Update 2/7/22

Hello my Zebras and Spoonies! Thanks for coming and hanging out with me today. I’m glad that you are here.

I had my follow up appointment regarding the endometriosis. The hormone that I was put on isn’t helping with my pelvic pain. In fact, the pain is only getting worse. So, we’re stopping the hormone because there is no value in taking the medication if it isn’t going to reduce my pain. I have an IUD so I have very little bleeding even without the oral hormone, so I don’t even need it for that.

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Update 112321

Hello my zebras and spoonies! thank you for coming and hanging out with me. I’m glad that you’re here.

Today I’m just going to give an update of life, the universe and everything that is me. Some backstory is that I have endometriosis and with that I’ve had a lot of pain, which has been progressively getting worse over the last five to six years. I have a Mirena IUD that I’ve been using to control the bleeding and pain. It’s not really doing the job that I need it to do anymore. It has been controlling the bleeding, but not the pain.

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This thing, that you call me,
doesn’t change who I am,
yet it defines me,
This name, this diagnosis,
that you gave me.
The name didn’t make me this way,
yet it shapes everything around me.
The stigma for this label,
marking every social interaction
and limiting the choices I can make.

Apples and Oranges

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.

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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

Discovering My Zebra Stripes

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.

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Update 030921

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.

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Down the Rabbit Hole…

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.

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