Keeping Kids Safe from Medical Marijuana

By Ellen Lenox Smith, Columnist

Frequently, someone will mention to me that they want to medicate with cannabis but won’t even consider trying it due to their children living in the house.

I can certainly understand their concern, but feel there are still ways to administer the medication, get control of your pain and also keep your children safe.

What are the biggest concerns a parent has about using marijuana around children?

1. The danger of cannabis getting into the children’s hands.
2. The smell from smoking marijuana alerting children to what you have in the house.
3. The still lingering issues of society’s judgment of it

How can you comfortably still make use of cannabis with children in the house?

As with all medications kept at home, you always have to be alert for the safety of children. Cannabis is no different. For any medication, parents (and grandparents) should consider locking it up to keep it out of the wrong hands. 

To still be able to enjoy the benefits of marijuana, but without the smell, there are ways to administer it that are just as successful as smoking. Many wrongly assume that is the only way you can use it. 

I only take cannabis as an oil. It is kept in a medicine bottle, measured out nightly and mixed with some applesauce. This is not something that children are attracted to. I always make sure it is a secure spot. I sleep through most nights and generally during the day never need to take any other forms of the cannabis, since it continues to offer me benefits from the nightly teaspoon.

Another effective option is to use it topically. The results are soothing and have shown tremendous relief, even for those suffering with Complex Regional Pain Syndrome (CRPS). We make ours with a peppermint oil extract added to mask the smell. The peppermint also helps  open the pores in the skin to allow for absorption.

Tinctures containing cannabis can be made in either a glycerin or alcohol base. They can be stored in a medicine bottle and used as frequently as needed. One simple teaspoon in the cheek or under the tongue allows for absorption and pain relief. You can also take cannabis as a pill or suppository, and many have learned to make it as a drink or steeped as a tea. 

For more on the different ways to use cannabis, see my column: “How to Use Medical Marijuana Without Smoking.”

Finally, as far as societal judgement goes, as your children grow older, it doesn’t hurt to be honest with them about the benefits you have found from using cannabis to improve the quality of your life.  It is no different than any illness you are coping with where there is a need to medicate. As time progresses, this conversation will get easier as society embraces this safe alternative.

If you are one of those people who is putting the benefits of medical cannabis on hold because of your children, you might want to reconsider your options and allow yourself the relief you need. Remember, unless you take too much, you do not experience the high that people associate with marijuana. A body in pain does not react to marijuana like a body using it socially. You get pain relief and the others get the high.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Why You Should See a Psychologist

By Crystal Lindell, Columnist

The weirdest part about getting psychiatric help is that people notice it.

They notice it in the same way they notice when you lose weight, or dye your hair blue. Like the IT guy at work, who says you just seem more confident lately. Or the friend’s husband who says you seem happier these days. Or the old Tinder guy who finds you on Facebook to comment that you seem so different, so much happier — and even your eyes seem brighter somehow.

I didn’t expect that. When I was in the thick of it, in the blackest night, I didn’t think anyone really noticed how bad it was. I don’t think I even noticed how bad it was. But if they’re noticing that things are better, then it’s probably safe to assume that they noticed how bad it was.

The fact is, getting psychiatric help in this country is depressingly difficult. The first time I sought help three years ago, I had just gotten sick and the pain was so horrific that I had been planning on slitting my wrists in the bathtub.

I finally worked up the courage to tell my primary care doctor that I was suicidal. He referred me to a psychologist who he said worked with people in pain.

But the psychologist refused to see me because she only worked with cancer patients in pain. I apparently wasn’t sick enough for her. So she referred me to someone else, and then weeks later I finally got in for an appointment.

To recap: I literally had a plan to kill myself, and it took weeks for me to find any help.

I’m a well-educated white woman with health insurance. If it’s this hard for me, what are other people going through?

Luckily, the doctor I got paired up with was great and helpful and sometimes a little mean, but always very good at helping me figure out how to deal with all the pain I was suddenly enduring.

The sessions weren’t so much about her telling me what to do, but how to do it. For example, we both agreed that I couldn’t work when the pain was 10/10, but instead of letting it get that bad and then ending up hysterically crying in my boss’ office begging to leave, we came up with a different plan. At the beginning of the week, talk to my boss and agree on days I could work from home. This way there was a plan everyone could feel secure with, and my pain wouldn’t reach 10/10 in the first place.

It seems like little things, but when you find yourself sick, it’s like you’re in a new country and having any sort of map can be extremely helpful.

Even if someone can get an appointment with a psychologist though, AND their insurance will cover it, there’s still another hurdle. A lot of psychologists suck. Just like a lot of doctors suck. And a lot of mechanics suck. And a lot of restaurants suck.

I hear all the time from people who say things like, “I don’t even bother seeing a psychologist, because they aren’t any good anyway. They don’t get me. They don’t help. They just want to get me in and out.”

But people don’t just stop going to restaurants because the Mexican place in town gave them food poisoning. And they shouldn’t just give up on therapy because they had some bad experiences.

Of course, even if you get past all that, there’s still the stigma. There is this idea that if you’re getting mental health help that you’re somehow weak. But getting your brain healthy doesn’t make you weak. It makes you strong. Life doesn’t come with an instruction manual, but getting a neutral opinion from an outside party is almost as good.

These days I see a team, a psychiatrist and a psychologist. The psychiatrist works with me on medical options, while the psychologist offers cognitive therapy to help me navigate my life.

And, honestly, my biggest regret is that I didn’t get help for my anxiety sooner. After going through opioid withdrawal over the last year, I’ve realized that I had been struggling with anxiety since at least my teen years.

It was as if all the pain meds I was on masked it just long enough to show me that there was, in fact, a better way to live. That there existed a possibility for a life that didn’t include waking up literally everyday feeling sick to my stomach, with anxiety attacks on the bathroom floor at work, and obsessing over every little thing.

I confess I was extremely resistant to the idea of going on a long-term anxiety medication, but I’m so glad that I worked with my doctor to find one that works on my brain. And aside from easily bruising, the side effects have been very minimal.

People don’t talk enough about the mind-body connection, but it’s there. And when you’re in pain or dealing with something like opioid withdrawal, getting mental health care may not be the first thing people seek. But it turns out, getting your brain healthy is just as important as getting your body healthy.

