There is no way to know where Lupus, in any of its forms, comes from. We people with Lupus refer to it in speaking in the way you would for something that you are born with and reflect on how it has developed over our lives. But does it really? We don’t know and that is just what really gets me, right in the heart. So, when I was initially diagnosed with Systemic Lupus Erythematosus, the first thing I began to do, with the help of my parents, was try to trace ‘poor health’ (in general) and (more specifically) signifiers of Lupus in my relations health lines. Where did my Lupus come from, and what did I need to be aware of in my future?

Where Do We Come From?

The short answer is that I do not know. None of us did. But, a valuable lesson I learned from this diagnosis was that we all come from somewhere and our pasts, the history of how we came to be can be critical knowledge. Some people with other illnesses and diseases know this lesson, and to some extent we are all marginally aware of the value of this. Even when you are unable to access your family’s medical history, you still know how helpful it can be to have this.

What Does This Mean For Me?

There was no Lupus. Genetically, in my family, blonde hair, blue eyes, tall, lean athletes with high metabolisms was common, and Lupus was not. We are a group of fighters, mentally and emotionally ready to work through hardships with a positive approach. Bowel Cancer was a threat, as is Skin Cancer. Sight can weaken over time, more now we are seeing Dementia, but who isn’t? Most importantly is Kidney (Renal) Diseases and there was just this one trail in my heritage that shows indications of Heart Issues. I have seen the medical paperwork, and as clever as I like to think I am, I could only make out “…Lupus Coagulant…” towards the bottom of one page of a relative living with these woes. I have been informed of how to explain it to the doctors, like that helps. Me, the girl who cannot remember breakfast last Tuesday, trying to recall vital medical facts of another person.

What Makes Me Think This Means Something?

I have Lupus. Heart and Kidney troubles are the two things I kind of always thought I would develop at some stage. Not that I hoped. I just kind of figured, the amount of stress my body is under, this was possible. The amount of pharmaceuticals filtering through my body predisposes me to undoubtedly burn through my detox organs quicker than the average ‘young person’. For the last few years I have been joking with my doctors. “What about if I did this… (enter embarrassing and irrational behaviour from me)…Can I do that…(expecting to hear no or just a bit more of an explanation on what my Lupus body is and is not capable of)?” Except that first question would be a joke. The second one would not. “…Can I have a pacemaker installed?” Of course, they never took me seriously after a question about being involved in naked skiing on the Alps, followed by a session in a Sauna or Hot Tub. Did I want them to take me seriously? I wanted the answer definitely. I just didn’t want to feel vulnerable asking it.

Why Am I Fixated On the Idea of My Heart Going Bad?

That is simple. It is not uncommon for Lupus to affect internal organs. When it started to affect my brain, it took me years to synthesise that information, to become okay with having brain damage, a brain disease. At first, I wanted to throw this body away. Get rid of it. Cut it off from all signs of a happy and normal life. I wanted to punish my body for punishing me. It was only natural that I wanted to prevent myself from having any more serious illnesses or diseases. I thought I was having strokes almost daily. Of course, I didn’t want to start having heart attacks too. I was only 25 years old. Looking back at my familial health histories in any which way it can be seen I could be on the Lupus train that will stop of at Heart Station. I mean, any one of us could, I just had the blessing of knowing that, because of my Lupus, I had to be on top of it earlier as my body wouldn’t fight for itself as much as it fights against itself.

And Now This Happens

I finally become okay with the Lupus having a dramatic impact on my brain and begin to settle into a real life with a real future. This is when I started to develop an irregular fluttering in my heart. Is it a heart murmur? No. It is always regular? No, the Echo Cardiogram (ECG) always shows normal. So, why can’t I breathe well anymore? Why is a small amount of exercise in a supervised environment causing me chest pain? And why do I feel my heart flutter for fifteen seconds, every two hours, in a way that makes me catch my breath and clutch my chest in near pain? It feels like I have an angry beetle held tight in my hands and it is trying to fly away so fiercely. But I just won’t let it. I waited a week and spoke to many people to make sure I wasn’t overreacting. I met my doctor and explained the situation to her and she agreed it could be worth looking in to. Afterwards, I stopped all medication that may be having an impact and the flutters continued. Last Thursday I was strapped in to a Heart Halter Monitor for a 24-hour recording of my heart’s processes.

What Next?

I do not think I actually want a pacemaker. I Do not think I want anything wrong with my heart at all. But then again, I do not want Lupus, and we all know how well I’m winning that fight. At the same time, I do want something to happen to make these fluttering things stop. Monday, 22nd of July, I will find out what the Monitor recorded. It makes my heart flutter to think about it.  Just not in the same way.


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