bleed red

The Streets “We all bleed red.” They say in the protests on the streets. Those in the Black Lives Matter movement. Those protesting the killings of the black men, black women, black children. I watched the videos. Some I wish I could un-see, but I know to understand the horror, you have to see it. The blood that slowly seeped into Philando Castille’s white t-shirt as he laid dying at gunpoint for a broken taillight, or a wide set nose–it was red. The blood that stained the street…

disability

A new year comes yet again and we resolve once more. This year I propose to you this: we need a new resolution because this may be the year you get cancer. At year’s end, we are challenged to think back on it, the highs and lows, to reflect and to take the opportunity to make alterations and revisions for the year to come. Resolutions come in many forms, but the most common are health and lifestyle modifications: How can I live a more healthy lifestyle? I want to…

sick

In one month, I will have been sick for four years. I never thought something like this would happen to me and it comes with many challenges. I’ve found that in the midst of all the struggles– the IV treatment and the side effects, the pain, the constant doctors appointments and tests, the fatigue, missing out on life events, the thoughts of what my life could have been if I had never gotten sick– the hardest part of being sick is being alone. The real struggle is in…

disability

In the bleak winter that is life with a chronic illness, it is hard to remember that there is, in fact, a spring. The snow begins to melt, and flowers do actually bloom. Good things can actually happen in the midst of a struggle. And I have known a great struggle over the past three and a half years. I became sick very suddenly just weeks before my twenty sixth birthday and went downhill fast. I struggled with finding doctors who took me seriously and being misdiagnosed and…

We reached downtown just as the sun began to set. San Francisco at dusk is a bustling place. Brakes squeaking, fluorescent lights flashing and illuminating windows of bars and restaurants. Rush hour traffic cramps the streets. Street lights begin to light one after the other. You can catch a host of different people walking during this time. A young twenty-something wearing a beanie and a messenger bag, coffee in hand, surely heading to a poetry reading or open mic night. The business savvy woman in heels hustling to…

Karolyn Gehrig has an invisible illness, but #HospitalGlam makes her feel less invisible. Her recent feature on Huffington Post says she was diagnosed with Ehlers-Danlos Syndrome,  a genetic connective tissue disorder in 2003 and has since had many hospital visits, doctor appointments, and various medical testing–something those of us with chronic illness are very familiar with. According to Huffington Post, she started #HospitalGlam to help with the stigma that those with chronic illnesses deal with regularly. Check out her website. Others with chronic illnesses have joined in on…

As one might expect, navigating life with an invisible illness is one challenge followed by another. Beat one. Greet one. Every. Day. Nothing prepares you for the constant fatigue, pain and mystery symptoms du jour – or the endless questions regarding medications and treatments (and let’s not even get started on insurance issues – holy mother of all things bass-ackwards!). You would think that it helps being a nurse – that I would understand more, making it easier for doctors to explain health matters to me. To an…

disability

With hospital systems and insurance companies requiring increased quantity of patient appointments rather than encouraging better quality interactions, no wonder I have encountered many frustrating doctors in the course of my disease. Don’t get me wrong, I have met my fair share of great doctors who provide me with the incredible care I have received over the past 2 and a half years. But most physicians are booked at 15 minute intervals–and it literally takes me 15 minutes to list the diseases I have and the medications I…

sick

Patient engagement is a trendy topic for healthcare providers – the latest spin terminology for “patient compliance” – as in how do I get patients to follow treatment protocols? Take better care of themselves? Especially now that payment for my services may be negatively affected by bad outcomes and poor patient satisfaction?

Susannah Cahalan, a journalist for the New York Post, was afflicted with a very rare autoimmune disease called anti-NMDA-receptor autoimmune encephalitis. Where my type of autoimmune disease affects the nerve roots and autonomic nerves, this type of autoimmune disease affects the brain. Susannah ended up writing a novel documenting her experience called “Brain on Fire, My Month of Madness”. She writes on a few statistics that I thought were shocking: