Be Ready to Argue
I’m very happy that it’s been more than six years since I was in a hospital facility. I had forgotten how I have to be constantly at the ready to argue and defend myself. But my recent two-night stint in the hospital for a skin infection quickly refreshed my memory.
Typically, I advise people to have someone with you at the hospital as much as possible in order to be an advocate. It’s just a fact that when you are in the hospital, you are not feeling well or sharp of mind for remembering all your health details and don’t always possess the energy to fight battles to correct mistakes.
Tips to advocate for yourself with RA
Thankfully, this time I was up to some battles despite not feeling my best. And I came away with some tips for future hospital visits.
- Bring a list of medications and allergies. At the emergency room and then at the hospital I was asked several times about my medications (and dosages) and any allergies. While waiting I quickly typed one up on my phone and would show it to doctors and nurses. One person just took a photo because that was so easy! Although it was in my record with the facility, it helped to have it on hand and at the ready for discussions with my doctors.
- Don’t be afraid to correct the record as it’s not always right. Despite my having a short stay and being at a facility where my doctors are affiliated, my record still had an inaccuracy! Because I take a medication often used by diabetics, the computer or someone at the hospital assumed I was diabetic even though that is not a diagnosis in my record. They had me on dietary restrictions and even tried to give me insulin! I clarified several times and tried to get the record corrected, but not sure I was ever successful. In the future, I may just omit this medication if I am ever admitted again to avoid this confusion.
- Don’t be afraid to refuse unnecessary tests. My first morning a lab tech came in before daybreak and said she needed to take blood. I asked if this could be done from the IV line, but she said no due to some rule or reason I couldn’t understand. Since I am a very difficult blood draw (they had to use an ultrasound machine to get the IV in the night before and even that took two tries), I refused the test. A nurse was able to draw the blood from my IV, so the problem was solved. But if that hadn’t happened, I would have needed to discuss with the doctors what they needed for bloodwork and who would be capable of drawing from me. After my refusal, the tech moved on to my roommate and just about butchered her — making her shout with pain and not succeeding in the blood draw. Similarly, techs came in several times throughout my stay to say they needed to test my blood sugar because my record said I was diabetic. I also refused these tests and explained I was not diabetic — that it was a mistake in my record.
- Don’t be afraid to refuse unnecessary medications. Also, on my first morning, a nurse came in and gave me an injection of blood thinner. I almost refused, but after my previous fight about the blood draw, I didn’t have the energy. I asked a doctor and learned later that it is standard hospital procedure to give patients blood thinners because they spend a lot of time in bed and may be at risk of clots from not moving enough (or complications from whatever brought them to the hospital). The second morning, I refused the injection because I wasn’t at risk and was going to be discharged later in the day. To me, it was riskier to have blood thinner in my system when I was about to go home! At another time, a nurse came in to give me insulin and I also refused. This was scary because I am not diabetic, they didn’t have a sugar test, and an insulin shot could have made me dangerously hypoglycemic!
- Advocate for your medications. I find it ironic that the medications I actually wanted and needed were the ones I had trouble getting! For example, I take 5 mg of prednisone daily for my rheumatoid arthritis. It was especially important for me to have this since I was off my biologic schedule due to the infection. Yet I had to ask several times over the course of a day to get it. In the meantime, I had my own medications with me and snuck my dose. This was not ideal, but it was necessary. It also took a lot of pushing and asking to get the antifungal pills. It happened, but a lot slower than I would have liked—especially when it worked so quickly to help.
Being your own health advocate with RA requires work
It takes a lot of work to be a patient! I find this is true outside the hospital, but even more true inside. Thankfully, my husband Richard was there to help! But there were a lot of battles and conversations that happened in off-hours or with surprise visits of techs, nurses, and doctors. It helps to prepare with lists, but also be on your toes when it comes to all the details of care.
Did you have difficulty receiving a RA diagnosis?