In the end, the question that psychology asks is simple: Can people actually change? I have to believe the answer is just as simple: Yes.

And if people can change, maybe the world can too.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

The Importance of Participating in Pain Research

By Barby Ingle, Columnist

Over the years I have participated in many research studies and potential new treatments. One such study was just published in the Journal of Translational Medicine by Drs. Garabed G. Demerjian, Andre Barkhordarian and Francesco Chiappelli.

So many people over the years meet me and soon realize that I have a device called an oral orthotic in my mouth. This “OO” as I lovingly call it has helped me so much, and now there is published research behind what it is doing for me.

Back in 2002 when I developed Reflex Sympathetic Dystrophy, I lost partial vision in my right eye. I saw many eye doctors and ENT (ear, nose and throat) specialists who were unable to pinpoint where the breakdown in the nerves were. They hypothesized that it was due to inflammation from the RSD cutting off a nerve pathway.

Within 30 seconds of putting in the OO, I had my vision back after 10 years of being told that I would never see properly again. My world is now brighter with the OO, literally.

I also had improvement in pain levels affecting my entire body. I have been able to get my infusion therapy minimized to only 1 or 2 boosters a year and get off all daily pain medication. I also have had improvement in my balance, coordination, dystonia, memory and mood. My migraines and headaches are less frequent, and although weather and pressure changes still affect me, it is not to the extent it was prior to my oral orthotic use.

The research doctors and my treating doctor, Garabed Demerjian, approached their study with an individualized approach that they made measurable for each patient who participated. I underwent multiple MRIs, cat-scans, X-rays, synovial fluid testing, psychological testing, and saliva testing.

These tests were done in an effort to quantify the outcome and show the effectiveness of the oral orthotic. I participated in the study in 2015, about three years after getting my OO. I already knew that the tests were going to show amazing results. That is great for the scientific community and for advancing new treatment options.

Traditional research in the health sciences usually involves control and experimental groups of patients, and descriptive and statistical measurements obtained from samples in each group. The research I was part of used a novel model known as translational medicine, which "translates" research into more effective healthcare -- a "bench-to-bedside" approach. This type of research is increasingly becoming more established in modern contemporary medicine.

I often say that each patient is different. Our biological makeup and life experiences mean disease often affects us in different ways – making a one-size-fits-all approach to medicine impractical. Science is seeing this too. It’s becoming more focused on translational research for the ultimate benefit of each individual patient. This is what we need.

I know and understand that being part of a research study is not for everyone. It doesn’t always go as great as it did for me. But stepping up and trying something that can benefit others is very rewarding.

I thank all of the research doctors and scientists who are making a difference in our lives. It can take years of research before they see actual results, and they are not always recognized for their efforts. I find it hard to express the full gratitude they deserve. Thank you to our researchers in the chronic pain community.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found on her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Don’t Take Away My Right to Kratom

By Jennifer Sage, Guest columnist

I'm on Day 5 of a withdrawal from all of my pain and anxiety meds at the moment this is written.

I just took my morning kratom about 30 minutes ago, assisted to the kitchen with my cane, and right now I can not only walk without the cane, but have zero effects of withdrawal. A very slight headache in the first few days, on and off, but that's it.

I would like to mention I'm 35, a multiple sclerosis sufferer, and a prescribed pain med patient for 7 years. I took off my fentanyl patch on Day 1. Haven't touched a hydrocodone since Day 1. Haven't taken anything other than a tapering dose of clonazepam every other day due to the deathly dangers of stopping that cold turkey.

This plant is a miracle. I've gone through the worst of withdrawals from meds that I couldn't function on to a happy, peaceful, pain-free existence without the use of any of them.

I'm a single mom, an author of 7 published novels, a finance industry employee, and I suffered immensely every day, some days even with the meds. I have wonderful doctors and I don't believe the healthcare system has let me down because they were doing all they could to keep me as productive as possible.

I took nearly a year off work 2 years ago because the MS was unmanageable. I only wish I had known about kratom sooner.

Am I going to be a felon now because I can't live in pain and I refuse to go back to that madness of life that kept me sick instead of healing me? A felon for taking a leaf that Mother Earth provided to do this very thing?

I understand the need for regulation. Put an age limit on it. Get the junk out of the smoke shops that real users of kratom don’t use. Go into the forums and you'll see that true users of this plant are buying high quality powders that we mix in water or juice and take it like we would our very dangerous pills.

JENNIFER SAGE

My 10-year old daughter just got her mom back. If you need her testimony of what life was like before kratom and after, I'm sure she would be happy to share with you. Kratom doesn't get you high. It's self-regulating. If you take too much (which I haven't, but I hear it can happen), you just get nauseous.

I've had days where I took 80-100 mg of hydrocodone on top of my fentanyl patch and was still in bed crying. I wanted to take 100 mg more just to stop hurting. But THAT would've killed me.

They've urged me to go on oxycodone and other more powerful drugs, but I get deathly ill when I take them. This is my choice. This plant that has no abuse potential, NONE, has in 5 days changed my life.

I will always be dependent on something to ease my pain. I choose kratom to be dependent on so that I can live my days without pain, and without the fog and stress of consistently wondering when my next meds can be taken. I would give my daughter this herb over the toxic pills for children once there's more research. There are no negative effects, but there are thousands of positive ones.

DEA, your war on drugs is with the meth labs and heroin that riddle our streets. Maybe if so much manpower wasn't being spent on this peaceful, harmless plant, a 10-year old girl in New Mexico would still be alive. Meth killed her and her mother. And you're going to put kratom in the same category?

It is our right to have a voice in this country, and you are trying to take ours away. Listen to the stories. We aren't trying to get high. We're trying to live our lives.

Jennifer Sage is an internationally acclaimed fantasy romance author, mother, advocate for healthy living, active hiker and, more recently, a user of kratom. Jennifer’s most recent book is The Last Valkyrie. You can learn more about her by clicking here.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Pain Companion: The Stories We Tell Ourselves

By Sarah Anne Shockley, Columnist

Coming to grips with the fact that we’re living in chronic pain can be incredibly challenging and distressing. To help us get through, we tell ourselves stories – reasons, excuses and rationales – to cope with and explain a difficult situation.

