In August I had the amazing opportunity to attend an arthritis bloggers event in Toronto called ARTHfully Living. It was a lovely occasion to meet other bloggers, and learn how they advocate and cope with the challenges of their own illness. It was also an opportunity to meet new friends and acquire new revelations in writing about our experience.
During a question and answer period with a rheumatologist about the gaps in patient care, one of the bloggers told us how she charted everything about her disease. She wrote down every symptom, from fatigue to flares, energy and how she was coping emotionally. She then makes copies of her accounts and takes them to her appointments so that she doesn’t forget information that might be important for treating her condition. She also brings an extra copy for her medical chart. I remember thinking it was a brilliant idea – and then, 48 hours of jet lag later, I forgot all about it, caught up in the chaos of returning to my life. A few weeks ago, I visited a locum doctor who was covering for my regular specialist while he was on vacation; this wonderful young rheumatologist suggested I chart my symptoms so I could trace the severity of my bad days. It reminded me of that young lady who recorded every aspect of her health. As it turned out, I was to increase my medication, and the very next day, I began to chart my own health. I used a rating system of 0-10 (0 being the best, 10 being the worst). I rated my fatigue, swelling, pain, and stiffness – I also made note of how long the stiffness would last on any given day. I was empowered. I imagined myself marching into my next appointment with a thrilling novella on my arthritic life. This practical ambition fizzled out after ten days….my budding novella was much closer to flash fiction.
I think it’s a great idea to track your symptoms if you can muster the discipline to follow a regular practice – and I applaud that young lady for having the tenacity to persist in keeping track of her health. I’m still making notes every now and then, trying to stabilize my slapdash habits.
As for those lapses, well, I blame it on that notorious RA brain fog…hmmm…brain fog…I think that’s one for the books.
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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.
I was talking to some friends the other day about how much time just managing this disease takes from my schedule — particularly now that I’m on Remicade which is an infusion therapy that takes an entire half day if you count travel time. Just doctor’s appointments and labs and managing drug schedules, plus the times when I feel badly enough that I can’t do anything else. I tend to monitor things when I’m changing treatment plans, but I don’t think that I could do this on a continual, ongoing basis. My goal is to feel well enough that I don’t have anything to track. 🙂
Funny, I can write every day but when it comes to keeping track of my symptoms, I get writers’ block. I would love to have no symptoms to track. What a fabulous goal, I hope you achieve it. Stay well.
“Love” your articles, J.G.!This is a helpful suggestion. I used to plot and diarize my symptoms but stopped. I wondered if it would make a difference in my treatment plan. This time, I am on the annual call back; that must mean my arthritis is stable (r) lol! I have thought of returning to a diarized notebook format or a chart if I could make one! Inflammatory arthritis is such a mystery, a sneaky thief. Weather changes, viruses, stress, exercise, food, all affect the sensitive soul and body. I do not promote a starvation diet yet the less I eat the better I feel. Such a strange condition and I suspect the degree of the symptoms and the self help strategies, yield very individualized results.
I think the biggest problem is that people are too accepting of the condition including many doctors. Often arthritis patients look very healthy. People forget that symptoms can start showing up in children. Most patients politely manage and there isn’t a magic pill to cure arthritis yet it must be treated by a specialist. Patients have to learn to read, investigate and always call their doctors for advice or support. Question! Participating in arthritis studies is helpful and informative. Arthritis is a complicated science! Let’s hope that a cure is found soon.
x
Thanks Grace. I used to work full time for Rheumatologists who were mainly research scientists – there were always studies going on, and I did participate in a couple of them. It was always an interesting experience. And yes, I agree we can get too accepting of our condition sometimes – my previous post was all about that 😉 Arthritis is a wily foe we have to keep our eye on. Hope you are doing well.
I have found diary entries where I meticulously documented my symptoms and treatment. And then there would be year-long gaps where I wrote nothing, or at least nothing RA related. After ten years I would have a magnum opus! But it is important to jot down what’s happening to give you a better idea of triggers or “alleviators”. I use a wall calendar that I keep on my desk. I only get about a square inch of space to write in for each day so I use a sort of shorthand. I mark down pain areas or when I take my predinisone hits. And I especially mark down fun things we’ve done and time with my granddaughter. Balance. Hoping you’re doing better and better.
I find that if something significant or new happens, I am getting better at writing those down. Not only do I have info for my next appointment, but it can help me weed out those symptoms that have nothing do with arthritis. I hope your calendar squares are all about time with your granddaughter 🙂 . Stay well.
There are some excellent symptom tracker apps that will do all the hard work for you. I think they might be easier to do than taking out the notebook and pen. In theory. I don’t use them myself 😉
Thanks Lene, I’ll have to check them out. Although, I’d have to remember to open those apps 🙂