One of the welcome shifts under way in medicine is the move towards “shared decision making,” where hubris and hierarchy give way to humility and equality.
Radio Silence: Adventures in Leaving a Physician’s Practice
Recently, I left my rheumatologist’s practice. There were two major reasons for this: I live 7 hours north of the practice and no longer travel south, A, and B, major communication breakdown.
It took me over a month to get a single refill of Kineret and countless voicemails returned—something that a single phone call and a small amount of paperwork would have resolved. I went without Kineret for weeks in April.
In my leaving the practice, I need my medical records and a referral to a clinic closer to where I live. I have called my rheumatologist’s assistant every week for the past three weeks (today marks week three), leaving my reason for calling, my name and number, etc.
No response. I had the new clinic fax a referral form last week. No response.
These administrative issues and breakdowns in communication within a physician’s practice have real-life consequences. We’re not just talking about a referral form that gets delayed or a phone call that doesn’t get returned: we’re talking about a patient whose care is being delayed while they are not well. This is my life. I’m in an active flare that seems to be intensifying by the day, and would really like to establish myself in a clinic closer to home. Without this referral, I cannot receive care.
How this is seen as not important enough to address within a 21-day period is beyond me. I get that this practice is extremely busy. I understand my physician is working hard, is likely stressed, possibly underpaid and understaffed. I understand—the system makes it terribly difficult for providers and that is not the fault of my rheumatologist by any means.
But at the end of the day (or a 3-week period…), when that phone call doesn’t get returned and that referral form doesn’t get faxed, who goes home with a paycheck and who goes home with pleurisy..?
Trigeminal Neuralgia in the Emergency Room: The Worst Experience I’ve Ever Had
The pain started around 11pm. It’s been a while since I’d had an attack at all, so I figured I could push through it the way I usually do. I’d never gone to the emergency room for pain before, but this was different. I quickly found myself in the worst pain I have ever experienced. Ever. And for perspective, I’ve had two thoracotomies, chest tubes, urethral stents, you name it. This was the worst pain I had ever experienced.
My friend got me to the hospital and they took me directly back—drooling, dripping snot, swollen eyes, and moaning. My hands were shaking and I couldn’t even fill out the paperwork. The triage nurses were fantastic and understood the intensity of what was happening. I was brought back into a room right away.
I was treated by a nurse practitioner who took one look at me, did no neurological exam, and said “we really don’t know how to help you since opioids don’t work for neuropathic pain.” At this point I was barely able to speak, and made it clear that I came in because I had never experienced pain like this and obviously was unable to treat it at home. I did not demand narcotic pain medication, however I demanded finding SOMETHING to get my pain/inflammation level down.
Perhaps the rocking myself back and forth, moaning, skyrocketing blood pressure, swollen eyes or swollen face, shaking, not to mention the dry heaving into a blanket didn’t give away the fact that I was in agony.
A registration tech enters the room to take down history and insurance info. She is so upset by my condition and the lack of responsiveness from my nurse(s)/overseeing attending that she actually leaves her responsibility to find out what the my “team” of providers were up to. She did this not once, but THREE TIMES. Without me asking. And each time she would just shake her head, say she’s sorry, and try to soothe me. That woman is a fantastic provider, let me tell you.
45 minutes goes by. I sat on that exam bed rocking myself back and forth. While I sat there, I imagined myself yanking out my back molars with a pair of pliers. The friend that I was with, Viv, was able to speak for me since I was absolutely unable to advocate for myself. She goes and finds the staff, asking why they are not starting a line when I’m in visible and audible agony? They tell her they’re working on it. Another 20 minutes.
Eventually a nurse comes in with a needle. She gives me the shot in my arm and mentions that she gave me Ativan. Great. So you’ve given me IM ativan which takes about 30 minutes to work (only they don’t tell us this until Viv harass them about why it’s not working) for a patient who is WRITHING in pain. All of the clinical physiological indicators of a 9 on the pain scale were present…and you’re using medication delivery options that take significantly longer than if you would just infuse them..? If I was male or had a kidney stone or a severed limb, would you be handling an emergency like this?
She leaves again. Another 45 minutes with zero communication. Pain has not changed and no one is even asking me about my pain level. Someone is standing outside my door watching me with a weird smirk. I didn’t need sedation. I needed pain/inflammation relief. And the sedation did not sedate me.
I thought maybe it was the level of pain making it seem like we’d been waiting a long time, but it turns out we actually had been waiting nearly another hour. So I was no longer hyperventilating, instead I was curled in a ball rocking myself back and forth. Snot and drool still dripping, bed sheets still being gripped, moaning not stopped. Agony. My face is on fire. Please just make it stop. Viv goes out into the hall and asks what’s going on and what their plan is—I told Viv specifically not to demand pain meds, as we had very much gotten the vibe that they weren’t taking me seriously. Viv found them sitting at the nurse’s station on their phones. Their only plan was to give me the Ativan and let me sit in that room until the worst pain I have ever experienced just magically resolved itself, until I was “no longer anxious.” I had never been anxious. I was in agony! Why was this so difficult to understand? I honest to god felt like I was being passed off as the “hysterical woman” kind of sexist diagnosis thing.
