Living with Lupus

Last updated: May 2022

My name is Amanda, I am 36 years old and this is my story.

Early signs of lupus

I had my first autoimmune disorder at the age of 18 months old, I started with Stills Disease which had nearly killed me from high fevers and my body attacking itself. As I got older this developed to RA…. Something was still off, because my ANA was elevated my symptoms indicated more- but no one took the time to figure it out. My body was weak, always in pain, someone’s two day cold was my two week cold.

Getting diagnosed...three decades later

It was not until I was 30 years old that I found a Rheumatology NP who would help me. She found that I had SLE…. This explained my fatigue, joint pain, muscle pain, all of my kidney infections and UTIs…. What I was not prepared for was the onslaught of conditions that it would cause me.

Living with multiple conditions

I ended up with Reynauds, Sjogren's, Fibro, and a rare neurological condition called Idiopathic Intracranial Hypertension which has led to 9 brain surgeries, 9 spinal surgeries, and 46 spinal taps in 4 years time. I was not prepared to need a VP shunt, LP shunt, brain stent, or craniotomy. But, this is what happened. My life is monthly hospital stays to treat Lupus snd IIh.

I refuse to be dragged down

But, I refused to let it drag me under. Instead, I raise awareness for IIh and Lupus, I help others feel less alone…. My rheumatologist is big on self-care, so weekly I find one activity that is focused solely on myself and my healing.

My hope is that someday there will be less toxic and harsh medications that can control this beast of an illness. But I refuse to be dragged down.

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