Addison's and the Mortal Coil
,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.
Health and Unicorns
The other day I was reading an online post from a friend of mine in which she explained how chronic anxiety boxed her in. I could definitely relate, as did several of her online friends. However, in reading this, I wondered "Do mentally healthy people actually exist?". I noticed that I had a distinct lack of people in my life who claimed to be healthy and happy, or at least healthy.
I looked up "symptoms of mental health" online. It was actually a little difficult to find; I had to wade through a ton of articles on how to ACHIEVE mental health, but none from someone actually claiming to be healthy. I did find a couple of entries defining how a mentally healthy person functions in our society, which was a start. For example, here is a Wikipedia definition: en.wikipedia.org/wiki/Mental_health.
I think there is a difference between being mentally healthy and having a happy life. You can certainly have both, but a mentally healthy person also deals with the trials and tribulations the rest of us have to deal with. Because they make healthier choices than the rest of us, they probably have better outcomes, but life isn't always fair or kind. So I was curious: how does a mentally healthy person THINK? How is it different than me, and can I train myself to reroute those neurotransmitters to think more like a healthy person?
Since again, I have a lack of mentally-ill-free people in my life (at least, according to their therapists), I don't have a whole lot of role models to work with. However, I'm imaginative and observant, so at the very least I can speculate how a healthy person traverses through daily activities. Thus, my new self project began: Think Like a Healthy Person.
For the last week, I've been stopping myself throughout the day to ask myself: how would a healthy person handle this? The answer is often: not how I handle it, that's for sure. However, the solutions I come up with aren't too difficult to employ. Here's an example: I'll get a bill, and my gut drops (it always drops when I get a bill). I'll ask myself: Okay, how would a healthy person address this bill? Because my normal response is to throw it in a pile to forget about it, but I'll still have it stew in my brain, building up anxiety. I would imagine a healthy person would do one of two things: check the due date and if they can't pay it right away, schedule it with a reminder, then move on. If they can pay it right away, they pay it, then move on. In other words: Address the issue, then move on. So the last few bills, I both paid and/or scheduled. The result? Clearly less anxiety. Oddly, I was surprised at how hard it was to take care of the bills right away, at least mentally. I fought it with the resistance of a two year old. Damn, I mused, I am really stubborn.
I've been using this to address more complex issues as well, mostly involving interactions with difficult people. I am finding that people are difficult in part because I allow them to be, in my life. I recently had to deal with a guy that I employed to do some work for me, and he's been utterly disappointing. He makes constant excuses that, as a client, I don't really need to hear or WANT to hear. I just want to know when something can be completed, not his sob story. The bottom line: he's just not fulfilling the expectations we initially set up for this job. What would a healthy person do? Let him go. What have I done? Gone in circles with him, arguing over his botched timelines, and given him umpteen chances to fix his mistakes and increasingly grow frustrated with him, and then complain to everyone around me, which initially blows off steam but does nothing to fix the situation.
Honestly, I saw red flags early on but ignored them, essentially overriding my judgement of the situation as to how it could affect me down the line. I made the situation difficult by not addressing the 900 pound gorilla in the room the moment it entered. Yes, it would have been uncomfortable to say, "hey, I don't think this is the right fit, sorry", but the discomfort would have been minuscule compared to the months of haggling we've currently gone through. And I STILL had to let him go.
A lot of the difficult situations I've had the last few years could have been addressed very early on and many of them avoided, but alas, I don't think like a healthy person just yet. But I have noticed, since I've started this personal project, that when I do make changes, I'm relatively satisfied with the results. The loose threads aren't there, tangling up in my brain. I ended the week feeling less drained than normal, less defeated. I complained a little less. I got a lot more tasks completed than I expected to, but with less mental energy charging them up.
So yeah, mentally healthy people may be like mythical unicorns - they may not exist in pure form. I like to believe they're out there, and maybe I'll actually meet one. In the meantime, asking myself what a mentally healthy person would do in a variety of situations really just allows me to stop and examine how I think, and if that thinking is not adding any value to life, try something new. I don't need to be a slave of habit or mental disorders, as long as I have the skill of observation at hand.
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.
Hugo is my not-quite-three-year-old Boxer. He is a very complex dog: he can be playful, but then suddenly cranky and sullen. He'll want to eat whatever you're eating, but when you finally give him a little bit of what he's been literally drooling for, he'll roll it around his palate a few seconds, spit it out, then stare at you in disgust, as if you've just pranked him.
I think he may be an old soul; while he does have typical Boxer traits (jumps, plays, kinda dumb, wiggles his butt a lot), he does appear to get lost in thought. After a few minutes of Deep Thoughts, he'll come over to me, whine a little, and want an ear scratch or belly rub. He'll thank me with a hearty lick to the face, then settle down for one of several daily naps, usually right next to me on the couch.
Sometimes I'll talk to him about my day, or things that bother me. I know he listens because if I raise my voice, he'll appear quite concerned. Sometimes he'll "talk" back, a sort of Scooby Doo sounding retort, and if I don't let him get air time, he'll get frustrated and speak louder and louder until he starts barking at me in utter exasperation.
So to honor him, I am calling this blog "Hugo Howls". I want a place where I can talk a bit about the very real issues of having an autoimmune disease that literally saps my life energy, or what it can be like being an old-school visual artist, or the pitfalls of dealing with chronic pain. Sometimes I want to talk about my dogs (I also have a Boxer named Duke), weird things about my hometown, or the art of fishkeeping. Really though, I just like talking a lot.
Julie Baroh is a US artist, entrepreneur, and chronic chatterbox.