It’s Thanksgiving Week. I’ll try to ignore the seemingly intractable violence in the Middle East, Cranky Old Man McCain who thinks an under secretary of state should be releasing raw intel on Al Qaeda on Meet the Press or face a Watergate style tea bagger inquisition, and some AS symptoms that are making idle TV watching and world-changing blogging difficult even though they are tangentially related to my plight, not to mention the many, many issues more important than me and my day job such as it is.
In one year and one month and a week and three days, there will be healthcare for all. Until that day I can’t seriously think about going freelance. Just getting another job and waiting out the three months until I qualify for healthcare benefits, plus the month or two it takes for it to get set up, get in front of docs, and get my medicine is a risk. I have a serious chronic health condition that virtually disappears when treated but returns and rules my every waking moment when it’s not.
I have Ankylosing Spondylitis, or AS. It’s an autoimmune disorder that comes in varying severity. I’ll spare you the details, short version is it started out as an occasional ache and pain years ago. Today, if left untreated, it would mean extreme pain from L5 to C1, all through my ribs and sternum, along with loss of vision to the point that I can’t drive, safely anyway, and can barely read. The eye thing is called iritis and it really, really hurts. Chronic iritis has resulting in permanent damage to both eyes. I’m suffering a flare up in the right eye right now because I spent the last few months trying a routine that would or could have minimized the symptoms.
Just a few years ago I had savings and a future; a sweet six figure retirement account, thousands of disposable dollars in my checking account alone, a reliable car paid for, no mortgage, zero debt, plus a modest but steady monthly income from various sources including free-lance writing that covered basic bills. Best of all I had my health and a publisher sold on a book, I had just gotten the first advance padding my day-to-day expense account even more. For good or bad I have no kids. In short life was pretty good.
Today my retirement is still reasonably intact, assuming Social Security and Medicare still exist and if I live until 2027, and I don’t have any kids, but the rest is all gone. There are many reasons for this, but the two biggest factors are Bush’s recession and my health. The recession took out the publisher, boom, belly up, chapter 11. It also chastened other publishers, so that idea is dead at least for now, and the market for dead tree books may never recover. The recession also scuttled other free-lance jobs, I used to make OK money whenever I needed it knocking out science articles either under my pen name or helping other authors with theirs. A couple of burgeoning online things crashed and burned, it basically put everything on hold from 2009 to the present.
Then in late 2009 I started having AS flare ups much worse than I’ve ever had. Bad enough that, left untreated, I’d be in that hazy region between paid disability once every month or two and able to work most of the time — a state most employers would rate as unemployable. That treatment is a med called Humira. Without health insurance Humira would cost me about $1500/month. Without health insurance and with no disposable income, just seeing a rheumatologist once every quarter to get the steroids and painkillers that keep it at bay is problematic. Hell, most rheumies in my neck of the woods won’t even see an AS patient without insurance, there’s too many cross discipline symptoms, they say they can’t shoulder the risk.
So in 2010 I took a low paying, 11 dollars an hour entry-level deal with a company that did provide great benefits. There’s a huge profit-sharing bonus each year and they pay %100 or my healthcare premiums. At the time I took it people were being moved up fast in that company and in my department. Twenty something kids were being promoted after a year or two to team leaders, then to higher positions paying about 50k a year. It was technical and specialized, I had to learn a lot and the learning curse was steep. But I was able to keep up and soon began to excel. Within a year I had already qualified for the first major promotion and my AS was totally controlled. But that job paid so poorly I regularly went into savings for all the things it didn’t cover, car repairs, birthday and holiday gifts, what passes for a social life these days.
Then about a year ago all the raises stopped — including by the way the one I was qualifying for, going from level one to level two to level three used to pay an extra 2 bucks an hour on each promotion … they were changed to 40 cents an hour — a round of lay offs came and went even though we were profitable as hell and serially understaffed. Everyone was basically frozen where they stood. I was frozen as a level two tech at 12 dollars an hour. Shortly afterward a round of unplanned routine expenses hit costing me two or three grand …. and I remember it like it was yesterday: when it was over I discovered to my horror that my checking/savings account were almost depleted and there was nothing on the horizon to fill them back up.
Today I live on, or more accurately I struggle, from shitty paycheck to shitty paycheck and it is a miserable fucking life. I got paid a few days ago and there’s just under a hundred bucks left over after mid month bills and groceries to last until the end of the month. I’ll spend a chunk of that on copays for a rheumatologist appointment and lab work in a few hours.