That isn’t necessarily a bad thing. But sometimes we get stuck in a particular story which may impede us from getting to the next step or level in healing. Getting stuck in a story can make us think there isn’t really a next anything.

I’ll describe a few of the common stories, not to make anyone feel bad, but to remind us  that there are a variety of ways we can hold our situation in our minds and our emotions, and that some stories may be more useful than others. By knowing there are different perspectives, maybe we will be less apt to get stuck in any one of them.

It’s Only a Flesh Wound

This is often the first story we tell ourselves, sometimes even when we’re in pretty dire straits. It’s extremely hard to accept a severe illness or injury as a reality, and we may feel that if we let that truth in, it’s letting the pain win.

But we can’t stay in denial forever if we want to move on in life. We have to face our situation head on, even if it means accepting the fact that moving forward means we are moving forward with pain for a time. Maybe a long time.

Keep My Seat, I’ll Be Right Back

This is another flavor of denial that we often adopt once we’ve accepted that we’re dealing with more than a flesh wound. We tell ourselves that it may look bad, but it will be over soon. Not a terrible thing to believe, if it helps us get through the day.

On the other hand, if we sit in this story overly long, we may be avoiding some things we really need to deal with: That life has changed, that we need to make some accommodations, and that we may have to look at how pain is affecting our work life and relationships.

We may also be ignoring medical or alternative approaches that could really help us. We’re choosing the story that we’re not going to be doing this for long, so why initiate a long-term pain management protocol?

The Answer is Just Around the Corner

This story is about the belief that there is one miracle cure to find and then everything will be all right. There may be, but when we tell ourselves this tale, we could be missing out on all the little, but important things we can do right now to increase our well-being: like resting, drinking a lot of water, eating healthfully, laughing more, staying as stress free as possible, and staying connected with friends.

There is No Answer

This is the story we tell ourselves when we’re discouraged. When we don’t find an answer after months and years of searching, we might decide that there really isn’t any answer at all for us, and that we are lost in our pain forever.

We might then conclude that we just have to live with the pain in a state of resignation. We lose hope and stop moving toward answers and start to dig in for the long haul.

Pain is Bigger than Me

Another common tale is that pain is bigger than we are. It is so all encompassing, so demanding, and so ever-present that it can begin to feel like it has taken over our whole world.

Yes, it may be everywhere we go right now, but it is not the totality of who we are. Pain is an unpleasant experience we’re having, but it is within our experience of life, and it is not all of life or all of us. We need to be careful not to confuse ourselves with our pain, and to remember to find ways to experience pleasures and joys alongside of it wherever we can.

Sometimes the stories we tell ourselves are the only way to get up in the morning or to make it through the day. But sometimes the story is what’s keeping us stuck. I guess the question to ask is, how is my pain story serving me? Is there something I can change in it that will lead to a greater sense of hope, well-being and renewal? Then we can choose to create a different tale to tell ourselves.

Maybe it becomes the story of how healing isn’t some unknown point in the future, dependent upon one right answer, but what we do every day. It becomes the story of finding ourselves again when we thought we were lost, and the story of allowing our healing to take the time it needs while maintaining a balance between acceptance of our current limitations and positive action toward a less painful future.

It becomes a story that focuses more on where we’re headed than what’s wrong right now. And it’s a story we’re free to modify, enlarge or swap out for a new one as soon as it becomes outdated or restrictive.  

Sarah Anne Shockley suffers from Thoracic Outlet Syndrome, a painful condition that affects the nerves and arteries in the upper chest. Sarah is the author of The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain.

 Sarah also writes for her blog, The Pain Companion.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A Pained Life: Swim at Your Own Risk

By Carol Levy, Columnist

I swim at my local YMCA. A new pool just opened and there are no flags or indicators showing when a swimmer is close to the end of the pool.

I can only do a backstroke. Not knowing where the wall is can be dangerous. I had already hit my head once miscalculating where I thought the wall was.

“I wish they had something as a warning that we are close to the wall,” I said to Jennifer, one of the lifeguards.

“Well, don't swim on your back. Then you can see it yourself,” she replied.

“I would love to, but because of my neck situation I can't swim on my stomach,” I explained.

Jennifer responded strangely: “Wah, wah, wah.”

I looked at her in surprise. Usually she is sweet and kind.

“My neck is held together with 12 pins and 2 clamps,” I told her. “I can't swim on my stomach. The posture and head movements for breathing are impossible for me.”

“Wah, wah, wah.”

“Jennifer, my entire neck is held together with metal. That's all that holds it up,” I said, starting to feel angry and frustrated.

“Wah wah wah. Wait! What if you used a snorkel?”

Her suggestion ignored what I had said about why I couldn't swim on my stomach.

There is another reason I can’t use a snorkel: I have a phantom touch-induced discomfort in my face. But that was more then I wanted to explain. And the explanation would require more explanation to explain what I was trying to explain.

On the other hand, my facial paralysis is very visible. The left eyelid is almost always swollen. As soon as someone sees me they know something is wrong.

“I can't keep my head in the water,” I said. “My eye doctor told me I shouldn't even be in the pool.”

Jennifer's response was quick and easy: “Oh I'm sorry. I didn't realize. That definitely would be a bad idea.”

I was flabbergasted. She dismissed my neck issues even after I explained the situation. But I was astounded by how quickly she capitulated when I said my eye is the problem.

Oh, I get it. The eye she can see. It is not something she needs to understand. All that matters is that it is visible and obvious. My neck, on the other hand, is not.

The conversation with Jennifer was the perfect embodiment of the visibility/invisibility issue we all face. At what point do we decide it is not worth the explanation, the struggle to let ourselves and our truth be heard?

Too often I feel like my integrity is being questioned by two people.

The first person is the one who refuses to listen and accept.

The second person is me, because I am too often forced to lie.

I don't want to lie. I don't like to lie. I like to think my word is my bond. But, sometimes it is just easier to break that bond with yourself then struggle to explain and be heard.

Add one more pain to the list.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Why I Prefer Kratom Over Pharmaceutical Drugs

By William Johnson, Guest columnist

I've experienced much of what's wrong with our healthcare system and can think of only one possible solution people can do for themselves when it comes to pain management, which leads to another matter as well.

