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Does Chronic Pain Define Us?

February 5, 20164

The strangest part about having mental health issues is that it makes you wonder who you really are as a person — in your core.

Like if you’re feeling insanely anxious because of morphine withdrawal, does that make you an anxious person? Does that become part of who you are? Is that suddenly one of the many personality traits people will associate with your character?

Or, when you’re on morphine, and it changes you from a Type A person into a Type B person, is that who you are now?  Is that your personality?

Or what about when you’re in so much pain that your patience is gone, and you realize that you are being a total bitch to everyone within striking distance. Does that make you a bitch? Is that who I am now?

I honestly don’t know who I am now.

I’ve been feeling especially unsteady lately as I try to navigate a new-found glimpse of health where I have actual pain-free days, and as I also simultaneously try to go off morphine completely. It turns out long-term morphine withdrawal is so much more emotional than anyone ever tells you.

And it turns out that I actually have no idea who I am as a person anymore.

I’m working with a psychologist and a psychiatrist, and I’m trying to figure everything out. But it’s almost like I spent the last three years of my life so completely consumed with my health issues, that I lost my identity. 

Back when my parents got divorced, I remember being in a “kids from divorced families” support group about two years after everything first went down, and the woman leading the group asked me to tell everyone a little bit about myself. And I suddenly realized I didn’t know myself well enough to answer that question.

I remember lying and saying I was involved in things I used to be involved in, like theater. I realized in that moment that I had been walking through life with my head down, with my eyes on the ground for years, and I was trying to look up and see the world around me again. I’d been so consumed by my family’s issues that it literally hurt my eyes to look up. 

These days, the setting is different but the realization has been the same. I’m on a date, or writing a Twitter bio, or talking to my therapist, and I suddenly find myself unable to answer basic questions, like “What are you interested in?” “What do you like to do for fun?” or “How would you describe yourself?”

And it hits me, that for the second time in my life, I have no idea who I am.

I know what I’m not. I’m not a youth leader anymore. I’m not Type A anymore. I’m not independent anymore. I’m not even drug free, or a practicing Christian, or living in my own place.

But if I’m not any of those things, who am I?

They say that going through hard times makes you realize who you really are as a person. If that’s true, it turns out that this whole time I was an atheist, Type B, bitch.

But I’d like to believe something else. I’d like to think that hard times are like a fire, a hurricane and maybe a bomb — all at once — and they just destroy everything in their path. Picking up the pieces means finding lots of damaged things. It means that for a while, everything is burned, and blown up and underwater. And that’s okay. It’s okay to be damaged.

The important thing is figuring out how rebuild, and creating something new from the wreckage. It’s about figuring out what I want my soul to look like now that it’s endured an explosion. I’m not sure yet who I will be when everything gets redone — I’m not sure who I want to be.

When 2016 started, I posted a quote on my Instagram, “What is coming is better than what has gone.” 

And I have to believe that whatever I choose to rebuild, it will be better than what the pain destroyed.

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Pain, True thoughts on pain

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5 Ways TIME Gets Pain Pills So Wrong

June 29, 20152

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.

(more…)

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Pain

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Figuring out what’s next with a long-term chronic illness

March 22, 20151

The thing about being Type A is that I’ve been trying to figure out the answer to “What’s next?” since I was 5.

Back then, I was vying for the accelerated reading groups — hoping it would lead to a good first grade teacher. That, of course, would put me on the right path through elementary school, which would then help me get the right classes in junior high. Those would inevitably lead to advanced courses in high school, which would help me get into a good college. And, of course, a good college is exactly what you need to get a good job and have a good life.

Like I said, I’m Type A.

Except, now that I’m sick, I hate “What’s next?”

Aside from the fact that this illness has destroyed all of my carefully laid plans, and made it impossible for me to even know what tomorrow will bring (much less my 30’s and 40’s), it has also made “What’s next?” take on a whole new meaning.

When you’re sick, “What’s next?” suddenly becomes “What are you doing to get better?”

Everyone from your best friend, to your boss, to the mailman feels like they’re entitled to know exactly what you’re doing to find a cure.

“Oh, so you went to the Mayo Clinic? And it didn’t work out? Well, what’s next?”

“Oh, you finally tried acupuncture and it was horrible? Well, what’s next?”

“Hmmm, so you aren’t willing to eat someone else’s healthy feces to get better? Well then, what’s next?” (True story).

It’s exhausting. And yes, I know most of the time, people probably mean well. But as the person who is actually sick, it sucks to hear “What’s next?” every day, when sometimes the only thing you actually know is next is another dose of hydrocodone in four hours.

I mean, I get it; our society has a really hard time grasping chronic illness. The idea that someone could be sick for the rest of their life doesn’t quite line up with the American Dream. Heck, I have a chronic illness and I still have a hard time accepting it.

There has to be something out there, something else to try that could lead to cure, right?

But now, nearly two years after waking up with excruciating rib pain that never goes away, I finally have to admit that I have no idea “What’s next?”

I woke up with obscene rib pain in February, 2013, and for the first year and half, I was all about whatever was next. I was constantly looking for new doctors, trying new drugs and visiting new hospitals.

But aside from getting the pain down to a more manageable level, nothing has really worked in the way that I, or anyone else in my life, had hoped.

So, for now, I’m relying on six different prescriptions, Alka-Seltzer Heartburn Relief Chews, and ibuprofen to get through each day. Beyond that, I’m at a loss.

I mean, I might end up trying the 3-week pain clinic at Mayo, but the waiting list is apparently so long that they sent me a letter in September telling me that they would call me in December. And I still have no idea how much it’s going to cost, if I’ll be able to get off work, or even if it’s worth trying. [Editor’s note: I’ve since found out that my insurance won’t cover the program, which is $35,000, so I won’t be able to do it].

There’s also the Cleveland Clinic, which is supposed to be like the Mayo Clinic. But the problem with that is it could end up being just like the Mayo Clinic.

I’ve also read about procedures where they can go in and cut the intercostal nerve, which some doctors think is the cause of all my problems. Something like that could be the miracle I’ve been searching for. But whenever I ask a doctor about it, they look at me like I’m crazy and stupid. Then again, maybe I’m finally at the point when crazy and stupid is my only option.

Or maybe I’ll just live out the rest of my life on opioids, praying my liver doesn’t give out before I do. And hoping that God really is out there and that maybe I will finally wake up pain-free one day.

I just don’t know right now.

What I do know is that I am still in pain. It does still suck. And I have no idea when or even if I’ll ever get better.

If that’s hard for you to grasp, think how hard it is for me to live it.

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