Beginning last summer I realized this is serious and it’s not getting better. I started looking around and there weren’t many jobs I was qualified for. I’ve applied for everything you can imagine short of hooker. I’ve gotten a few scant offers, some jobs required moving a long distance, no relo package it was all on me, and they didn’t pay much more than I make now anyway. Others are closer and pay a bit more than my current slot, but so far not that much more, and I won’t qualify for company sponsored health insurance for that three month-plus-obstacles time period. The rest are all temp and contract.
Not many options left. So I started working out a lot, not just to lose weight and look/interview better, but because rigorous exercise is the only thing that really keeps AS from flaring up to unbearable levels And it worked to an extent, I lost thirty pounds and I’m getting back to my old buff self, and the AS symptoms simmered down almost immediately. They simmered down so much that I decided to see how I would do without Humira as a sort of test run for a job jump. Last month I got exposed to MRSA so it turned out to be a fortutious break.
I did pretty good, four months without Humira with out any serious problems I couldn’t handle. Then, about a month ago AS kicked back in with a vengeance. Enough that I’ll have to get back on it. So that’s where I’m at. When Obamacare kicks in I might have more options, but for the time being I have to weigh the benefits of a crappy low paying job that barely covers my most basic health and living expenses, or free-lance work or another job that risks everything. My guess is when the labor markets open up a bit, which is probably going to happen next year, I’ll be able to get a job that pays closer to a living wage. But I can tell you as a former exec at a Fortune 500 firm, no one is going to make and implement any major staffing decisions they don’t have to make and implement until after the first of the year.
I’m not in a finantial bind and I have good health. Where can I send a donation to help you?
That’s very kind of you. The good news is I don’t need donations. Although in a few weeks I’ll hang out my annual Holiday bleg if you’re still around :)
As Krugman and DeLong keep saying, “it’s the demand stupid!” The bizarre circumstance of someone with your qualifications being forced into penury is morally objectionable. The welfare state has succeeded too well in the sense that the pain is more chronic and persistent than acute. Consequently no one (or at least not enough people) are getting off their butts to protest. It really is imperative that the Democratic left hold the Obama administrations feet to the fire and get further stimulus!
You know about PCIP, right?
https://www.pcip.gov/
I gave you the initial advice, so I guess I’ll continue. I would start looking at where your revenue stream should come from and build your business plan. It’s quite clear to me that you would be much better off as a self-employed consultant/freelancer than as a “wage slave”. And everyone needs a business plan, even if it only sits in a dusty corner of your computer. The mental exercise is the important part of the process.
Though I am surprised that you think the writing business has dried up completely. I’m a professional writer and have been for virtually my entire career in one form or another (minus the years I got bumped up to senior management and was fracking miserable). As I noted, I’ve been freelancing for almost 8 years now. When the Bush crash happened, I had about a 6-month severe drop-off in business. I took a sabbatical. When I came back, so did the business.
It’s there. Hidden away in the nooks and crannies. In fact, because companies are moving toward business models where employees are less valued than contractors, there’s even more opportunity out there for freelancers. Sure, you have to hustle to get business–especially initially. That’s the “no fun” part of the process. But once you land some stable clients, it gets a whole lot easier.
This is all non-fiction, non-political, “work for hire” type writing. I get a check, they get the copyright. Try it. It’s quite lucrative in the right setting.
But go in with a plan that centers on your individual areas of expertise. Find the nooks and crannies of the industry you’re interested in. Every yutz with ears wants to be a political writer, or a travel writer, or a blogger-journalist. And those jobs pay exactly the way you think they would. They’re crap.
Instead, be a technical writer. Confine yourself to the “boring” subjects that you’re coincidentally an expert in. Identify the people who are targets for your skills and expertise. Join/lurk around business development groups in that industry. Figure out who else is making money the way you want to make it. Trust me, there will be plenty of others. Someone there will mentor you. You just need to ask.
Cracking the door open is the hardest part. Network. Start with friends and former co-workers. I was lucky because I had 25 years of direct experience in the industry I wanted to serve. I just made a couple of phone calls to former co-workers, and “voila”, I was set up. I don’t know your exact situation, but you might have to work harder to get set up. But if I can do it, it’s definitely do-able.
I’m also lucky that I don’t have health issues and my premiums are not high (although insurance is still my #2 expense after mortgage). So, I realize that I’m coming from a position of privilege. But I don’t think those are insurmountable problems.