Kratom works well for pain and you don't need a prescription to buy this centuries old remedy from Southeast Asia. Did I say buy? Yes I did, which leads to the other matter. The Drug Enforcement Administration is currently in the process of classifying the leaf from this tree into a Schedule I drug, meaning no one will be able to prescribe it, much less buy it inside the United States.

At this very moment, thousands are telling and retelling their stories about kratom, trying to save it from the axe of the DEA; how it saved their lives or helped them stop taking pharmaceutical drugs that have horrible side effects, such as Xanax, OxyContin, Klonopin, Paxil and many others.

I was unaware of this plant until three months ago, when I first began taking kratom. I was fed up with pain clinics, tired of being treated like a criminal, and tired of waiting for hours each month just to have a prescription renewed.

I was also tired of the adverse side effects from long term opiate use. Those include, but are not limited to, depression, lack of motivation, liver damage, and severe constipation. Sound familiar to anyone?

I've made some other discoveries along the way as well. My recent annual blood work to test liver function returned to normal for the first time in over a decade, after I contracted Hepatitis C at a dentist’s office.

william johnson

Not only that, while it relieved most of my pain from several conditions of the spine, ones I was told would require long term opiate use for the rest of my life, it also adequately treated the symptoms of Hepatitis C, like chronic fatigue, joint pain and a host of others common to those with this virus.

My doctor was amazed when he found out I was consuming kratom, a botanical he'd never heard of. He began to research it and concluded the same thing as I. Kratom is the most likely cause that my liver functions are normal. He's never seen this with any patient with such a high viral load, not to mention the Hepatitis-C, which also managed to give me stage three Cirrhosis.

Unheard of, you say? Needs more study, right?

Every kratom researcher to date has recommended more study on its potential benefits, but now the DEA comes along saying kratom presents an imminent danger to public health -- even though it cannot identify a single death associated with kratom use alone.

One of the points I'm hoping to make is that there are viable alternatives for pain sufferers that don't include dealing with the healthcare system. And because more patients are learning about kratom, costing the industry million upon millions of dollars, DEA has stepped in to ban kratom for its pharmaceutical buddies, using outright false information in the process.

For more on that, click here to see a letter to the DEA from the Center for Regulatory Effectiveness.

And if you haven’t already, sign the petition to the White House opposing the DEA action.

While we're not going to fix the influence money has on the healthcare industry in a day, a week or even years, one thing we can do is remove as much of our business from that industry as possible. If herbal remedies work as well or better, I strongly suggest we work to keep them legal. Western medicine doesn't have all the answers and it might serve the public interests if we begin to realize this.

William Johnson lives in Virginia. He is a retired urban planner, who advocates for organic farming and gardening.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

‘Hope Is True’ Primed to be Pain Community Anthem

By Barby Ingle, Columnist

Even the tiniest spark of hope can get someone through the toughest moments in life – whether the challenges are physical, emotional or spiritual. Sometimes, all it takes is a song to help us feel better about ourselves.

Chronic pain affects one in seven globally, so it’s bound to affect you or someone you know. We need a way to have the voice of pain patients be heard so society will better understand our challenges and provide better support. That’s why the International Pain Foundation (iPain) developed the Music Moves Awareness project.

This month we released a new song and music video to shed some light on the daily challenges faced by the pain community. “Hope Is True” was created in collaboration with some of the brightest talent in the entertainment industry, including Ryan Young, William J. Fuller, The Silhouettes, Lynne Waggoner-Patton, Who is Emileigh Productions, Alex Geringas and Intellectric Media.

All funds raised from iTunes and other outlets through sales of “Hope Is True” will benefit iPain programs and the pain community. iPain is dedicated to shining a light on chronic pain, funding research and helping patients get better access to pain care. As we move forward, iPain will be using music -- particularly this new song -- to educate the world about chronic pain issues and their social, cognitive, physical, emotional, and developmental impact.

The International Pain Foundation recently celebrated its tenth anniversary and the Music Moves Awareness program by hosting a premiere party for “Hope Is True” in downtown Los Angeles. Celebrities who came out in support included Christina Milian, Ally Hilfiger, Rachel Reenstra, After Romeo, Bret Lockett, Chris Caldovino, Gillian Larson, Billy Blanks Jr., Dre Davis, and many others.

It’s all about raising awareness. We have celebrities come to events like this to tweet about it and talk about it -- and then we turn the spotlight on patients and share their stories.

The Music Moves Awareness project is centered on empowering chronic pain patients to live the very best lives they can. We believe music has the power to make lives better and inspire those living with chronic pain to become engaged by being their own best advocate.

All of our educational events are free for the patients to attend. My dad started the foundation because it took three years to get a proper diagnosis for me. We figured if it happened to me, it’s probably happened to other people.

What started as a family project turned into a non-profit foundation. We’ve done pain expos, symposiums, and currently have a webinar series as a part of the Music Moves Awareness initiative. We also get the word out by distributing printed materials and recently launched our new magazine, iPain Living.

iPain supports the idea that chronic pain is a real and complex disease that exists either by itself or can be linked with other medical conditions. As a charity, we campaign for effective pain care through an array of treatment options, many of which are widely inaccessible. Chronic pain is an unrecognized public health crisis with devastating personal and economic impacts. Most importantly, we operate under the belief that allowing people to suffer with unmanaged pain is immoral and unethical.

Over the next 18 months, we’ll be releasing features about chronic pain patients, sharing their stories and putting the spotlight on them. Each patient has a different pain condition, different treatment options that they’re pursuing, and things that are going on in their lives. 

This will help the world learn more about chronic pain and give us all new hope. 

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found on her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Waiting for Santa in the ER

By Emily Ullrich, Columnist

Some of you may have noticed I’ve been silent for a while. I’ve been shirking my duties to the pain community because I am so fed up that it all seems futile.

I’ve been struggling with feelings of defeat and guilt at my unusual inability to muster the courage to continue. I have been deeply introspective and, for once, I’ve had no words for the profound emotional disenchantment that one experiences when they realize that most doctors really don’t care.

My mother tells the following story about me when I was a little girl, and it struck me that this feeling I have today is the same one I had when I realized there was no Santa Claus.

She says that I essentially disassembled the entire house of cards that kids are brought up believing in. She says I was lying in bed when I asked her if Santa was real. She attempted an explanation that Santa was the spirit of Christmas and that he wasn’t an actual person, but that his essence was within all of us. According to her, I went on to ask if there was an Easter bunny, a tooth fairy, or even a God.

