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Rare disease-in it….
I know Thymoma is rare. It was clear that my doctor was blowing me off when initially my numbers didn’t cause any concern. I waited, did more tests, then one of the tests results required that I get a ct scan, I hate that thing and the contrast but I know it’s there for my benefit. But where is the actual benefit? If it shows off a brand spanking new tumor the treatment is another sternotomy. And if nothing of concern shows up I’m still underserveilance by the medical term that directs my care.
So being blown off by the ER Dr wasn’t an issue for me. I’m confident that my medical records require diligence and respect by the consistent comment: “You’ve been through a lot.” To which I just usually nod yes, quietly.
After hours, I arrived at the ER at 5 in the morning and it’s the afternoon now, I am still here waiting (and ready) to go home. I already started removing the tape from my IV because I know how. (I used to work an emergency medicine)
The surprising thing is the fact that The Doctor Who blew me off initially, actually acknowledged his behavior and mentioned how easy it was to assume based on normal test results. I SO appreciated and respect that, as a human being. He could have acted like all was well and never acknowledged his behavior choice. It’s super cool to be treated humanely when your own body disrespects you with a movement disorder…..just sayin’.
Now I am riding home in an ambulance simply feeling grateful. There was no tumor growing in my mediastinum today and I will leave tomorrow to it’s own devices. :)
Have a great week.
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