Tag Archive: intercostal neuralgia

Surviving the Hurricane of Chronic Pain

I have recently started feeling better these last few months — a string of good days, I like to say — and it’s given me a chance to catch my breath and reflect on some of the crap I’ve endured over the last couple years.

For me, waking up one day with stabbing rib pain was like swimming along the river of life, only to be picked up by a hurricane, hurled back about 100 miles, and left to fight the raging current in water that was barely above freezing.

And yeah, it made about as much as sense as a hurricane in a river.

It was like everything I had accomplished had been taken from me, and instead of swimming forward, or swimming at all, I was literally gasping for air, about to drown every single day.

And people would come along and say, “Oh, I’ll pray for you!” And I’d be like, “Umm, I’m literally drowning! And there’s a hurricane! In a river! HELP ME!”

And they would say, “Well, if you really want to survive, you’ll give up gluten.” And I’d be like, “Umm, I just need a life raft! Giving up gluten isn’t going to help me!”

And they would say, “Well, if you were a horse, we would have let you drown by now.” And then they would laugh. And I’d be in the river, trying to survive the winds and waves and the rain.

And then someone with the best of intentions would come up to me and say, “Well, everything happens for a reason. I’m sure there’s some larger reason why you’re drowning.” And then they would walk away. On the land.

I spent almost six months on the verge of drowning. And eventually I just got so tired that I wanted nothing more than to close my eyes, fall back into the water, and let it all go. Let the pain go. Let the depression go. Let the daily battle to stay above water, go.

I spent every day wanting to let go. Planning ways to let go. Convincing myself that if my family really loved me, they would just let me go.

I also started stripping away everything I could so that I could stay above water. I got rid of my part-time job as a church youth leader. I threw my independence over board and moved in with my mom. And eventually, heartbreakingly, I even let go of my boyfriend’s hand. I let it all slip away so I could focus all of my energy, every day, on breathing in air instead of filling my lungs with water.

And I tried to see every doctor I could find, looking for a lifeguard. But they would say things like, “Well, you don’t look like you’re drowning.” Or, “Well, I mean, you’re drowning. But we can’t see the hurricane, so there’s not really anything we can do about it.” Or, “I mean, it’s not like you’ve been hit with a nuclear bomb. People who get hit with nuclear bombs are the ones who are really suffering.”

And then, finally, a rescuer came along. We will call him, Dr. M, for Miracle. I literally tear up when I think about meeting Dr. M.

He couldn’t see the hurricane either, but he believed me when I said there was one. And he understood the one thing I needed more than anything was a life raft. So he threw me one. Dr. M put me on a large dose of opioids, and it was the best thing that could have ever happened to me. It was like someone calmed the winds and the storm started dying down. The water finally got still for the first time in a long time.

He was the first doctor to actually take my pain seriously. I imagine that he’s either had chronic pain himself, or loves someone who had it because that’s the only way I can explain how compassionate he was — how amazing he was about believing that I was truly drowning.

It’s true that the best thing you can say to someone who is sick is, “I believe you.”

It was because of Dr. M that I finally got on a drug regimen that allowed me to float in the water every once in a while and rest my arms. To let the life raft do some of the work. And when I told him that the medication wasn’t lasting me all month — that, near the end of the 30 days, I was starting to drown again — he believed me, and gave me enough to get through all four weeks.

But even with the drugs, the only thing I could really do was float. I couldn’t swim forward or even get to shore. I just stayed still, trying to survive all the times the winds picked up, or the water got below freezing, or the waves got too big. I did my best to endure the side effects from the medication, the pain flares, and the ER visits.

There’s a saying, “You’ve got what it takes, but it will take everything you’ve got.” And surviving this has taken everything I ever had in my soul.

For the last two years though, I’ve just been happy to still be alive. Happy that I had a life raft and some calmer waters. I started planning how to live my life where I was. It was 100 miles behind where I’d been, but I started to realize that the trees in that area were actually kind of pretty. And that there were some other people floating around that I would have never met if there had never been a hurricane. I started to think that perhaps I could set up a life there.

But then, something happened. Something I never thought would ever happen, actually happened. I started swimming forward again.

I had tried every day that I could to swim forward, only to be pushed back. I would wake up and try to shower, go for a walk, drive, or do anything that would help me go forward again. But every time, I ended being tossed right back to where I was — sometimes even further back.

One day though, I swam forward and I stayed there. And then the next day, I swam forward a little more, and I stayed there too. And then again, again and again.

