You Know What You Know
Last updated: December 2019
Don’t ever doubt you are the expert when it comes to your own medical care. We might not have that fancy diploma to hang on the wall, but we have experience and that should override most everything else. Here are three recent examples of where I knew best and how sometimes I was even listened to as the ‘expert’.
I recently had surgery, and it required numerous blood draws and the placement of an IV line. How much clearer can I be than to say ‘use the smallest needle you have, because I am a hard stick and my veins roll and often even blow.’ This message is often lost, and I endure multiple attempts to draw a blood sample. I think the nurse listened to me, but I couldn’t swear to that because it still took three attempts to place the IV line. I’ve had phlebotomists appear to take my warning as a challenge, wanting to show me that they know better and having to sheepishly admit after failed attempts that they blew it when my vein blows, leaving me with enormous bruises. It’s happened that way more than once, making me more vocal about the techniques they might try.
Prior to my surgery, the anesthesiologist listened to me closely as I explained I tolerate anesthesia, but they need only to use a very small dose to knock me out. I even joked that all that was needed was a quick wave of the anesthesia magic wand over my body, and received a head nod as an acknowledgment of my knowledge. Post-procedure, it took over two hours for the recovery room nurse to wake me, so long that my husband was apprised of the trouble they were having. I thought the anesthesiologist listened to me, but I couldn’t swear to that either since I was stone cold knocked out. But they can’t say I didn’t tell them in advance.
Post-procedure by just a few days, I began to run a low-grade fever. At least it is what I consider low grade, because my ‘normal’ temp over the past few years has consistently been 97.4-97.8. I can verify this by my medical records because each time I go for an MS infusion, they record my temperature. I’m sure you understand how difficult it is to convince someone you are feverish when you register a whopping 98.8 degrees, especially since all medical information lists normal at 98.6. I tracked my temp over a few days, watching it slowly rise to 99.1, and when I called the doctor’s office, I was told there is often a slight temperature elevation post-surgery and the doctor was confident it would subside. I imagine the nurse was just placating me by ordering urine and blood tests after I insisted something was wrong. I’ve had sepsis before thanks to a UTI and don’t ever want to repeat that experience, and this fever felt oddly akin to that experience. When I was called with the results and prescribed the appropriate antibiotic for a particularly virulent infection, I thanked for the nurse for listening to me, but when I hung up the phone I thought, shouldn’t they listen to the expert all the time?
Advocating for yourself
None of this experience is specific to multiple sclerosis, but just a general reminder about how we know our own bodies and we have to speak up when we need to be treated differently than the standard of care. We know what we know. We may not be listened to all the time, but we have to advocate for ourselves if we want the best possible medical outcomes with the least complications.
Wishing you well,
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: