Tag Archives: Debilitating Chronic Illness

Smile—Fake Happy Til You Make It!

4 Mar

By Heather Grace, IPJ Staff Writer

PHOTO: Heather Grace, SmilingYou’ve probably heard the saying, “Fake it til you make it.” And lots of people do, everyday. They act as if they have more know-how/money/power/status than they actually do. Sure—it’ll impress people for a time.

But… What if you don’t actually make it? Or the truth is discovered? That kind of “faking it” will likely lead to little more than a sick feeling in the pit of your stomach. It could also result in a great deal of anxiety, as you worry you’ll be found out. Or worse—knowing the real you may never live up to the fake you could cause depression.

I don’t hide behind tall tales, it’s just not who I am. Being an open book is what comes naturally to me—especially with friends & people with whom I share a bond (like the chronically ill, for instance).

I also appreciate realness in every aspect of my life. I’m not about to change my stance dramatically. However, there is a kind of “faking it” that can pay off… and in a big way!

Chronic Illness / Chronic Pain Blues

I could probably write over one hundred sad songs with all the bad days I’ve had in the past 42 years. I’ve been sick since I was a baby, with recurrent ear/nose/throat infections. By age 8ish, I was a fullblown endocrine nightmare as well. I was in/out of doctors offices & labs. My list of diagnoses seemed to grow every few years. No, it wasn’t exactly easy growing up sickly… add to that my very rocky family life (understatement of the century)—and you’d expect sorrow enough to fill a handful of blues albums, easy! But that wasn’t me–far from it.

I was like Tigger! Well into my 20s I was cheerful, bubbly, looking to just be happy & experience life. I wasn’t going to let anything stop me. Hurdles, smurdles! Nothing was gonna hold me back! I was beyond determined to escape my childhood–it was my quest. As an eternal optimist, one thing was clear to me: No matter how challenging life got, I was creative and capable enough that I knew in my heart I would always land on my feet!

That was who I was up until 1999, when a work-related cervical spine injury started causing me pain as well as numbness. Working in the IT field meant long days on a computer. The pain was chronic, due to my constantly heavy workload. Thanks to the oh-so-helpful CA Workers’ Compensation System, my chronic pain became intractable pain—both constant AND severe—by 2003.

It was sheer hell and I still don’t know how I survived 2003-2006. I was seriously screwed up—but refused to believe *I* of all people was permanently disabled. But the blues began to set in, anyway. BIG TIME!

Dark Days, Searching for Light

By mid-2006, things were beyond bad. I’d hoped & prayed for years that my final surgery—microsurgery on the crushed disc in my neck—would solve everything. Finally, that surgery was granted and I was expecting to go back to “normal”… even if the road back was a slow and arduous one. No one really warned me to manage expectations. No one said, “It could get better, or it could get much worse—we cannot predict which will happen.” They should have!

My spine surgery made things much, much worse. When the neck brace came off and I was set to begin rehab, I knew something was very wrong. I told the Physical Therapist that my neck didn’t feel right, like the joints was worn or had sand grinding in it. The pain and neurological sensations were strange to me—nearly indescribable—at the time. But whatever was going on, I was worried. And later, I’d learn why:

Work Comp granted this much-needed surgery too late for it to do much good. Success was not all that likely. My first MRI showing the problem was in 2001, after two years of fighting to get a more definitive test than an x-ray! But, it would take another FIVE YEARS for them to actually do the surgery?! Because my neck surgery happened much too late to prevent the nerve damage that invaded my spinal column and took over, a negative outcome should have been more easy to predict. I’d already been a serious neurological mess for at least two years. So conservatively, my chances were 50-50 that it would help, at best.

After all I’d been through with the pain, multiple nerve surgeries, epidurals & other torturous interventions that I didn’t want or need but was forced into, extreme job stress/a subsequent dubious lay-off, failed spinal surgery & worst of all—a dwindling support system, I was extremely suicidal. Me… the girl who’d considered it unthinkable her entire life, despite all the tough times. Me… who thought SUICIDE was vile–that the word itself was more ugly than any other word, in any language.

Before 1999, I’d never have believed it was possible for things to go that wrong by 2006. Not for me. But the pain & numbness were so severe, they consumed my days and kept me up every night. On an all-too-rare good night, I got two hours sleep. Being in that state yet not being able to sleep felt like a waking nightmare.

The still silence of the early morning was the most difficult… In torturous pain, sleeplessly suffering, my thoughts inevitably turned dark. I was all alone. Afraid. Despite the state I was in, my mind was still razor sharp, and the reality of my situation was dar from pretty. What would my future would look like if I continued this downward spiral? How long could I survive, like this? Did I even want to? After searching for my miracle–spending countless hours and thousands of dollars on my quest–did I think it possible to ever end this agony? Time seemed to slow down when things were at their worst. The clock’s incessant ticking was taunting me–trumpting through each torturous second of this eternal torment!

The ‘Tigger’ in me was no more… that wide-eyed ‘can do’ kid had finally met her match. I had no strength left to fight. I just wanted to die. Because I would only settle for guaranteed death, I was desperately and obsessively thinking about how to do it. It was all-consuming. After researching the less ugly options, I found there was too high a survival rate for those methods. So, it would have to be ugly. The thought anyone I know finding me afterward was too awful to bear. So, I decided I’d use sporty little car to put an end to the constant, unbearable pain. I’d zoom toward the spot I picked out on a desolate road where I’d force my shiny silver beauty to fly though a flimsy chain-link fence and over the side of the freeway, slamming into the cement bridgework below. If the fall/crash itself wouldn’t do it, I figured going from 100 to 0 into a wall of cement would.

Twice, I felt compelled to end my own suffering. In the early morning hours, I sped toward ‘the spot’ without any hesitation. This was to be it, finally. My pain would be no more. To my dismay, I realized that even in the pre-dawn hours, there were more cars on the road than I’d expected. So, it would be a waiting game.

Sitting on the side of the road, I imagined myself doing it, over & over. Everytime I pictured my car hitting the cement area I selected, I stared at the roadway below & said: Now! Inevitably, each time I did so, a car drove by. It happened countless times—on both attempts—despite it being in an area of Orange County where few people were on the road in the pre-dawn hours of the morning.

