Medicine pill and capsules in hand

When I Called My Local TV Station to Tell the Other Side of the Opioid Story

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I’m a chronic pain patient who uses opioids to control my condition. Like most chronic pain patients who use opioids, I have been affected by the CDC Guideline on Opioid Prescribing.

Physicians dramatically reduced my medicine, my condition worsened and I have had a very tough year.

But I’m coming out of it. And I’m ready to fight for us.

Now, my local TV station in Lansing, Michigan is running a series on the “opioid crisis” as many media members call it (because that was what government leaders have called it). The fact that it’s the month of May is a reason they are running it because the audience of the local U.S. news stations is being measured in what they call “the ratings.” Doing a story on opioid addiction makes sense because, let’s face it, it’s become big news in the last year.

Not being one to stand idly and let life go by (I was a firefighter so I’m wired for action) I called the TV station (WLNS) and shared with news executives there the story of the chronic pain patient.

To my surprise, they didn’t know much about it.

They saw only the addiction story — how could they miss it given the media’s fascination with it — but didn’t really see the collateral damage that is being done to millions of people who use opioids to control their chronic pain without becoming addicts. In fact, I told them, the addiction rate is very small. The other story is how patients have been dropped by their doctors because of fear — fear that the government would come calling, label them as drug dealing doctors and threaten their license. And patients are suffering.

The folks at WLNS, to their credit, are ready to tell my side of the story. I was interviewed this week and they are making an effort to find physicians and other chronic pain patients who will tell the story — our story.

I spoke with Ed Coghlan of the National Pain Report and he suggested I share this story because it’s an example of what one person can do to try and influence the discussion.

So here it is:

Contact your local media. We need to get our story out — not all chronic pain patients are addicts – in fact most aren’t. We use opioids not to get high but to manage our life.

Calling the news department (or your local newspaper) isn’t hard, once you decide that you want to. When you call them, don’t scream at them, just tell them “I have a story for you.” I remember from my days as a public information officer that will get their attention. The folks at WLNS were interested, respectful and curious.

When you talk with them or email them — be concise. Tell them there’s another side to the opioid story — and it involves thousands of their viewers and readers.

We will see plenty of stories during the May “sweeps” about opioid addiction. Don’t you think we should see more about what is happening to the millions of chronic pain patients?

I did.

And there will be a story on my local TV.

You can do it, too.

This blog was originally published on the National Pain Report.

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Thinkstock photo by sikhorn

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How Dungeons and Dragons Helps Me Through Tough Times With Illness

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I have fallen in love. He’s smart, he’s funny, he’s kind, he’s three feet tall. He’s not so good about knowing social norms and he has a habit of sticking his wand at his enemies gonads and threatening to blow them off with a magic missile. His name is Korrin Tealeaf and he’s a Level 12 Gnome Storm Sorcerer.

I’ve been spending my Friday nights playing him with my online Dungeons and Dragons group for a few months now. It’s the most alive I have felt in almost seven years and the little guy has definitely kept me from wanting to die over the last three weeks.

 

Just about seven years ago I was diagnosed with the first of now nine chronic illnesses. Every day I deal with pain, fatigue, nausea, blurry vision, headaches and a mile-long scroll of symptoms. I try everything I can to distract myself: reading, time on the internet, video games… I even tried to teach myself to knit before carpal tunnel syndrome and arthritis killed that idea.

I don’t get out of the house much these days but I really missed the old Second Edition D&D nights with my friends. I had also found information on the Fifth Edition and was really eager to give it a try. But I knew I just did not have the energy to go to a regular DND night at My Local Friendly Game Store. Most days, just taking a shower uses up all the energy I have. So what was I to do?

Then I found it. Roll20.com. Blessed Roll20. I could play from home without expending any energy on just “getting ready” and driving anywhere. It was pretty much a miracle from my point of view. So I went on the hunt for a campaign that looked like fun and also decided to sell some of my old DVDs and books, rolled up some spare changed and bought a Fifth Edition Player’s Handbook.

I got lucky and found myself a damn good group too. They’re fun, smart and experienced players. Surprisingly, they seem to like me too. Or they at least like Korrin.

Every Friday, I’m so excited to play and for those four hours, I honestly feel less pain, less symptoms altogether really (though that damn fatigue! It’s a real bitch!) and I actually have fun. Real fun. It’s more enjoyment than I’ve had in the past seven years. I can almost forget I’m chronically ill.

wyrmwood box from dungeons and dragons

It was especially important to me the previous three weeks when I wanted to die. See, one thing about being chronically ill is that eventually medications stop working and you have to try a new one. Sometimes those new medications are worse for you than the illness. That’s what happened to me. I had to slowly come off of Cymbalta, then slowly ramp up Nortriptyline. Well, that Nortriptyline, let me put it in DND terms:

Imagine you’re in combat. Your character has a spell put on him. In the first round, your character is very angry, in a rage, but can’t act, can’t function. Lose a turn. Next round comes, your character is sad, very, very sad, but still can’t act, can’t function. Lose a turn. That spell lasts for the entire combat. That would be a very frustrating game session, wouldn’t it? Now let’s bring it back to reality.

