picture of a white man with long brown hair pulled back in a ponytail. The view is cropped at the shoulders, and he's wearing a gray collared shirt and a dark tie. He has a hint of a smile on his face in this formal picture
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The pain of losing a great doctor

On Tuesday, I had an appointment with a new neurologist. The neurologist I’d been seeing, Dr. Schneider, was on medical leave due to a cancer diagnosis. I’d had a telehealth appointment with Dr. Schneider in June, and he’d been a little pale and skinnier than usual (he was always a pretty slender guy), and during…

a stethescope is in the foreground, with a computer behind it. Hands are visible, typing on the computer.
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Self-diagnosis: perils, pitfalls, and occasionally the appropriate action

While I’ve talked about how the diagnosis process is one of guessing and checking, I want to emphasize that in most cases, it’s essential to have a doctor be involved in the process. We, as laypeople, don’t have access to all the information or tools needed to be in any way sure that our interpretation…

me, sitting and looking at a pond
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Can you get disability if you have FND?

Functional Neurological Disorder (FND) is a relatively common (though rarely properly diagnosed) condition. I was diagnosed in 2003 when it was still being called Conversion Disorder (and labeled as a mental illness rather than a neurological condition). I want to be really clear about this: the condition you have (your diagnosis) is less impactful on…

red sign in front of a set of tree trunks. the sign reads: Eat, drink, and be married, with hearts at the beginning and end of the sign, and arrows pointing to the right.
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Can you get married on disability? The reasons I won’t

While I’ve talked about this a bit previously, I want to dig a bit more into the idea of getting or staying married while on disability coverage. The first and most basic thing that I want to emphasize is that this is a choice and that there’s no automatically right or wrong answer. What there…

doctor looking at smartphone, only visible from neck down
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Understanding medical diagnosis: why it’s all ‘best guesses’

I thought it might be helpful to take a few steps back and dig into how doctors are trained to think about and look at patients, and how they are trained to make diagnoses. This is really important because it helps us understand where missteps and mistakes are more likely to happen and to have…

woman(Alison) leaning against a tree
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Being your own boss on disability: mastering your destiny

As I’ve mentioned on previous posts, you can work while on SSI or SSDI. There are programs, like Ticket to Work and Vocational Rehab programs that can help with the process. However, the reality is that while they can give you information about working, they often are only prepared to help you with calculations related…

2 young women chat over beer. One of them sit on a barstool and other uses her wheelchair.
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Internalized Ableism: the struggle to accept our own worthiness

People with disabilities are often marginalized by society – and there are a variety of reasons for it. The social model of disability focuses on how instead of viewing our symptoms as failures on our part, it’s time to start looking at what assumptions society has made that make participating in the greater community more…

shrub maze, on the path looking at the center of the maze
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Navigating the Charity Care Labyrinth

As of July 27, 2020, I am elated to announce that I am no longer in debt to my local hospitals. I’m also very angry that it’s taken as long as it has. To give you some background: I have Functional Neurological Disorder(FND), which is a relatively common (but rarely properly diagnosed) neurological condition that…