It was infuriating! The only reason I didn’t actually do it was because I refused to be the cause of anyone else’s suffering. After all, the end of nightmare shouldn’t be the start of someone else’s.

The second time I was so crushingly disappointed and angry, I was slamming my fists into the steering wheel—hard—as I scream-cried so loudly, I worried someone would call the police. Then, the answer came to me, out of nowhere: See JUST ONE MORE DOCTOR, If he can’t help me, then I’ll go through with my “backup plan”—cars on the road, or not.

I’ve never experienced such clarity in my life… it felt like divine intervention, even then. And now, I am certain it was!

National Suicide Hotline--Open 24/7: 800-273-TALK (8255). Thankfully, that one doctor turned out to be the one! I started 2007 anew. With his help, the intactractable pain was under control & I could smile again. I was still in pain—and I always will be—but at least it’s bearable. No chronic illness / chronic pain blues. No thoughts of suicide. In fact, I can hardly believe the person who was planning every detail of her death in 2006 was actually me. Pain management was my miracle, truly!

Even on the worst days, I am so thankful I found help and got a second chance at life. Suicide seemed like my only way out, but clearly, it wasn’t. Deep down in my soul, I now know I could never let myself get to that dark place ever again. I’d reach out for help, however I had to, even if it was by calling the National Suicide Prevention Lifeline: (800) 273-8255 or going to the closest ER.

I’ve learned so much by standing on that ledge, staring into the abyss. (Though I’d never recommend it!) Though I’m not exactly Tigger anymore, I have my Tigger moments… and some Eeyore too. Regardless, I’m alive and I know how very lucky I am to be here. My hope is that by sharing my these very dark moments so publicly, perhaps I can help someone else resist their own ledge. So my journey continues, with all its ups and downs. (See: Are You a Tigger, an Eeyore, or a Pooh?)

Unfortunately my health problems are back, with a vengeance. Things started to get worse five short years after I found my wonderful Intractable Pain doctor. I now have an autoimmune disorder that’s yet to be fully diagnosed or controlled. Autoimmune health is complex. Many of my symptoms are common to several different illnesses. In time, I’ve got to believe I’ll get the answer to a question that I believe dates back to my childhood endocrine issues. What’s certain is that my hormones are a mess. So of course, the blues are also back. I’m very thankful that I’m not suicidal, but still… Fate is a cruel mistress.

Faking A Smile—One Fake Happy Day

Instead of spending another damn day crying over anything & everything that’s wrong, an idea came to me today, based on some very applicable research I’d read a few years ago (see article below).

Research in recent years has shown that there may be a real benefit to putting on a fake smile. According to many experts, smiling isn’t just a way to express happiness… It may actually be able to cause a happy feeling. Sure, it’s counterintuitive. After all, we smile without giving it a thought when we’re truly happy. But when it comes to the smile-happiness connection, a growing body of evidence supports the theory that happiness is also possible, as an effect of smiling.

So, my mission is to try that theory out, at this very low point in my life. I have no expectations, I mean, how can I? I’m the all-real, all-the-time type. So fake isn’t exactly my style.

Still, I’m hoping there’s something to it! Even though there’s a whole lot wrong at the moment, in my entire life—from my health, to the roof over my head that’s about to be taken from me, to the hole in my pocket where money should be to pay bills—I know one thing for sure: smiling can’t hurt!

Everything’s gotten me so down, I’ve been having trouble getting back up again. So just today, I’m going to try smiling anyway.

Yes—SMILING!

It may seem silly to plaster on a fake expression, but I’ve worn the “I’m ok” mask for years, to hide how much pain I’m in. Why not take it a step further? Instead of faking just ok, I’m faking full-on zippity doo dah BLISS! I want out of this funk, darn it! Since I came back from the edge, being this blue is very unlike me. It has absolutely no redeeming value, either. So, I’m getting out, if only for one day. (And if it works, the optimist in me says I’d be fine with faking happy it til I make it back there, for real. Somehow. Someway. Someday.)

Sure, I’m alone under a mountain of bills I can’t pay & I can’t seem to get to all the things I should have already done, no matter how hard I try… But, just for today, I’m smiling in spite of it all. Just for today—because who knows what tomorrow will bring? I’m hoping tomorrow I’ll have a reason to crack a smile, naturally… Being hopeful can’t hurt, either!

I’m trying on my 100% smile-til-it-hurts “fake happy” for 24 hours. I’ll let you know if it pays off, like the research says it should. If it turns out that it helps to grin for absolutely no good reason, I might just keep it up—who knows? Feel free to join me and take your very own fake smile for a test drive… I’m going to put the saying, “Fake it til you make it” to good use.

So if you see me, count on a smile, ear-to-ear. And if you say “good morning,” “good afternoon,” or “good night,” I have the perfect reply: It couldn’t possibly be bad!

About The Author

Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. She’s Co-Director of the 501c3 nonprofit Intractable Pain Patients United (http://www.ippu.info), has been a Speaker/Conference Planner at For Grace’s (http://www.forgrace.org) annual Women in Pain Conference and is a Pain Ambassador for the U.S. Pain Foundation (http://uspainfoundation.org). She is also active on Twitter: @IntractablePain.

© 2011-2015 Intractable Pain Journal & Heather Grace. All rights reserved.


Does smiling make you happy?

by Julia Layton · 03 June 2009 · ©HowStuffWorks.com · http://science.howstuffworks.com/life/smiling-happy.htm

Smiling doesn’t seem like a particularly complicated act: You feel a happy emotion, the corners of your mouth turn up, your cheeks lift and your eyes crinkle. The overall effect tells the outside world that you’re feeling happy on the inside. It’s simple and, in most cases, totally spontaneous. We typically smile without making a concerted effort to do so.

In fact, most people are turned off by the appearance of a smile that takes effort, because so often it’s obvious it’s fake. It’s not hard to detect a fake smile — it usually involves only the mouth, not the eyes.

