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How chronic pain ruins you financially

I was already living paycheck to paycheck before I got sick. I mean, rent in the Chicago suburbs doesn’t pay itself and journalism isn’t the lucrative job I think it used to be back when Clark Kent got into the business.

But then, I woke up one day with horrible pain in my ribs and my bank account somehow got even worse. Is there a number below zero? Because that’s about where I like to keep my balance.

I’m not telling you this in an attempt to solicit any type of personal donations. I just want the world to know what those dealing with chronic pain are actually dealing with financially. I want to give a voice to all of those people out there who are too sick to take a shower and, as a result, are too broke to upgrade their tacos to supreme.

I can still remember the first time I went to pick up a name-brand prescription at the local Walgreens, and being completely horrified by the fact that they wanted a freaking $50 co-pay. That’s a tank of gas. Or a cell phone bill. Or like three dresses at Kohl’s during a good sale.

Now, I’d kill to get all my drugs for $50.

I’m an American. I have insurance. I have a job. You wouldn’t think getting some random pain in my ribs would completely ruin me financially.

It has.

There are the co-pays for the doctor visits and the drugs; the money I owe before my deductible each year for the MRIs and the ER visits; and the vain attempt to find cures from snake oil salesmen offering alternative medicine that’s never covered by medical insurance.

I have so many medical bills that I can’t even keep track of how much I owe which doctor anymore.  Let’s just say, it’s “a lot.”

But it’s not just the medical bills that have to me too broke to buy fresh fruit on the regular.

It’s kind of hard to keep a job, when you literally don’t know from day to day if you’re going to be able to get out bed.

I’ve been very lucky in that my full-time job has been extremely accommodating, allowing me to mostly work from home and even take breaks during the day as needed. I know that if I had any other job, I would have had to file for disability a while ago.

That doesn’t mean I haven’t lost anything though. Back when I was healthy, I was able to maintain a side job as a part-time youth leader. I had to walk away from that when it became obvious that I couldn’t be sure I’d be able to get out of bed and make it to church most Sunday mornings. And when I resigned, I also gave up $10,000 a year.

Now, I’m barely making enough to make ends meet.

I spent the entire second week of June with $0.00 in my bank account.

And I can’t exactly go looking for a new job to make up for that $10,000 pay cut. I mean, where else am I going to work that allows me to make my own hours and write feature stories in my pajamas on the couch?

So, I’m stuck. I’m stuck in job I can barely hold onto that only pays me barely enough to eat on a daily basis.

When you’re well, it seems like you’re constantly hearing about fundraisers for sick people. Someone, somewhere always seems to be walking for cancer, or hosting a fancy ball for MS, or doing an ice bucket challenge for ALS.

But there are no fundraisers for people like me. Nobody does a 5K for chronic pain — maybe because most people with chronic pain are too sick to walk 3.1 miles.

I think there’s also still a lot of stigma associated with chronic pain. A sort of, “Well if you would just give up gluten and go to a chiropractor, you’d get better, so it’s kind of your fault.”

I get it, I mean watching someone lay on the couch all day with an illness nobody can see doesn’t exactly scream, “I’m super sick.” It’s easy for people to assume you’re just too lazy to get better. After all, if it’s just a matter of will power, then they don’t have to worry about the same fate becoming them.

And, I’ve noticed that people never like to use the word “sick” to describe chronic pain. They much prefer, “I’m in pain,” to “I’m sick.” It’s a way of separating those suffering with daily pain from the “truly sick.”

The thing is, having chronic pain does make you sick. It’s an all-encompassing chronic illness just like any other all-encompassing chronic illness. And it steals little pieces of your life in exactly the same way.

Sometimes, when I’m in really bad pain, when I’m literally so sick that I can’t even get to the bathroom, I think about a world where I would be forced to apply for disability. But then, I’d be even more broke than I am now.

I’m not sure what you’ve heard, but Social Security isn’t exactly paying people with bags of gold. Everyone I know who’s living on disability payments is barely living. It’s not exactly the kind of life I thought I’d end up with back when I got my freaking master’s in journalism.

But I guess that’s the thing about chronic pain. It completely destroys everything about your life that you thought you’d end up with. It wipes out all your hopes and dreams, and makes you start all over with nothing. And then, it sends you a hurricane just to make sure you got the message.

Being broke all the time only makes it that much worse.

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Chronic Pain: Nobody Tells You How Hard It Is

Some days, I feel like I can finally lift my head above water. Like I can finally take a breath. Or better yet, a couple of deep breaths. 

I feel like maybe I finally have this whole chronically sick thing figured out. And, finally, after being in pain for more than two years, I can focus on living the life I want to live. Like just maybe, this whole chronic pain thing isn’t going to win after all.  

And then other days, like today, I wish I was dead.  

Days when I wake up with an insane amount of pain in my ribs, and a migraine and I have to work because I’m genuinely afraid I’ll lose my job if I call in sick one more time. 

Days when I hate my body so much, because it’s like a jail keeping me prisoner and holding me back from the life I once thought I was born to live.  And days when I want to push myself, because that’s what I do, I push things, to the limits, and that’s how I have always lived my life.

But then I do that, I push myself, and I do something crazy like go for a walk, or stay up late, or take a shower two days in a row, and then I literally end up spending the next week on the couch in too much pain to function. 