Humira also has a patient assistance program. You don’t qualify now — but it’s an option going forward. Check it out.
That’s it. Hope it helps — if only to give you something to look forward to each day other than a non-fulfilling day at a shitty job.
You damn lazy liberals with your “gimme gimme” attitude. Whatever happened to personal responsibility? You should have thought about this scenario before inheriting two copies of HLA-B27. Now you expect the rest of us to pay for your poor genetic choices? Pfaw, I say. Pfaw.
Or, because I only bat about .500 with sarcasm, I’ll say it this way: About time we started doing something about health care around here. Sorry you’re so screwed at the moment.
I’ve thrown money in a few tip jars around this blog. I’ll keep my eyes peeled for the bleg.
I’ll also keep my eyes peeled.
I’ve been in a “forced freelance” industry for 13 years. Sometimes I manage to swing health insurance for a few months. Usually not. When my wife went back to school, we got on the school plan, which was garbage but which would have made a medical catastrophe slightly less catastrophic.
This year, the school changed plans. The new one is “much better” (according to the school admin) but MUCH more expensive. So much so that we were forced by the economics of freelancing to ration our health gambling dollars. My wife is currently insured. Me, not.
Should the gamble work out, in 13 months-and-change I will gladly trade my FREEDOM!!11!! for a little less health care anxiety. But only a little less, because in this fucked up country, even under Obamacare, we will persist in allowing malevolent, parasitic insurance companies to bleed off money which should be going to actual health care in exchange for nothing except making our lives more miserable.
Stephen, I’m sorry that you are going through this, and I know how it feels.
I have Mixed Connective Tissue Disease – a mix of RA, Lupus, Sjogren’s and Psoriatic Artthritis. I also have Spasmodic Dysphonia and Meniere’s thrown in.
As a military wife, I’ve taught in more than one state. I paid into SS in some states, but when I taught in Texas for 7 years, I didn’t. The school district in SA “opted out” of SS and forced us to pay into the Texas retirement system. They lost a third of my money in the 2008 downturn.
Now that I’m disabled, I can’t qualify for SS Disability because I haven’t paid enough into SS.
I’m lucky that I’m covered by my hubby’s insurance. Of course, since he’s one of those leeches who works for the Federal government, the repubs in Congress have been trying mightily to take his benefits away. He hasn’t had a pay raise in three years, even though our costs keep rising. We just hope that he can hang in there until retirement and that Medicare isn’t ruined.
Like you, I try to stretch out those prescriptions. I quit taking MTX, I often take Plaquenil every other day, and I can make a one month supply of Restasis ($72 even with ins.!) last for four months.
It is entirely wrong that people our age, with the educations and experiences that we have, should have to live paycheck to paycheck. I hope that things do get better.
This situation is SOOO wrong on so many levels. I hope that the Obamacare kick-in after the first of the year helps your prospects, both with other companies and in freelance. I, too, would be happy to make a donation to a blogger whose work I enjoy so much.
Whoever runs the universe graced me with AS back when I was about 17. I didn’t realize it at the time, of course, but it developed from a high school wrestling injury. By the time I was 19 the symptoms were starting to come on pretty strongly. Even though my father had the same disease, at that time, it was only dimly perceived what it was that was happening to my body.
Over the next few years, I got married, quit college, had a baby daughter, and continued to live with pain. Lots of pain. That’s when I was diagnosed with rheumatoid arthritis, which AS is, sort of. After having watched my once-athletic father be slowly bent and crippled by the disease and further afflicted with experimental treatments (gold shots in his knees; tyhphoid innoculations that caused him to shiver and sweat off 10 pounds a crack; and Mayo Brothers’ 9-month full-body cast to try to keep his spine straight, among other tortures) I didn’t take it well.
But my wife proved extremely strong. She went back to college and earned her teaching degree and I managed to find a job with an industrial firm that paid lousy but had great insurance (sound familiar?). Teaching jobs were hard to come by after my wife graduated, but she worked as an instructional aide for a few years before she landed her first teaching job. She eventually earned her Master’s plus 47 additional hours. She’s pretty tenatious.