The appearance of a genuine smile, one involving specific changes in the eyes in addition to the mouth (notably a crinkling of “crow’s feet” and a downturn of the outer points of the eyes) is called a Duchenne smile, after the neurologist Guillaume Duchenne. Back in 1862 he identified the facial muscles involved in spontaneous smiling[3].

Awkward appearance aside, research performed over the past few decades suggests there could actually be a benefit to producing a fake smile. According to many experts, smiling may not only be an outward manifestation of a happy feeling. It may actually be able to cause a happy feeling.

It’s the exact opposite of how most people see the smile-happiness connection, but with a growing body of evidence supporting the effect, it seems there may be something to it. But does that mean you can just turn off every bad feeling by faking a smile? Could you be a truly, permanently happy person if you master the look?

In this article, we’ll look at the evidence for smiles causing happiness, see how significant the effect is and find out if there are other facial expressions that can trigger the emotions they’re supposed to reflect.

In the 1970s and 1980s, quite a few psychologists got in on the smile-research action, with surprisingly consistent results.

Evidence That Smiling Causes Happiness

In 1989, a psychologist named Robert Zajonc published one of the most significant studies on the emotional effect of producing a smile.

His subjects repeated vowel sounds that forced their faces into various expressions. To mimic some of the characteristics of a smile, they made the long “e” sound, which stretches the corners of the mouth outward. Other vowel sounds were also tested, including the long “u,” which forces the mouth into a pouty expression.

Subjects reported feeling good after making the long “e” sound, and feeling bad after the long “u.”

Other studies reported similar results. One had subjects make the positive and negative expressions by holding a pen in their mouths, either protruding outward for a pout or held lengthwise in the teeth to make a smile. In another, researchers had subjects mimic each physiological trait of a smile until their faces were in a full Duchenne expression.

In yet another experiment, one group of subjects was shown pictures of various facial expressions; another group made those facial expressions and a final group made those expressions while looking in the mirror.

The evidence all points toward smiling as a cause of happy feelings. Subjects were asked questions that pinpointed their emotional state before and after smiling, and they overwhelmingly scored happier after smiling. In the study involving the mirror, subjects who watched themselves smile saw an even more pronounced change in mood than those who smiled without the mirror, and the subjects who merely looked at pictures didn’t experience that change at all.

Those researchers hypothesized that self-consciousness is a factor in the effect — that introspective people might experience a greater smile-related mood lift than those who are less aware of their feelings. Thus the mirror-related boost. But what about the difference between those who looked at pictures and those who created the expressions? Why would the people who put their faces into a smile feel happier afterward?

Most other studies on the topic note the cause-and-effect relationship without having a definitive explanation for it. The reason why Dr. Zajonc’s research is so significant in the field is because he proposes a detailed, physiology-based explanation for the cause-and-effect relationship. According to his hypothesis, the facial changes involved in smiling have direct effects on certain brain activities associated with happiness.

Why Smiling Causes Happiness

While lots of research on smiles triggering happiness was performed in the last half-century, that spurt of interest was actually a renewed interest in the topic. The theory goes back to Darwin, who proposed in the 19th century that facial expressions didn’t only reflect emotions, but also caused them.

A lack of good evidence for how that happened was put the theory on the back burner for many years. But in the 1980s, some interesting studies on the physiology of smiling brought it back into the consciousness of the psychology field. One study found that when subjects contorted their faces to indicate fear, their body temperatures increased and their pulses sped up. Dr. Zajonc’s research took this observation further, into a full-fledged proposal for why a smile might trigger happiness. It basically goes like this:

When the temperature of any body part changes, the chemical activities connected with that area also change. Therefore, when facial muscles are activated in an expression, the biochemical processes associated with those areas of the face are altered according to their temperature change. And research suggests that a cooler brain creates good emotions, while a warmer brain produces negative emotions[2].

Zajonc points to the part of the body called the internal carotid artery, which is the “pipe” that delivers the majority of blood to the brain. This artery flows through an opening called the cavernous sinus, which contains lots of facial veins. When someone smiles, causing certain facial muscles to stretch and tighten, veins are constricted. This would cut down on the blood flowing to the cavernous sinus, which in turn would reduce the amount of blood flowing through the carotid artery to the brain. Less blood volume means the temperature of that blood drops.

When that cooler blood gets to the brain, brain temperature would drop, too, triggering a happy feeling. The theory works in reverse, too: Zajonc says that when the muscles involved in a frown tighten, the result is increased blood flow to the cavernous sinus and, by extension, a warmer brain.

So, if Zajonc is right — and not everybody thinks he is, but it’s an interesting possibility — does that mean you could avoid sadness for the rest of your life by faking a smile?

Definitely not. Even proponents of the theory don’t suggest that smiling can make unhappiness go away. The theory in a nutshell is: in a state of emotional neutrality, putting a smile on your face can tip you in the direction of a positive feeling.

So don’t walk into a funeral and make everybody smile as big as they can. You’ll look insensitive, and it probably won’t make anyone feel any better. [Editor’s note: But smiling to provoke happier feelings under the right circumstances sounds like a great way to chase away the blues, doesn’t it? Especially if it works!]

For more information on smiling and emotion, visit the links below.

Sources

1. “Can Smiling Make You Happy?” Research and Teaching Showcase. Department of Psychology, University of Alberta. April 1998. http://web.psych.ualberta.ca/~varn/bc/Kleinke.htm

2. Goleman, Daniel. “A Feel-Good Theory: A Smile Affects Mood.” The New York Times. July 18, 1989. http://www.nytimes.com/1989/07/18/science/a-feel-good-theory-a-smile-affects-mood.html?sec=&spon=&pagewanted=all

3. Lienhard, John H. “No. 883: Smiles That Make You Happy.” The Engines of Our Ingenuity. University of Houston College of Engineering.http://uh.edu/engines/epi883.htm

Copyright © 1998-2015 HowStuffWorks, a division of InfoSpace LLC.

