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14 years I have been dealing with this disease and it's cohorts and I think at best I can say I am better then my worst day but reality is I struggle most days in one way or another. Today I just am exhausted, disappointed and frustrated.
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Members responded with deep empathy to a post asking whether doctors and medical care are actually working after 14 years of struggling with... Read more
@A MyLupusTeam Member, that is extremely frustrating. I wish books like the Lupus Encyclopedia were required reading for all types of medical students. The lack of understanding of how mysterious lupus symptoms (and other autoimmune diseases) can be for each individual creates issues like yours. Please keep pressing on. There's someone out there who will finally hear you.
@A MyLupusTeam Member Good evening! I, too was diagnosed 14 years ago. I have been blessed to have a decent care team. It’s not until recently with some of the medical “professionals” that I’ve had to advocate for myself.
I don’t like when the doctors treat every person as a cookie cutter case! While we may have the same diagnosis of lupus, our bodies are completely different. We live with our bodies day in and day out. We experience the symptoms day in and day out.
Be courageous and know that you are your best advocate! 💜
That is ridiculous, @A MyLupusTeam Member! I'm glad you were finally appropriately evaluated.💜
Fourteen years is a long time to carry this weight, and feeling exhausted, disappointed, and frustrated after all that time makes complete sense. Those feelings are valid, and you are far from alone in them.
A MyLupusTeam member put it simply: "Just live moment by moment, every day is different. Give in on bad days, and Show Full Answer
They are lazy and poorly trained. This new generation of doctors doesn't fact check anything. They believe only their tests are right and ignore all others. They don't look at medical history and don't look at what meds or supplements people are on and how they interact with tests. I've never met such lazy, incompetent people.
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