Addison's Disease Blues
Addisons Disease is something I have to address every. Single. Day. Which can be tricky, since its not easy to gauge like diabetes is. I don't have a little cortisol counter that can reliably check my cortisol levels and alert me that I need more steroids in my system. I have to kind of feel it out all day long.
Am I unusually tired? Cranky? Craving salt? Sweating too much? Dizzy? Bloated? Lethargic? Am I slurring? Nauseated? Suddenly getting a headache? Have I had enough water to drink?
Am I shaking? Cold? Hot?
Cortisol is a hormone that gets a bad rap. Its called the "bad stress hormone", but really what it does is counter stress, both physical and mental. Too much of any hormone in your body is bad, that's simple biology. But not at all, or not enough to keep you balanced, that can be deadly. And without cortisol and its sidekick aldosterone, your body can fly off the handle with inflammation, temperature fluxing, mineral balance, blood sugar balance, detoxification... you get the picture.
I take two steroids to replace both cortisol and aldosterone, but the amounts I take are not really reflective of what I really need; its kind of a baseline guess. Some days I clearly need more steroid to counter the stress I'm under (called "stress dosing"). "Stress" is anything: pain, injury, heat, illness and yes, emotional/mental stress. If I'm stress dosing often, then there's definitely a problem (working too much is often the culprit). You don't want to take too much steroids than you really need: it may mimic the natural hormones but its still manmade and has its own issues.
So every day I have to figure out how much stress and activity I can realistically handle. My doctor and I have worked out how much "stressful activity" I can handle a day, which is about 7 hours, and includes everything from driving, regular work, errands, athletic endeavors, cleaning, etc. Some days I wake up and I'm already depleted (bad sleep, illness, chronic pain are big culprits here). Even fun things are stressful to the body, so even when I'm doing something fun, if it takes a lot of energy, I have to watch it.
"Emotional stress" is the hardest to gauge. Getting in an argument, crying, anger, these can wear me out pretty fast. Low levels of chronic emotional stress can wear me down over a period of time, but the wear and tear is very real and I've had more than one episode where I was sent to the hospital for just the teensiest little slight, after months of teensy slights. For Addisonians like me, holding a grudge is a deadly thing.
Too much stress can set off an Addisonian crisis, which is when the body utterly fails in a stress response. Symptoms can be low blood pressure, nausea/diarrhea, low electrolytes, surging body pain, inflammation, unconsciousness, shock and cardiac arrest. Even if you've been drinking water, you can suffer dehydration (minerals being off, excessive sweating). I'm often winding up in the hospital a few times a year in crisis, usually triggered by flu, stomach bug, or overwork. Its a very unpleasant thing to go through.
I have an emergency injection kit I carry, in case I get into a situation (like an accident) where emergency response is not immediate enough. Its meant tide you over long enough until fluids and IV steroids can be administered.
One of my biggest challenges is finding ways of eliminating unnecessary stress. That, for me, is figuring out how to keep my work ethics under control, or keeping toxic relationships out of my life or at arm's length. It also means how to handle life challenges and problems in such a way that it doesn't eat me alive, or I don't stew over things. In this blog, I'll likely write about my adventures in searching for that sweet spot with my health. Finding a good balance with stress, know when something is too much, and how to set up boundaries.
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Julie Baroh is a US artist, entrepreneur, and chronic chatterbox.