A Cruel Waiting Game

A Cruel Waiting Game

Girl_Who_Cried_Wolf

My life is a waiting game, and a cruel one at that. The fact that my chronic illness has no cure means that I’ll spend my entire life in fear of flares, knowing they’re inevitable and that it’s only a matter of time. It doesn’t matter how good I feel or how well I take care of myself. I’m essentially moving through a timeline in which I’m not just speculating that I’ll encounter health-related hardship — I know it for certain.

Upon my lupus diagnosis, the doctors explained that two main courses of treatment are prescribed for someone with my condition: immunosuppressant medication and a form of chemotherapy. Due to my age, they were hesitant to try the latter because of the consequences it could have on my fertility, among other things.

I’ve spent the last two years waiting for good news. I’ve spent the last two years waiting to hear that I’ve finally made it to the holy grail of outcomes for someone in my shoes — that I’ve made it into remission.

Every two months, I visit my nephrologist, a kidney specialist, and hope that my blood work shows something different. In the beginning, I just wanted to hear something positive. But as my blood work has plateaued over the last year, in a lot of ways it would be easier to hear something negative. At least negative results would give insight into the best way to move forward.

My tests indicate that I have definitely improved since the first hospitalization that confirmed my diagnosis. It’s not enough for them to be able to say that I’ve conclusively reached remission, but it’s enough to know this current course of treatment is working at least somewhat.

A further improvement would mean reassurance that this form of treatment is the right one, and while deterioration would pinpoint the exact opposite, at least it would aid us in choosing the best course of action from here. At present, I’m stuck right in the middle, neither getting significantly better nor worse. This leaves my doctor and me in limbo, the two of us just hoping and waiting. The thing about being in limbo with a chronic illness is that it’s not as carefree as you’d imagine. The uncertainty doesn’t stop it from needing to be promptly handled.

There’s absolutely nothing easy about trying to treat an illness like mine. Everything is pretty much an educated guess. Acting too soon could mean critical consequences for my future, but acting too late can have the same effect, in a different way. And so, I wait at the merciless hands of my chronic illness just like I will for the rest of my life — always hoping that when I turn the next corner, there isn’t a big, black wolf lying in wait to attack.

The fact that I am not in full flare is far from comforting. Every day that I’m not in remission, I have a powerful and potentially violent force living active and inside of me. It’s like living in a village on the edge of an active volcano: There’s a chance of destruction at any moment — and there’s no telling when.

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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.

2 comments

  1. Lupie B says:

    Reaching remission is also only a temporary holy grail. You still worry about the next flare; suffer from ptsd thinking about how bad it was, and could be again. And then there’s the push and pull of wanting to do everything you couldn’t before, and being too afraid and pushing your limits to the point of another flare.

    Lupus is quite an unfair game….

  2. Carol says:

    This is where my 17 year old daughter is at, she was diagnosed at 15. As her Mom I am thankful she is at this plateau while praying for remission and terrified of a backward slide.

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