Sacrifices and Ripple Effects

January 15, 2018

I have had many a terse conversation with doctors about the sacrifices they make to medicine – all they give to take care of patients.  I recognize and respect their sacrifices, sacrifices of time, energy, mental health.  The suicide rates for doctors is a crisis in itself as highlighted in this recent post in the Washington Post – “What I’ve learned from my tally of 757 doctor suicides.” The effects of the sacrifices that doctors make to the profession are real, but they aren’t the only ones who sacrifice.

There are ripple effects.

There are consequences for those immersed in medicine, surrounded by it.  For those of us who are not doctors whose lives are intricately linked to this profession that can both hurt and heal in the most profound ways.

When I have these discussions with doctors, they have no idea what I’ve sacrificed.  I haven’t been able to talk about it before in more than obscure references.  But now I can and I think what I have might be worth saying both to understand my advocacy better and perhaps, even more importantly, help doctors gain another view of medicine – one that holds compassion for their lives and also asks for acknowledgment of ours.

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I Survived

January 13, 2018

“And at last you’ll know with surpassing certainty that only one thing is more frightening than speaking your truth. And that is not speaking.” – Audre Lorde

I have survived:

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The 4 Stages of Treating Me

January 9, 2018

There are 4 stages to treating me:

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Dear Friends

December 22, 2017

A thank you to those who are here and those that stayed; an apology to those I lost.

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Appointment Primer

October 27, 2017

I just posted my Personal Health Record (PHR) Template.  I bring in a PHR for my doctors to have my health history but I realized I also needed to bring in a one-pager to really focus on the issues I’m presenting with.  I just started using this format but am finding it really helpful.  I’ve posted below the primer I took to my foot surgeon yesterday (I have removed some personal information).  With this document in hand, we are able to really get down to the issues at hand.

The first side of the page is the important issue for the appointment.  But I put more on the back side – the things that help a provider see me as a whole person.  I have my coordination of care notes but more importantly, I put a “brag list” or a list of things that are good in my life – the things that I want a provider to know about me as a person – not a patient.  I want to give them a sense of why I’m there.  It’s not just about the pain, but about what I want to get back to doing and living a fuller life.

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Personal Health Record Template

October 27, 2017

I have a lot of doctors.  A lot of doctors.  I’ve seen more than I can count and each time I go in, they ask me to fill out a new patient form.  Inevitably, the form does not have enough space to include all of my information.  And worse, I’ve already filled this form out in hundreds of other places.  So I decided to make my own form – a personal health record (PHR).

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Letter to Providers on Using Email

October 27, 2017

I need to use email to work with my providers.  I’ve explained before why I’ve given up on patient portals.  Basically, I have multiple providers to manage (16) and going into multiple portals to send multiple messages is untenable for me as a patient and really does a disservice to me and to my providers.  However, doctors are reticent to use email.  The EHR vendors have done a great job with their marketing to scare physicians to think that they can only use the portal to communicate.  But that’s not true! And in fact, patients have a right to use email, one that doctors must accommodate.

Because doctors don’t want to believe me despite my law degree, I have written this letter and present it when they try to resist the use of email. Some still try to push back and refuse, but the law is in my favor and I’ll push for what I need to do for my care. We shouldn’t have to fight over this, but until doctors really learn how HIPAA works, I’ll have to educate them on my own.

For all patients that want to use email, feel free to use this.  It is NOT legal advice, it is simply what I use as a patient and cites the relevant laws, rules, regulations, and guidelines.

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