Chronic Disease From a Physician’s Perspective

It’s SO very true. Because the condition that we deal with it rare, very few doctors Know about it much less how to treat it. The comment about them wanting to impress someone else.. I have said Egos have gotten in the way. Some doctors have not been able to help us, but wouldn’t give up.. or some were just jerks.. Egos. We come seeking help. Yet they can’t help us because I might know more than them?? Probably because I have been putting all my spare time into researching it, and living it. We can’t leave the room and what is wrong with us behind…

I read this and All I can see is the ego. I can see that you want us to respect you, But respect us.. We are living with something No one else can figure out.
I appreciate the thought that went into it. But from someone that has experience with the unknown, the chronic, the invisible, these are known. But we have to push. Push to get the right doctors, Because most likely we will end up in the emergency room because we have been over looked or not treated when we need it, Or not yet diagnosed, or not given the care because we are in our own category, and they don’t know what to do with us.

But is it wasn’t for me being pushy, My Chronic wouldn’t be here today. Because the doctors didn’t know what to do for him. Wouldn’t. Wanted me to sign him out of the Hospital for the 8th time in a year and take him home.. because they didn’t know what else to do for him. Me being pushy got him transferred to another hospital that could.

This just made me mad.. can you tell?

Guts and Glamour

***Please note that this is not a post I have written, but rather an article on a Crohn’s Facebook page I follow.  I thought it was a great read and wanted to share, but for some reason the link was bad.  –Michelle

A LETTER TO PATIENTSWITHCHRONICDISEASE
July 14, 2010
by Rob Lamberts
Dear Patients: You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them…

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