships that existed in my life.

In the last few weeks, perhaps eight if I think about it carefully, I have begun to feel like the girl that I once was. My old personality, preferences, attitudes and behaviours are coming back to me. I am trying to retain the pieces that I liked, such as my new listening skills and placidity, while not allowing my desire of athleticism and living life to extremes take over once more. What this means is that I felt as though the masses within my brain were leaving. When they are there they press upon different sections of my brain and suppress certain functions or skills, so if these come back there must not be any.

And so we come to the present day. I went to Royal Perth Hospital. I saw the Neurology Team.

They told me about my blood health.

I told them about my anaphylaxis.

They told me about the MRI results from last month.

I told them about my episode last weekend.

They said I am responding well to my treatment but I cannot forget my seizure medication again.

I may be able to apply for my license now.

I left the appointment with a big sheet of tests for allergies as well as the usual big sheet of tests for my blood and fluids.

I left with confirmation to drop down the Prednisone some more but stop at 5 mg. There I will stay for 3 months. Slow and steady, and I’m winning this race! I will also stay on the Epilim, Pantoprazole and Imuran on the current doses.

I left with good news, a positive outlook of the next short while and hope for the future of my Vasculitis and Allergies.

I left with a smile.

Below is the beautiful big mass that plagued me for most of the last 6 months. I am pleased to say it is now gone, almost entirely.

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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.

4 thoughts on “My Mass(ive) Year

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