I sat on the edge of the examining table while the medical resident poked and prodded at my joints, looking for tender spots and sites of swelling. The air conditioning was blowing, and in spite of my burning hands, I felt chilled. The spongy cushion of the examining table stuck to the back of my legs as I was asked to straighten and extend my knees. I could feel the gummy material peel off my skin as I stood up for some range of motion exercises. After an extensive examination, the specialist joined us to review the resident’s findings – early Rheumatoid Arthritis. The conclusions were presented to me and I was given a prescription to start medication and given requisitions for lab work and x-rays. They both looked at me and asked if I had any questions. Question marks flashed behind my eyes like a blinking pedestrian sign, but no words came to accompany them. I mumbled some unintelligible words that seemed to indicate “no” and strode out the door to begin my journey with arthritis.
Being diagnosed with a new disease can be overwhelming. Not only has our life been altered from our symptoms, but suddenly we are swamped with information about treatments, medications and all the mystifying properties of our diagnosis. In the heat of the moment, we often don’t know what questions to ask to help steer us in the right direction for managing and understanding our affliction. Support systems can take time to find, and even with all the best intentions from loved ones, they truly can’t understand the challenges we face unless they’re walking in our shoes.
Last August I had the extreme pleasure of being flown out to an arthritis bloggers event in Toronto, Canada called ARTHfully Living. This wonderful gathering was created by the gracious folks at GCI Group and Janssen Inc. They brought together a collection of people representing all different types of arthritis and related health issues. In this inspiring workshop I like to call Swollen Joints, Flares and Inspiration. , we met our peers, our caretakers, friends and colleagues. We shared the toils and victories of our struggle with disease. We discussed numerous issues, from doctors’ appointments, medications, lifestyle modifications, and the ever-changing vortex of our symptoms. We talked about the things that were important to us as patients, and communicated obstacles we’ve encountered in the medical system, our jobs, and sometimes, our families. One of the many things that evolved from this lively dialogue were questions we wished we’d asked at the very beginning of our diagnosis.
Based on interviews and suggestions from the roster of RA bloggers, here is a summary of the list of questions developed with support by Janssen Inc as a guide for newly diagnosed patients:
- What caused my rheumatoid arthritis?
- How might my rheumatoid arthritis progress and what is my prognosis?
- How advanced is my rheumatoid arthritis?
- If I’m diagnosed with one autoimmune disease does it put me at risk to develop other diseases?
- Are there any lifestyle changes you can recommend to help manage my rheumatoid arthritis? Can I continue to stay active while on medication?
- Do you have any suggestions on how to share the news with my family, friends and coworkers to help them understand?
- How bad does a flare need to get before making an appointment to see you again?
- What are my treatment options? How quickly will they start to work?
- What are the potential side effects of my medications and how will they be monitored?
- Where can I find more information and resources and support? Are there any programs available to help me manage my rheumatoid arthritis?
These are but a few of the thoughts that surfaced as we looked back at our first days with RA. There will always be more questions along the road, but perhaps these suggestions will help pave the way to getting back on the road to wellness. My biggest question will always be “how did I get this?” I may never find the answer to that particular question, but I’m confident I will find signs that will guide me onto the right course throughout my journey. We all forge our own path through disease. The route one person takes may not be right for another, but there’s comfort in knowing that no matter which path you take, there’s sure to be some company along the way.
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About me
J.G. Chayko is a writer, actress, and international arthritis advocate who’s been involved in theatre for more than 30 years and has published poetry, fiction, and creative non-fiction.
You are so right that the diagnosis can be a bit overwhelming. Most of us have no idea even what to ask. These are great questions and many are valid as we move forward on our journey. Thanks for a terrific post.
It was funny how getting together with others in the same situation, and looking back made me go, “wow, why didn’t I think to ask those?”. I’ve learned a lot since then ;). Hoping things are still improving for you. Hugs.
Excellent questions, JG! I wish I’d known to ask them when I was DX’d in 1987. But I have a feeling my doctor, a young Army internist, wouldn’t have been able to answer most of them. He only told me that I had RA, that it was an autoimmune disease and what that meant, and that it was incurable but he could prescribe drugs for it. I really didn’t learn much more until I started researching on the Internet in earnest in 2005.
Great post. I could feel your discomfort on the exam table and cringed mentally right along with you! Wishing you the best–but not your Old Lady–as always. 😉
Thank you Wren. Things are certainly better in this heat wave, although I know for you it’s not the same. I think it was a few months into my own diagnosis when I started asking questions, but certainly nothing like this list we acquired during our event. And even working in the environment at the time, I was still at a loss as to what to ask for my own situation. I hope the dragon is not too fiery these days – there is some rain and stormy weather in the interior of our province I hope to send your way for some relief. Hugs.
Great post! Very informative with absolutely vital information. So many things go through your mind that it all becomes a jumble and nothing comes out until you’re on your way home. Even those of armed with clinical knowledge are lost in the moment.
Yes, I was definitely lost in the moment… my questions came out over the months through my journey, but I always wonder, would it have been different if I had asked them in the beginning. So lovely to hear from you and hoping all is well xoxo
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