We begin our series of patient vignettes with Annette’s story of life with rheumatoid arthritis (RA). By sharing her experience, we hope to give you a peek into the challenges some folks face every day.
Story telling builds awareness, understanding, compassion, and empathy – all pillars of true patient-centricity.
Annette is a MedX ePatient Delegate 2014. She’s a patient advocate who blogs at Here’s Your Gold Watch – Rheutired and goes by @anetto on Twitter.
When I wake up in the morning the first thing I have to do is remove the neck brace I wear to protect my cervical spine which has been damaged by years of Rheumatoid Arthritis. Then I remove the resting splints I wear overnight to protect the joints in my hands, and after that I remove and brush the night guard I wear. It is necessary for two reasons. One is severe deterioration of my jaw joints and the other is that wearing it helps with the damaging dryness of Sjogren’s Syndrome through the long night. This is not a picture of myself I paint often and you will find no photos and selfies.
Arthritis usually leaves me stiff and sore in the mornings so it takes a while to get going. To make my life easier my husband brings me breakfast. That’s a big help since even at my best I can’t lift and pour milk from a carton and I tend to drop things especially early in the day. I never skip breakfast: I have morning pills to take with it.
I wear a different set of splints during the day when I work at the computer, to give my knuckles support from below. It’s been over 30 years since I was diagnosed with RA and because of joint damage that occurred early I have to take a lot of care to preserve my joints. After 5 surgeries to my hands and feet I still need a few more.
Lingering in pajamas is not my habit. The orthotics in my shoes make walking so much more comfortable, that I seldom walk around without wearing shoes. I have eye care to do in the morning too. After using a warm compress on my eyes for five minutes I use prescription eye drops for the dry eyes of Sjogren’s. If I use those drops twice a day I don’t have to constantly use over the counter drops throughout the day.
So, four paragraphs of care and I am now ready to get started on my daily routine – posting, tweeting and writing my blog. I have sympathy for others with chronic disease. When I read Dr. Victor’s research about what he calls the “Burden of Care” where he proposes Minimally Disruptive Medicine that would tailor care to the daily lives of patients I feel that I know exactly what he means. Attractive as that idea is though, I don’t see what I can change that would also help me to maintain my abilities to work at the level I do.
I spend a great deal of my day online reading, connecting with friends and being involved in Tweetchats. It’s very satisfying. Writing a blog is a creative act and that is a powerful distraction from my aches and pains. When I see online webinars I tend to sign up, and often live tweet the points made that I find interesting. Many health organizations take pains to make their expert content available to a wider audience.
With weak hands and sore feet I can’t do heavy housework or yardwork. It’s a reality of my life. Long walks are not beneficial to my feet, and standing in long lineups, even at the bank, is difficult. I have pretty well tailored my lifestyle to suit my abilities by now. It is hard to adjust but if I hadn’t I would be less happy. Even at work, after I changed to a managerial role I needed to adjust my surroundings to my abilities. A phone headset, a touch pad mouse, adjusting of the ventilation over my desk and a ‘daylight’ light bulb all helped me.
Thank you, Annette, for sharing your story with us! You are doing your part to bridge the gap between those in healthcare and the patients they serve.
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