Imagine you feeling angry one moment, almost into a rage, then suddenly, violently, you wanted to cry, then, suddenly, violently, you wanted to rage again, then cry again. And that went on, nonstop, for three weeks. That’s what happened to me. Yes, I wanted to die. I could not live like that. Fortunately, I talked to my doctor and I was able to come off of it in five days and onto another med that worked out for me.

I still have to live with these chronic illnesses and all the symptoms they bring and I’ll do my best to keep going and I’ll have my bad days, ya know?

But those Friday nights, man, when I can be in Korrin’s head and not my own? They are the best. Even if I am off a little? I will be OK. I have Korrin. I have my fellow adventurers. I can magic missile some bad guy’s gonads off.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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Your Wife Has Chronic Pain? Here's How You Can Support Her.

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Recently, I noticed that when stories get published on The Mighty pages, there are comments that we, as authors, can see. In response to an essay I wrote about things I don’t admit on my bad days, someone left a response that I hadn’t previously thought about. Basically, I was asked what can someone do to support a person dealing with chronic pain. Seriously. And in thinking about it, I realized it’s something I’ve never been asked before. After 21 years of being chronically ill within a marriage, what I came up with surprised even me.

1. Give me space. I know that doesn’t sound helpful, but sometimes it’s exactly what I need. This disease is relentless. And it’s progressive., which means that every time I think I come to terms with it and how I am feeling, it changes and I have new stuff to deal with. It makes me angry and it makes me cry and sometimes I don’t even know how to help myself at times, so I definitely don’t know how you can help.

2. Give me a hug. A hug can go a long way. You see, I get that you want to help me and I get that you don’t want to see me in pain. Hell, I see the pain in your eyes when you look at me this way. All I want to do is make it go away, and I can’t, so how can you? We both know words don’t help when I’m like this. But, a gentle hug says so much more than any words ever could.

3. Get the kid on board. OK. So this is a tough one, if not impossible, but I’m going to say it. Many of us who are chronically ill are women, so I am addressing this as a mom. I just physically cannot do the stuff I used to. Some days, just vacuuming is an issue. Any day you can get the kids out of my hair is a blessing. Be creative and make up quiet games, get them to help make dinner, or clean up. And ladies – don’t expect perfection if your guy is helping out here. There is none in the world of children or chronic pain. He’s trying.

4. Help me find my bliss. Going philosophical here, but it’s not as highbrow as it seems. Just talk to me about my pain. Talk to me about what I need in reference to my pain. The sweetest thing my husband ever did for me was to purchase a personal TENS unit to help relax my muscles. I love it! (That, and the nightly back rubs when I was overexerting myself caring for my mom.) Find out what works and buy it, do it, commit to it. It’s hard and disappointing when I’m alone in trying to make a change that I know will help reduce my pain.

5. Talk with me. Ask me how I’m doing. And listen to my answer. Then ask me how I’m really doing because you know I lied to you when I said I’m OK the first time. I know you’re tired too. And I know you work hard. You may be the only one actually holding down a job. I don’t want to add to your stress. Talking with me lets me know you want to know what I’m going through even though you can’t fix it. And also know I don’t expect answers. Maybe just a hug.

6. Appreciate me. Understand that the things I mentioned in the beginning are always true. And it affects me mentally. I feel like a burden more than you will ever know. Becoming chronically ill, autoimmune, disabled, a pain patient, or all of the above while in a loving relationship changes everything. I know it’s not what you signed on for, no matter what you say. Those little romantic gestures other women are so nonchalant about can change my whole week.

But the most important advice I can give is to go with your gut! Go with Love. It always works.

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Thinkstock Image By: tommaso79

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To the Man Who Wasn’t Supposed to Be My Carer

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To the man who wasn’t suppose to be my carer. You care for a living. You look after people, you bring them happiness and communication in a life that may seem very dark and quiet.

My love, it was never my intention that you would then come home and continue your work.

I never intended for you to be my carer. The one that takes me to hospital, that handles my appointments, that calls doctors and keeps up with my prescriptions and medicine. The one that rubs my back and brings me hot water bottles and comfort food.

