Category Archives: sickness

#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 Professional Patient

November 24, 2015 BeingCharis 11 Comments

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 a Professional 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 Professional Patient →

#sickbody, Death, family, Grief, health, Invisible disease, Love, Patient Advocacy, PTSD, Rachael, Relationships, sickness, Survivor, Women

World Prematurity Day

November 16, 2015 BeingCharis 2 Comments

Source: World Prematurity Day

Death, family, Grief, Love, public speaking, Rachael, Raising Ruth, sickness

Remembering Rachael, Raising Ruth

October 22, 2015 BeingCharis 2 Comments

Rachael died the day before her daughter was due to be born.

But baby Ruth was already over four months old when Rachael died. She was born so early she weighed less than a pound – 0.95 pounds, to be exact. That’s less than the weight of a four-stick package of butter.

Our physical bodies are on loan to us. They will die. It is our spirit bodies that are unique and will never die. It is our spirit bodies that fall in love; our physical bodies only transmit it through touch. It is what we leave behind of our spirit bodies, our love, that becomes our legacy. Continue reading Remembering Rachael, Raising Ruth →

#sickbody, ankylosing spondylitis, Arthritis, chronic disease, chronic pain, disability, Invisible disease, sickness, spondylitis, spondyloarthritis

Pain is my fishbowl

September 12, 2015 BeingCharis 14 Comments

Many of us are aware of the U.S. Marine Corps tagline, “Pain is just weakness leaving the body.” There’s also a similar, often-referenced quote by Lance Armstrong:

Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.

By these definitions, my body is a tomb of never-ending weakness and I’m in a perpetual state of temporary pain (and in my case it doesn’t matter if I keep fighting or quit, the pain is still right here with me). Don’t believe everything you think, it was created by someone else’s perspective first.

When people freak out about bruises or scrapes on my body I have never understood the reason. What’s the big deal? Only in these aesthetic instances can I spout the “pain is temporary” mantra and people will understand that I’m just good at sucking it up, so to speak, and they leave it at that. Most people do not understand that there is deeper, unseen pain that can last forever in our temporary bodies.