RA Blog Week Day 2: Active vs. Reactive Patients


I’ve written previously on this topic.  I became a patient advocate in 2009.  From that point, I began to learn the ins and outs of insurance, medicine, pharmaceutical companies, doctors, etc.  I previously had no interest in learning about these things, but like most people with chronic illness, I learned thatI had no choice.  Prior to being a patient advocate/informed patient, I was a passive patient.  I let the doctors make decisions for me without argument.  They went to medical school.  They knew more than I do, right?  My first negative experience being a passive patient with was an endocrinologist.  I had been on Beta blockers for my Graves Disease.  After 5 months on this medication, I woke up in the middle of the night and promptly passed out in a bathroom and sprained my wrist.  I called my endocrinologist and she blamed the situation on having three drinks 5 hours prior to the incident.  I knew in my gut that wasn’t the case.  I asked her about the Beta blockers and she yelled at me for still taking them.  I recall clearly her saying, “Why are you still taking that medication?”  to which I responded, “because you didn’t tell me not to”.  My thyroid levels had evened out, but I thought she would tell me when to stop taking the beta blocker.  She put the blame directly on me.  Trust me when I say, I’ve never not followed a doctors directive regarding medicine.  It was in that moment of being blamed for a mistake made by my doctor that I never took a medication without asking multiple questions again.

About 3 years ago, I was having issues with my blood pressure.  It consistently ran about 150/90.  I was concerned but the physician’s assistant at my doctor’s office assured me I was fine (the doctor confirmed this, too).  I began taking Actemra infusions for my RA  and a side effect was high blood pressure.  I knew I would not be able to continue taking that serious drug, that allowed me to see my ankle for the first time in 6 years, if my blood pressure was too high.  I went into the doctor, met with the PA and expressed my concerns and explained I was trying to be proactive by better controlling my blood pressure.  He said if they put me on a higher dosage of blood pressure  medication, I would pass out.  I left feeling dejected and worried, but I trusted him as a medical professional.  Two weeks later, I was in the ER with blood pressure that was 200/125.  It turned out that my body no longer produced renin and I had issues with my left renal artery (mild stenosis).  This damage was from my blood pressure that was running too high for too long.  I was devastated.  After 20 years with that medical practice, I never spoke with them again.

This began my journey as an active vs. a reactive patient.  I no longer wanted healthcare to happen to me, I wanted it to happen with me.  I began going to the doctor with questions written down, photos of swollen joints to document and would write down the doctor’s responses, too.  I began having all of my doctors copied on my visits because I wanted NO ONE left out of the loop.  I would document all of my discussions about specialist concerns with my new General Practitioner.  I make phone calls to get test results, I log into patient portals and make copies of blood work, etc. to take to my doctor’s appointments.  I’ve taken the time to understand how my biologic drug works and the potential issues that may arise by taking it.  I fully understand the seriousness of these side effects, but I like to be able to walk, so I take the chance and feel lucky that I am still mobile.  My role as an active vs. reactive patient has evolved over time.  My rheumatologist and all of my doctors are my partners now.  It’s a mutual respect for ideas and concerns regarding my treatments.  I will never walk out of a doctor’s office feeling dejected or like a hypochondriac again.  There may be times I am wrong, but I will always follow my gut instincts.  They haven’t failed me yet.

I am proud to be participating in the 2nd Annual RA Blog week.  Read more amazing blogs here:  http://radiabetes.com/blog_week16/day2.html



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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

8 thoughts on “RA Blog Week Day 2: Active vs. Reactive Patients

  1. Indeed sister, we shoudl not have to gamble with health to please others. I think your message is a wise to heed.

    Now as for actemera. I have to say I am so happy to hear of that it was successful for you (except for the blood pressure) It did not work for me at all. I liked the medication and kept on it for 2 years. It just never worked. I hope this was worked out to keep your blood pressure in a stable place?

    Liked by 1 person

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