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This diagnosis
describing a part of me
a bit of my fundamental self
not a thing separate from who I am

I am a Zebra and I am a Wife.
I am autistic and I am a sister.
All these: pieces of me.

Do not caution me against this.
Don’t tell me I cannot hug myself.

I carry these flags,
and I summon up my tribe.
These are my people:
here is the Dazzle and the Spoonies.

We are not broken.
We are not less than.
We may be different,
but where’s the crime?

Let’s celebrate all the colors
and light up this dreary world.
Let’s celebrate all humanity
and share in all the wonder.

I am different.
And so are you.

Do not reduce me
so you can better understand
Do not stuff me down
so you can better tolerate

Accept all that I am

All the strengths
and all the weaknesses.

Recognize all I offer.

Not only my failings
but all my achievements.

Give me permission
and let me be human.

Getting a Diagnosis

Hello my Zebras and Spoonies! Thanks for coming and hanging out with me today, I’m glad that you are here. Today I am going to talk about the process that a provider goes through to give a patient a diagnosis. I’ve seen this topic come up fairly often in several of the groups I’m in and I think it would be helpful for patients to have a better understanding of the process and thinking that goes into the diagnostic process.

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Update 020722

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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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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