Friday, April 15, 2016

AI Awareness: Don't Call Me Crazy

Imagine waking up in incredible pain. It feels like someone is stabbing you in the stomach. Suddenly, you are nauseous and try to race to the bathroom. When you get out of bed, you almost hit the ground. You see spots, colors, and shapes dance before your eyes as you steady yourself. Before you can reach the toilet, your body starts to release everything in it. In between bouts of vomiting and diarrea, you try to catch your breath and stop your heart from racing. As breathing becomes more and more difficult, you feel the walls begin to close in on you. You feel like you are leaving your body. You become convinced you are dying. The tears start to fall as your hands and feet go numb and you realize you are hyperventilating.

You manage to get help. Your partner, friend, child, whoever happens to be there, throws you in the car with a few plastic puke bags and drives as fast as they safely can to the ER.

As you approach the all-too-familiar site of the emergency drop-off, you try to calm yourself. You've been here before. You know the drill. They will poke, prod, x-ray, run tests, then finally say you must have some kind of bug and send you home. There's nothing "really" wrong with you, they will say.

Except this time is different. This time, when they can't find anything "physically wrong" with you, they send you to psych. They put you on a "hold" so you can't leave even when you want to. You are left in unbearable pain, still vomiting, still crying, without any medical intervention. You are told it's all in your head anyway. Perhaps you are diagnosed with severe depression or another mental illness and prescribed anti-psychotics. They only make you feel worse.

This happens over and over again, until finally, one day, you stumble across an article online about Addison's Disease and once again, can't stop the tears from falling, but this time from happiness. There are others who have gone through the same things you have. There is a disease that is missed by doctor after specialist. It describes you perfectly.

You make an appointment with an endocrinologist, a word you'd never even heard of before (because the hospital kept referring you to gastroenterologists, and then, psychiatrists).

Finally, you have an answer. You believe you will never be treated so poorly by medical professionals again.

And then you have another adrenal crisis. This time you are traveling and have to go to a different hospital. They don't know how to treat Addison's Disease, and once again, you find yourself in a psych ward.

Does this sound impossible to you? Do you think "not in my country"? Well, I'm here to tell you this happens and all too often.

I have heard countless stories that go the way of the tale I wrote above. I have experienced similar treatment myself. Some of the hardest days of my life were in a hospital that insisted on treating me for depression instead of adrenal crisis. I eventually got better, since I still had some adrenal function, but not because of the treatment I received. My body was eventually able to raise it's own level of cortisol, after days of being left in a bed with no medication beyond tylenol.

I have written before of the psychological side effects of low cortisol. Unfortunately, most doctors are unaware that these symptoms are caused by Addison's Disease, not the patient.

A 2012 case study, which you can read here, states delirium is a neuropsychiatric side effect caused by low cortisol. And that's not all:

An array of neuropsychiatric symptoms is associated with AD. Addison is quoted as saying in 1855 that AD patients might present with “attacks of giddiness, anxiety in the face, and delirium.” Anglin et al also noted four case series published in the 1940s and 1950s that found the prevalence of neuropsychiatric symptoms in AD to be between 64 and 84 percent. Iwata et al reported that in some cases, the neuropsychiatric symptoms were the initial and sole presentation of AD, even though such symptoms are more common in the late course of the disease; this might lead to a patient initially being misdiagnosed, as it did in our case, and in turn, incorrectly treated. Neuropsychiatric symptoms of AD include, but are not limited to, depression, lack of energy, and sleep disturbances. During an Addisonian crisis, agitation, delirium, and, in some cases, visual and auditory hallucinations are reported.  

I write this blog because I love to write. But more than that, I write in hopes of raising awareness about Addison's Disease and thyroid disorders. Too many people suffering from these conditions are mistreated by doctors and nurses. Not to mention friends and family.

To be clear, an Addisonian or adrenal crisis is "a medical emergency and potentially life-threatening situation requiring immediate emergency treatment." For doctors and other medical professionals to so often mis-diagnose, and then, so often mistreat those in a crisis, is simply unacceptable. There's no other word for it. 

We Addisonians deserve respect, proper care, and understanding that the neuropsychological symptoms present are actually normal during crisis and will subside as cortisol levels rise. 

And I'm going to keep writing until we get it. 


an Addison alien

who was contacted about a great opportunity to raise awareness and hopes to share the exciting developments with you soon

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