A Real Conversation
Sometimes I just need a real conversation. It may be uncomfortable. Things I don’t want to hear or share may be said. But sometimes I just need to know the ugly truth.
This is extra true for my rheumatoid arthritis. I don’t benefit from being protected from the truth of my disease. If I hadn’t been told the truth when I was growing up with juvenile rheumatoid arthritis, I would have been lost.
Knowing the truth about my juvenile rheumatoid arthritis
I needed to know why my treatments and therapy were important in order to be compliant with them. I needed to know that I felt terrible because of my JRA and that we were trying all the options available at the time. I needed to know that life with JRA may be challenging, but that my family, my doctors, and I would forge a path for me to build a life.
Truth has been the foundation of my life with RA
If I didn’t know these difficult truths, where would I be? Still waiting around for a cure that has not appeared? Would I have created my heard-earned and well-loved life that I enjoy today?
The hard truth helped me to navigate the challenges of JRA, to plan for challenges likely to come in the future, and to imagine how to manage barriers I could not have anticipated at the time. The hard truth became the paving stones of my life path.
What should my expectations be for my RA now?
Recently, I have yearned for another real conversation. I want to know, as a person who has had JRA now for 41 years and counting: What should my expectations be about how I am feeling? How can I manage the frequent bad days that knock me down? What life changes should I consider knowing these things? How can I best cope with having severe JRA for so many years?
I’m so happy to have found a JRA crew who really knows what it’s like to live with this illness for so many years. We share the real truths we experience. Some of it varies, but we have a lot in common and there is a lot we don’t have to explain to each other because we just ‘get it’. (Shout out and thank you to Kat, Daniel, and Wendy!)
Normal CRP levels, but still having bad days
For the first time ever, I have had a normal c-reactive protein (or, CRP) for nearly two years due to my IL-6 medication. This has been hugely significant for me and has helped me to feel better. But I also just have a lot of bad days. Sometimes, it’s a couple of days per month; sometimes, it is more.
On these days I wake up with severe fatigue, pain, and stiffness. Usually, I can get out of bed, take extra medication, and get along during my day, albeit in great discomfort. But some days are just lost and I only manage to rest or do very little.
JRA progression that can't be undone
I spoke with my doctor and he said we could increase my biologic frequency, but that will just increase my side effects (which I am managing, but more could be really difficult). And when pressed, he acknowledged I have more than four decades of active JRA, with the corresponding damage that came along with an illness that didn’t respond to treatment much of that time. Basically, I have a lot of JRA baggage that cannot be erased.
My JRA brain trust said the same thing. We’re all adults who had an active disease for a long time when there were no good treatments. Even after better treatments came along, it has been a struggle for all of us to find one that would work. For example, the early biologics didn’t do a lot for me. They helped but not as much as my current treatment, in addition to fading out after just a year or so.
Honest conversations lead to better expectations
These real conversations have been very helpful. It has clarified for me that I need to adjust to these bad days by treating myself appropriately with extra medications and rest. Getting back to my aquatic exercises also helps to manage the impact.
But possibly most of all, I need to adjust my expectations and be kinder to myself — I’ve put in the years with JRA and have earned some gentle treatment. Sometimes the real, hard truth is that I just need to take it a little easier.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?