Days when all I want to want in the whole world is to lose weight, but instead, because of my stupid body, the only thing I’m allowed to want is relief from the pain. So rather than putting all my resources into losing some of the 50 pounds I’ve gained since getting sick, I have to use all my resources to just sit on the couch and check my email. 

I want so bad to worry about regular things, like whether or not my boyfriend is ever going to propose, or whether or not I’ll get that promotion. I want to think about going for a long walk, and just worry about the weather. 

But my body won’t let me. Instead, I have to worry about whether my boyfriend will, or should, stick it out with someone who is so radically different than the healthy, much thinner girl he first met almost 5 years ago. I have to worry about just keeping my job. I have to worry about whether my body has had enough time to recuperate from the walk I took three days ago to allow me to blow dry my hair. 

Being sick every day of your life is so much worse than anyone ever tells you. It’s so much harder than anyone can ever explain. 

That’s the thing, really. There’s no “talk” with the doctor when you have chronic pain. A medical professional doesn’t pull you into his office, hand you a box of tissues and say, “I’m so sorry to tell you this, but you have chronic pain.” That conversation never happens.  

Instead, they scan your test results, say something about sending you to a pain specialist and then they go on with their life, while you’re left holding the pieces. Or worse, they say, “At least you don’t have cancer.”

Everything is suddenly different, but nobody has the decency to tell you that. They just ship you off to another doctor and hand you some opioids. 

But your life has been changed forever.

There’s the constant, daily battle with the pain, and the insane side effects from the drugs you use as weapons. There’s the loneliness and the feeling of failure that comes from being stuck on the couch in pajamas all day, every day, even on Easter. There’s the assault on your faith, and the outright attack on your ability to hope. And there’s the way your brain goes crazy just trying to understand how you’ll ever endure like this forever. 

There are other days though. And on those days, for a second, you almost feel like you’ve got a handle on the situation, like you’ve got your head above water. 

Today just wasn’t one of those days. 

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How to be Healthy When You’re Sick

I’m trying to find ways to be healthy despite the fact that I constantly feel like I’m dying.

Having chronic pain is like waking up every single day feeling like you’ve just been mugged, then hit by a semi-truck, and simultaneously come into contact with the plague.

And when it first hits you, you’re like, “I can’t be expected to function under these conditions. Nobody could function under these conditions. I must call in sick to life.”

But after a month of laying on the couch watching every episode of Burn Notice three times, you suddenly realize you’re probably not going to be getting better any time soon, so maybe you should try to, you know, shower or something.

That’s where the drugs come in. And suddenly, you wake up one day and you’re literally taking six different medications before you even get out of bed in the morning. But hey! At least you’re getting out of bed.

And over the next few months or years or whatever it takes for you, you just sort of live in this drugged-up state of barely existing. It’s how I would imagine high school pot heads hope their life turns out, except without all the stupid stabbing pain in my ribs (or wherever yours may be).

Aside from being high daily, you find all the shortcuts you can. For me, I ended up working from home. I moved in with my mom because doing my own laundry and washing my own dishes is literally too difficult. I shower once a week to save my energy. I shop online. And I never, ever, ever wear high heels. Ever!

On one level, I’m just happy that I’m no longer in so much pain that I literally hope I don’t wake up alive in the morning. But on another, I don’t really like what I see when I look down the long, dark road that’s probably going to be my life for, what? Another 50? Or even 60 years if I’m terribly unlucky?

Which brings me to the yoga. Yes, it’s true. I have started doing yoga. I’m hoping this is the next stage in the chronic pain life cycle, which will be followed quickly by, “Find a cure, and live happily ever after.”

While I’m here though, barely living, I figure I might as well get really good at downward dog. I started with a 30-minute PM yoga session for beginners on DVD. The hardest part is when I had to take two deep breaths in a plank pose. And, guess what? It didn’t suck.

I mean, I can admit when I’m wrong. And I was totally wrong about yoga. I really, really thought that bending my body in new, crazy ways would only make things worse. It’s just the human intuition in me, saying, “You’re in pain, stop doing stuff.” But, with chronic pain, you have to learn to override that voice.

And so, I’ve even done the 30-minute AM session, and I didn’t even die from that either. Plus, I also found another DVD by the same soothing instructor that’s 51-mintues long, and I did that one too, all without any trips to the hospital or anything! I’m pretty excited about the whole situation.

After each session I feel really relaxed, and it seems like I’m going through fewer pain pills when I do the yoga as opposed to when I don’t.

I’ve also started drinking tea. Back in the day, when my body didn’t hate me, I used to say things like, “Tea is literally just dirty water. Ick.”  But now, I’m sicker and wiser — and I need to find ways to bring a sense of peace to my wounded body.

So, yeah, tea. It’s got to be better than Coke, right?

There’s a morning tea that seems to ward off the overwhelming feeling of being high that the meds give me. And then there’s a night tea that helps me poop — something I’ve really missed doing ever since my prescription pills took that seemingly natural bodily function away from me.

Truth be told, I am secretly hoping all these new changes will help me lose some of the 50 stupid pounds I’ve gained since getting sick. But if they even help me do more than shower or something, I’d be cool with that too.

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