This Lupus Life

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

The Chronicles of This Lupus Life

The most important thing to know about people diagnosed with Lupus is that there are no two people who have exactly the same experience. Other than the obvious reason that ‘everyone is different’, there a few different types of Lupus and the way the illness plays out depends on exactly what the person does, how they react to their environment and treatments and just how severe the illness is.

For me personally I think I can identify two of my major flares were at least partially self-induced, one was badly managed and two were worsened by a predisposition in my family to particular ailments. Research suggests that more people in the world have Lupus or an autoimmune illness of some variety than we know about and will likely never be diagnosed or experience on-going issues or even life-effecting issues in relation to their condition because their Lupus or illness isn’t that active. For those ‘lucky few’ like me, who unfortunately are the reason Lupus is known and has the reputation it does (thank you House M.D.), Lupus looks horrific. We are the ones that cause people to have pause. We are the small percentage that make you stop and think “Damn girl, that stuff is whack!”

Please bear in mind, as you read the below, just how atypical it is for my Lupus, Systemic Lupus Erythematosus (SLE), to be as pronounced and active in someone of such a young age. Also note that This Lupus Life hasn’t been bad and continues to not be that bad (from my point of view) and I honestly believe I am coming in to a period of remission.

So. Without further ado. Please allow me to reveal in chronological order My Diseases (SLE, RA and CV).

1988 – Born with Hyperextension, focused on the hips, and Hiatus Hernia

1988-late 1990’s – On-going ear canal issues (too many to comment on). On-going skin condition (still undiagnosed to this day but typified by broken surface sores and the inability to heal)

2004 – Contracted Ross River Virus. Not a SLE condition but worsened by my emerging immune disease. I believe it also instigated the SLE flares.

2005 – First and most violent instance of Idiopathic Thrombocytopenic Purpura. Recently upon discussing with my Neuro-Immunologists its has been confirmed it is more likely Thrombocytopenic Purpura (Idiopathic means unknown origin).

2006 – Rheumatoid Arthritis (RA) and Asthma began to impact my physicality.

Late 2007 – Facial disparities and on-going RA issues lead to diagnosis of Bell’s Palsy, RA and SLE.

2010/2011 – Ongoing Eczema irritations

2012 – Erythema Multiforme flare

2013 – Costochondritis and onset of Cerebral Vasculitis (CV). CV caused Partial Focal Seizures, Trans Ischemic Attacks and mild partial strokes.

2014  – First appearance of Macular Drusens, first three Kidney Stones and first Anaphylaxis.

 

I know what it looks like when you read this. It looks scary. It looks bad. It looks like I should be kept away from normal people in case I become contagious. But I am unwell because I have diseases that are defined through an overactive immune system. My body is constantly working to prevent invasion by alien cells and in the interim it becomes confused which cells are the invaders so it attacks itself. The reason I have multiple autoimmune diseases is unknown but this is not uncommon.

I know what the consequences of me sharing my story is. I know I am already isolated from others my age. I know that I further isolate myself by revealing to everyone my story. Heaven knows that I already have enough trouble finding a fellow to date. I don’t even want to think too hard about the consequences this may have on any further career I attempt. But I believe it is important that people, whether they have a chronic illness, are struggling with illness in youth or just troubles in youth, feel they are not alone. I believe this is more important than me. I believe my experience and strength can help others, even if only a little bit.

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22 thoughts on “The Chronicles of This Lupus Life

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