RA Blog Week #2: Active VS Reactive Patients

Day #2 of the Second Annual RA Blog Week asks that we share how to move towards being an active patient.

Motherhood was my first step into becoming an active patient.  With my children only two years apart, I chose to tandem nurse them and because of this, replied heavily on the support I gained from the non-profit organization La Leche League.  In my weekly meetings with other nursing moms, I was given a very special gift.  I was given the courage to understand that ultimately, as my childrens’ mother, I know them best.  Medical professionals are there to guide me, but it was me who watched my children, who knew when things were off.  It was this confidence that took me through years of severe eczema with my daughter.  Since I was the one awake with her into the night as she scratched her skin until it bled, I knew when medications weren’t working and when we had tried them long enough. It is amazing how strong you become in asking questions, reading on your own, opening your mind to alternative treatments, and even realizing when your physician is out of ideas when it is your children who are hurting. By the time my rheumatoid arthritis story started, I was used to questioning doctors, to going home and reading before making decisions, and most importantly, listening to myself.  Ultimately, I am the person who needs to make the decisions for my body. I know my body better than anyone else. 

While I was having symptoms years before I was diagnosed, once I realized there was a problem, RA took over my body quickly.  I started off waking up with stiff fingers not understanding what I had done during the day.  I knew something wasn’t right and scheduled an appointment with my family physician.  He gave me a medication and sent me on my way.  Two weeks later I was back in his office.  He was confused as to why I would return so quickly.  “I know my body. Something isn’t right.”  Knowing my body, I knew something BIG was going on.  We needed to do something different. I will always love myself for knowing my body and for demanding my physician look deeper into my symptoms.  On this second visit, more blood work was taken and an appointment was scheduled with a rheumatologist. (Ha! This was before I even knew what a rheumatologist was).  I had a four month wait to see him.  During that time, it became a challenge to open jars or walk up/down the stairs.  By the time I saw the rheumatologist, I was in desperate need of care.  I can’t even imagine if I had waited the two months or so when I was supposed to return for a recheck with my family doctor. 

As I finally got in to see my rheumatologist, a diagnosis of rheumatoid arthritis was quickly made and I began treatment.  At this time I also decided that I wanted a naturopath to become part of my health team. Why?  Because reading about my diagnosis and listening to my own body had already become habit from my experiences with my daughter.  I knew that no matter what the diagnosis, lifestyle changes needed to be made. Despite my rheumatologist telling me diet and other lifestyle issues didn’t matter, I had the mantra “You know your body best” in my head.  The changes I made with my naturopath will forever be the best choices I have made on this journey.  Working with her gave me a sense of control over my body that was otherwise not happening. 

In the end, we all know our bodies best.  When we listen, we know when a medication is working and when it isn’t.  Our careful ear tells us that we need to make more changes than our doctors are recommending or in some cases, need to slow down a little.  I did this when weaning off prednisone. My body told me we were moving too quickly and I slowed it down a bit.  Knowing your body and listening carefully to it makes becoming an active patient a process that seems natural.  We are the experts on our bodies and when we become active decision makers, we feel more confidence and generally receive better care.   

3 thoughts on “RA Blog Week #2: Active VS Reactive Patients

  1. You said it so well, “You know your body best.” I hang onto that with any medical situation, that I may be facing. It keeps me in control and not the other way around. It's quite a journey we are on. Thank you, for sharing yours.

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  2. You are so correct Cathy. We are all the only sure judges of how we felt. I cannot just give that up. When a doctor says how are you feeling? I give them an ear full sometimes.

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  3. I remember watching an interview with an emergency room doctor. He said, “When parents come to you saying that their child isn't right, believe them. Who else knows the child better?” Good takeaway from La Leche.

    I hope that GPs and rheumatologists are reading RABlogWeek. The message is clear – patients want to be in the driver's seat. That's empowering, as you've pointed out.

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