A few years later, I left the sheltered life of Montessori school, where creativity was valued, analytical thinking promoted, and social interactions remained innocent. I entered public school in the midst of puberty. Despite my many futile attempts at preppy mall fashion, and rehearsed and repetitive social coolness, I could not blend in.

To my dismay, my quirky, outside-of-the-box thinking betrayed me daily. I became the weird, socially awkward, politically and culturally over-saturated smart girl, wearing the body of a 6-foot tall woman.  As a writer, these experiences have given me a unique lens through which to view life and are now the things I pride myself in.

As a chronically ill patient, I have been thrown right back into the post-traumatic stress of that time, my intellect and strong personality are not seen as behaviors of a good patient. I feel l have to be a fake to get the care that I need. I feel this sensation washing over me every time I have a doctor’s appointment, surgery, procedure or hospital stay.

I’ve written before about the inhumanity and cold, cruel treatment I have received more times than I care to remember. I am aware that there are doctors and nurses who do care and actually want to help, and I have been blessed more than a few times with having these amazing people as my caregivers.

But if I am truly honest, more often than not, these gems of humanity are not the ones we patients get.

I understand that they’re at work, doing a job, and they have to do more for us than the usual patient. Some are also jaded, uninformed, insensitive and, frankly, shouldn’t be in this line of work.

When a patient’s life, health, and attitude are psychologically and sometimes physically neglected, disrespected, and infused with negativity, it’s scarring. It plays over and over in your head. Although it’s really hard to control my temper and emotions in this situation, I do my best. It’s not natural for me. I am opinionated and strong-willed.

I’ve learned the hard way that when I act how I feel like acting, my care gets even worse. I always wonder what I could have or should have done differently to make the situation better.

I know that I am probably coming across as very negative, but there is one thing that I know about myself -- when I am at my worst, I am often at my best. What I mean is, I want to make others around me comfortable, and the more serious a situation is, the more I try to bring levity and positivity. I try to make people feel at ease, to laugh, and to know that I am grateful for their help. I make a point of being very polite to my caregivers, even when I’m frustrated with them, and I make a point to ask how their day is, even if they haven’t asked about mine. This leads me to my most recent hospital stay.

My Latest Trip to the ER

I went to the emergency room because my home healthcare nurse demanded it after noticing that my arm with a PICC catheter line was very red and inflamed. As usual, the ER doctor treated me like I was there for fun. Because waiting for 6 hours in a room full of sick people and being treated like crap is everybody's idea of a good time!

It turned out that I had pulmonary embolisms -- blood clots in my lungs -- a life-threatening condition which frequently causes stroke or heart attack. The doctor scolded me that I should "take this seriously," as though I got the clots from doing some sort of illicit behavior and was obviously careless about my health. I wonder if it ever occurred to him that maybe I was taking it seriously -- by going to the damned ER!

He then launched into a lecture about the evils of pain medications, and even alluded to the doctor’s oath to "first do no harm," insinuating that the doctor who prescribed my pain medicines (who happens to be the kindest, most compassionate and knowledgeable doctor I’ve ever had) was not helping me, but harming me.

He assessed all of this in two minutes of talking at me, not to me, and without any idea of the myriad health conditions I live with. Sick, and even sicker of dealing with this re-run of the C+ med student-come-doctor with a God complex, I mustered the energy to stand up for myself. I argued that this was probably not the best time for a discussion about changing or completely discontinuing my medications, seeing as I had pulmonary embolisms to worry about, and a pain doctor whose specialty it is to deal with that was not present.

God forbid, I had challenged his almighty ER doctor knowledge and here's where it got good.

He decided to un-diagnose my Reflex Sympathetic Dystrophy (RSD) -- an extremely painful and complicated condition I was finally diagnosed with after two years of surgery, doctors’ visits, and being told there was nothing wrong with me that a knee joint replacement and antidepressants wouldn’t fix.  

Then I spent three days in a hospital being run through a battery of tests and a whole team of doctors had agreed on my diagnosis of RSD.  It’s an illness that I take medications for, have physical therapy for, use a cane for, and which you can tell I have just by looking at my knee -- which he never did.

"You don't have RSD," he said. Based on what? Maybe the fact that I wasn't screaming and writhing in pain, as he thought I should be?  

"Did a neurologist diagnose you?" he asked. I explained that I spent days in the hospital having a battery of tests and a number of different specialists all agreed that I have RSD. Again, he asserted his disbelief, without ever looking at my knee!

Begrudgingly, he admitted me to the hospital, as though I intentionally manifested blood clots in my lungs just so I could hang out with his charming self. He also lectured me further about the gravity with which I should treat this situation.

I wonder since if he has ever thought about this interaction with me, and in any small way realized the hypocritical irony that his entire discussion was loaded with.  

I can't stop thinking about what happened. Or where Santa went to.

Emily Ullrich suffers from Complex Regional Pain Syndrome (CRPS), Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, endometriosis,  Interstitial Cystitis, migraines, fibromyalgia, osteoarthritis, anxiety, insomnia, bursitis, depression, multiple chemical sensitivity, and chronic pancreatitis

Emily is a writer, artist, filmmaker, and has even been an occasional stand-up comedian. She now focuses on patient advocacy for the International Pain Foundation, as she is able.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Don’t Let the Media and Medical Profession Fool You

By Richard Oberg, MD, Guest Columnist

Chronic pain patients, like my wife, myself and others with abominable mistreatment, continue to lose the care they need while nothing is being done to address the real issues.

Drug abuse is up, young people are dying and the main culprits aren't prescription drugs, but something much more difficult to control. Heroin and illicit fentanyl, major causes of the increasing deaths, are becoming more widely available and, unfortunately, both of them are opioids.

The media routinely spouts about these “opioid deaths” while implying that prescription pain medication is what caused healthy people to take these illegal drugs. Why? Because they say so, that's why.

As with the recent 60 Minutes nonsense, they embellish the death of some high school quarterback, have a room full of grieving parents who say they had no idea their kids were drug addicts, add the fear that this can happen to you, and we the patients get to bear the brunt of this misdirected insanity.

