Category Archives: sickness

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

World Prematurity Day

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Source: World Prematurity Day

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

Remembering Rachael, Raising Ruth

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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

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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.

©2015, Glenn Jones/Ikona Photography H/MUA Ashley Caudron
©2015, Glenn Jones/Ikona Photography
H/MUA Ashley Caudron

Continue reading Pain is my fishbowl →

#sickbody, ankylosing spondylitis, chronic disease, chronic pain, disability, health, Invisible disease, open letter, sickness, spondylitis, spondyloarthritis

An open letter to healthy people from a former healthy person

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Dear healthy people,

Let me tell you about becoming a “sickbody.” I have Ankylosing Spondylitis. Right, just don’t even try to pronounce that. We’ll stick with calling it A.S., yeah? Really all you need to know about it for this blog post is that it’s a chronic immune-mediated inflammatory joint disease. I’ll share a link at the end for you to read more about it. (Here’s a distracting picture of me to help you along)

Continue reading An open letter to healthy people from a former healthy person →