A nurse comes back in and asks me if I think I’ll be able to take a pill now that my anxiety is better. At this point it’s evident that they are definitely not going to start an IV line on me and that they very seriously don’t care. IV steroids are out of the question.
So she brings me a cup and two pills. I ask for a straw, since it’s the only way I’ll be able to manage to get these pills in my mouth and down my throat. I get them down. She makes a comment about how “now you must be having jaw pain?”
No. No, I’m not having jaw pain, I’m having trigeminal nerve pain of the branch that runs through your face. So movement, vibration, touch, drinking, temperature changes are AGONIZING. You’d know that if you’d asked me even a single question or determined my chief complaint.
I ask what she gave me? Percocet. The exact same medication I have at home—the one that didn’t work. Now I know using opioids for neuropathic pain is a challenge, often futile. But that is NOT a reason to not try to relieve a patient’s very obvious agony. Steroids, maybe, ANYTHING. That’s like saying “well we’ve never seen a broken limb quite like this, so we’re not going to treat it.”
Dr. Douchebag finally comes into the room 3.5 hours later. And proceeds to mock my attempt at covering my face in lidoderm. Viv and I exchanged glances. Rude. At this point I was getting my ability to speak back, but I was whispering as to not move my mouth as much as possible. Dr. D snidely remarked about why I found it “necessary” to whisper. And then got annoyed when I tried to spell out a medication and he couldn’t understand me from across the room.
It was apparent from the moment I was brought back into the room that they didn’t want to put in the effort. Refusal to treat, refusal to consult with another colleague, refusal to even google treatment protocol. Maybe that was because they were trying to wrap up their shift, I have no idea. But they didn’t try, that much was clear. And this was only compounded not by poor communication, but by NO communication at ALL. These providers did not re-assess my pain, no vitals, no nothing! It was like they decided to take a late-night break and ignore patient responsibilities. They didn’t disclose their plan, didn’t disclose what medications they were administering, nothing. We were just sitting there in that room for hours while I writhed, cried, drooled, dripped snot down my chin, fantasized about yanking out my teeth, my right eye twitched, and begged someone to make it stop.
I have never felt more helpless. I’m a big believer in saving my 10’s on the pain scale. But I’ll tell you what. That was a 9.3. It was the kind of pain that makes you want to actually remove your teeth or end your life. I don’t ever want to experience that again.
The best part? Upon leaving they handed me discharge papers: “Trigeminal neuralgia is a highly distressing and disabling pain disorder. Seek immediate treatment at ____ Emergency Room should your pain become unbearable or your medications fail to work.”
I learned the meaning of that word tonight. Unbearable. I deserved better. That was just torture. What took hours could have taken a whopping total of 30 minutes if they had just started a line. But of course, that would require them to take me seriously.
I did my part: I brought in my meds, letters from my current doctors, my medical records. I was polite, did not demand certain drugs, did my best to be understanding of staff needs and protocol.
So, Tallahassee Emergency Room, I will not be coming back for this “highly distressing” emergency situation (should it ever happen again). I do not know what is more terrifying: agony so intense you actually seriously think about pulling your own molars out, or the fact that the largest local medical institution is willing to write off someone’s agony as anxiety in order to avoid a lengthy trail of paperwork at the end of a shift.
There are some really amazing comments in the reblogs, the response to this is more than amazing. But I just want to make something clear: this is not us vs. them, patients vs. providers. These three individuals in charge of my care are the minority. I blame those three people and it’s true, I have empathy for them— how much stress they must be under in a broken system in the middle of the night in in urban emergency room. But there is no excuse for the care (or lack thereof) I received. Most importantly: not all doctors, nurses, nurse practitioners are like this. We as patients have to remember not to make generalizations about our health care providers, they same way providers need to treat us all as individual patients/people.
And absolutely, I will be filing a formal complaint and taking it further. No, I sure as hell am not paying that medical bill! I will identify which ER this occurred at when I know what the next step is.
American Society of Health-System Pharmacists
There is yet another Methotrexate shortage affecting patients. If you’re due for a refill any time soon, PLEASE call your pharmacy and make sure it is available or start hunting for places where it might be available. More details in the link provided.
It’s Rheumatoid Arthritis Awareness Week in the UK!
Again, I really have to commend nras-uk on their awareness materials. So glad to see awareness materials addressing not just fatigue, but the impact of fatigue—on sex, no less!
You can follow NRAS here:
There is a thin line between a “new normal” with active inflammation (I am never entirely pain or symptom-free) and a “big” or “full on flare. For the past few days, I’ve been riiiight on the edge of crossing that line. My fatigue caught up with me in a way it hasn’t in quite some time and my GI symptoms have resurfaced. It’s not uncommon for me to flare when the summer heat (and my stress level) starts to get intense, but I know where this is headed.
