What Pain Patients Can Learn from JFK

I’ve recently become kind of obsessed with the fact John F. Kennedy had health issues. Like major health issues. Like Addison’s disease, ulcers, colitis, and back pain issues, among others.

It’s one of the few things most people don’t seem to know about JFK. He was sick. Really sick. And he was often dealing with his health while running the country.

The Atlantic detailed some of Kennedy’s health issues in “The Medical Ordeals of JFK” back in 2013. They talked about how while JFK was in the White House he routinely saw an allergist, an endocrinologist, a gastroenterologist, an orthopedist and an urologist. JFK also regularly took amphetamines and had painkillers injected into his back.

In other words, he went through the same things a lot of us with chronic pain go through. Except, you know, he managed to run the Free World between steroid injections.

There’s a part of me that wishes he hadn’t hid his aliments. The article details how his campaign flat-out denied he had Addison’s disease. The day after his election, in response to a reporter’s question, JFK “declared himself in ‘excellent’ shape and dismissed the rumors of Addison’s disease as false.”

Personally, I had no idea that JFK struggled with so many health issues until I stumbled upon the information while researching chronic pain. And from what I can tell, most people in America don’t realize just how sick he was either.

I can’t help but wonder what he may have been able to do for the stigma associated with chronic illness if he had ever admitted to his aliments publicly though. Imagine if the stereotype of someone with chronic illness was JFK.  Sure, it’s a lot to live up to, but it’s better than what we face now, which is usually something along the lines of, “a lazy, druggie who probably brought it on themselves.”

And maybe he could have even helped people understand that cancer isn’t the only bad thing that can happen to you. And that sometimes, you don’t get better and you don’t die — you just stay sick.

But, there’s probably a good chance he would have never been elected if the American public knew he was seeing Max Jacobson, an émigré doctor from Germany who had made a reputation treating celebrities with “pep pills” (amphetamines).

The thing that really strikes me though is just how much JFK was able to accomplish despite his health. Most days, I’m in too much pain to drive to the grocery store, much less run for president.

From what I’ve read, it seems as though JKF was totally cool with popping as many pills as he needed to in order to keep going. As The Atlantic details, “[He didn’t] believe that the many medications he took would reduce his ability to work effectively; on the contrary, he saw them as ensuring his competence to deal with the demands of the office.”

In other words, he was all for medication if it meant he would be able to endure a press conference.

And I’m also guessing he was the type of sick person who had access to any and all medications that he thought would help him. Something most of us can only dream of.

There was definitely a point in my life when I would have loved taking hundreds of Norco each month so that I could have kept pace with my previous lifestyle. I mean, I probably wouldn’t have a liver anymore, but at least I’d still have my own apartment.

Even on my current doses, my main reason for taking drugs is so that I can do as much as possible. Sometimes that means a work trip to Arizona, and other times it means having the strength to sit up on the couch and type out a column.

So I can completely understand why JFK felt like he did about the pills. But I don’t think most people would.

Heck, the number one comment I get from anyone who finds out how many drugs I take on the daily is, “You need to get off all those medications.” I usually explain that if I “got off all those medications” then I also wouldn’t be able to get off the couch. 

I also assume that when JFK said he was in pain, at least one of the like 23 specialists he was seeing believed him and responded accordingly. Again, something most of us can only dream of.

He also probably had no issues paying for his medications or getting to doctors’ appointments. And I’m sure he was able to see the very best doctors in the country whenever he wanted.

Even knowing that he had all sorts of advantages as a sick person though, there’s still a huge part of me that feels really inadequate thinking about how much JFK got done. I mean, I have literally had to scale back every aspect of my life since getting sick. I quit my side job as a youth leader, which I loved with all my heart. I moved in with my mom. I started working from home. And I even stopped going to the mall as much as I used to.

For me, a big part of being sick has been losing so many of the things I love, and then figuring out how to cope with those losses.

But then, there’s another part of me that thinks of JFK and is kind of inspired. Maybe there is hope for me yet. Maybe I can still live in Brazil one day, or become a best-selling author, or heck, run for office just like JFK did. 

I just need to find that German doctor and get some of those “pep pills.”

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5 Ways TIME Gets Pain Pills So Wrong

TimeCover

Access to pain pills is not a cause I chose. I didn’t wake up one day and think, “Gee, more people need opioids.”

No, access to pain pills is a cause that chose me. Because I really did wake up one day two and half years ago, and say, “What is wrong with me? Why do I suddenly have insane pain in my ribs?”

It’s a pain that never went away. And for months, the doctors didn’t take me seriously. They gave me prescription-strength Advil, Lidoderm patches, and told me to wear looser bras.

None of that worked.

So, for weeks on end, the pain got worse and worse, while I tried multiple doctors, trying to find someone who could help.

I was in so much pain that I would often lay down on the ground mid-sentence because I didn’t have it in me to keep standing. The pain was just that overwhelming.

And at night, after trying to survive the day, I would lay in bed and plan ways to commit suicide. I wish I was exaggerating.

Finally, I found a pain specialist who put me on hydrocodone. At the time I had no idea that opioids were controversial. I was just happy to finally have found something that gave me relief.

The problem with hydrocodone though is that it comes with these crazy spikes. So you take a pill, it relieves the pain and then it completely wears off within a couple hours — and you to wait six hours for your next dose. It’s a horrible way to live.

I’m also on a time-released morphine that lasts about 8 hours. I take it three times a day — so I am always on an opioid, 24 hours a day. And then, on top of that, I also take hydrocodone as needed.

I pretty much always need it.

The pain still gets bad. But now, because of the pain pills, I have times when I am nearly pain free. Times when I can catch my breath and remember that life is worth living.

Opioids have literally saved my life.

Which is why I’m so upset about TIME magazine’s cover story about the “worst addiction crisis America has ever seen.” 

I realized when I read the article that I am spoiled by my Facebook news feed. I tend to follow chronic pain groups, so most of the information I see is about how chronic pain patients need access to these drugs. As a result, I’ve been lulled into thinking that the chronic pain community is actually making progress on this issue.

Apparently, we aren’t.

And it is articles like this that make it that much harder for pain patients like me to get the relief they need.

Let’s break down what it gets so wrong, with some quotes from the report.

Read more “5 Ways TIME Gets Pain Pills So Wrong”

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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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