Auto-immune diseases are never boring.
Boring would be nice, actually.
If I was bored I might write about cats. And sometimes I cheat and do write about cats; the way they help me when my symptoms flare up; the crazy things they do that makes me laugh that usually involve toilets and open medicine cabinets; the way that they know when I just need some undeserved comfort or the items on my dresser re-arranged or the same items tested against the laws of gravity or just someone to lick my nose. If I was bored, I could chronicle the life of cats like half the people on Facebook seem to do and some even get paid for it. But I am not bored. I have lupus.
Some times the disease goes quiescent. Dormant. Almost not there. Like mine had for months. A time when we can pretend to be normal or at least as normal as most people are normal, which in the case of some people I know really isn’t that normal at all. But there it is. I have spent months being almost normal-ish. Pretending to be.
Then the joints on my left hand began to feel stiff and painful. And I began to get tired. And dizzy. And there is a strange redness on my head that doesn’t belong there. At least I do not think it does. After turning 50 I am getting less certain of such things and may need to consult with some of my fellow AARP members just to make sure. And why does the base of my skull hurt? And there is this pain in my upper left arm accompanied by some numbness seems to be getting worse, sending jolts down my arm. Like when I pick up my cell phone to talk or lift a teabag out of my tea or turn the steering wheel or when I raise the chalice Sunday mornings during the consecration of the Eucharist. And I wince and grab my arm and people ask if I am OK. And I am more OK then the 93 year old who just had two more stents placed into his 99% blocked heart vessels who I prayed with yesterday, but perhaps less OK then some others. Is this arm pain from lupus or is it something else. This is what sucks about having an auto-immune disease. You have almost no idea if your symptoms are from that disease, the medicines treating it, or getting older or something else entirely. When your auto-immune disease can manifest itself almost anywhere in your body and cause almost every symptom imaginable, it can drive you to exaspertion. In my daily act of stupidity I often google some symptom that I am experiencing along with the word “lupus” and there it is. The only thing I am pretty certain that I can rule out is the occasional hangnail. Definitely not from lupus. Probably not the grey hair, though the cause of its growing thinness is debatable.
When lupus moves from quiescent to more active they call that a flare. Lots of things can trigger a flare. Sunshine. Stress. Environmental factors. Some biological random act of unkindness, I imagine. Lots of stuff. And when it flares and the headaches that defy all brands of over the counter medication come and the need for naps comes, and the dream-like soap bubble of being almost-normal pops and stings your eye and you think “not again,” you might just sit down with your laptop and write about it like me. Like today. As you are waiting for the pretty much useless over the counter pain meds to fail to work. Again.
A last thought. People are beginning to leave me articles and share anecdotal stories that promote all sorts of natural methods of symptom relief and disease cures. I love you all, so much. Truly. I want to smile and hug you and assure you of my sincere appreciation. But please do not take offense if I do not enthusiastically jump at the opportunity to try each and every one. I am not scared to eat dirt or have needles stuck in my body en masse or drink the juices of various flora. Please understand how much strength it takes to battle lupus when it flares up and at the same time be sincerely grateful for all the earnest advice coming my way. These days thinking straight is hard enough, let alone trying to discern if eating/drinking/ingesting whatever the article recommends will help me or turn my hair purple or make me sprout wings.
Maybe that’s why I have come to appreciate my cat more and more. He knows instinctively when I need to just be. Now if he only learns that will always include the hours between 5:30-6:30AM…
In A Mirror Dimly 