Tag Archives: chronic illness

Pain Patient Tip For Optimal Health: PROTEIN!

26 Jun

by Heather Grace, IPJ Staff Writer

Most people with chronic or intractable pain have damage to the central nervous system. It’s a long-term process (life-long—especially for those with IP), however, healing damaged nerves *is possible.*

This requires getting appropriate vitamins & supplements. I take a multi-vitamin with iron, B-complex, calcium/magnesium/zinc, fish oil, flax oil & pregnenolone religiously. It also requires proper pain control, often through prescription medication.

Pain management is much more than that, of course. There are many great self-care remedies, such as a no/low impact exercise like swimming or walking. When I’m up to it, I use my elliptical cross-trainer machine. I also take in plenty of protein & amino acids. Relaxation/stress reduction techniques are great too, such as yoga or meditation.

When my pain is at its worst, doing things that make me happy truly helps. Like: online pain advocacy via social media/this blog—aiding others with chronic pain, watching a favorite comedy movie or tv show, or taking a walk somewhere nice—a big park or the beach. Sometimes a solitary stroll is nice, but I also enjoy dog beach on occasion. Watching blissfully happy dogs running & playing—including my own—always puts a smile on my face.

One of the lesser known ways to heal the body on an ongoing basis, though, is through the intake of amino acids. Many of them specifically benefit our nerves, muscles, etc. Taking amino supplements like GABA, Taurine &/or Glutamine is a great start.

However, the very best way to get a variety of pain-essential aminos is by increased protein intake. (Experts agree utilizing food sources of vitamins/minerals is most beneficial to the body.) Lean meat, poultry & fish as well as vegetable sources like beans/lentils are great. All of these contain large amounts of protein and thus, lots of essential amino acids. The problem is, many people with severe pain have a decreased appetite.

Because I am one of the people with a lower appetite than I had pre-pain, I started increasing my protein/amino intake by using supplemental protein powder. I highly recommend it—so long as your physician approves, of course! Looking for the right product is crucial—all protein supplements were not created equal. Look for the ones with healthy, pronounceable ingredients, the fewer the better. Your best bet is brands found at stores like Whole Foods, Sprouts, Mothers or Trader Joes. (Any store that sells quality health food/vitamins/supplements is a great place to look for protein supplements!)

Because I like the taste of whey and egg protein powders most, I prefer brands like Jay Robb. It’s great tasting without having 100 unpronounceable ingredients. As for vegetable proteins, you can’t go wrong with the Garden of Life “Raw” line. This line is organic and contains only plant-based ingredients—great for vegetarians and vegans alike. In addition to a blend of vegetable proteins (rice, garbazanzo bean, amaranth, quinoa, millet, etc) Garden of Life adds a wonderful enzyme blend to aid digestion. My favorites are Raw Protein Energy w/Guayaki Yerba Mate and Raw Meal w/Marley Coffee.

Both Jay Robb and Garden of Life are fairly expensive, however. Prices are in the $30-50 range for most of the quality brands in stores. (Garden of Life is at the higher end of the spectrum.) You can find deals online. However, be sure you’re getting the product from a well-respected vendor with a good reputation. This helps ensure the product is both genuine and was properly stored, to prevent spoilage. Note: I would personally avoid auction sites for a product like this.

In addition to price concerns, any product that’s protein powder with other added ingredients (containing vanilla, sweeteners such as stevia & sometimes more) can be limiting. Most powders are meant for use in sweet recipes, such as smoothies. They can also be added to coffee or tea in place of milk/cream.

That’s my best advice for people who aren’t big on breakfast… add protein powder to your morning coffee or tea and your body will thank you for it! I absolutely love protein powder in iced coffee or iced chai tea. TIP: If you want iced coffee or tea, be sure to add the protein powder to the hot coffee/tea and mix thoroughly before adding ice… it dissolves/mixes into the drink more easily that way.

During spring/summer especially, I make/freeze smoothies but also coffee and chai tea. I blend these with ice and make enough to pop several in the freezer & pull them out to eat during in another hot day. Once frozen, I often eat my frozen smoothies/coffee/tea with a spoon still mostly frozen. Or, sometimes I allow them to thaw somewhat & eat a slushy shake. I’m always happy to have something to eat that with a decent amount of protein that also beats the heat!

Though smoothies, coffee or tea are great ways to use the protein powders as mentioned above, these powders don’t work with just any food. The products with sweeteners, as you may expect, do not work well with savory foods!

If you want more flexibility—so you can add protein powders to *any* foods you want—pure protein powders are the way to go! You’ll find that few of the high-end brands sell plain whey or soy proteins. However, there’s another option… TIP: Find a local store/online retailer that sells these in bulk quantities.

