Tag Archive: rib pain

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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What it feels like to go off hydrocodone cold turkey (for me anyway)

Yesterday — partly because of my own stupidity and partly because the only pharmacy in Byron, Il closes at 7 p.m. — I had to go off hydrocodone cold turkey.

And it was hell.

I ran out on Wednesday evening and I immediately went over to the pharmacy to ask them to call in a refill. But, the doctor’s office was already closed. So they said they couldn’t refill it until the next day.

No big deal. I could make it through the night. And I didn’t want to make a big deal of it and come off like a crazy drug addict.

So, back home I went.

And normally going one night really wouldn’t be that bad, because I take a pretty strong drug to make me fall asleep every night.

But the thing is I had to go into the office the next day. On no pain drugs. And, because my office is two hours away, that meant I wouldn’t get home in time to pick up the prescription before the pharmacy closed for the night.

My mom ended up driving me into work because I have realized that the two-hour drive each way makes me suicidal.

Even with her help, going off the hydrocodone cold turkey was still enough to almost kill me.

When I got to work I headed right for the bathroom, because I had buckets of diarrhea shooting out of me.

My palms were sweating and my rib pain was intensifying.

I lived through that and went to a morning meeting.

After that, I had planned to go to lunch with my mom, but suddenly my boss decided she wanted to take our team out to lunch so all of a sudden I had to look professional for a two-hour business lunch while I was in opiate withdrawal.

I popped some Tylenol hoping they would help take the edge off.

After I got back from the lunch I told my editor that’d I be over to his office in a bit to talk after I finished up some work at my desk.

Then, I ran to the bathroom. More diarrhea.

I was so weak, and my muscles hurt so bad that I just sat on the toilet with my jeans around my ankles, leaned my head against the blue bathroom stall, and prayed to die.

I got myself together, pulled up my pants, washed my hands and made it back to my desk, where I laid on the floor, resting my head on my puffy pink coat, until I could find the will to stand up again.

When I finally walked over to my editor’s desk to talk about the newsletter, so much time had passed that he said, “Wow, you must have had a lot of work to do. I thought you might have left for the day.”

We chatted for a bit, and then I ran back to the bathroom. More diarrhea.

I wanted to go to the hospital so bad. My ribs hurt like hell. My body ached all over. And I just wanted to be dead.

I thought about laying on the floor by my desk in the fetal position and making my mom come up to the office to get me.

But I didn’t.

Instead, I gathered up all the strength inside me, and got my things together so I could go home for the day.

As I walked over to say goodbye to my boss, I thought maybe I had at least pulled off giving him the impression that everything was fine. But when I told him I was leaving, he said, “Wow, it looks like you barely made it through the day.”

I tried to sleep on the way home, while my mom drove, but I was in so much pain that I wouldn’t really call it sleeping. Needless to say we didn’t make it home in time to get to the stupid pharmacy before they closed at 7 p.m.

And so, I had a long night ahead of me.

I tried to go to sleep as soon as I walked in the door, but every single joint in my body hurt.

It felt like a knife was in my ribs, and pain was radiating through my bones. I kept having to run to the toilet because of the diarrhea, but there was nothing left inside of me to come out.

I prayed for relief.

I prayed with all my heart that God would let me die that night. That he would take my life. That I would finally get the true relief I’ve been seeking for months and I would get to go to heaven.

I begged God for this to end.

My ankles felt simultaneously swollen, sprained and twisted. It felt like I had full-on tendonitis in my wrists. My body felt broken — all over.

And I didn’t think I would make it through the night.

I tossed and turned all night.

I thought about suicide. I thought about how much I hate hydrocodone.

I thought that once it got out of my system I would never go back on it.

But even as I thought it, I immediately knew it was a lie.

I knew I would go back on it the very second I got a refill in the morning. I knew because while my whole body was attacking me, there were my right ribs, screeching at me, haunting me, reminding me that I needed the hydrocodone.

My amazing mom drove to the pharmacy this morning to get my refill, and when the new dosage kicked in, I finally felt like I could breathe again.

I don’t want to be on this stupid drug. I really, really don’t. I hate that half the doctors I see accuse me of being a drug addict. I hate the I have to constantly wonder if I am a drug addict.

But more than that, I hate living my life feeling like I’ve just been stabbed in the ribs.

Some people out there might choose to forego the hydrocodone so they could avoid being on an opiate. Some people out there might be strong enough to preserve through this horrible, horrible intercostal neuralgia pain without strong pain pills. And, some people out there might be able to live like that.

I am not one of those people.

Quality of life matters to me.

Having even a few hours a day when the pain is at a minimum is important to me. And if that means my body is physically dependent on a federally regulated opiate, then so be it.

All I can tell you is that the pain that stabs through my right ribs every single day of my life really is that bad.


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