Did you ever get the feeling that doctors would rather make you feel helpless and stupid then learn something new. I have been to the ER 5 times for the same reason........This is how it goes....Tell the nurse who thinks she knows everything what your symptoms are....She will then decide the severity of your condition.....Well if the nurse has absolutely NO IDEA what Antiphospholipid Syndrome is she willl put you are the lowest severity level....So you wait 9 to 15 hours to be seen in a freakin waiting room with a bunch of sick people that could be seen in an urgent care or a doctors office. Then when the pain and symptoms get to be too much and of course after shift change you go to the nurse on duty. You tell this the nurse praying they know something about Antiphospholipid Syndrome. In my case thank God some of the nurses remember me so they do know because I educated them myself. Even brought literature for them to read. Well this nurse will upgrade you so you can be seen faster. Doctors come in do all the checks, the vitals, look at everything, ask you all the questions. Then neurology comes in......This is where it gets interesting......Neurology will tell you this is rare and mostly happens in women that are overweight. But then always ignore the fact that I have research in hand that shows them Psuedotumor Celebri in a direct complication of Primary Antiphospholipid Syndrome. So they adjust medications yet again, do a spinal tab if they are in the mood for it, MRI, or CAT scan just to tell you that you don't MS, a clot in your brain, or whatever else they think up while they are sitting trying to come up with because they are ill prepared and uneducated about the disease.
I want to scream, I want to cry, I want to slap some doctors right back into Medical school. Or just slap a few times with all the research I have in hand. The difference between me and a doctor is I am more of an expert than the doctor is because I live in this body. I deal with the disease on a daily basis. I sit here and read article and website day after day. I feel like I am stuck in a prison cell just me. I can't explain to anyone what is happening because I feel like no one will listen.
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