Wednesday, April 6, 2016

AI Awareness: All The Feels

Graphic credit: Susan Kaplan
Prior to diagnosis, I was told all I really needed was a good psychologist by countless people, doctors included. Which was frustrating (to say the least), primarily because I had been seeing psychologists off and on since college and they never diagnosed me with anything. In fact, while living in Los Angeles, I tried multiple times to use the public services for mental health and was rejected every time because I didn't meet their criteria. But that didn't stop a lot of people from believing I was making my symptoms up. 

My symptoms were always worse during stressful times, which makes perfect sense because cortisol is the body's stress hormone. My body literally could not handle stress. It was like flooring a car without gas. You just wear that engine/body right out!

When cortisol gets dangerously low, my body responds by going into what is known as an adrenal crisis. This is a potentially life-threatening condition unless treated ie a trip to the ER. 

I have learned, over the years, that if I go in for an emergency shot of cortisol when I start to feel these emotional symptoms of low cortisol, it goes much better than if I wait to be in full-blown panic, bawling, and go into the ER screaming for pain meds. Doctors and nurses don't seem to like that. 

Go figure.

For me, the signal that my cortisol is getting really low is weeping. I start to cry for no reason I can think of and no matter what I do, I can't stop my eyes from leaking. Recently, I started crying in yoga class. I know that yoga poses can release bottled up emotions and I've experienced that too. But this was very different. Leaking eyes is really the best way to describe it. I got out of class and drove to our emergency clinic, where we are on a first name basis. They can even tell it's me just by my voice when I call. When I got to the clinic, I was running a fever and had other indications of an infection. I had not noticed I had a fever and felt fine until I didn't, so I had not taken extra medication, or what we call stress dosing. After a few shots and a good night's rest, I felt much better. 

Ideally, once diagnosed, a person with Addison's Disease will never go into crisis again, assuming they never miss a dose of their medication. But in reality, we must stress dose to avoid crisis to handle common health problems (say a broken bone or the stomach flu) and if you don't take enough cortisol orally, you may end up in crisis. 

Or, for example, you could end up with food poisoning. While most people would be able to handle a night of the runs or throwing up and just let it pass naturally, a person with Addison's Disease needs to go to a hospital for treatment. This is because if you are throwing up, you can't keep down your cortisol pills. Every time you throw up, it stresses your body out. Your body wants more cortisol. If you can't take it orally, you need to get it through a shot and maybe stay on an IV drip. 

It's very important to realize that feelings of panic, helplessness, fear, and anger are due to low cortisol, not your personality. The last time I was in the clinic, after that yoga class I cried through, the doctor on call was very kind and took some time to talk to me as I kept apologizing for crying. He simply told me that the way I was feeling was due to my body being low in cortisol. He said I didn't need to feel badly for crying and that there was no reason to cry. That while I had a rare illness, I was not the only person in the world with Addision's Disease. That we knew what was causing my symptoms and they would subside as my cortisol levels raised. 

After so many doctors treating me badly (I've been accused of everything from faking my symptoms to being a heroin addict/drug seeker), it was very healing to hear these words from a doctor. While I knew logically that I would be ok, reason seems to fly out the window when my cortisol is low. I needed to hear some reassurance that I would not continue to spiral into crisis. The days of going into an ER and not knowing why I was feeling the way I was, or what to do to treat me, are over. 

Thank goodness!


an Addison alien

who thinks the emotional effects of low cortisol are just as bad as the physical ones

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