dealing with difficult doctors.
I'm finally coming out of the woods after a 10 day bad back flare and one of the most frustrating things about this disease is not having a champion doctor in your corner. Coming across new doctors when you're a 30-something dealing with chronic pain and an invisible illness on pain medication and a slue of other medications, you don't quite get the best looks when you're sobbing in an ER waiting room to a triage nurse.
This was me on Monday of last week. I recently moved from Seattle to Portland, Or. and I have yet to have the chance to establish new doctors in Portland, because I finally found some doctors in Seattle that are compassionate and empathetic to my disease and situation. I know exactly what my Rheumatology clinic will tell me, "take more prednisone until you get through it." This is a challenge when you're also managing blood thinners, a suppressed immune system and pain medications. It's a crap shoot whats going to help or not. So I've been going to the ER to see if there is anything they can do, but it's hit or miss finding a doctor in an ER that believes I'm in pain and can help stop the "pain cycle".
The last time this happened in October 2017, I went to an ER in Seattle, and after a two hour wait, I was given a pain med shot and a different pain med to see if it kicked in. The next course of treatment from the ER doc was to try IV pain meds. That made bells and whistles go off that I was about to be admitted and wanted to see if the former course of action would help. I was also in so much pain and uncomfortable in that ER room that I just wanted to go back to my bed. So I jumped ship. I headed home and what they gave me didn't work. I regretted that I didn't stay to see if the IV pain meds would had made a difference enough to stop the pain cycle.
So, Monday March 19, I walked into the ER confidently knowing I could tell the doctor what didn't work last time and go straight to the IV drugs. I had packed a small bag, I was by myself, my mom was flying in from California but I couldn't wait for her to get there. So she called a family friend to meet me there. But by the time the my advocate got there I was hobbling out of the ER sobbing to her in the parking lot. The ER doc walked in, assumed it was a pinched nerve gave me a stronger steroid, a different muscle relaxer, a PT referral and told me to sleep it off. I was stunned. He was so matter of fact, I kept asking what if this doesn't work? PT hasn't helped me I've been doing it for a year. But that was it. Part of me couldn't bring myself to ask about the IV meds. I don't know if I'm too scared I don't want it to look like I'm hospital hopping searching for IV pain meds. I'm not drug seeking, but if you heard me scream bloody murder every time I stood up you would know my pain was a 11 on a scale of 1-10.
But what I noticed was different between this doctor and the Portland doctor who scuffed off my pain was that I didn't have my Mom with me. When I was in Seattle I went in with my mom, who was my champion, but also I believe helped me look more "legit" to these doctors. This is incredibly frustrating. My mom lives in a different state half the year, she flew home from California to help take care of me. But I figured I'm a pretty tough cookie, but when it comes to asking for more pain meds I don't want to be judged, I want to follow the rules because I understand how challenging it is to get them. But at this point I can't really care about being judged, I need to be able to function, no one should ever be in that much pain. When you come across a difficult doctor who wont listen to you it's a challenge. This guy isn't the first who has made me feel this way (which is sad).
Here are some things to remember when you're dealing with a difficult doctor.
Bring someone who can be your champion. For me this is my mom or any family matter. It sucks that you need someone else to legitimize your pain and feel like the real deal, but when you're in that much pain and a doctor doesn't believe you, I'll take any extra bit of help I can get. Having someone there who can advocate for you while you're in a pain fog can go a long way. It's hard to make decisions and demand help when you can barley catch you breath from the pain.
Try your best not to feel defeated. This is one doctor, and one opinion. I've had plenty of good doctors that do believe me and want to help, so know they are out there. It's just one bad egg who doesn't get it. You are strong enough to get through this, you just have to keep fighting for yourself.
Go to the nearest teaching hospital. A friend who also has RA mentioned this to me and I never thought about this. I'm lucky to now have OHSU near by, and with medical students there they are going to be more thorough in trying to figure out the source of pain and how to ease it. It makes a lot of sense and that will probably my first stop the next time this happens.
Reach out to your community. I've been asking my social network for doctor recommendations. I know they've been in my shoes, they've had these days and they have someone they like so why not get some physician recommendations from them. Nothing better than a recommendation from someone in your shoes.
It's been hard talking to some friends in the community who have had this experience, I watch their Instagram stories as they are sobbing because when we're in pain seems to be when nothing goes right. When it rains it pours, I've tried to give some advice to some younger girls I've met facing these same issues, and when it happened to me this time, I said, I need to take my own advice. I need to share this advice so you don't feel so defeated and alone. Our pain is real, and we never wish for anyone to feel what we deal with on a daily basis, and especially not a flare, but it would be nice to at least have doctors in our corner.
Pain comes in all forms. The small twinge, a bit of soreness, the random pain that we live with everyday. Then there is the kind of pain you just can't ignore, a level of pain so great that it blocks out everything else, makes the rest of your world fade away until all we can think about is how much we hurt, how we manage our pain is up to us. We anesthetize, ride it out, embrace it, ignore it, and for some of us the best way to manage pain is to just push through it. That's what most of us are doing, pushing through it. But let's advocate for ourselves and find someone to help us through it so we're not alone in this.
Keep your head up darling.