Life is Precious & Short: Gather Ye Rosebuds While Ye May

26 Aug

Gather Ye Rosebuds While Ye May
By Robert Herrick, 1591 – 1674
.
Gather ye rosebuds while ye may,
Old Time is still a-flying:
And this same flower that smiles today
To-morrow will be dying.
.
The glorious lamp of Heaven, the sun,
The higher he’s a-getting,
The sooner will his race be run.
And nearer he’s to setting.
.
That age is best which is the first,
When youth and blood are warmer;
But being spent, the worse, and worst
Times still succeed the former.
.
Then be not coy, but use your time,
And while ye may, go marry:
For having lost but once your prime,
You may for ever tarry.

“Advocating for Another” Carnival 2012 – Day 6

by Heather Grace IPJ Staff Writer

Purple RosesThis poem is a great one to illustrate how fleeting time is. For people with chronic illness, this is a sentiment we know all too well. For us, the “good ol’ days” are all the more brief.

Having lived with chronic pain since 1999, I lost a lot of my youth. I had no idea that my youth would be stolen from my grasp all too soon. I was barely 26 when I first visited a doctor, complaining of pain in my arm, and increasing headaches. I didn’t know the entire problem was coming from my neck. That would take many more years of increasing pain, stress and difficulty with everyday life to uncover.

By the time I realized my youth had melted away, I was very ill. Looking back to see what I had lost, I was really sad. And angry. I had spent most of “good years” working my ass off between school, work and writing for a newspaper. I didn’t even stop to smell the roses, much less gather them. If I think about it for too long, it destroys me. (Tears are already crashing down my cheeks as I write this…)

It’s not easy to look back with regret, no matter the circumstance. But is all the more intense when you realize the rest of your life will be spent in constant, severe pain. Obviously, I wish I had the ability to go back, and goof off. Be a kid! Gather to my heart’s content! Be irresponsible… crazy. Stupid, even!

Instead of being a carefree kid, I look back on a lot of hard work: the 12-15 units/year I took throughout college, the late nights in the newsroom and the days coming home smelling like pizza… All of this, to get an AA and two BAs in 5 years time. Even while I was starting to feel really crummy, I was still in gung ho education mode. When my pain went from chronic to intractable, I was in the middle of my MBA program, trying to figure out how to complete my degree! I was convinced I’d be getting my life back soon, so I pushed myself to finish that degree, with help from the ADA office.

Ironically, it was all for nothing. These are degrees that I cannot even make use of today! Truthfully, I feel cheated. I’m so incredibly Type A that even now, I can’t help being hard on myself about making what seemed like wise decisions for my future! I focused so intently on my future, because I wanted out of the crappy situation I was born into… To know that I would never have to go back there. That I could depend on myself, and never have to ask them for anything ever again.

None of it mattered. I’m still broke on the verge of losing everything. I’m still considering whether I should ask them for help or not. And, I’m still feeling helpless and scared like I never wanted to be again. It sucks. To be upset that I “wasted” my youth on education is not a story you hear everyday! But, that’s life with chronic pain/chronic illness. You’re never quite the same as the normal people.

While I am by no means recommending that anyone drop out of school, I do think everyone should spend more time doing things that make them happy, whenever possible. Please just re-read the poem. Don’t put off anything that you value… even if it’s being silly with friends or taking the trip of a lifetime. You don’t need me to light a fire under you, but maybe this was a good reminder.

You may try to convince yourself that there’s all the time in the world to do the things you want to do. In your heart, you know there isn’t–I didn’t have to tell you. It’s a simple truth, but in our busy lives, we forget it sometimes: you never really know what the future will hold. So, what’s holding you back?

These days, I am happy with a “good” day where the pain isn’t too intense and I can do something that’s important to me. When I have the chance to really laugh out loud, that’s a great day. A day when I can forget about the pain for even a minute–that’s a spectacular one!

So, come on, it’s your turn. Happiness is waiting. What will you give yourself permission to do just for you? You’ve been thinking about it… now go out there and do it!

The above blog entry is part of a week-long series created by WEGO Health “Advocating for Another” Carnival 2012. You may follow my blog here, and see me on Twitter @IntractablePain. Check out other entries: #A4AMONTH.

Gather Ye Rosebuds While Ye May is available freely, in the public domain.

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.

Surprise! We’re Chronic and Intractable Pain Patients, NOT Addicts!

24 Aug

“Advocating for Another” Carnival 2012 – Day 4

by Heather Grace IPJ Staff Writer

severe back painThere are plenty of things the average person doesn’t know about the pain community. Let’s focus on a really harmful myth: The stereotype about pain patients being a bunch of crazed addicts. It really rubs me the wrong way. Our reality couldn’t be further from the truth. And it’s time you heard some of the reasons why. Here we go:

First, I think it’s important to set the record straight regarding the myth that people with pain who are prescribed pain medication are in serious danger of becoming addicts. Chronic/intractable patients who take pain medication are no more likely to become addicted than the general public, despite the media mudslinging. Their biased attacks are damaging to pain patients–threatening access to vital medication throughout the country. I’m not sure why the media has resorted to such harmful tactics, but we’re not actually that newsworthy. Though fact-based stories on addiction stats can be boring, we’re just like the rest of the country. According to government statistics (SAMHSA), the addiction rates are well under 5%.

Living with Pain

Regardless of the public’s often negative viewpoint, people with diseaseses like Central Pain Syndrome, Adhesive Arachnoiditis or Trigeminal Neuralgia often depend on prescription medication. It’s an important part of many patients’ pain care protocol. Not because they want to use this medication; it’s not because they enjoy the ongoing doubt by family and friends, the hesitation of physicians, the media attacks that end up riling up the public into near-frenzy. As patients, each of us takes whatever treatment works for us, because we want some semblance of a life back. Period.

We never asked for any of this. Personally I’m shy by nature. I don’t want to be the center of attention for any reason. But to question my character, to believe I am capable of being a bad person, scheming and creating this whole “illness” — that makes me sick to my stomach.

