One thing that is very real and very frustrating in the world of chronic illness: Misdiagnosis. The more rare your disease and more complex your medical case, the more likely that you will be misdiagnosed before someone gives you the “real answer.” The truth is that diagnosing patients is complex and, frankly, it’s really hard. Most medical tests don’t lead to a single diagnosis, but rather suggest a list of possible answers that must then be compared to the patient’s list of symptoms. And the fact of the matter is that most of us in the chronic illness community have struggled with this reality.Continue reading “Apples and Oranges”
Hello zebras and spoonies! Thank you for coming. I’m glad you’re here today.
I want to address a question that was raised in one of my support groups on Facebook and basically the question was, if you could go back in time and get diagnosed sooner: would you do it? I think that’s an interesting intellectual exercise.Continue reading “Would You Go Back?”
Broken, scattered pieces
Laying strewn across the floor
Something missing and lost forever
I cannot no longer see my future
Or the person I was becoming
Now, I’m undone and something else
I am this diagnosis
This label that owns me
Stealing everything I imagined I’d become
And rewriting me without my consent
As my body cracks and crumbles
My hope turns to dust
Leaving me here to stare at my mortality in the mirror
May is EDS awareness month and they have asked us to share our diagnosis story. So, this is mine.
I’ve had symptoms all my life that I reported to my parents as a child and then to doctors as an adult. I kept being told nothing was wrong with me. I knew that I was different then others. I knew that I was always in pain. I knew that I was always vomiting. I knew that something was wrong, but I didn’t have a diagnosis.Continue reading “Discovering My Zebra Stripes”
I find myself at a strange place emotionally.
Years ago, my sister, Toadie, suggested that I might have autism. At the time, I completely dismissed her suggestion. Honestly, I didn’t even give the idea any real consideration. I’m not sure why, but at the time, the idea didn’t seem pausable. Perhaps because I was stuck in the mode of thinking about autism in context of childhood, male presentation. Perhaps because I was hung up on the idea that those with autism have some sort of speech delay or other vocal imapirment. Which I don’t have.Continue reading “030921”
For as long as I can recall, I have known that I was different than the people around me. I knew that my body did things that other people’s bodies didn’t. Things would come up in conversation and I would be like “Oh, you can’t do that?” I remember being very young when this first happened to me. It has happened more times then I can now recount. But some of those things were realizing that others couldn’t put their feet behind their head, other people didn’t fall several times a week, constipation wasn’t normal, neither was vomiting and other people felt hungry.Continue reading “Down the Rabbit Hole…”