Category Archives: health

#sickbody, Advocacy, Charis, chronic disease, chronic pain, Current Events, Death, disability, health, Health Insurance, Healthcare, Inequality, Invisible disease, Medicaid, Patient Advocacy, Politics, sickness, SSDI

Repealing Obamacare Could Kill me

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The Affordable Care Act (affectionately termed Obamacare) is likely to be repealed in a few months.

I’m told personal stories are powerful, so I want to share mine.

I was always going to be healthy. Aside from a slight concern when I quit a job that offered health insurance and took another job without it, I never once considered I would need a team of doctors. I boast a background as a college athlete, professional mover (yes, heavy furniture, etc) and otherwise health-aware person.

But my body lied to me.

Nearly four years ago, I was diagnosed with Ankylosing Spondylitis, a severe disease that causes rampant and painful inflammation in the spine and other joints in the body, sometimes leading to the growth of bone spurs that fuse spinal vertebrae and hips. I wasn’t diagnosed by a healthcare provider at first – I found out I inherited this disease from my father after matching our symptoms.

Four years ago, I had a dilemma. Continue reading Repealing Obamacare Could Kill me →

Advocacy, chronic disease, chronic pain, disability, health, Health Insurance, Healthcare, Inequality, Medi-Cal, Medicaid, Patient Advocacy, sickness

Healthcare Is a Privilege. It Should Be An Inalienable Right.

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I grew up privileged – white, yes – but also without ever considering what life would look like if my mother’s job did not provide her and her family with healthcare.

When I had walking pneumonia in fifth grade and was in bed for three weeks, I never considered what it would mean if my mother had to choose what to do or where to seek help if we didn’t have insurance.

When I was on birth control pills in high school, the drug co-pays were predictable. I didn’t fear my medication would suddenly become cost-prohibitive.

When I broke my nose, I never once considered that some people couldn’t go to the emergency room because they didn’t have insurance.

When I was in college I tore my ACL and later broke my hand playing college soccer. My bills were covered. I didn’t know other students didn’t have the healthcare I accessed.

I believed healthcare was something everyone had. If someone got sick or injured, s/he went to the doctor, paid the copay, then went to the pharmacy, paid the copay, etc etc.

I was ignorantly privileged. Continue reading Healthcare Is a Privilege. It Should Be An Inalienable Right. →

#sickbody, Arthritis, chronic disease, chronic pain, health, Invisible disease, Patient Advocacy, sickness

We All Need Gathering Places

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Arthritis Introspective 9th Annual Gathering: #GrowTogether16

Nashville, Tennessee

May, 2016

Dear Journal,

I’m spending the weekend with a lot of really special people. We’ll drink alcohol, many of us. And take lots of drugs combined. Lots and lots of drugs.

Drugs we wish we didn’t have to take. Did you think this was Burning Man?

No. We’re all sick. We all have some form of arthritis, and many of us brought loved ones with us. We came to have fun – not despite – because we have arthritis.

We didn’t come here to complain. We came to share experiences and be reminded that we aren’t alone. We are a family. We know exactly what it means to survive, and we are determined to be whole humans in the process.

Many of us suffer from multiple chronic conditions because of and/or in addition to our arthritis: depression, anxiety, heart disease, diabetes, chronic respiratory conditions, high blood pressure, etc.

And the drugs. Oh the drugs. Did I mention the drugs? Biologics. Corticosteroids. Chemotherapy. Non Steroidal Anti-Inflammatories. Analgesics (oral and topical), Disease Modifying Antirheumatic Drugs, eye steroids (did you know there are steroids for eyes?). Sleep medication. Anxiety medication. Depression medication. Blood pressure medication. Insulin. Medical Marijuana. Etc. Etc. Etc. Continue reading We All Need Gathering Places →

#sickbody, chronic disease, chronic pain, health

Chronic Doesn’t Go Away

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Chronic does not mean predictable. Chronic does not mean temporary. It also doesn’t mean consistent, monotonous, predictably repetitive, or habitual. It’s not banal or soporific. Except that it is.

It can be seen, yet it is invisible. It’s tedious, at the same time that it’s not. It’s not a routine, at the same time that it is. Everything changes, at the same time that nothing really changes.

Which is why we have such trouble understanding it.

Like the Greek word agápe, with no direct English translation, chronic disease – chronos – does not translate into something we can make sense of at first either. The idea that anything will last until we die is far-fetched (except for happy marriages and twinkies).

‘Chronic’ doesn’t fit our understanding of how health and sickness works. We’ve been conditioned to believe that our illnesses are curable; if we just try enough treatments we’ll get better. Injectables, swallowables, stitchables, chemicals, radiation(ables) can fix anything.

Except that they can’t.

Chronic disease is like a parasite; surviving off its host, always adapting to resist being eradicated. The intense throbbing of an anxious and overburdened body is an unwelcome, yet familiar, intrusion with the dawning of each new day.

Chronic disease is unpredictable and that unpredictability makes it nearly impossible to control. The drugs may not be permanent but some side effects are, and the progressive nature of the disease introduces new symptoms when least expected – symptoms that will be forever crashing workdays, nap times, parties, and vacations.

Imagine every injury or mystery pain is there to stay. No longer are muscle strains and sprains healed with heat/ice and stretching; the pain never goes away. No longer are a stuffy nose and sore throat symptoms of a common cold; they are now permanent. No longer is an all-over, throbbing ache a warning sign of the flu; it is reality 24/7/365.

We who have these forever conditions don’t get used to them. There is a degree of accepting them, and though we adapt to these changes in our bodies with no other choice, we still remember what we used to be capable of. Even if we’d prefer not think about our losses, our medical charts track them for us. We can hope for remission, but anyone who knows anything about cancer understands that remission is a sleeping dragon.

Chronic is the wicked word, not disease. Because chronic is the reason our diseases stay.

Chronic doesn’t go away.

 

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