I never intended for you to save my life, and protect it on so many levels. I see the fear in your eyes when you leave the house while I’m in a bad way. The way you hold me tighter when I tell you the voices have been harsher than usual. The way you hold your breath a little when I tell you I feel like a seizure is coming.

sophie in hospital bed with boyfriend next to her

You are one of-a-kind, my darling. You deal with every obstacle life has thrown at you, including my health. And you still stare into my eyes and tell me you love me every single day. You still hold my hand while I have cannulas placed at hospital. You still wipe my tears when my seizures become overwhelming and scary. You still make plans for our future life even though you know as well as I do we can’t progress much further until I make a recovery.

You weren’t suppose to be my carer. Yet here you are, by my side, making me smile and making me laugh when all seems dark.

I haven’t got much to give, I haven’t got a lot of money to support you with, I demand a lot from you. But the one thing I can give you is priceless. It’s something no one else can have, nor can it be bought with any amount of money.

I give you my heart. My trust. My word. My honesty. My life.

I give you myself. The half that needed you to make me whole.

This chronic pain journey has been a rough one. But if it’s given me anything, it’s you. Without my pain I wouldn’t have met you.

So thank you, chronic pain, for allowing me to meet the man I needed to make all of this agony worth it.

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The Frustrations of 'Not Working Properly' Due to Chronic Pain

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The pain…it is all relative. Some days I can handle it better than others, but it is my constant companion. I must continuously remind myself to breathe and relax my shoulders so they are not at my ears all day. And as usual, I hide behind my smile. Those who do not know me see a shining happy spirit. If they catch a grimace cross my face, a brief glimpse behind my mask, they ask me what is wrong. I have no clue to what they are referring to and I reply “nothing.” Because to me it is nothing but the usual torments.

This constant yoke of pain wears on me and there is never a time when I am not tired. I may have just awoken from eight hours of sleep, but I feel like I haven’t slept in days. My sleep is not a rejuvenating sleep and I often hurt worse in the morning than when I laid down the night before. Every morning I have to will my body to move. Once I start to move it is like dragging broken limbs through the mud – painful and slow. To say I am not a morning person is an understatement.

You try to speak to me, but I do not respond right away. Forgive me, but my mind is racing to decipher each word spoken, pulling them out of the jumbled mess I hear and placing them in their proper context. Before I can think through my own response it stumbles out the door of my mouth. Was that the right word? No, I don’t think that is the word I meant. Dang autocorrect. I think I need a new app – hopefully you can decipher what I meant.

Where is my oil can? My joints all pop and creak when I move, like a bowl of rice krispies in milk. I have the body of a tin man and a brain of a scarecrow. But I continue on and face each day like the fiercest of lions. I dream of one day finding my ruby slippers to go back to a body that doesn’t rebel so. A girl can dream.

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Thinkstock photo via ChesiireCat.

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Please Stop Judging Me for Taking Pain Medication

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I truly wish more people understood this about chronic illness:

We are not drug seekers.

We’re not after pain killers – we’re after a treatment that will reduce pain.

That’s a big difference.

Many (if not most) of us have a serious love/hate relationship with our medications…even the ones that work for us. Possibly especially the ones that work for us.

The thing is, many of the meds we take have side effects.

I know, everything has a side effect. Something making you feel better is a side effect, if you want to get technical. I’m talking about things that, even as they help us, make us uncomfortable and actually sometimes as unable to function as we were before taking them.

Weight gain. Weight loss (yes, that can be a negative). Loss of sex drive. Hair loss. It stops the attack or pain, but knocks you out or leaves you in a fog. Impairs your mental or cognitive function – memory, ability to concentrate, etc.

And guys, I’m 100 percent serious when I say sometimes these are only the mildly annoying side effects.

I’m not even counting the, “Oh my God, what is this doing to my body in the long run?” concerns. I’m also not counting the fact that they don’t always work 100 percent – or at all, there is no one magic treatment or doctor that will give us our lives back, or that many treatments are expensive or limited by insurance.

You’re probably thinking if something has an unpleasant side effect, what’s the big deal? Just stop taking it.

And there’s the rub.

Because when you’re sick every day, you learn that you have to weigh the evils sometimes.

“Am I willing to deal with ___ so I can not hurt today?”

“Am I willing to deal with pain, etc., so I don’t have to take this one?”

“Can I function through the day if I don’t take this?”

And the big one: “Is feeling better worth this?”

Sometimes it is…and sometimes it isn’t.

Sometimes I skip meds so I can function, and sometimes I can’t function without them.

I can be both thrilled to have them and loathe them at the same time, and I’m not alone.

We are legion…and we’re tired of getting the side-eye and judgments that come along with living with disorders that we didn’t ask for. Why should we be treated as if we’re wrong to want to feel better for a while?

Wouldn’t any of you do the same?

Hard question to answer.

Most of us are still trying to answer it every day.

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Thinkstock Image By: Jupiterimages

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