I’m not an addict. I’m not enjoying one minute of any of this. I didn’t enjoy the years of mistrust that kept me from getting care. I didn’t enjoy the fact that I was a rag doll being tossed around the Worker’s Comp System at will. And, I certainly don’t enjoy the fact that I will live with intractable pain for the rest of my life because they didn’t treat my illness effectively when I begged them over and over for their help. Even more, I don’t enjoy all the worry this situation creates.

pain medication

I don’t think most people realize that we who life under the microscope merely because we are sick absolutely hate it. I hate that I have to worry every minute about my doctor being there for me from month to month. What if he retired? Or was investigated and bankrupted by his defense? What if he just couldn’t take the pressure any more and walked away? Worry about the pharmacy having my medication, or like my doc, being investigated and going broke. Then, there’s worrying I will get a knock on my door from the friendly neighborhood DEA. Merely being a patient has gotten many people arrested, and even imprisoned–and I know I wouldn’t survive that! And then there’s the very real concern that federal or state laws will regulate me right into an early grave.

If you think I’m a bad example and no one else worries like this, think again. I’ve talked to many others and they are all scared. As if the stress is good for us! If your illness was constantly in the media spotlight, how would you feel? What if there was also increasingly tough legislation that you knew was endangering people’s lives all over the country? It’s a scary time to be a pain patient.

I even dislike the process and all the nonsense that goes with it. Unlike other illnesses, we cannot just see the doctor every 3-4 months or longer. Nope. Even though I like my doctor, I despise being forced to check in like clockwork, monthly. Same with the meds. We cannot get 90 days worth of medication at a time with a bunch of refills–despite the fact that this is a lifelong illness. Oh no, we’re at the pharmacy every 30 days. And what’s even more annoying to me… refills are not allowed. And, if you happen to see your doc a little early? That makes things even more fun. When I go to the pharmacy, the prescription has to be put on hold and filled later. Why? It hasn’t been long enough since I last filled it. What’s even more upsetting is that I am stuck in California. I cannot move–even if living elsewhere may be cheaper, because I’m terrified I couldn’t find a decent doctor elsewhere. (I’m blessed to have a very good one here.)

Reading all of the above should present a pretty clear picture of all the reasons why none of us enjoy being reliant on opioid medication for our treatment. Why on earth would any of us want to live this way? It’s not a choice–that’s what people need to understand. Not at all.

And, here’s the real shocker. Like most people who are in severe, constant pain, I have never gotten a “high” feeling from my medication. Ever. I think that would surprise most people. But, here’s the thing… We need the medication just as if we had anemia and needed to take iron. Or had diabetes and needed insulin. It’s the correct treatment for a serious illness. I’ve talked to many other people who’ve had the same experience. We don’t see why people abuse pain medication. It doesn’t make sense to us, because we’ve never seen that side of these medications. To us, they are vital treatments for a gravely serious disease. To us, pain medication is a lifesaving treatment. Period.

I wouldn’t wish my pain on anyone. Ever. But, I really do wish everyone would have the decency to believe us when we say we’re in serious pain and persist with our pleas for help over so many years. All we want is some mercy. Some understanding. The willingness to see us for who we are without judging. To believe us. The fact that we don’t have that from the world around us is what really surprises me.

People with chronic and intractable pain are just like anyone with a life-threatening health problem. We very ill people who need ongoing access to a truly vital treatment. Is that really so difficult to understand?

The above blog entry is part of a week-long series created by WEGO Health “Advocating for Another” Carnival 2012. You may follow my blog here, and see me on Twitter @IntractablePain. Check out other entries: #A4AMONTH.

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.

September is National Pain Awareness Month–What Will YOUR Focus Be?

21 Aug

By Heather Grace, IPJ Staff Writer

As August is nearing an end, we at IPJ are wondering what people with chronic and intractable pain will be doing to acknowledge the important month ahead. To many, September is just another month. But to people with pain, it can be a very meaningful and important time of year. September is National Pain Awareness Month.

Will you celebrate this month–being thankful for your continued health? Perhaps you’ll think about how lucky you are to have adequate pain care? Or will you focus on pain advocacy, recognizing that so few people have the pain care they desperately need? Maybe you’ll write a blog, share a video about your experience with pain, or make your voice heard in the media?

Please take a few moments to discuss National Pain Awareness Month here. Share what you’re doing to take care of yourself, as well as what you’re doing to help others. We’d also love to hear your hopes/dreams for the future of pain treatment.

And to all people with pain: We wish you a happy healthy September, filled with acceptance, support and understanding.

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.

Pain Advocacy: United We Stand, Divided We Disappear

30 Sep

by Heather Grace, IPJ Staff Writer

As Pain Awareness Month draws to a close, I’ve been thinking a lot about the overriding message… Why it is we all work so hard and what we are trying to accomplish. Pain advocacy is so important, especially with the many mixed messages out there, always confusing the public about whether there are any actual people with pain, or whether we are all a bunch of wanna-be junkies.

I really think the tide is turning, and this year, 2011, was an important one. The IOM report did a lot to open people’s hearts and minds. And the work of organizations both national and local, helped a lot to foster a positive message.

This is why our fight is so important, and this is the start of something really important, for all people with pain. The future can be a really bright one if we all realize that advocacy isn’t something for someone else to do. Advocacy is important to all the people who have been hurt, mistreated, suffered due to negligence or even ignorance, about the proper way to treat chronic and Intractable Pain.

I heard this quote in a documentary about being deaf in today’s world. It was talking about how easy it was for society to disregard the deaf. That as society grows, deaf people tend to blend in and eventually become outsiders. How true that is, for all people with pain, as well. Just as you cannot tell someone is deaf just by looking at them, you cannot tell—in most cases—that someone has chronic or Intractable Pain. Though our illness may be invisible to many, our passion, our drive and our voices ARE NOT.

I think that the reason this fight has touched us all so deeply, and brought us into advocacy with both feet is simple:

“UNITED WE STAND,
DIVIDED WE DISAPPEAR”

The ways in which we’ve all suffered indignities–and even just indifference–makes it easy to see how small our world can become if we don’t fight for better pain care, as well as acceptance.

We must stand up and be counted, and tell everyone about our experiences… Tell them all how difficult it has been to live in our world. We must keep fighting until the everyone else with pain is able to join the fight, alongside us!

