There was a visitor in church today. I didn’t recognize him, he didn’t remember me, but he really took me back.
For his 40th birthday he and his wife had decided to go do a road trip and visit where he’d served as a Mormon missionary as a young man, and our ward was a place he’d remembered fondly.
For twenty years.
Twenty years ago last month I was diagnosed with SLE, ie, lupus. (The Crohn’s add-on with SLE cells came nine years after that.)
My kids were 2, 4, 6, and 8, and I had no idea if I would live to see them grow up. My mom’s cousin had died of lupus a week before her wedding date. It did not help when I read outdated literature that described some of my complications and stated baldly that five years was the outside of such a one’s life expectancy.
I had severe rheumatoid-type arthritis the first six months, to the point I had to use plastic utensils to eat. My ear doctor, to whom I will forever be grateful, figured out when I had a horrific day of complete, utter stone-cold deafness in reaction to naproxen that my progressive hearing loss had been an allergic reaction to aspirin all along–thank goodness it came back to what it had been when the med wore off.
So no NSAIDs. No pain meds other than tylenol, and even that was out later when I went on chemo for the Crohn’s. I was severely allergic to Plaquenil. I utterly refused for years, until it was a matter of life and death, to try potentially mind-altering steroids–let me at least keep control of my brain, if I can’t control anything else! (And then my brain handled them just fine but they had not the slightest effect on my disease.)
I was on my own with this. Well, heck, I got through childbirth, now we were just going to have to have lifebirth. I invested in Corelle and set the stoneware aside. I began to learn how to give up the outdoor life–while wondering what on earth effect it would have on my kids!
I started to learn to cope. I’m still learning to cope.
I have no idea how we got through it. I have no idea how we did it. But look at us now; I think we did okay. Actually, to be honest: I think this helped me grow up far more than I ever could have without it, shaped me into a more compassionate human being, shaped my children into being more compassionate human beings, and I am intensely grateful for the experience.
I’m also unspeakably grateful that right now, it’s in the closest thing to remission I have had in all these twenty years.