Last week my friend Biskin wrote a lovely piece on the death associated with illness – She’s an expert on chronic illness, having had a medical mistake break her (physical) heart at the tender age of twelve. It's been twenty years and she was just fitted for her LVAD so it's safe to say she knows something about this shtick.


#January #Selfie

Biskin Lee on Illness:

In illness there is much to grieve. There is the loss of the person you knew yourself to be – my own abilities to do what I used to do, and how that loss has changed me. There is the stress of dealing with the illness itself, it is a full time job, and can sometimes weirdly put you into a third person perspectival experience, and you suffer yourself because of it. It is almost like a death. That girl, the one who climbed mountains, is gone. And I don’t feel sorry for me, because there is nothing to feel sorry for. That other is gone. Although I suppose it could be argued that there is something to feel sorry for. As Thomas Mann wrote in “The Magic Mountain“, death is not an experience for the person who has died, but rather one for those left behind. In this instance, I am one of the persons left behind. And I don’t even get to experience the respite, the rest and relief that death can also hold for the survivors of terminally ill person. Because I am just a slightly better version of that terminally ill person.

So, first off, she’s absolutely right.  On all accounts. Social media is great for normalizing this third person perspective – it’s just a compartizalization – it’s simply taking a #Selfie and moving on. And yes, it is a way to cope (related: Sonja's piece in Vice on Hospital Selfies). Living with an illness for a long, long time is exasperating because you spend ever so much time feeling like you are about to die, only to not die, and live another day. Anyways, it seems like an awfully long time’s gone wasted in some kind of sick Schrödinger’s cat paradox. But really, it’s not.

#February #Selfie

Let’s see here, I’ve only been aware that I’m sick, for what, 15 years? And only been sick, sick, for say half of that. And only sick, sick, sick for three (aggregate) years. And only unable to get out of bed (again, aggregate) for two (measly) years. And, of that, only like two months where I actually might die. The aggregate part here is important. See, it hasn’t all been misery. There’s misery punctuated by lovely adventures and fabulous friends and moments where I’ve felt so fantastic that I couldn’t help but believe that the moment of health is infinite.

#March #Selfie

Anyways, back to Schrödinger’s Cat. What if instead of death, it's more an instance of purgatory? Until you open the box, you don't get to know if the person you once were is alive or dead? Not sure if that's false hope or if the happiness you once had is now immutably (or, more likely, irreparably) lost, but perhaps, perhaps the cat who climbed mountains is still there.  

#April #Selfie

Today is Rare Disease Day so, thanks to #TeamJess, I finally got up the gumption to reply to my primary care physician's email which, coincidentally, describes me as 'rare' in the first sentence. How apropos. This email was the last in an a long exchange regarding my request for two referrals and a prescription renewal. While I'd normally edit out the part of my response that describes my symptoms, I decided to keep them in honor of this year's theme - CARE - the notion that when individuals share their symptoms and pain they act in solidarity.

Hi Jess,

POTS is a rare diagnosis, and I am by no means a specialist in the treatment of it. I cannot comment on whether treatment with opioids is the best route or not. My only suggestion was that it might be prudent to see another POTS specialist for an opinion. It might also turn out to be helpful to see the Rheumatologist and Neurologist to see if they have any thoughts or ideas.

I know this is beyond frustrating for you, feeling poorly and not having any therapies pan-out with respect to making you feel better. There are no clear answers when it comes to POTS.

Best wishes,

Primary Care Physician



Dear Primary Care Physician --

I know all too well how complicated and rare POTS is. I’ve lived with this diagnosis for five years. It’s ok that you are not a specialist in the condition. I am. Since I was diagnosed, I've read every single peer reviewed article on the disease published since 2000. My succinct Health Plan and Summary includes a table at the end that summarizes treatment options from these articles and my experience with each option. As to the realities of the condition – I haven’t left the house to go anywhere except physician appointments this year. I have a wheelchair. I refuse to go down stairs for fear of another knee subluxation. My last relationship ended over it. I have tried 27 different pharmacologic therapies. I currently take 15 pills a day. I stab myself 6 times a day - 7 if I have to access my central line. I get it.

As to the pain and condition prognosis, please remember that POTS is secondary to my underlying Ehlers-Danlos. Ehlers-Danlos is also the reason my joints swell, pop in and out of place, and are a source of pain. So, yes, there is idiopathic pain in my chest; but there is also pain with an identifiable musculoskeletal source. This has been evaluated by 3 separate pain specialists who concur that opiates are appropriate for my disease state. Seeking out another pain specialist will not change this fact.

A friend who is a physician remarked that most pain management clinics in San Francisco refuse to give prescriptions for opioids, instead giving the recommendation to the person’s PCP to reinforce the PCP as being central to the patient’s care. Her point being that if this was indeed your office policy it precludes chronic pain patients from being members. I was so curious that I called the central group number and found out that your office does not have a blanket policy and does opioid management on a case-by-case basis. In other words, you lied to me.

In addition to several community neurologists and cardiologists, I've seen POTS specialists at Stanford, Hopkins, and Georgetown. My most recent cardiologist has tried different therapies, which is far more than his predecessor did by saying that I’d grow out of it. I do not need to see another POTS specialist. I do, however, need to see a rheumatologist and neurologist. The rheumatologist scheduling song-and-dance routine took over a month and two hours of my time; the neurologist you referred me to didn't have any availability until June.

The majority of my friends are allied the healthcare field – doctors, health lawyers, nurses, health administrators – and all ask “who’s coordinating all of this?” to which I say I am and then they all stress about who is going to take over when I start puking and can’t get off the floor on my own.

I’m not sure where they got the notion that my primary care physician should coordinate my care, maybe they were looking at NCQA’s patient centered medical homes model, or found a copy of the Accountable Care Organization regulations from CMS, or listened to people discuss Obamacare on Late Night with Jimmy Fallon. All I know is that they all say that a PCP is the person to coordinate care.

In my search to figure out what this actually means, a physician friend turned me onto Vernon Wilson’s 1969 article entitled “Prototype of a Doctor.” Wilson postulates that as a continuing medical advocate for their patient, a PCP’s job is to evaluate and coordinate patient care and “accept responsibility not merely pass it along – utiliz[ing] specialists rather than surrendering to them.”

By telling me that my condition is complex and stating that I should just see additional specialists, you are surrendering. And not even surrendering to anyone in particular – your referrals are not likely to materialize for months. I've been living in my friend's guest room since being discharged from the hospital a month ago because it's unsafe for me to live alone. I need help now, and, as these specialists are unavailable to provide the care, my primary care physician should provide it.

So, this leads me to ask: If you are not willing and able to help me, who in your practice is?

Would have liked to have this conversation with you in person but you have no availability this month.



When I was debating whether or not to send this note, Ted Eytan wrote a piece which highlights the fact that while it's great for providers and patients to use email to correspond, it's far better to communicate. It's my wish that sharing these messages communicates that, no matter how rare you are, you are not alone. There is always hope.


PS - Ted, Before I die, I want to live.



PPS - if you have POTS, here's some research and a template that might be useful to you (obviously use in consultation with your physician) - POTS_Templates.