Living With Rheumatoid Arthritis: Navigating the Medical System

RA Guy Community News 6 Comments

Through all of this I’ve learned that I have to be my own best advocate. This means taking time out of my busy day not only for doc appointments but to make phone calls between the various providers and organizations. Sometimes I feel like a pest…call the pharmacy to check, call the doctor’s office to check, leave a message with the busy nurse, call back, request a fax, call the next week to check on the status of the prescription, check with the insurance company, repeat information multiple times, check the status of a shipment through the parcel company, fill out a form for copay assistance, and the list goes on. As much as the people show care and compassion, they don’t have the time and/or personal interest to always go to bat for me. So, in addition to fighting RA, I find that I have to expend energy navigating the multiple layers of the medical system. I don’t have solutions but am keenly interested in the debate around national healthcare for the first time in my life.

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Comments 6

  1. Michael

    I hear you, noone is going to just hand you anything. You have to fight for your health, which means putting in a lot of hours on the phone/dr office/pharmacy. I have 6 different appt.’s every month- I could have a 2’nd job for the time I spend being my advocate-if only that paid cash. Be nice if there were standard procedures & automatic help for people dx with RA, but alas we must navigate!

  2. Rebecca

    I agree, Michael. I’d like to see the AF or some other organization provide guidance to those with RA. I’ve had it 30 years and sometimes I could still use help navigating the healthcare industry!

  3. Marianne

    My husband and I bring large bags of candy to the nurses and staff at my Rheumy’s office. We get something special for the office vampire (phlebotomist who draws my blood every visit!), because she’s armed with needles! (we call her that in the office – she likes it!) Anyway, we find if we show them some special attention, they do the same with me.

  4. Deborah

    That’s sad though Marianne, everyone deserves the best care the nurses and staff can give, shouldn’t have to bribe them with candy!

  5. Connie

    I’m an LPN with RA and back in school getting my RN. Hoping I don’t drop everything I pick up from the weaknes in my hands. And praying it is a day that my medicine doesn’t make my hands shake. Some of us nurses do give the best care we can to everyone with all the compassion we can have because we also know what it feels like to live with pain and to live with it feeling like no one else understands because “you don’t look sick.”

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