The CDC addictionologist lobby and other federal agencies seem to have hoodwinked everyone into blaming chronic pain patients for this national problem. This is obvious and evident from countless stories of patient abuse no one seems to want to hear. The word is “scapegoat” and not a single person in power is responsible for anything – only we the patients are.

The CDC, government agencies and, quite frankly, the majority of physicians are NOT well-intended on this issue. They created this patient crisis that could have been avoided.

Don't let the medical profession that I was a part of for nearly four decades fool you. Physician sub-specialty organizations now exist for the benefit of physicians, not patients, and are mostly about maintaining control and money. Had these organizations stood up to defend patients against the CDC, and the ridiculous addictionology cohort of psychiatrists and anesthesiologists grooming their financial turf, we wouldn't be here right now. But they didn't, and a majority of physicians say they actually support the guidelines.

Don't buy the “they made me do it” line. It is misdirected nonsense, just as eliminating the pain scale to prevent any accountability is. Physicians don’t like accountability.

Inevitably, doctors still willing to write prescriptions for pain meds will attract greater numbers of chronic pain patients – and become easy prey for the DEA or their physician colleagues who don’t approve. Some of these doctors will become outliers in medical associations whose members tell them to stop because they don’t want to see or treat patients like us.

Why doesn't anyone ask where all the patients of physician practices that are being shut down go to? It's because no one in power cares, that's why. And then there’s the sheer ignorance or bigotry of many physicians who profess to be “pain management experts.”

The American Medical Association (AMA) once represented 75% of all licensed physicians and supported the best care for patients. 

Today, membership in the AMA has declined to just 15-20% of physicians, as subspecialty organizations gained power and patient care became driven by those isolated subspecialties. 

These organizations support the flow of wealth to their specialties better than the AMA ever could.  With increasing specialization, patient care became highly fragmented for those with complex diseases, yet there was no attempt or incentive to coordinate care. It became every patient for himself.

It is extremely rare to non-existent for a physician specialist to actually speak to another physician about your care, nor is much if any time spent reading another doctor’s evaluations. It’s just not fiscally expedient with current healthcare models. That is why you’re “re-evaluated” by every new specialist you see and have to reprove your illness over and over, often to skeptical stares.

The major problem with this is that subspecialties often “evaluate” you beyond their competence. For example, a rheumatologist is vastly superior to a psychiatrist if you have an autoimmune disease, but if you’re depressed and miserable because of an undiagnosed autoimmune disease and enter the care of a psychiatrist, the odds of ever getting an appropriate diagnosis are nil. Worse, they can make your life hell.

It’s just not what they do -- they make you fit their model – not the other way around. Whenever you get into the care of some subspecialist unlikely to have any idea what’s wrong with you, it inevitably leads to biases against you because physicians are just as bigoted about what they don’t understand as anyone else.

The attitude of most that my wife and I have encountered (despite both of us being physicians) suggests that most subspecialists get their information from the nightly news rather than medical journals outside of their specialty. Neurosurgeons think opioids are bad because that’s what they’ve heard. And they’d rather believe that than have you tell them otherwise.

From our point of view, it’s would almost be comical if it wasn't so infuriating.

Often, chronic pain patients are not sick enough to warrant hospital care (following acute care protocols), yet are too ill to be seen by outpatient physicians who aren’t reimbursed enough to spend additional time figuring you out or interacting with your other physicians.

And there are plenty of “well patient” visits providing better income – so why bother?

If this sounds bad, it’s because it is. For those who like their anesthesiologist pain care person, good for you. Many of us aren’t so fortunate. And someday you might not be either.

I’m not sure how much worse this will get, with patients losing access to opioids or seeing their doses cut, while overdose death rates continue to rise -- refuting CDC wisdom. Taking meds from chronic pain patients isn’t going to fix a problem caused by healthy people with illegal intentions.

Maybe some powerful mainstream media source will actually ask someone in power what's going on and not settle for anything other than a straight answer. But I wouldn’t hold my breath.

Take the unfortunate demise of Prince and how it has been reported. Whenever someone with career-induced injuries attempts to defeat aging by taking illicit opioid pain medication to continue performing 20 year old moves on a 57-year old body, bad things will result. It shouldn’t be rocket science to figure that out, yet I don’t recall a single media source saying that.

Instead, Prince has become another idiotic reason legitimate patients shouldn’t get opioid pain care – all because he intentionally misused it to extend his career. Because of the actions of a few, the vast majority will suffer. Not exactly stellar for the most expensive healthcare system in the world, is it?

Richard Oberg, MD, is disabled by psoriatic arthritis and no longer practices medicine. Dr. Oberg receives no funding from pharmaceutical companies. 

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Miss Understood: A Mother’s Greatest Fear

By Arlene Grau, Columnist

As a mother your main goals are to raise your children to lead happy lives, to always love them, and to keep them safe. I want to see my children excel and get a lot further in life than anything I've ever dreamed of.

Although I have many hopes and aspirations for my two daughters, my worst fear is always lingering in the back of my head.

What if I cursed one of my daughters with a genetic predisposition for an autoimmune disease? What if they develop arthritis or lupus? I could never forgive myself if I knew they were meant to endure the suffering I've lived through.

I would give anything if they would never have to worry about seeing a medical specialist, or needing infusions, blood draws and painkillers just to get by. They already see a pain sufferer’s life through a child’s point of view and that alone is very difficult to handle for a 5 and 9-year old. But burdening them with this lifestyle would be cruel in and of itself.

I'd like to think that I could handle any amount of pain you throw at me. I'll shed some tears and break down a bit, but I think of myself as a genuinely strong individual. However, if you involve my children, then all bets are off and I become vulnerable.

When my oldest daughter was born I suffered from preeclampsia (high blood pressure) and she was born prematurely. She weighed just 4.6 lbs. at birth and was in the neonatal intensive care unit for two weeks.

The day after I was discharged, I was back at her bedside from the time visiting hours began until it was time to go home. She ended up needing surgery at 8 weeks and it was the worst experience I've ever been through.

I can remember how much I wanted both my girls to come home from the hospital with me so I can just love and protect them. My desire for children was always about how much I wanted a family, but I never stopped to think about the possibility of passing down an autoimmune  disease. Now anytime my kids tell me their back or hands hurt, I subconsciously think that it might be arthritis.

