Posts Tagged ‘Transparency & living with RA’

  • Juggling Life and a Chronic Disease Like Rheumatoid

    Usually when someone hears I have five children, they ask, “How?!” My answer is always the same: “One at a time.” They span about 15 years – it’s not like there were five toddlers at once. Actually, there was never more than one in diapers at a time – so my mom had it much […]

  • Trust and Transparency with Disease Activity, Decisions, and Doctors

    I know you’ll love this guest post from Dana as we see the collision of her experience with the disease, the measurement of disease activity by her rheumatologist, and the decision to change treatments. She conveys so well the process of making decisions about disease management.  This is the whole reason we want to be […]

  • The Tug of War of RA Awareness: Privacy of Pain & Agony of Disclosure

    This week’s post on Rosalind Russell raised some important questions. A comment by Ronda was highly critical of Russell for the way that she hid from the public the severity of her suffering due to Rheumatoid Arthritis. How can we raise awareness if we hide how bad it is? It’s a good question. Rosalind Russell […]

  • Easier Said Than Done: Simple Things That Seem Impossible

    Does anyone ever make a suggestion that they think sounds so easy? The idea is simple, but the reality is more complicated. Sometimes even I imagine it will be easy, until it’s time to do it. Things people suggest for me to do that I find difficult. My brutally honest list. Call your insurance company. […]

  • The Isolation of RA Pain: Short Poem Video

    Most people with RA talk about how difficult it is to explain RA pain to others. It’s frustrating to be repeatedly told that it isn’t or shouldn’t be so bad. Just today, a woman I met couldn’t wait to tell me about her friend with RA who’s able to do so much more than I […]

  • My Birthday Cards to Make You Smile

    By the time I go to sleep it will be my birthday. It is a strange occasion. Just about five years ago, my whole life changed when occasional RA flares became a full-blown disease. Like many of you: not very many people in my life knew what Rheumatoid Arthritis is. Most of them still don’t. […]

  • Stages of Rheumatoid Arthritis Heartache

    Warning: This post is for the faint of heart. Tired of the stages of Rheumatoid Arthritis grieving Yeah, I’m probably not supposed to say these things. Whatever… Some of these RA changes are wearing thin. I never wanted to be branded by anything negative. I’m getting tired of feeling like I’ve lost credibility because of […]

  • What Is it Like to Live with Rheumatoid Arthritis? Part 3: Communication Failure

    I’ve failed. I’ve been writing about Rheumatoid Arthritis for a year and I have not been able to explain exactly what it is like to live with Rheumatoid Arthritis (RA). Sometimes, I think that I need to say it louder or use bolder print or stronger adjectives. One problem is that I try to be […]

  • Chronic Rheumatoid Arthritis, Perspective, & the Church

    Swell opportunities with chronic RA It was a weekend of dramatic contrasts. There was good, bad, and ugly. There was failure, success, and “I suppose one day we’ll see a reason for that!” However, thanks to Rheumatoid Arthritis, I’m accustomed to rolling with the punches and saying, “Whatever.” I try not to stop at “whatever.” […]

  • What Is it Like to Have Rheumatoid Arthritis? Part 2: Why Don’t They Tell You?

    The Usage Principle makes living with Rheumatoid Arthritis hard In the Part 1: The Usage Principle, we discussed a phenomenon which is a daily issue for many people living with Rheumatoid Arthritis. Perhaps you noticed that blog post was unusual in that it did not have footnotes or links to studies which discussed the subject. […]

  • 5 Ways We Can Spread Awareness of Rheumatoid Arthritis

    What is Rheumatoid Arthritis? “Will people ever understand that the autoimmune disease Rheumatoid Arthritis is not the same thing as Gramma’s arthritis?” I have read numerous remarks recently that sound like this. They say: “Impossible. It is impossible for Non RA’ers to understand what actually is Rheumatoid Arthritis.” It can be discouraging. I understand the […]

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