I had started taking vitamin D, after realizing that I was tragically deficient in what should more accurately be referred to as hormone D. When I started getting my levels back up it was like I suddenly had the strength to move forward again. My whole body could swim again.

And for the first time in a long time, I experienced things I had almost forgotten existed. The perfect pleasure of going for a long walk on a crisp fall day. The heart-stopping independence of being able to get in car, drive myself to the mall, and do the one thing I used to love most of all — shop. The joy of being able to take a shower and immediately blow dry my hair without needing an hour-long break in between the two.

There were so many things that I couldn’t do because I couldn’t swim forward for so long. So many things I had to give up. Like folding my own towels in my own special way. And waking up to the sunrise and being happy to see the morning light without having to worry about the pull of fatigue from my medications.

And even, especially, turning over and laying on my right side. I had not laid on my right side in over two years.

So now, here I am, finally swimming forward again for the first time in a long time. For now, it feels like maybe the hurricane has finally passed. But I still wake up every day worried that there will be another storm. I worry that the winds will pick up and I’ll be hurled backward, and I won’t have a life raft and I’ll start to drown again.

But now, at least, I know that if that does happen, I have it in me to survive.

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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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Trying to be healthy when I’m sick

I’m trying to find ways to be healthy despite the fact that I constantly feel like I’m dying.

Having chronic pain is like waking up every single day feeling like you’ve just been mugged, then hit by a semi-truck, and simultaneously come into contact with the plague.

And when it first hits you, you’re like, “I can’t be expected to function under these conditions. Nobody could function under these conditions. I must call in sick to life.”

But after a month of laying on the couch watching every episode of Burn Notice three times, you suddenly realize you’re probably not going to be getting better any time soon, so maybe you should try to, you know, shower or something.

That’s where the drugs come in. And suddenly, you wake up one day and you’re literally taking six different medications before you even get out of bed in the morning. But hey! At least you’re getting out of bed.

And over the next few months or years or whatever it takes for you, you just sort of live in this drugged-up state of barely existing. It’s how I would imagine high school pot heads hope their life turns out, except without all the stupid stabbing pain in my ribs (or wherever yours may be). 

Aside from being high daily, you find all the shortcuts you can. For me, I ended up working from home. I moved in with my mom because doing my own laundry and washing my own dishes is literally too difficult. I shower once a week to save my energy. I shop online. And I never, ever, ever wear high heels. Ever! 

On one level, I’m just happy that I’m no longer in so much pain that I literally hope I don’t wake up alive in the morning. But on another, I don’t really like what I see when I look down the long, dark road that’s probably going to be my life for, what? Another 50? Or even 60 years if I’m terribly unlucky?

Which brings me to the yoga. Yes, it’s true. I have started doing yoga. I’m hoping this is the next stage in the chronic pain life cycle, which will be followed quickly by, “Find a cure, and live happily ever after.”

While I’m here though, barely living, I figure I might as well get really good at downward dog. I started with a 30-minute PM yoga session for beginners on DVD. The hardest part is when I had to take two deep breaths in a plank pose. And, guess what? It didn’t suck.

I mean, I can admit when I’m wrong. And I was totally wrong about yoga. I really, really thought that bending my body in new, crazy ways would only make things worse. It’s just the human intuition in me, saying, “You’re in pain, stop doing stuff.” But, with chronic pain, you have to learn to override that voice.

And so, I’ve even done the 30-minute AM session, and I didn’t even die from that either. Plus, I also found another DVD by the same soothing instructor that’s 51-mintues long, and I did that one too, all without any trips to the hospital or anything! I’m pretty excited about the whole situation.

After each session I feel really relaxed, and it seems like I’m going through fewer pain pills when I do the yoga as opposed to when I don’t.

I’ve also started drinking tea. Back in the day, when my body didn’t hate me, I used to say things like, “Tea is literally just dirty water. Ick.”  But now, I’m sicker and wiser — and I need to find ways to bring a sense of peace to my wounded body.

So, yeah, tea. It’s got to be better than Coke, right?

There’s a morning tea that seems to ward off the overwhelming feeling of being high that the meds give me. And then there’s a night tea that helps me poop — something I’ve really missed doing ever since my prescription pills took that seemingly natural bodily function away from me.

Truth be told, I am secretly hoping all these new changes will help me lose some of the 50 stupid pounds I’ve gained since getting sick. But if they even help me do more than shower or something, I’d be cool with that too.

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