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..?
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.
Q:Does it ever make you frustrated that your diet didn't cure you? I cut out everything that people suggested and it didn't significantly change my joint pain. I feel like a failure in some way. I guess I had held out hope that changing my diet would do more for my autoimmune issues.
YES. Yes, I know that frustration all too well.
A diet not being a cure is not your failure. Your body did not fail! And the diet did not fail either! Diet is a great tool and treatment to help reduce inflammation—especially if you have specific food sensitivities—but it is by no means a cure. If a gluten/whatever-free diet could cure all autoimmune diseases, don’t you think we would be able to do away with biologics and other medications?
Does your diet have other benefits and is it worth staying on said diet for the benefits? If so, great. That’s a huge achievement—lifestyle change is always difficult.
I’m really sorry to hear that diet overhaul wasn’t a game changer for you. I know how hard that must be for you. I get where you are coming from—I don’t think I realized how much hope I had been holding onto until my own diet didn’t magically reverse my inflammation. But, that’s life. And that’s autoimmune for you. What works for some will not work for everyone. Remember that your disease and treatment is not a one-fits-all thing, and that the success of others (in this case, success with diet as a treatment) is not your failure.
I know it sucks, anon, I really do. If you ever want some other dietary resources, feel free to message me. Sending you a lot of love and wishing you nothing but the best.
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,
Not Just Arthritis: Honoring Two Rheummates
Today the #rheum community lost two of its rheummates.
I’d like to take a moment and honor them. Maybe you pray. Maybe you just give them a moment of your time mentally. Whatever it is you do, please do it.
This disease is not “just arthritis.” It’s not just joint deformity and a bottle of Aleve. It’s vasculitis. It’s heart failure. Behind the statistics are real people leading very real lives.
It is never “just arthritis.” Patients like Emma and Ali deserve more. They deserve better.
Please send your love to their families in a tweet, comment, or just a passing thought.
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.