I AM ALREADY AN ADVOCATE

For those of you already doing this important work, I am grateful! To my fellow advocates, I want you to know that I treasure your contributions to this important cause, and understand the difficult choices you face. I see the work you are doing, to make the world a better place for all people with all types of pain. It surprises me, each year, how hard everyone fights, through their own serious illness, to help others… the 116+ million of us with chronic pain.

Thank you for working through your own difficult circumstances, for braving the toughest days, doing what you needed to do, to be there, even the times when you really should NOT have been, because the pain was so severe. It is both heart-wrenching and inspiring, that you would risk your own health, sacrificing for this cause, for all of us. I am so thankful to work with people who are as dedicated as I am, and willing to give their all, literally.

As October approaches, I hope you will all take the time to relax, recharge and renew… Gain back anything that you lost due to the many ways you pushed yourself, to make a difference for the entire pain community. I hope you will stay connected, and be out there fighting, when you can. But please, give yourself a break, when you cannot.

I WANT TO BECOME AN ADVOCATE

For those of you who are interested in getting involved, but do not know where to begin, here are some suggestions:

Not sure what to do or where to do it? If you are looking for a very specific idea, based on your skills, challenges or even just your location, email me. I would be happy to provide you with personalized suggestions, based on your unique situation.

So, Pain Awareness Month is almost over. But, it’s not too late to have a positive impact. Whether it is September 2011, or you are reading this months or years from the time I wrote it, you have the power to act… Right here, right now. Become an advocate, for yourself. Or, for someone you love. If you are already doing this powerful work, there is something else I would like you to do. Though admittedly, I really overdid it this month, I’ve still been doing little things to bring people with pain together—asking them if they would be interested in also doing this important work. I invite you to do the same:

THE INVITATION

Please, reach out to someone you may not have reached out to before. Ask him/her to join this fight. If you see the heart of an advocate in them, tell them so! Also, tell them what you do to make the world better place for people with pain. Invite them to join you! The more we reach out to help others who feel alone and invisible because of their pain, the more we become a powerful voice of unity, speaking out about pain.

Thanks for taking an interest in pain advocacy. I hope this will be the first step among many to come. Remember, there are many of us out here, and we are all working for the same common goal. Isn’t it better to be working together? Let’s do it!

Take care, everyone! xo Heather Grace

30 Things You May Not Know About My Invisible Illness: Intractable Pain

13 Sep

by Heather Grace, IPJ Staff Writer

In honor of National Invisible Illness Week…

While few people really understand chronic pain, even fewer understand intractable pain. First let me start with a simple explanation of the categories of pain. There are three basic types of pain:

(1) Acute – you hurt yourself and are in pain, right now. This is a common event and happens to people several times throughout their lifetime.

(2) Chronic – often occurring when an acute injury does not heal well, chronic pain is intermittent and/or persistent. It can also be severe, and last for long periods of time.

(3) Intractable – the place no one wants to ever get to, when pain is both constant and severe. Meaning, all the time, every minute, every day.

For people with IP, it can be hard to sleep, to eat, to take care of daily activities, to do much of anything for yourself. Many people are bed-bound, hospitalized and overall, very critically ill. Even with pain management, once you get to the ‘intractable’ stage, pain is almost always irreversible. A common cause of this level of pain is nerve damage, created when an acute or chronic injury is not treated promptly and effectively. A mistake many medical professionals make? Denying pain medication, leaving a patient suffering in excruciating pain. If the patient manages to survive, he/she will often live with intractable pain the rest of their life.

Now, here are my 30 things you may not know about my invisible illness…

1. The illnesses I live with are: Reflex Sympathetic Dystrophy and Central Pain Syndrome, which are in the category of intractable pain.

2. I was diagnosed in: 2007

3. But I had symptoms since: 1999

4. The biggest adjustment: Trying to cope with the fact that my head and heart want to do things that my body cannot do. It can be very upsetting.

5. Most people assume: that people who say they are in pain are really just fakers or drug addicts. Talk about pain! Having family and friends listen to media reports and not understand that the general public, and even many health professionals have no idea how to diagnose or treat my condition–that’s rough. Stigma sucks… I’m just a seriously ill person, no different than anyone else with a severe, life-threatening systemic illness. Btw, if I could find a treatment that didn’t involve any pain meds, that is the treatment I’d use. I hate to be under a microscope because of the type of illness I have. Seems really unfair, and also in violation of HIPAA!

6. The hardest part about mornings: Just being able to fall asleep and get enough rest is hard. My body typically won’t let me sleep until the early morning hours, and by that point, I am exhausted. Even so, I can only sleep comfortably for four hours, on a good day, without getting up out of bed. I sometimes dream enjoying a lazy day in bed… it’s an impossibility for someone like me!

7. My favorite medical TV show: I’ll probably get some nasty-grams for saying this, but it’s House. I enjoy a good diagnostic puzzle. When I can solve the puzzle, when I know what the illness is, I really love it. I realize that House is often unkind to people with pain and believe me, I’ve written letters. Many letters! My dream is that IP and/or Lupus (which seems to be a running issue with the show), are spotlighted, for once!

8. A gadget I couldn’t live without is: my Blackberry. Yesssss! Love my baby so.

9. The hardest part about nights: getting to bed, ever, during nighttime. If I do sleep at night, it’s typically an hour or so, around 11pm and then, I’m wide awake for hours afterward. Nerve pain is a big ol be-otch!

10. Each day I take: you would be shocked how many vitamins, minerals, supplements! Let’s just say it’s enough pills that I could pour them in a bowl and eat them with a spoon! (Not that I would, gross!) Over 50, every day. We’re talking sublingual Pregnenolone, Vitamins B, D, C, Folic Acid, then DHEA, GABA, Taurine, 2 multivitamins, 3 hair vitamins, MSM, glucosamine/chrondrotin and oh so much more! Yes, a small number of my intake is prescription, and out of those, a portion are pain medication, but most of my regimen is about controlling nerve symptoms and ensuring appropriate amino acids and hormones to fight my pain naturally. And, of course to prevent a heart attack or stroke, a condition I also have called Cardiac Adrenal Pain Syndrome.

