I began writing this post yesterday…
I do not discuss my lupus much here on the blog aside from the occasional mention. I was diagnosed at 15; I’m now 33. There just didn’t seem to be much to say that hadn’t already been said. Yesterday, however, we moved to the next “phase” treatment and I feel compelled to say something in this juncture.
For 18 years, I have lived in the “lupus inbetween,” vacillating back and forth amidst periods of exacerbation and stability. Though the initial years were horrible and my pregnancies rough, I haven’t required much more than a maintenance drug, some pain pills, and steroids to get through flare-ups for about 15 of those 18 years. While not pleasant, it could have been much worse for me. I know people who were diagnosed in recent years that have required more aggressive treatment than I ever have. It’s like they say, if you’ve met one person with a chronic illness, you’ve met one person with a chronic illness. Every lupus patient is different.
The last six months, however, have been incredibly difficult. At my last visit to the rheumatologist, he remarked on the “miracle” of me going 18 years without requiring more, even as he pumped my veins full of solumedrol and sent me home with oral steroids. This has been required at every visit since December of last year, so when I went in yesterday, I thought maybe I was in for more of the same. I was wrong.
To make a long story less long: the doctor suggested that we move to a chemotherapy drug to treat the next “phase” of my lupus. She ultimately left it up to me after explaining all of the pros and cons. She gave me a tutorial via analogy about the mechanism by which the drug works in lupus patients. She reassured me that my dosage will be but a fraction that of cancer patients’. Then she told me that I will have to be monitored closely and have blood levels checked more often. It will likely wipe me out, make me nauseous, and cause other unpleasant side-effects the day after I take it. It will take a full 6-8 weeks before we see it working. She explained this was the next best option and that it’s not as bad as it sounds.
I took my first dose last night, slept like the dead, and woke feeling more exhausted than when I went to bed. I feel sick and my head hurts. But if this helps the lupus and the side effects diminish over time (and are only limited to one day a week), it’s a trade-off I might be willing to accept.
Many people have read the spoon theory analogy of chronic illness. I recently reread it and began to feel uncomfortable with the “holier than thou” tone toward the end. Yes, I want people to show empathy to those with differences whether they be physical, emotional, mental, neurological, etc, but I think maybe the spoon theory rather leaves the healthy reader feeling pity instead. The analogy of spoons is apt (everything you do each day costs you “spoons” and people with chronic illnesses begin their days with far fewer “spoons” than do healthy people making it very difficult to get through each day). Yet, the presentation delves far too deep into the “woe is me” factor and definitely puts the burden of guilt on healthy folks who should not feel guilt over their well-being any more than I should over my lupus or my son should over his autism.
When I was a teenager and in my early twenties, it didn’t occur to me that I was placing this heavy load on my loved ones by sharing it with them. Now I feel some strange form of reverse guilt about it. Yes, I’m in pain every day, but I don’t need to make other people feel bad about it and I definitely don’t want them feeling sorry for me or for anyone with differences. I’m living my life and so is everyone else. We’re all doing the best we can to get through each day.
As most of you know, my favorite television show is Buffy the Vampire Slayer. At a pivotal moment in the series, Buffy makes another heroic and heartbreaking decision to save the world. She tells her little sister, Dawn:
The hardest thing in this world is to live in it. Be brave. Live.
Chronic illness is hard, but perhaps even harder than that is just living in this world. As we go through the hard work of living, we’re all in the same boat, doing the best we can, with the help and company of others along the way. By the grace of God, we make it through even if we feel like we are only muddling along. I guess what I’m really saying is that we have to be brave, friends. With or without sickness in our lives, God has given us life (or, if you prefer, some cosmic accident, or universal-mechanism brought us into being), and we must live.