Me, I soldiered on working as a records clerk as my spine and neck slowly calcified into one magnificient Nike swoosh-like shape. The pain was constant and the only thing for it then was aspirn, of which I was taking 25 a day. I’ve always had a soft spot in my heart for AT&T Princess-style phones after the night I collapsed on the kitchen floor from my first bleeding ulcer. My daughter, then 5, climbed up on her highchair, got the Princess handset down, and I was able to crawl close enough to dial for help. That was about 1974, and was the first but not the last bleeding ulcer I survived.
A couple years later while I helped write a local history book, the only uncalcified disk in my spine slipped, pinched a nerve, and caused considerable pain. I finished my manuscript on my trusty Underwood upright typewriter, but had to manually put my left hand on and off the keyboard because the muscles no longer worked. My doctor decided the Mayo Clinic was the only place that might have an answer for THAT problem. Given what they’d done to my dad, I wasn’t all that enthusiastic, but my wife drove our 1973 Datsun through the snow up to Rochester and found out that what they’d been calling my condition, Marie-Strümpell’s Disease, was newly renamed ankylosing spondylitis. Which didn’t mean jack to me, one way or another. Despite seeing literally hordes of doctors (I was the first second-generation patient they said they’d seen), all that could be prescribed was bed rest, with better (though much more expensive) pain killers. It more or less worked.
A few years after that, my company forced me to retire on disability, which turned out for the best. Despite a couple more bleeding ulcers, and the AS attacking and destroying my left hip (thanks to all those aspirin, I almost bled out on the operating table during hip replacement surgery) I was able to get a part-time job in the weekly newspaper biz. One of my best friends from fifth grade, who’d moved away, came back to our small town and started a feisty weekly. I started out writing a weekly history column and sort of graduated to covering occasional evening meetings of the school, village, and park boards (“Here’s all you need to know about writing news stories,” my buddy said drawing an upside down pyramid on the back of an envelope. “Important stuff first, bullshit last, make the reader think they were there.”). It worked out pretty well (lots cheaper than J-School, too) and when he sold out to new owners I went along as part of the deal, continuing to do history, a little editing, and cover the school board for the next 27 years.
The major pain was gone when I got into my early 40s, although the residual pain continued–and continues. But the pain meds are lots better and not nearly as deadly. Eventually, the AS attacked my aortic valve and in September, the docs installed a new one, of bovine extraction, I’m told. Meanwhile, our son, born in 1977, has developed AS, though our daughter, 9 nears older, has not. Our son was ‘lucky’ enough, being a third generation AS recipient, to get into a treatment trial with Enbrel, and you wouldn’t know he has it at all. Meanwhile, my once-mighty 5’8″ frame has settled down in that aforementioned swoosh shape to about 4’10”.
I’ve been fortunate to have had good insurance, first through those cheap bastards at the plant and then when it was bought out by vulture capitalists, my wife’s school district, plus Medicare and Social Security disability. My son, the cabinet and furniture maker with the English degree, likewise has a teacher wife, and so the godawful cost of Enbrel is covered. Unfortunately, none of that does much about 50 years worth of pain, encroaching COPD, asthma, and the rest. On the plus side of the scale, I’ve gotten to watch my kids grow up, my grandchildren born, and have had some great local journalistic times. And for some reason, my wife’s still sticking around after 47 years.
Us AS types are pretty rare they tell me. My first rheumatologist back in 1981 told me he’d seen lots of folks working in the newspaper biz with AS, but they were selling copies on the corner not writing for them. Me, I consider it a good day when I can slip out of bed without too much pain involved, because it’s one more day to try to do something productive and learn something new.
To continue with all the unsolicited advice: Since you already have a book, I’d suggest either asking for the capital to have it printed/edited/distributed (whatever you need here) with something like Kickstarter, or go a similar but cheaper route and publish electronically (maybe offer a printed version later, or a small limited-dead-tree-edition at a higher price for fans).
Yeah, the world of medical insurance is teh sux. Sometimes even when you have decent insurance, they’ll fuck you. I’ve got long-term experience with this, as I live with a medical disaster area.
As someone who has a personal reason to know more about AS and what it does to you than anyone who doesn’t suffer from it should know, I offer quiet sympathy, and admiration for persistence in the face of the medical and professional el nino you’re going through.
My rheumy took such pity on me yesterday he gave me a free sample of Humira and said go ahead and use it before the obligatiry TB tests comes back. He also said Humira is not like a narcotic, there’s no advantage to letting it clear out every now and then. In fact that can accelerate the production of antibodies to the Humira antibodies that bind TNF, which means the med could loose some effectiveness everytime you stop taking it for a few months and then resume.