Tag Archive: chronic illness

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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We need more chronic pain awareness

Man, my medications make me so freaking tired. Like seriously, I’ve been off work for nearly two weeks because of the holidays, and I basically spent the whole time on the couch watching makeup tutorials on YouTube and flipping through Netflix (if you haven’t watched “The Honourable Woman” you haven’t truly experienced television).

I mean, in my head, I had all these plans and ideas of things I wanted to do. I really wanted to dye my hair, and go through all the clothes in my closet, and organize the mountains of candy that have piled up in my house as a result of my full-time job as the managing editor of a confectionery magazine.

And I wanted to write like 50 columns for the National Pain Report. Do you know how many I actually wrote? I wrote one. This one. That’s how many.

Because every time I start to think about doing any of those things I just end up grabbing a blanket and turning on another episode of Ally McBeal. It’s all those opioids and sleeping pills and nerve pain medications in my system. They just drain the life out of me.

All of this is to say that what I really want to do feels so completely impossible.

What I really want to do is raise awareness of chronic pain.

But the great irony is, of course, that having chronic pain makes raising awareness about chronic pain feel like an insurmountable task. I know first-hand that most of us are either in too much agony, or too drugged up to get the word out about what we’re all dealing with.

Yes, I know there are Facebook groups, and pain associations, and even websites like this for patients to rally around. But I think we can all agree that there’s still so much work to be done.

We need chronic pain awareness that’s even more in your face than all the pink breast cancer ribbons during October. People already know that cancer is bad, but try explaining to someone what it’s like to wake up every single day feeling like you’ve been hit by a truck even though you have an illness they’ve never heard of.

We need a world where I could tell someone, “I have chronic pain” and they would immediately know that I’m going through hell. A world where people hear me say that and automatically ask if they can bring me dinner, donate to my medical bills, or drive me to doctor’s appointments.

We need a world where people learn about my illness and are inspired to walk for chronic pain, and make T-shirts for chronic pain, and buy a can opener in a specific color that donates part of the proceeds to finding a cure for chronic pain.

Beyond that, we need to get our message to the politicians. They need to understand that all of us aren’t actually faking it in an attempt to get good drugs. We literally need opioids just to survive each day.

Politicians should say things like, “We couldn’t possible restrict medical care for those with chronic pain, even if the DEA is asking us to. We all know their struggle is hard enough. We don’t need to add to it.”

And we need pharmacists who look us in the eye when they hand us our drugs. Pharmacists who see the medications we take as just as important as the medications those with diabetes or asthma take, and who prove it by going above and beyond to get us the medications we need when we need them.

More than anything though, we all need to know we’re not alone.

We need to know that others are battling exactly the same demons we are late at night, when we feel like giving up, and giving in. And we need to know that it has nothing to do with us personally when we’re being treated like a drug addict at a doctor’s office. And that none of us really are lazy or faking it or exaggerating our symptoms, no matter what our friends and family say.

So, like I said, there’s still so much work to be done.

The only problem is, who the heck is going to do it? Because personally, I’m in way too much pain and on way too many drugs to do any of it.

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Reflecting on my 2 year ‘Pain-niversary’

It took me two years to figure out that I could paint the top of my prescription bottles with nail polish so that in the middle of the night, when all I have is the light of my phone, I could find my morphine faster.

Two freaking years.

That’s how long I’ve been sick now. That’s how long it’s been since I woke up with crazy, horrible, random rib pain on my right side that never went away.

It’s the worst kind of anniversary. There’s nothing to celebrate. It’s just a chance to look up at the sky, shake your fist, and say, “I’m still here. I haven’t given up yet. This thing has not beaten me. I will never surrender! Or, at least I won’t yet!”

I feel war-torn. I am tired, I am broken and I am clinging on to only a shred of hope.

I have so many medical bills that I pretty sure I’m going to die before I’m able to pay them all off. All the pills I take for breakfast (and lunch, and dinner) have made me gain about 50 pounds and, perhaps worse than that, they give me hemorrhoids. I barely drive anywhere beyond a four-block radius because it hurts too much. And, showering is so painful I can only manage it twice a week, max.

That’s not to say I haven’t had some victories along the way though.

So many times I have wanted to give up and just be dead already, but I’m still here. So many times I wanted to just down handfuls of pills to make the pain stop, but I didn’t. So many times I wanted to just stay down, but I got back up again.

Then there were the smaller things. Like surviving a week-long trip to Brazil, bonding with my family in a way that wasn’t possible before I moved in with them so they could help me cope with my pain, and discovering the Genie Bra, which doesn’t try to kill me like underwire bras do.

I’ve also found a new tea that gives me enough energy to counteract the overwhelming feeling of “wanting to do nothing” that comes with my medications. And, I’ve discovered the perfect dry shampoo for all those days I go without showering. Batiste is cheap, it really does get all the oil out of your roots, and it smells like a fresh shower mixed with body spray.

Don’t get me wrong though, the pain still sucks. Even when I do smell like a fresh shower mixed with body spray. It sucks so, so much. And I still want to get better — so, so much.

I’ve tried all the things people with rare illness are supposed to try when they get sick in America though, and nothing seems to work. I’ve been to a chiropractor, an acupuncturist, and even the Mayo Clinic. But the chiropractor was a quack, the acupuncturist was a swindler, and the Mayo Clinic just wanted me to pay $35,000 for a pay clinic that my insurance refused to cover.

I’m not exactly sure where that leaves me.

I Google things about rib pain like most people Google sports scores and the weather.

Sometimes I find things that sound legitimate, like a neurectomy, and sometimes I find stories about crazy people giving themselves coffee enemas and going off all their meds while they spiral further and further into horrific pain hoping it will be the magic formula they’ve been searching for.

But, in all those hours of Googling, I have yet to find a single person who has had intercostal neuralgia (what many doctors think I have) and gotten better.

And from there, it’s hard not to think that I’ll probably be in pain for the rest of my life. What does that look like? How will I survive that? How many more pain-niversaries will I have to shake my fist at the sky babbling on about how I haven’t given up yet?

A part of me hopes the answer is zero. I hope I never have another pain-niversary again. I hope that by this time next year, I’m completely cured.

But a wiser, more jaded part of me knows it’s probably a way higher number than I could have ever imagined. It’s the same wise, jaded part of me that also knows that I’ve got this.

I mean, I’ve made it this far haven’t I?

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