Within the last seven years, since receiving the lupus diagnosis, I’ve had to relearn, reinvent and re-love myself. I’ve researched and studied, educating myself about lupus and linked illnesses, in a way that I never did for my university degree.
Being chronically ill, you’re an expert in your body. My Discoid Lupus Erythematosus (DLE) flare-ups force me to pay attention to changes in my skin; I know the difference between a pimple and potential DLE problem. I recognise the sizzle of a new lesion or rash, versus the soreness of shingles. I know the aches from things I’ve done. like lifting the sofa to get the remote versus when I’m aching because its mini flare time (aka menstrual time). Having lived in this body for the last 44 years, recognising my normal versus change has become a much-perfected skill.
It can be frustrating, therefore, trying to convince medical professionals and others to notice what you see. For example, me having to convince doctors and nurses that my ankles were swollen. I’ve ridiculously skinny ankles, I mean, I really don’t know how they support the rest of my body, so my swollen ankles look very normal. After being told there was no swelling, it took physical examination and showing pictures of what my ankles and feet looked like normally for nurses to pay attention to me. Similarly, I’ve had to show pictures of my normal, darker complexion and tone to convince triage nurses that I’m pale, drained and really sick.
I’d always had relatively low blood pressure, so when tests were showing pressure rates within normal range, it wasn’t thought of as an issue, despite me repeatedly explaining that the normal blood pressure range was abnormal for me. My blood pressure continued to rise higher, and now I take medication to manage it. The danger in this was that consultants had me convinced that I was overthinking it. People with lupus have an increased risk of cardiovascular disease, strokes and heart attacks. A linked illness that exacerbates this risk is antiphospholipid syndrome (APS), where the thickness of the blood causes slow flow, putting more pressure on the heart. It can also cause clots, so patients with APS are high risk. Guess who tested positive for APS! By the time my blood pressure had risen to danger point, I was so used to experiencing hypertension symptoms, it took a while for me to get on board with how dangerous it had become. Sticking to the theme of blood, I’d once attended A&E feeling dizzy, weak and in extreme pain. I knew that my blood wasn’t flowing properly and asked for fluids and pain relief. They needed me to have a blood test, but after five attempts, not a single nurse could draw blood from me. I explained that despite taking aspirin, I was having a blood flow issue. They didn’t believe me. I was told that they couldn’t give me anything until the blood test had been done. I waited (in pain) to be seen by the doctor, who reiterated the same thing. He tried to take blood from my arm, wrist, and hand, but couldn’t. While he was trying, annoyingly, he thought he’d educate me on where the name “lupus” came from. Admitting defeat, he told me that he’d have to try taking blood from my femoral vein. He used the ultrasound and stuck the longest needle I’ve ever seen into my crotch area – but alas, no blood! He declared that he’d never failed to draw blood from the femoral vein, and I was the hardest patient. Weakly I advocated that I needed fluids and pain relief, he responded that they could put in a central line to first draw the blood for testing, but it wasn’t enough of an emergency to warrant me being given a central line. He asked me to return to the waiting area, where they’d eventually get around to me, or – he presented an obvious hint – due to the extremely long wait in A&E, I could go home and drink lots of fluid. I was too weak to argue. I slumped down in the waiting area for a few hours, and then eventually called a ride and went home – no fluids, no pain relief.
A personal care plan for A&E could’ve helped with that situation. I hope to work with my rheumatologist to finally get one in place. Medical admin can be stressful but keeping your own records of test results and photos can help win your medical arguments when you’re too weak to do the talking. I say all of this to say, don’t be afraid to challenge and advocate for yourself, because nobody knows you like you do.
Article by Maryann
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