When to "cry uncle" - determining how much is too much lupus activity.

Continuing from Wednesday's post, question number three still lingers in my current medication debate. I find that as a patient, it helps to do some personal inventory outside of my appointments with the doctor. This allows me to make the most studied, informed decisions regarding my health. Of course, no matter what conclusions I may come to, my doctor gets to weigh in on the situation. I could show up to my next appointment, and he may tell me that my kidney function isn't good, or my lungs aren't clear, or my blood tests are out of whack. Any of those might necessitate a change in medication or treatment, which would make whatever decision I've come to obsolete. While I would never dismiss or disregard my doctor's instructions, there's no question that doing my own personal R&D will make me a more prepared collaborator during those appointments. 

So question number three - If the pain is tolerable, can I keep up the charade? As you know, I've upended many aspects of my life to accommodate my disease over the years. I've inserted naps, rearranged agendas, cancelled plans, and revised goals in order to do what I can to keep disease activity at bay. And I've reached a comfortable level of living well, despite those accommodations. While I know my life with lupus isn't necessarily normal, it's my normal. There's a certain level of predictability that I've come to expect, and it works. But for the past few months, I've been forced to create additional workarounds throughout the day in order to stave off severe symptom activity.  And the question is - how long can that go on before I conclude that those new lifestyle accommodations are abnormal? When do I decide that I'm no longer living well, despite lupus? 

My dad and I were talking about how difficult this can be to figure this out. If you're like me, you try to put a pretty positive spin on life as it is. In fact, my dad referenced a book that I'd recommended to him awhile back, "Flying Without Wings", by Dr. Arnold Beisser. (I blogged about that book here.) Dr. Beisser says there's a certain "degree of denial" that's necessary for any of us to carry on in this crazy world, given whatever your cross to bear. And I completely agree with that. But because of that fact, I made a promise to myself years ago, once I'd recognized how permanent this whole lupus thing was going to be. I could think positively, and I could hope for the best. But when it came to assessing how things were really going, I was going to need to muster up the courage to distinguish hopes from reality. I needed to be strong enough to take a step back, and objectively evaluate how good (or bad) my disease activity was. 

What did that mean? It meant I wouldn't lie to myself. I wouldn't pretend to be "feeling great", if I really wasn't, nor would I lower my standards so that I could say things weren't "that bad." Of course, this promise came after years of doing just that - acting like the disease wasn't affecting me, even though my body was saying something else. After finally learning how to embrace my disease rather than fight against it, I concluded that being honest with myself is essential for living well. 

So - I'm not going to pretend that the changes I've made over the past few months aren't out of the ordinary. The trips we've put off, the nights we've stayed in, or the appointments I've cancelled in order to try and keep this flare from progressing are not long-term solutions. Those are things I do in crisis-mode, or should I say, flare-mode. When it comes to living well as a permanent state of being - my definition includes a certain degree of painlessness, while maintaining a personally fulfilling lifestyle (whatever that may look like). And if there's a way (via methotrexate, cellcept, or some other big gun medication) to achieve that personal level of comfort and fulfillment, then I say bring it. 

I have too much to do and too little time to waste pretending that my joints don't hurt. I can plot all day long, but if at the end of this tapering period, my level of pain is unacceptable to me, then I need to do something about it. And if my doctor has a solution, I'm certainly going to take him up on it. 



Cass said…
Great post as allways! I love this blog - it was great when I was diagnosed :)

Sara Gorman said…
Loving your new blog too! Thanks for stopping by. Do so anytime!

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