I think I may always feel that way. Not only because I'm blaming myself for any pain they may be feeling, but because I know that these diseases do not discriminate against any age group.

Arlene Grau lives in southern California with her family. Arlene suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Make the Life that You Want

By Barby Ingle, Columnist

Lately I have been living my dreams, but at the same time realizing how much I have gone through over the years, especially the last two.

Before I got sick I was active, a go-getter, never quit and efficient. Nowadays, I am still as active as I can be, still setting goals and working towards accomplishing them, and trying to keep a positive attitude. But I am not efficient anymore. It’s a large change.

I find that many people who develop an autoimmune condition were overachievers prior to their illness. Did we run ourselves down? Did something in our past prevent us from healing? Or did we just draw the short straw of life?

At this point it doesn’t really matter to me. A life with chronic pain management is my reality. I didn’t do it so well in the beginning and looked for others to fix me. I didn’t take responsibility for creating my own oasis. It was too much just trying to get to the doctor’s office for appointments when not being able to drive.

It took a lot of years, but I got reorganized and also gave myself permission to not be perfect. I came to understand that I will be managing my chronic diseases until I pass away. I can still accomplish many things; it is just going to take me longer.

I was living my dream and it turned into a nightmare. Sound familiar? I began a battle of life and death literally and mentally. 

For those reading that are not familiar with my story, I have been battling chronic pain since 1997, first with endometriosis -- which resulted in a full hysterectomy and left oophorectomy.

Then in 2002, I developed Reflex Sympathetic Dystrophy (RSD), a progressive neuro-autoimmune condition that affects multiple systems in the body. Then came temporomandibular joint syndrome (TMJ), hypothyroidism, hypoglycemia, arthritis, gastroparesis and ischemia -- not to forget a loss of balance and coordination that seems to lead to falls and bone breaks. Because my immune system is weakened, if anyone around me is sick, I will soon be as well.  

I lost my physical abilities and was bed bound for years. I spent many years using a wheelchair just to get out of bed and leave the house. It took 3 years to get a proper diagnosis and another 4 years to get the proper treatment. I know firsthand how hard it is to continue looking for relief and answers; and then coming up against healthcare professionals who blow you off or do not believe what you are telling them.

I have learned the hard way that the healthcare system is not always what we are led to believe. I think that from childhood, we should be taught prevention, health responsibilities and health rights. With 1 in 3 Americans living with at least one disease that causes chronic pain, these are important life lessons. 

People look up to their doctors and put total faith in them. But it is important to remember that doctors study a particular practice of medicine. Just because they are a neurologist doesn’t mean they can treat diabetic neuropathy, multiple sclerosis, Lyme disease, or RSD. Each doctor gets a small variety of a medical field and finds a specialty that they love and work on with research and education.

Knowing this will help you get better healthcare. Don’t be afraid to ask questions about your doctor’s education and background. What is their specialty?

I know that there are far too many pain patients who experience something similar to my story. Although each of us is unique and living with our own variations of a chronic disease, having a shared knowledge of overcoming the challenges that we face can be helpful and encouraging.

I had to learn the hard way -- and now share my story to give hope and answers to patients, caregivers and healthcare professionals. I hope by speaking out about my journey it prevents it from happening to others. I enjoy hearing other patient’s stories as well, because it helps me see that I am not alone.

I have had many twists and turns through the medical system, and now encourage the importance of  positive thinking, standing up for ourselves, and improving our knowledge even in the worst of times. Let’s get back to dreaming about big, positive and happy lives.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found on her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A Pained Life: Pennsylvania’s Opioid Law Ignores Us

By Carol Levy, Columnist

Recently I received an email update from my state senator. He wanted to let me know about  efforts in the Pennsylvania legislature to address the "opiate crisis.”

I have written before that I believe some of what has been proposed throughout the country makes sense, a prescription monitoring database, for instance. Much of what is being considered in Pennsylvania also makes sense to me:

• Labels on opioid prescription bottles warning of their addictive nature
• Written consent from parents in order for their children to receive prescription opioids
• A safe opioid prescribing curriculum in Pennsylvania’s medical schools to better educate future doctors about proper opioid prescribing practices
• Insurance plans to provide access and share the cost of abuse-deterrent opioids
• Mandatory reporting of all heroin and opioid overdoses where naloxone was administered
• Implementation of opioid prescribing guidelines developed by a state task force
• Healthcare providers to discuss the risks of opioid addiction and overdose with patients and to receive written consent from a patient before prescribing them

But there are two provisions of the law I find very concerning, one being a requirement that coroners and medical examiners report the death of any person resulting from a drug overdose.

One of the issues surrounding the reporting of deaths arising from opioids is that other medical conditions, such as the use of alcohol or illegal drugs, are often ignored and the death is counted as an opioid overdose.

That is not only poor research, but gives a false picture of what is the effectual cause of the death. Ignoring those other factors means ignoring other issues that the law needs to be addressing.

The second issue I have with the law is alarming: limiting the prescription of opioids to seven days. This ignores chronic pain sufferers and the long-term need for opioid medication, which is often our only or last available treatment.

The change we saw, in many states, was requiring a visit to the doctor for a new prescription every 6 months to needing one every 3 months. That was bad enough.  I recall needing to go only once a year, but that was in the 1970's and 80's.

If you have trouble moving, tolerating the weather or other issues, being forced to go see the doctor every three months is an issue. In addition, co-pays rise, insurance companies pay more for extra visits and may raise your rates as a result, and the cost to the state and federal government through increased Medicaid/Medicare billing soars.

I decided to research this. I found that New York State has imposed a 7-day limit on prescriptions, but the law contains exceptions for those with chronic pain or who are receiving hospice or palliative care for life threatening illnesses. Unfortunately, Pennsylvania legislators have decided to ignore those in chronic pain. The bill includes exceptions only for hospice and patients receiving palliative care.

The government has acted as doctor in many other instances; such as women's health care, declaring some drugs illegal, and allowing certain medications and procedures while denying others. I understand that. There needs to be limitations and oversight.

But this is not oversight or limitation.  This is a frenzied and illogical response to an “epidemic” that is not caused or perpetuated by those of us with chronic pain, but is nevertheless being taken out on us.

Politicians who point at us and claim they are handling the crisis are ignoring the real culprits, which is those who abuse drugs illegally.

