“You’re fighting, fighting and fighting. Your friends and parents are around. Then, when the cancer went away, everyone was gone and expected you to be back to normal and do the things you used to do before cancer,” said Starr. “That was the harshest reality.
Read MoreI can celebrate the last day I had to suffer in silence. The opportunity to hurt out loud was my greatest gift. It changed my whole life. I felt like I was saved.
Read MoreTo the Doctor who ignored my Rare Disease because he thought I was drunk,
I don't blame you. I get it. A girl in her mid 20's comes in disoriented with slurred speech and shielding her eyes from the light, obviously assuming she's drunk seems like a pretty good call. It seems like a safe call. Except there was nothing safe about it.
Read MoreAlmost ten years ago, my integrity was questioned regarding my chronic illness and disability for the first time. I was about four years into my diagnosis with rheumatoid arthritis, and despite the dark cloud that loomed over my head on a daily basis, I felt on top of the world.
Read MoreOne thing they don’t tell you about rare conditions is that the testing can be grueling. The doctor just wants to make sure they know what you have, so you feel confident that you know what you have. But the tests… the tests can be nothing short of torture. For one of my conditions, I spent overnight in a hospital with an IV so they could inject something and then test my blood. They did this every hour, even when I was “asleep.”
Read MoreTo someone living with chronic illness, the question, “How are you?” can take on a new meeting.
Read MoreI am still in disbelief as I look back over the last 11 or so years. I didn’t think I’d survive. Only very recently have I grown strong enough to embark on the deliberate path of wiping off the mud. I’m smiling, beyond grateful for the fortitude and support that carried me through what felt like perpetual drowning and chaos. The load weighed just beyond what I could carry on my own. I’m lucky that I didn’t have to do it alone.
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