This Lupus Life

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

My 2013

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I feel like I have made so many apologies for being AWOL from regular entries since I have once again been unwell. As my recompense I will share the last 4 months and hope there is understanding. (If I have covered this before, you may just have to skim over this next part)

After I completed my Certificate III at TAFE for Education Assistance I applied to a few different local universities to start studying to be a primary school teacher. I was accepted to all of them, which was no little surprise to me! I chose Murdoch University because of it’s proximity to my house, as well as the fact they have a full semester 2 for mid-year enrollments. In late July I started at uni and within a fortnight I had met many people, been so lost it was embarrassing, revised the campus map so many times I had almost memorised it and finally settled in a little to the lifestyle.

Over the semester I made some very good friends, many more connections, established my preferred study routine and sussed out which seats at the library I could be assured of long-term comfort for my breaks. I was at pains missing my TV shows (all of which were released while I was studying and I was adamant I wouldn’t allow myself to become distracted until Summer). I maintained a high grade through all my assignments and tests and managed two High Distinction grades for unit completion. I am just awaiting my last two exams now and I am feeling super confident, as I have already passed the unit.

My health has been flip-flopping like crazy and has forgotten all about me. My costochronodritis has been sparking up to keep me on my toes. During September I started to have fluctuations in the range of my field of vision, first my peripheral  faded away, then I started to have flashing stars and lights in the bottom left corner of my vision. Occasionally the vision even went away completely. When I say occasionally what I mean is this happened regularly enough that my folks started pressuring me to follow it up with doctors and I visited two Ophthalmologists, an Optometrist and a Neurologist. Many tests and visits later it came about that I have Cerebral Vasculitis, swollen blood vessels within my brain which were blocking blood flow in the vessels and creating lumps within the right hemisphere of my brain.

Two weeks, and many blood tests later, this was dismissed for a more obscure diagnosis (always the way with me!) and it is now apparent I don’t have vasculitis, rather I am growing legions in the right hemisphere of my brain. On top of that my blood is clotting well and these clots are building up occasionally around the legions. Not enough to cause a stroke, yet, but enough to make my days interesting.

My yoga is consistent and manageable, I teach four classes a week regularly, as well as have 3 intermittent clients. They are all people recovering from surgeries, spinal injuries, frozen joints or strokes and heart conditions, so their practice is never strenuous to allow for potential risk to my health. We stretch, twists and strengthen in equal measure with breathing, meditating and chatting. I like to think I am bringing hope to them and helping to rebuild a positive outlook on their future fitness capabilities.

Lastly, there is a little critter in our house once more. Her name is Polly and she is a 7 month old kitten of no distinct heritage. She is mostly an indoors kind of girl and has a sass and curiosity that is not unlike Lewis Carroll’s  Alice. We like each other well enough and spend our days in the garden or on the couch. She even juggles and plays fetch in the evenings with my brothers. I don’t want to share any more about her here, so I will leave it at that.

Trusting that I will return soon to cover all of this in more detail, please have a nice day as will I.


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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