This Lupus Life

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


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My Systemic Lupus Erythematosus

My Lupus is atypical because it is ‘internet typical’

It was vital for me to provide an overview of Systemic Lupus Erythematosus (SLE or Lupus). Not only because it was a pretty hefty sum of information on its own, but also because you needed to understand about the illness as it typically is discussed. I referred close to the end of the text about how it can vary for individuals in how aggressive it is and the specifics of how it occurs within the body. I did this for a very important reason and that is this:

There is no typical Lupus patient.

There is no predictable or likely progression of milestones for this illness. There is no standard treatment plan. I know this is Continue reading

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Reducing Prednisolone

My most recent appointment to the Neuroimmunology team at Royal Perth Hospital over a month ago was positive. I was told the Rituximab infusion was still working, so my B-cells, which fight foreign invaders, was low. I was told my eyesight was not impaired by either the Cerebral Vasculitis or the Hydroxychloroquine (Plaquenil) used to treat my Systemic Lupus Erythematosus (SLE or Lupus). Lastly I was told I was allowed to drive once more and could begin to reduce some of my medications.
So what have I been doing since then?

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Hot Cross Buns for the sensitive stomach

Happy Easter one and all! a few weeks ago I made hot cross buns from a new recipe. This recipe was low in carbohydrates, gluten free, dairy free, nut free, grain free, paleo, had no added sugar and was high in fiber. It seemed too good to be true but I tried it nonetheless.

I was very glad I did. This recipe is simple, quick and the buns last for over a week in the fridge. I had no trouble digesting them, and while they are not as sweet as the original HCB recipes from the bakers, they are just as enjoyable with a small trickle of chocolate on top. I had very little trouble sourcing  ingredients but I have made some notes down the bottom of the page that are especially helpful for Australian’s

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What we want you to know about us

I’m going to talk about myself today as usual but I am also going to talk about something that happens with all chronic illness patients and so that if you are a family member or loved one you can better understand.

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