When I was a child, I remember the quiet urgency of my visits to the rheumatologist. The blood tests, the questions, the non-answers.
How was my inflammation? Are the blood tests showing signs of improvement? Is the medication working? Is she getting better? Is she doing her exercises and physical therapy? Are the joints swelling? Is there anything else we can do?
Every visit was a quest for hope, for progress, for signs. At the time we were so focused on trying to stop this aggressive disease, trying to find something that would work against the constant, unstoppable force of my disease.
All these years later it is different. I have my joint damage that I’m living with. The disease did its work on me. And not that we don’t want to halt further damage, but it is a different conversation and a different focus.
My rheumatologist begins our visit with the same question every time: “Kelly, how are you?” He doesn’t look at bloodwork first or the computer screen. He looks into my eyes, examining my face. He is trying to assess how I am feeling.
This approach has been a change for me. I’m used to analysis by numbers and never measuring up. But my current doctor wants to know how I am feeling because sometimes the numbers do not match. I have felt terrible with better numbers. I have felt OK with fantastically bad numbers. Somehow in his experience my doctor has found that the accepted measures don’t always add up. A person’s wellness cannot be measured in numbers.
Recently I have been struggling with feeling terribly and skyrocketing inflammation numbers. In this case, the blood test results confirmed what my body had been telling me for weeks (and what I had been trying to ignore).
What started this recent RA flare? I wish someone knew the answers. Was it the weather? Stress? A change in the planets or a change in the effectiveness of my medication regimen? We’re tinkering and hoping that we can find an improvement with a change in dosage, perhaps a change in treatment altogether.
But my recent lack of wellness (relative for me), makes me ponder how it should be assessed in the first place. For example, I have no expectation of my inflammation indicators dropping into normal range. While I had a few years of slower activity during my college years, it never fully went away and I think the nature of my body with RA will always result in inflammation.
So, for me, numbers are a guide but not a reliable measure of wellness. I can’t rely on the numbers because they will always be either bad or less bad, not good or acceptable.
Wellness means being able to get up, go to work, and go about my day. Wellness means the RA is always there, but not always on my mind. Wellness means I can live the life I enjoy without thinking every second how exhausted I feel.
From the outside, my wellness may not look well at all. But I have come to understand that I have to measure wellness in my own way and convey that to my doctor during our visits. My terms of wellness tell him whether or not I am able to live and prosper as best my health will allow.
And then we go from there, making decisions on how best to keep me well without incapacitating side effects or fearing (too much) the long term consequences of my treatment. Perhaps someday the test will be better, the treatments will be perfect, and the numbers will add up. But that is not the case today, so wellness will be defined on my terms as best as I can.
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