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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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Why I love my doctor

People are always asking me why I drive two hours, one-way for a doctor. I mean, it’s not like I live in the middle of South Dakota (anymore) — there are plenty of other doctors right here in Illinois, some of whom are even in my hometown.

The only way I can explain it is to tell you that I drive two hours, one-way to see the most amazing doctor I’ve ever had because over the last two years I have seen so many of the worst doctors I’ve ever had.

And, if I had been a patient of one of those doctors, I probably would have ended up in the hospital instead of Black Friday shopping at the mall with my little sister.

It all started because I was up for a refill on my super strong pain pills, which the federal government has decided are so potent that I am required to get a written prescription for it every single month lest I become Pablo Escobar.

Usually this just means that my doctor mails me the prescription, because we both agree that a four-hour round trip for a piece of paper in 2014 is ridiculous.

But this month, my doctor decided to mail the prescription directly to the pharmacy instead. Something about how if a carrier goes postal, or someone robs the mailman, then I won’t have any issues because they can just re-send it to the pharmacy — something they couldn’t do if they sent it directly to me.

And since my doctor is basically my “dealer” and therefore holds all the power in our relationship, I said, “Fine. Whatever.”

Except, like a week went by, and the pharmacy kept telling me they never got the prescription in the mail. I assumed it was because of the Thanksgiving holiday messing up the mail schedule, but by Friday I was completely out of all my pain drugs and was starting to go into withdrawal.

In other words, I was literally thinking about killing myself by downing a bottle of sleeping pills. Seriously, that’s how quickly things can devolve when you suffer from non-stop chronic pain.

And the pharmacist was all, “Yeah, no, they can’t call in a morphine prescription. Sorry.”

In the olden days (a couple months ago) my doctor could have just called in a hydrocodone prescription to hold me over. But alas, the federal government has deemed that drug too hardcore as well, and now a written prescription is required for it too.

And so, as I was trying to decide whether I would attempt to live off unhealthy amounts of Advil for the next few days or just kill myself, I thought maybe I should give my doctor a call and just check to make sure there’s really nothing he could do.

In the back of my mind, I kept trying to remind myself that my amazing doctor had always come through for me before, and that I had no reason to doubt him now.

I mean, he’s so amazing, that if I ever run out of pain pills early, instead of pointing me toward a drug rehab center, he actually asks why I came up short and then tries to figure out a solution so it doesn’t happen again next month.

And, during appointments, instead of staring blankly at a screen typing everything I say without listening to a single word, he actually listens to me and all my stupid questions, and even engages in a two-way conversation. There’s usually even eye contact! Crazy, right?

He’s also the kind of doctor who, when I showed up at his office after three endless days of insane breakthrough pain, instead of handing me some Aleve and a pain specialist referral to get something stronger, he actually gave me a pain medication shot right there on the exam table.

As it turns out, he’s also the kind of doctor who’s able to order a 3-day emergency prescription of morphine over the phone, so that I can make it through the next few days without dying.

The relief that flooded my heart and soul when I found out that I was wasn’t going to have go through hell, agony, withdrawal and a pain spike waiting for the postman is hard to explain.

I mean, I didn’t even know emergency prescriptions were a thing that could be done. Luckily, because I have an amazing doctor though, I didn’t need to — he was already on it.

I still don’t actually have the full prescription because it turns out that my local, small town pharmacy requires doctors to send prescriptions to a P.O. Box instead of their main address. However, my doctor’s nurse knew nothing about this, so now the prescription is probably on its way back to Wisconsin with “Return to Sender” stamped on it in big red letters.

But, the nurse told me today that they’ve sent another prescription, this time to the right address, and in the meantime, they’ve also sent in another 3-day emergency prescription to hold me over.

I can tell you from all of my experiences from horrific doctors, that most of them would have just shrugged their shoulders in that situation, and silently judged me for being a druggie, and told me to wait for the mailman like a good little patient — withdrawal and pain spikes be damned. Or, they would have insisted that I get in the car and make the 2-hour drive to Wisconisn right then and there to pick it up myself, despite the fact that without pain meds a drive like that would have left me for dead for like a week.

So, when people ask me why I drive four hours, round-trip to see doctor, I just nod my head, smile and say, “Well, he’s the best there is,” and leave it at that.

Because I know in my heart that he cares about me, and that’s more important than proximity any day of the week and twice on Sundays.

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Is the Mayo Clinic’s pain program worth it?

So I’m pretty sure my insurance isn’t going to cover the three-week pain program at the Mayo Clinic.

Or at least that’s how the registered nurse I talked to on the phone made it sound.

She said something about how my specific insurance has never actually covered the pain clinic for anyone before. Then, because she didn’t want to completely dash all my hopes and dreams, she tried to pretend like I might be different somehow. She went on and on about how young I was, how sick I was, and how I had tried everything else, so I didn’t really have any other options. And she said maybe, somehow, I’ll be able to convince them cover it.

The thing is, I’m not even sure I really want them to.

Aside from the obvious logistical issues — like figuring how to tell my boss that I need three full weeks off work, or paying for 21 days at a hotel, or figuring out how to get myself to Rochester, Minnesota and back — I’m just weary of the program in general.

The most obvious red flag is that the nurse flat out said that their goal is to get patients off all their opioids by the end of the program.

Call me a drug addict if you want, but I was hoping the goal was to make me feel better. Apparently, I was a little off. The nurse told me multiple times that the program was “not a fix for the pain.” It’s more about helping you learn to live with it — something I thought I was already doing pretty well.

Plus, I’m just not sure I’m ready to go off my opioids. It’s taken me almost two years to find a balance of medications that I can live with, and I’m extremely weary of messing with it.

When the nurse started preaching against the evils of opioids, I wanted to stop her and ask if she’d ever been in obscene, chronic pain. Because I’d bet my last pain pill she hasn’t. It’s always the healthy people who are staunchly opposed to opioid medications.

Like so many other chronic pain patients, the opioids have literally saved my life. They’ve helped me keep up the good fight when I didn’t think I could endure any longer. They’ve kept the pain at bay so that I could shower, work, and even go shopping sometimes. They’ve been the only thing to offer me a much needed reprieve from the pain on a regular basis — so when all hope was lost and I started to worry I’d be living with a knife-like pain for decades, I could take a breath and remember that the pain would eventually go away again, if only for a little while.

Of course, it’s more than just the idea of giving up opioids that worries me. There’s the obvious stuff, like how would I survive out there alone for three weeks, seeing as how I currently rely on my mom for something as simple as my laundry? Or do I have it in me to continually show up for such an intense, daily program? And, most importantly, what if everyone there sucks and is mean?

But there’s the other stuff too. The kind of stuff you find yourself worrying about when you’re chronically sick and you’ve been disappointed too many times to count.

Like, what if they can’t help me? What if I go through this whole program and I come home and I’m exactly the same? Then what? Are there any options left?

Or why exactly would my insurance company refuse to cover it? I’m certainly not one to defend an insurance company, but do they have some sort of legitimate reason? Do they deny claims for the program because it doesn’t work? Or because it’s not based on enough research?

Or maybe, worst of all, what if I fail? What if I go there and the program is too much for me? Or I can’t cope with the changes or I don’t have it in me to do the work? What if, at the end of the day when I leave, I’m still just as sick as I was before and I’m left wondering if there was something more I could have done?

So no, I’m not sure that I even really want my insurance company to cover the three week pain program at the Mayo Clinic. The good news is they probably won’t.

UPDATE: Since writing this post, I have officially found out that my insurance would not cover the program, and so I would have to pay $35,000 up front to do the program. So, I have decided not to purse it. 

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