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

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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Comment (1)

  1. zara

    Omg!!!. I swear it is like yoou are in my head and helping me to explain what it is like.

    Reply

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