11. Regarding alternative treatments: I have mixed feelings. I’ve tried plenty that are a bunch of hooey! Any product that uses the word “pain” and the word “cure” together? Please don’t believe the hype. But, I do all I can to minimize intake of prescription medication and manage my pain naturally. Massage can be nice but for me, it’s too much because of my nerve damage. As stated above, I love supplements, and try and and all recommended by my doctor, so long as I have the resources to do so! I also use pain sprays and balms, to loosen tight muscles and prevent severe headache and body pain. Exercise is also important for all people with pain, because if you don’t use it, you lose it. Just walking some days is enough, but if I am up to it, I like to swim a little and of course, stretch. Nothing fancy because my body responds poorly when I overdo it–could be useless for days! As for trying new options? I go with advice from the doctors I trust, and/or knowledgeable pain patients I know/trust, to find appropriate treatments. Otherwise, it’s all a shot in the dark and often, a ton of cash down the drain!

12. If I had to choose between an invisible illness or visible: I’d choose NO THANK YOU! Are you kidding?! I mean, ok, visible would be easier in a lot of ways. However, “visible” for people with pain often means you’re wheelchair-bound or at least require a stabilizing product to walk, such as walking stick or cane. When I am well enough, I don’t need these stabilizers, and I am so thankful. Neither visible or invisible is exactly fun!

13. Regarding working and career: I’m an Advocate, first and foremost, these days. I also blog, use social media and sometimes do more, when I am physically able. It’s a struggle, and I cannot work a full 40-hour work week, but I know I am blessed to be able to do the things that I do!

14. People would be surprised: that I am in pain 24/7. Can you even imagine that? No joke! Try falling asleep when your arms are burning or you have a pounding headache and your muscles are in knots. It’s my everyday, people. Every darn minute. Yeah, it’s surprising–until I lived it, I had no idea it was even possible!

15. The hardest thing to accept: everything is challenging in ways most people don’t understand. Some days, people cut you slack, but before long, they ‘forget’ and are getting upset if you aren’t as capable as someone who is not in pain 24/7. I realize at times I over-promise. I know that in my heart I want and intend to do everything I say I will. But at times, it just doesn’t work out that way. It sucks to disappoint others, especially because I am super hard on myself. I cannot stand it when I disappoint someone. I was so Type A before, it isn’t in my nature to give anything less than 110%. And, how realistic is that, when I can only give 65% on a good day? I’m trying to find balance, and help others understand my limitations, too. Not the easiest thing in the world to do!

16. Something I never thought I could do with my illness: oh, so many things! Laugh til my stomach hurts. Use a computer again for more than 2 seconds. I find that my abilities change all the time. On one day, I may not be able to do anything, because my whole body hurts. The next day, I feel like Super Girl, cleaning the house like a whirlwind. The next day, I pay for it. And the day after, and the day after that. A few days later, I am blogging, shopping with family. Doing more advocacy work. It’s ever-changing, dealing with intractable pain.

17. The commercials about my illness are: Hmm. Well, I know of one. For Grace did a PSA with Jack Coleman on RSD/women in pain. It was great. But to my knowledge, there have never been any about Central Pain Syndrome. Or, for that matter, intractable pain. Maybe in the UK, but certainly not here! APF has done a lot of online stuff, but nothing on tv, that I am aware of. If there are more out there about chronic/intractable pain, someone please let me know!

18. Something I really miss doing: being young and doing crazy things on a whim… like a road trip, or a theme park, or hiking. Those things are just way too hard for me these days. I had so many things I wanted to do, but my pain started when I was in my mid-20s! I miss rollerblading all the time, that’s for sure. Even did some with my dogs. It was a blast!

19. It was really hard to have to give up: having a family. It sucks to have your illness make up your mind for you, rip the choice right out of your hands. I mentioned this at a family get-together earlier this year, and two people there looked at me, shocked. They were women in their late 40s, both who had nearly grown children. They said, “You still have time! Plenty of time!” I didn’t go into detail about the WHY, because if they didn’t get it, I wasn’t going to bring it up… this wound is so deep that I often just put it out of my head. If I talk about it too much, the tears inevitably come…

20. A new hobby I have taken up: blogging, social media! I love it, and it feels like I can reach so many more people, even if I am home, feeling sick and not able to go anywhere. It’s great as a tool to help others, as well as to get support myself…

21. If I could have one day of feeling normal again: I HATE THIS QUESTION AND REFUSE TO ANSWER IT. “What ifs” make me way too emotional. They are detrimental, honestly. It’s not fair to ask someone who is seriously ill to answer a question like this, because it’s very painful. Try being young and looking fairly healthy, and inside, you feel like you’re older than your grandmother. It sucks.

22. My illness has taught me: to be better to myself. To accept the things I cannot do and love myself anyway. At least, on a good day, I can do that!

23. Want to know a secret? Having intractable pain is really hard. It just is! I know I’ve become a stronger person, and I know that I can handle way more torment than the average person, as a result. But when it’s gone on for so long that you have no idea what it is like to be pain-free? It’s devastating. I find myself crying more easily, allowing people to see more glimpses of the cracks in my armor, the longer I have dealt with constant, severe pain. Especially on a tough day. So, if you see me crying? Know I am having a really hard time and just need a break–please!

24. But I love it when people: care enough to ask how I am and really want to hear the answer, not just the standard reply, “fine.” I am so thankful for the people close to me, who are there for me through good times and bad. Because let’s face it, the bad times can be pretty darn awful!