The question has to be asked. 

How in the world does this law address the opioid epidemic, as opposed to merely blaming and punishing those with chronic pain?

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Freedom: A Pain Patient’s Lost and Found

By Pat Akerberg, Columnist

Chronic pain takes away many things: our health, wealth, mobility, relationships and careers, to name a few. It’s not a stretch to consider our personal freedom as another major loss. 

Freedom is defined (according to Google) as the power to act, speak, or think as one wants without hindrance or restraint. And unrelenting pain is definitely a hindrance or restraint! 

Despite that harsh reality, there’s an implication that we still have some freedom of choice in how we react. But on those really bad days when it’s all a pain patient can do to get out of bed, the notions of freedom, choice, or power seem wholly non-applicable to us. 

Compared to being autonomous and independent, the setbacks or functional losses we experience threaten any determination or self rule we have left.  You would think that more than ever we’d err on the side of self care and triage. 

Instead, we can be unduly hard on ourselves.  Why?  We still desire to be productive in some way yet can’t be, causing guilt, frustration and even doubts about our purpose.

Even the NFL knows enough to sideline their injured players to PUP (physically unable to perform) status without shame or recrimination until they can function better.

To be kinder to ourselves, there’s an important freedom we can exercise.  We hold the power to choose how we look at freedom altogether. A more lenient twist would be to view it through the lens of the medically compromised.

That twist of perception provides us with 2 types of modified freedom.  One of them involves those things we are now “free from” and can do less of.  The other involves those that we are now “free to” do more of.   

Here are a few freedoms from certain things I have come to appreciate in my particular form of captivity with trigeminal neuralgia:

Type 1: Freedom From

• Attending obligatory, unappealing outings
• Taking all phone calls (talking is a huge pain trigger)
• Trying everything suggested as my cure-in-waiting
• Superficial small talk
• Grocery shopping, laundry, heavy cleaning or distance driving
• Strenuous physical exercise
• People who choose to judge my misfortune as an inferiority and their good fortune as superiority
• Unfulfilling, needy relationships
• Noisy, crowded places and boisterous people
• Educating people about my rare neurological condition, pain, etc.
• Being the initiator, mediator or helper at large

Here are some of my freedoms to. They’re permissions that I grant to myself:

Type 2: Freedom to

• Say no to outings, places, and activities that exact a painful price physically
• Avoid invasive treatments and lab rat experiments
• Express my views about the injustices surrounding inadequate pain care
• Avoid anything that demands my energy after 4 pm
• Not judge myself because mindfulness meditation, exercise, and other touted pain management strategies fell short for me
• Ask for what I need and want when help is offered
• Receive gratefully without guilt or the pressure to reciprocate if I can’t
• Cancel appointments/plans if I am unable to keep them
• Stay in my pajamas if I’m unable to do otherwise
• Practice comforting self-care: baths, massage, good books, TV binging, adult coloring books, sending note cards, and an occasional indulgent dessert
• Make an effort to look my best occasionally, even if it will work against me

It’s helpful to add to and review my list during my worst times to remind myself what freedoms I’m not missing or can give myself. 

Hopefully you’ll consider your particular Type 1 and Type 2 freedoms too and share some with us.  When we do that with each other, it expands our viewpoints and learning. 

After all, we’re each other’s “people,” the group we belong to now. And it takes our own to honestly understand the kind of work-a-rounds that we’re forced to come up with and the life quality compromises we endure.  We know how we can isolate or shield our loved ones when we’re plagued by fears, misgivings or unsettling worries.

I am telling both a lost and a found story about my modified version of freedom now.  It acknowledges that the freedoms I’ve lost have also given way to some new found gains. It’s not meant to suggest that any of this can reduce our pain or restore our undeniable losses, but at least it helps us see the glass isn’t rendered totally empty.

Sometimes it can take a revolution of sorts to hold onto to our freedom or mitigate our losses.  Mine started with giving myself permission to revolt against standardized one-size (that don’t fit all) ways of looking at important things like freedom. 

We can choose to replace any ill fitting lens with one that accounts for the unique and complex anomalies that happen to people just like us.

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and is a supporter of the Trigeminal Neuralgia Research Foundation.

Pat draws from her extensive background as an organizational effectiveness consultant who coached and developed top executives, mobilized change initiatives, and directed communications.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Miss Understood: How I Won My Disability Case

By Arlene Grau, Columnist

Early March of this year my second hearing was set with Social Security regarding my disability claim. I had previously been denied and we appealed.

The judge wanted one of their rheumatologists to come in and read my blood tests, doctors’ notes and other medical records, because he said he couldn't decipher them.

Two weeks before our hearing date we got word that the specialist they selected was actually a kidney doctor.

My lawyer wrote the judge informing him that we wanted someone else because we felt that the doctor wasn't qualified for my case. We never heard back from the judge, but the doctor excused herself.

The day of the hearing the judge was as harsh as ever and upset because no one in his office told him about the doctor. He wanted to reschedule my hearing until they got another specialist.

But my lawyer wasn't ready to give up and I was so frustrated at that point that I begged him to let us say our peace. Reluctantly he did.

I suffer from rheumatoid arthritis, lupus and other autoimmune diseases. We were able to prove that I had missed numerous days from work due to hospitalization, surgeries or illness based on time sheets and hospital records. I also have numerous doctors’ appointments every month and had the medical records to prove it. Basically everything the judge had a question for, we had supporting documentation.

I had walked in thinking the judge was going to deny me again, because he had stated that rheumatoid arthritis and lupus aren't disabling diseases. I had plenty to tell him about that, but he just brushed off everything we had to say.

The second time around, he was very different.

I honestly believe that prayer works. That and being prepared. Having all your bases covered and making sure you have all your paperwork squared away. I got a print up of all my doctors’ visits and built a graph of them by month and year. Then I did the same thing for my hospitalizations. I also got a print up of my work time sheets and graphed the days I missed by month and year. For some reason the judge liked the graphs more than the print ups themselves.

In the end, the judge awarded me close to three years of disability that I was owed in retro pay. I’m also now receiving Medicare. Although it took 3 years, I'm glad I didn't give up and that I had so much positive support from friends and family. My family and I are finally able to put this behind us.

Arlene Grau lives in southern California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.