Living a mysterious life.
That should be a song.
It’s my life.
No. It’s not that I am hiding things. Okay, I am hiding things, but only from myself and they are actual things, not secrets. At least I don’t think I’m hiding any secrets from myself. Not that I know about anyway.
My life is a mystery because I have lupus.
Few people don’t know what each day will bring to them. It is said that tomorrow is mystery. For me, that is true every single morning.
I wake in the morning not knowing what the day will bring but also not knowing if I will be able to get out bed, or get out of bed with the aid of pain killers. I wake not knowing if I will be able to walk in a somewhat normal manner, or if I will stagger, limp, and spend the day looking like I had a more enjoyable night than I actually had. I wake not even knowing where I will spend the day.
My body has been invaded by an alien named Pain. Pain loves me, and therefore will not leave me. I do not love it. If the alien would remain in one place as in ‘localize yourself you freaking alien’, I could favor that part of my body. My Pain is not localized, but prefers to surprise me by moving freely hither and yon throughout my entire body. After 23 years of living with this disease and Pain, I have yet to find a way to favor my whole body and still move. I’m working on mastering that skill.
I often wake with severe headaches. If they aren’t present upon waking, it’s most likely they will make an appearance during the day. These are not the normal tension/sinus/hangover headaches. These are of the devil and there is no known medication that will banish them from my head.
Nausea is my constant companion. Some days the normal nausea morphs into super-not-going-away-anytime-soon nausea. My last battle with this demonic aspect of lupus lasted 9 V-E-R-Y L-O-N-G W-E-E-K-S. Those 9 weeks were longer and more difficult than the nausea that was ever present during either of my 9 ½ month pregnancies. I live in fear of either of these occurring again. Nausea is not my friend.
I wake not knowing what I will wear that day. Oh how I wish I could prepare my clothes the night before. It would make the morning routine much easier. I can’t for I know not what size I will be from one day to the next. Swelling comes and goes bringing with it the ‘8 month pregnancy look’, ‘no fittim boobs’, and feet that refuse to be shoed. It’s a battle I win because I possess 3 closets full of clothing in 6 different sizes. I could clothe 3 counties if lupus were cured.
I wake with a head so foggy I am unable to prepare a lunch, pack a bag, or locate the keys to my care. Fortunately I have learned to pack the bag and put it beside my purse, the keys to my car, and my sunglasses each evening. Lunch remains up in the air and is normally decided by which wrong turn I take on my way to the post office during my lunch break.
Most days I wake not knowing what day it is. On occasion I wake and not know who I am. It’s not Alzheimers. It’s lupus fog, lupus brain, lupus um, lupus um, lupus. Dammit. I forgot what the other name for it is. If I didn’t have a book that I write everything in I would wander through the day lost, looking for the map or directions to my life. I wouldn’t know what to do. Where to go. Who to call. What to purchase. Or anything else without my blue book. Heaven forbid I should ever misplace the book for I might not remember the book exists. That actually happened once. I was lost for 1 ½ weeks until it was located in my vehicle.
I live my life knowing it is a mystery. I pray that it will one day be solved, but I am also a realist. I’m okay with that. My mystery may never be solved. I have surprises each day, and many things to do that I’ve forgotten I’ve already done.
From the life of Wanda M. Argersinger
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