Category Archives: Inequality

#sickbody, Advocacy, ankylosing spondylitis, chronic disease, chronic pain, disability, Equality, health, Healthcare, Inequality, Invisible disease, Patient Advocacy, Politics, SSDI

Accessing Welfare Is Easy

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Just fill out the forms, submit them, and wait for the phone to ring, right?

Some of you probably know late last year I began the journey to join the throngs of people who subsist off Social Security Disability (SSDI) or Supplemental Security Income (SSI). Truly, I tell you, it was such an easy thing to recognize and claim I could no longer work.

Not.

I got so excited when I thought about the idea of living on an average of SSDI $1,022.29 per month, or SSI $561.60 per month. Actually, less than that, since “The amount you receive each month will be based on your average lifetime earnings before your disability began. It is not based on how severe your disability is or how much income you have.”

Not. Could you do it?

Why have I spent the last two years using every ounce of energy I have to try to earn a living?  Because the last thing I wanted to do was admit that I was too sick to function like the normal, healthy human being I knew I would always be. Because I was raised to work hard, and remember, there are people out there who have it worse than I do. But I learned those things when the biggest challenge in my life was convincing my soccer coach to let me play the whole match without subbing out. I was the super-involved kid in high school: on the soccer team, track team, in band and drama, and a straight-A student who graduated 10th or 11th in my class. I could do anything and everything and that’s the way the world worked for everyone else too, if they would just approach life with all the vigor and energy I had rattling in my pockets.

That was then. It’s different now. A diagnosis of ankylosing spondylitis flipped me over and shook the spare change out of my pockets. Where I used to sleep through North Carolina hurricanes that hurled tree branches and rain pellets onto the roof of my house, I now rarely find REM sleep even in the most relaxed spaces. Fatigue affects my mental and physical functions, sometimes causing me to lose the word I was about to say in the middle of a sentence. My depth perception is off, causing me to hit my head on clothes racks and slam into door frames with my hip.  I now focus on the basic needs to function and survive, which involves a much different skill-set than my original dream of saving the world as a professional soccer player and community garden coordinator. Others my age are focused on getting a promotion at work, losing weight, starting a family, buying a house, and finding a good group of friends to grow old with.   Continue reading Accessing Welfare Is Easy →

#sickbody, Advocacy, ankylosing spondylitis, chronic disease, chronic pain, Current Events, disability, health, Health Insurance, Healthcare, Inequality, Invisible disease, Patient Advocacy, Politics, spondyloarthritis, SSDI, Uncategorized

The Affordable Care Act is Not Affordable for Me

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My previous post, The Work of Being a Professional Patient, needed a second chapter. There’s more to that broken system than simply being an unpaid professional patient.  In addition to the phone calls, meetings, emails – the legwork of managing our healthcare as chronic disease patients – there’s a lot of money involved, and a lot of it flows out of the pockets of people who can’t afford the care they need.

The system is broken.

It is a system designed for healthy people to get catastrophically sick and go from there. A system that punishes people for being sick but provides no support to keep them from getting sick.  Only $251 is spent per capita on public health measures aimed at proactively preventing illness.

The American healthcare system pads the wallets of health insurance and big pharma companies and often doctors and nurses too, then forces patients to do their work for them. America, land of the sick, home of the outsourced labor in our own back yards: people paying corporations a big chunk of their income for the privilege of managing their own healthcare.

Privilege is a dangerous word. I’m privileged? to be chronically ill and I pay over 10% of my monthly budget on my healthcare premium alone, after the assistance of the federal subsidy intended to keep my rates within my income limits. This does not include my out of pocket expenses on doctor visit copays, prescription copays, over the counter NSAIDs, heating pads, and various treatments to manage side effects of either medication or illness. Continue reading The Affordable Care Act is Not Affordable for Me →

#sickbody, Advocacy, ankylosing spondylitis, chronic disease, chronic pain, disability, health, Health Insurance, Inequality, Invisible disease, Patient Advocacy, sickness, spondyloarthritis, Survivor, Uncategorized

The Work of a Patient

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I don’t get paid for this but it’s my job.

Ironically, I pay others for the work I do. You may need to read that twice to let it sink in. I pay health insurance companies, doctors, and pharmacists to do a job that I actually do because they don’t – or can’t. Though it’s not on my resume, I’m an unpaid Patient. I make the phone calls when I catch the mistakes because no one else has the time. I make the phone calls when my doctor doesn’t know what my other doctor said, even though they share a computer system. I call to make sure my prescription is filled on time. I call to make sure my insurance company will cover a service because it’s not clearly stated in my plan information. I call to challenge billing errors and then I call to follow up at least three times before it’s settled.   Continue reading The Work of a Patient →

Advocacy, Black Lives Matter, Current Events, Equality, Inequality, Politics, Racism, Sexism

Standing in Solidarity: Black Lives Matter

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I didn’t plan on writing this piece about #BlackLivesMatter.  I wanted to watch how it all played out without getting too involved. Truthfully I was afraid that I would say something wrong that would make me look unintelligent and uninformed. Then I realized that by being silent about it, somehow I was allowing more damage to happen.  I write this from a place of vulnerability, love, and hope.  I’m willing to be brave for those whose voices are drowning in fear. I hope to amplify the voices of my black brothers and sisters as they scream, even when it seems no one is listening. I hope to be corrected, as needed, by those whose lives are in danger and whose shoes I can never occupy. I will keep listening.

Continue reading Standing in Solidarity: Black Lives Matter →