So today, I quit.
I quit a commitment I made to a volunteer position a few weeks ago.
It was demanding, ~9-10 hours a week + the studying for the training. It was challenging me and I really believe I would have benefited from sticking it out. But, something had to give.
Learning how to take a step back without feeling inefficient, incapable, incompetent has been an enormous challenge for me. I’m still learning. Last month, I reached out to friends to ask them to take the lead on certain projects. Sent emails to certain mentors/leaders to ask them to support me taking small steps back. It feels inherently wrong—I have spent my life swimming against the current; to suddenly change course mid-swim feels wrong. But the way I grew up was “wrong.” I don’t always have to swim against the current. I don’t have to struggle—there is not always success or strength in the struggle.
I want to give 100% to Medicine X. I want to give 100% to advocacy. I want to give 100% to academics. I want to give some serious effort to my social life and community work. And perhaps most importantly—I need to give my body 100%. I can do these things, but it’s a delicate balancing act.
I did the right thing, made the healthiest decision for my body and mind, and this isn’t “failure” or “incompetence.” It is my new normal, and it’s okay to embrace my new normal instead of fighting it—even when others do not understand the way I delegate my time and energy.
I was able to see a health decline incoming and take proactive steps to (hopefully) prevent that decline from turning into a major downward spiral. That’s a little victory as far as I am concerned.
I am tired. I have been tired.
So I quit. I’m sitting this one out. Letting go. And that’s okay.
I’m wondering, how many of you struggle with finding balance? Do you struggle with saying “no” or taking on too much? How do you overcome this or learn to balance your priorities better?
Stanford School of Medicine Design for Health
The last Design for Health class of the semester will go live at 9PM EST/6PM PST here! My speech is in the first 5 or so minutes of the class, but please watch the duration of the program—it’s a fantastic watch for patients and providers alike. Med students, specifically, this is for you.
- Each class is accompanied by a live discussion online using the hashtag #MedX.
- We will be taking questions from twitter, so please tweet Chris Snider @iam_spartacus with your questions or comments.
- Med students/providers looking to preserve your anonymity: join under a pseudonym and send your questions—we need to hear from you, too, not just patients.
A huge thank you to everyone who submitted photos. unfortunately, I did not receive any input from health professionals or health students. But the patient responses were absolutely fantastic. I was unable to include them all, but the ones that didn’t make it in will be included in my speech slides in September.
I hope everyone will tune in,
June 5th Ignite Speech at Stanford School of Medicine MedX Design for Health
I am so excited to announce that I will be flying out to Stanford School of Medicine to speak on June 5th! You can watch live by tuning into MedX Design for Health at 6pm PST (9pm EST), but more importantly, you can join the conversation via a live chat using the #MedX hashtag. We will be taking questions from the class as well as online audience, so please tweet me or the moderator (whose twitter I will link shortly) your questions or comments.
I’m honored to have this opportunity to share my story and I hope everyone here in the Tumblr patient community will watch and join the conversation. We’d love to hear what you have to say—your story and your input matters.
More details to come soon.
Q:I've had people with no medical problems suggest that I caused or can stop my autoimmune disease with diet while completely unaware of the fact that I can't eat most foods to begin with. And the people that think the pharmaceutical industry wants to keep me sick. Oh and the people that seem to think that "negativity" can make you sick. Do you have any advice on how to deal with the holistic healing people who think they know more about my body than my Doctors and me?
This is really tough. I get this constantly in person and from people online through my Tumblr inbox, email, and blog comments so I know exactly what you’re up against.
Everyone handles this differently so I can tell you what works for me, but I can’t say it’ll work for you.
For me, it really comes down to who is making the comment. New friends that mean well? Usually I take the opportunity to educate them and then drop the subject. If it comes up again, I make it very clear that while I appreciate their efforts, I am doing absolutely everything in my power to treat my disease(s) and have a highly qualified team of doctors behind me. Sometimes I will say something along the lines of "thank you, I will look into that" and it ends the conversation.
Other times, I’ve called people out. When strangers make comments, I usually ignore them. I can’t tell you how many emails I get about apple cider vinegar and energy healing. It helps that I have radically overhauled my diet and lifestyle and yet, I still have active inflammation/flares. It helps that I can throw that back in the faces of those who cross the line and attempt to invade my boundaries. If someone has really crossed the line with me, I will usually pose a question along the lines of "if this were the cure for my disease, do you not think it would be highly regarded by medical professionals and do you think I would still have this disease?"
So my question to you, anon, is how do you respond already? I don’t personally find that responding with anger ever helps an in-person situation like this de-escalate. My biggest piece of advice is either use the opportunity to spread awareness and educate, or use a one-liner and shut the conversation down/enforce your boundaries.
You know your body best, and how you treat your body and your disease is in your hands. Do whatever you need to do to enforce those boundaries and maintain your wellbeing (without hurting others, of course).
Does anyone else have any suggestions? Leave your comments in the Disqus box below.