25. My favorite quote that gets me through tough stuff: I’ll go with the classic poster of a kitten hanging from a tree with the phrase: “Hang in there!” Kidding! Honestly, there’s no one thing that gets me through every single rough patch, but I do appreciate kind words from loved ones, soothing music, gentle hugs, a really silly comedy on tv, puppy kisses, occasional junk food, and yes, even a motivational quote or two. But right now, I just don’t feel like going all Deepak Chopra. So sue me 🙂

26. When someone is diagnosed: I am an open book. I share whatever I can, to help them. I remember being alone and afraid and not knowing what I was going to do. Losing everything, little by little. I would tell them to take advantage of the resources that are out there, by experts. I have 4 great ones at the top of http://www.thepainstore.com/articles.html. 🙂

27. Something that has surprised me about living with this illness: honestly, that I am still here. I’ve been mid-suicide more than once. The pain has been so severe, I was going to end it, right then. After surviving the worst, I found out that the many heart palpitations I’d had and the times I was nearly passing out? Those were my body nearly shutting down. People who are not treated quickly and effectively for intractable pain typically die within a few weeks. I am lucky–really lucky–to be alive. I managed to escape the clutches of Cardiac Adrenal Pain Syndrome (CAPS) throughout the worst of my uncontrolled pain. Most people with IP end up dying from a heart attack or stroke, when their heart and adrenals can no longer deal with the constant pain signal. This is CAPS. I’m living with a rare category of illness that I was supposed to have already died from. I know that it’s a miracle that I am here, and as a result, I owe it to everyone else with IP to share what I know, to help when I can… to be there for people who are seriously ill, like I was, hanging all alone at the end of my rope!

28. The nicest thing someone did for me: I’ve gotten a whole new family of support! Really! They gave me the greatest gift, by being there when no one else was… When the chips were down and I’d lost all hope, all faith in humanity, and even in God, I decided to go to just one last doctor. I told myself, even before that visit, “If he can’t help me, that’s it. I will find a way to end it, once and for all.” I was tired of the suffering–seven years worth! The kicker? This doctor didn’t just help me with my medical issues, he gave me the greatest gift by introducing me to the sweet, supportive wonderful advocate who would become my new sister! She’s truly helped me get back on my feet, after the pain had wore me down to nothingness… I am so grateful, to the doctor and to my sister for saving my life!

29. I’m involved with Invisible Illness Week: It’s part of Pain Awareness Month and anyone who is healthy enough should really be out here, fighting for all the people who are too sick to fight. It’s important to be doing this advocacy work, right now. Until everyone has timely and appropriate access to pain care, our work is not done!

30. The fact that you read this list: is so SO WONDERFUL! Thanks for reading it, but I hope, even more, that you will take the time to write your own! Or, if you aren’t a person with pain, know that it is precious gift that you read this! Whoever you have in your life with pain, they are very, very lucky. Reach out to them, and support them, do all you can… so that every person with pain is well enough to enjoy life again. Help him/her rebuild his/her broken body and spirit, and be joyful again!

One more thing… I hope you enjoy National Invisible Illness Week and Pain Awareness Month, one and all! *Please* keep the advocacy work going, all year long! -HG 🙂

No Debilitating Chronic Illness? Learn to Appreciate Life–Right Now

25 Aug

by Heather Grace, IPJ Staff Writer

Everything I do these days is impacted by what my body permits…

To live with a chronic illness is to live at the whim of your body. You may want to do something with your whole heart and soul, but your body gives you an emphatic “NO!” Like:

  • I may do some minor cleaning, but I won’t be on all-fours scrubbing the tub.
  • I may watch my puppies playing, but I won’t be going on an African safari.
  • I may laugh and joke with friends and “hang out,” but I won’t be pulling an all-niter.
  • While people I know are kick-boxing, spinning, hiking and biking, I am lucky to be standing some days.

Don’t get me wrong–I do realize how fortunate I am to still be among the living. Central Pain Syndrome and Reflex Sympathetic Dystrophy are two very serious diseases. I know that any degree of pain management is a miracle. But sometimes, I’ll admit, it’s hard to see the sunshiny side of the experience.

It’s weird to be in my mid-30s, watching people doing things I can’t–like having a baby–and feel a little sad, heck even a little jealous. Or, reflecting on the little things I did early in life and didn’t appreciate, because I didn’t know it would be the first and only time I ever did them. I never realized how much joy I got from things like ice skating, running full-force, or trying to snowboard and failing, but having fun just trying!

Why do I long for the things I cannot have? Why is it so hard to just get with the program and realize I now have limitations? No matter what my body says, my mind is still the same, beneath the wreckage.

Because I was such a tough “I can do anything” sort of person before the pain, it’s not been an easy adjustment. Listing all the “cants” and “wonts” is really upsetting, even a decade later. Just recently, I began trying to record a short piece of audio, for a slide show for an American Pain Foundation project called, “If I Lived in a World with Less Pain, I Could…” and I began to tear up. It made me really emotional, more than I expected, to look back at who I used to be and consider the things I could do and even could be, without pain.

What really got me was the realization that it’s been so long, I can no longer remember what it is like to live my life, without constant pain. Think about it for a minute… That’s a huge loss, even with all I have been through. And so I ask you this question: If you were in pain every minute, every day, how would you cope? Despite the many changes in my life, and the fluidity of my everyday existence, I know I am doing pretty well, considering.

And, of course, as someone with constant pain, there are certain concessions. I know I am not the same “ME” I once was. We all have to accept our new selves, after serious illness or pain. For each of us, this process is a personal journey that can take a long time. Some of us–like me I suspect–may never fully accept it. Sure I deal with it, day after day, hour after hour, minute after minute, but truly accept it? Not me. Not now. Probably never.

So, if you’re out there in life, sweating the small stuff, letting it get you down, please, for your own good… WAKE UP! Start living your life, now, before all the good days are gone. I know it’s a morbid thought–absolutely–but it’s not any less true!

Especially if you love someone with pain–or someone with a chronic, debilitating illness–consider their experience and do this for them, even if you won’t do it for yourself: Appreciate life more, revel in each new experience… show him/her that you realize all the wonderful gifts you have in life, merely by being “normal.”

If you don’t have a loved one who has an illness such as chronic or Intractable pain, please realize the precious gift you have, in the freedom of your daily life. You will not always be as able-bodied as you are today. Life may not change til you’re in your 80s, or it could change tomorrow. The not knowing is why it is all so precious, special and short.

Nobody who is in their 80s looks back on life, wishing they could’ve complained more or sat around more, in the “good old days.” It’s time to LIVE your life… right now, today! Step away from the screen and do something fun. Have a blast! If not for you, do it for me. Do what I wish was possible… to forget about the pain and live with complete unadulterated joy. My plea: Enjoy every minute! I hope you do.

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