,I won't go into too much about Addison's Disease; Google it and you'll get a plethora of information, far more than I could really spend all day typing about. In a nutshell, its a rare adrenal disease, usually caused by autoimmune factors, that atrophies the exterior cortex of the adrenal gland (the interior is where adrenaline is made, the exterior makes cortisol, aldosterone, and a certain amount of sex hormones).
By rare, I mean really rare: 1 in 100,000, to be exact. You have a better shot at ALS than Addison's. I was lucky at at the disease lottery about 7 years ago, when I was diagnosed after having an Addisonian Crisis post-surgery that paralyzed me, swelled my brain and landed me in Neuro ICU at Harborview in Seattle (a well known hellhole of a hospital, but they have a great neurology dept). Fortunately I was shot up with insane amounts of dexamethasone, mostly to get my brain under control and my life was saved, along with most of the brain (the only damage was to the area of the brain that remembers faces, which is why I am friendly to everybody I see.).
Fast forward to now... I have awesome doctors, a good support system, and I'm pretty good at recognizing when I'm slipping into failure, which usually means I have to take huge doses of two kinds of steroids (called "stress dosing"). I have to take steroids every day to stay alive, like clockwork. That's not drama, that's just life. If I don't take them, after a few days of what looks just like narcotics withdrawal, either my heart will just stop, or I will fall into a coma, THEN my heart will stop. While this is going down, my mind will go crazy: with lack of cortisol, psychosis is common. Its a really fucking ugly way to die, if its slow. You can only hope you go really fast. Trust me, I don't forget to take my medicine.
They tell you ("they" being doctors) that if the disease is controlled you have a shot at normal mortality rates. Hey, awesome! However, us Addisonians know this is total bullshit. You can live a long, full happy life if the following happens:
-you never, ever have anything stressful ever happen to you,
-you never, ever get a "domino disease" (AD often gives way to other diseases like diabetes, Hashimoto's, etc),
-you never get in a traumatic accident,
-you never catch a cold, flu, stomach bug, or pneumonia.
With my support groups, I get to watch several people of all ages (children, teens, adults) die every month, every year, from complications of this disease. Sometimes I can't stand checking in with my support groups, especially during flu season. Reading that a six year old kid picked up a stomach bug, and three hours later he's on a life support machine, fighting for his life, God, it kills your soul. Another symptom of adrenal failure is hopeless depression; you have to remember its part of the disease, its not real life. We have to do welfare checks on each other all the time, and suicide rates with AD is really high. The easiest way to kill yourself is to stop taking your steroids and wait.
I am fortunate in that I'm a naturally sunny person and have a pretty good outlook on life - if I'm feeling bummed out, I run through a checklist of symptoms, and usually a bump of steroids will right all the wrongs I'm feeling within a couple hours.
We don't have a whole lot of people in our groups that are over 60 years old; in fact, the average age of death seems to be about 45-50. I'm smack in the middle of that, and I've thought a lot about mortality and this disease. Of course my plan is to live forever, and be a crazy old lady with a million cats. If anything, my goal is to drive my husband of 20+ years into insanity for many many more anniversaries.
But I know that all it takes is one bad taco to send me off to ER and cardiac arrest. One misplaced sneeze by one of my customers. One really shitty day full of rain and angst. I have to hope that the people around me respond correctly to my symptoms, especially if I can't think straight or I'm having problems staying conscious, its really important to have people advocate for you when you can't, and I can't have their fear interfere with my care response. I can't have my own fear get in the way, either. You can't play games with this disease, there is no wait-and-see.
A couple years ago in order to be proactive, I started getting my business organized, and last year I started the process of Swedish Death Cleaning (basically clean out your basement). The Will was written, and the Living Will created. I started working out a plan to allow me more time to paint, and a list of what paintings I need to work on (this is why I no longer take on commissions like I used to). I started telling more people to go to hell - not because I'm mean, but if your problems and needs take up my time but in the bigger picture mean nothing, fuck you. My clock is ticking. So is yours.
Energy is a rare commodity with Addison's, and I'm often having to sit things out because of exhaustion, which makes me super anxious. Tick, tick, tick! That crocodile with the alarm clock is always swimming behind me, just a teeny bit closer, and days like today - the bad ones - I can almost feel its breath on my heels. Today was a bad day. My heart was acting weird, I was sick to my stomach and lost a lot of fluid, my temp was low and I was shivering and sweating, too sick to paint, much less anything else. I got really sleepy at one point and truly was afraid if I fell asleep I'd never wake up. I wound up taking fludrocortisone on top of normal stress dosing - my heart flutters and dropping temp cued me that aldosterone was too low - and a few hours later felt much better, but who knows what could have happened had I just gone to sleep. And in my mind, all this does is instill the persistence of living.
People love talking of death when its only an ideation; they sure clam up when its reality. When I talk to other Addisonians about it, its very matter-of-fact, almost banal. Its also funny. You make a lot of jokes about being sick and dying and hospitals. Morbid humor is second nature. You laugh more, because what else are you left with? Even when I am in agony and in the hospital, I'll still find things that are funny, I'll still poke fun at the situation.
I recently had a dream in which I was talking to a spirit. I made the mistake of asking if I was gonna die soon, and he thought about it for a moment, and told me now's the time to work my shit out. I got really upset, but then thought, well, shouldn't I work my shit out? "Soon" can be tomorrow, or a year, or five years. Why sit around like everyone else? And if my shit's all worked out and I'm still here... make more shit. Rinse, repeat.
Having your mortality cut with a hot blade can be really depressing and scary, and yes, it scares me. I'd like to beat the system, make it to 50, past 50, to 60 and beyond. But let me tell you a quick story that pretty much nails my point in: about five years ago, a friend from college developed a rare, deadly cancer and was given a few months at best. She told me it was oddly the best thing to happen to her. She quit her job, and she and her boyfriend traveled the country, and she rode horses in the wilderness, which she loved. She started painting and drawing again, and she made sure to tell me I was an inspiration to her. She was so fearless, lived so big, I could only watch in utter awe. She outlived her prognosis by several months and died very gracefully. It really isn't the amount of time, its about what you do with it, how you live it. Not every day is going to be fireworks and parades, but if my intention is to live as best as I can for the moment I am in, I'll be okay.