I buy my pure protein in the bulk bins at my local Sprouts. They carry both whey and soy protein. Each has a small amount of soy lecithin added, so the powder doesn’t clump. I buy the whey protein, which is approx $13 per pound. I believe the soy protein is approx $11/lb. It’s quite economical this way and the bonus is, you can buy as much or little as you like!

I add plain whey protein to most of my small meals (like soup/stew, yogurt or oatmeal) so I still get adequate protein. I add it to one my very favorite ‘fast food’ snacks/small meals by Tasty Bite. Tasty Bite sells mild Indian food that comes in 10oz microwaveable pouches—I believe they are meant to be used as side dishes. I often add a tablespoon of whey protein powder to their Madras Lentils, after I’ve cooked it. (Note: The Indian name for this dish is daal makhani, but it is also known as black lentils with red beans). Another fave of mine with a bit of added protein is Tasty Bite’s Kashmir Spinach (sag aloo / creamed spinach with paneer cheese).

TIP: Always add protein powder to hot foods *after* it is heated up. I generally add mine as soon as I’ve turned off the stove and the food nearly is ready to serve. As stated earlier, adding the powder to a warm/hot dish allows it to blend easiest. Adding it at the end also means the protein powder won’t impact the intended outcome of your recipe—you won’t add too much/too little early on. Also, if you’re using whey protein, the fact that it’s a milk product can make hot food recipes easier to scald/stick to a pan if added early on. It’s even possible to ruin what you’re making if you add the powder too soon. This is especially true when a recipe calls for precision, such as candy making. I’ve added protein powder to toffees and brittles, for instance—but only at the very end!

Readers: Any ideas for other recipes that would work well with added protein powder? Share them by commenting below!

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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.

U.N. Convention for Rights of Persons w/ Disabilities? CRPD is Against the Disabled!

3 Dec

by Heather Grace, IPJ Staff Writer

I am appalled at the tactics being taken under the guise of “equality” by the U.N. And presumably, the U.S. Senate if this vote goes through on Tuesday. The U.N. Convention for the Rights of Persons with Disabilities, or CRPD, is flat out *wrong.*

To require disabled infants to register immediately after birth (Article 18) and forcing disabled people to comply w/ mandatory monitoring (Article 33) is disgusting. Where in those requirements is there individuality *or* equal rights?! Last time I checked, this wasn’t Nazi Germany! What exactly is the U.N. attempting here?

As a disabled American, I am extremely offended–NO, OUTRAGED! Rounding people up to “protect” them will be next, right? Thanks but NO THANKS! I have done just fine without being labeled & monitored like a lab rat. The rights of disabled people have already been well established without branding us all with a scarlet “D.”

So I urge you, my Senator, to *PLEASE* VOTE NO! And, please also urge the entire Senate & U.N. to reconsider this dangerous ideology. CRPD is not about giving anyone equal footing, it’s about STEPPING ON THE LESS ABLE.

I say it again: *PLEASE* VOTE NO!

Thank you for your time & attention,
Heather Grace
Californian since birth
Disabled since 1999

NOTE: The above letter was sent to senators as well as posted to my web site and on social media. I’m speaking up for all people with disabilities, without requiring any strange & underhanded things on the part of my fellow man. Imagine that! I hope the U.N. & our U.S. government will do the same. Rethink your actions and stop playing games with people’s lives! Neither the U.S.–or any country–need your hand in the lives of our disabled citizenry!

To my readers: The full text of the CRPD is online at http://www.un.org/disabilities/convention/conventionfull.shtml. Please read it for yourself. YOU MAY ALSO BORROW MY ENTIRE LETTER (OR EDIT/SEND PART OF IT) TO SEND TO YOUR SENATOR. Contact them online at http://www.senate.gov/general/contact_information/senators_cfm.cfm. Or, call them via 202.224.3121. If you plan to do so, do it asap! The vote is tomorrow, December 4.

* Follow me on Twitter @IntractablePain
* See more articles at http://thepainstore.blogspot.com.

JFK’s Pain Story: Rare Autoimmune Illness Caused Chronic Pain, Then Intractable

27 Sep

by Heather Grace IPJ Staff Writer

While many people believe President John F. Kennedy struggled with chronic pain after World War II, the truth is much more complicated. JFK’s health was far worse than anyone knew, as he struggled throughout his life with serious invisible illness.

While an accident in 1944 worsened his condition, JFK’s struggles with pain actually began in childhood. The former president’s medical records were only released publicly a decade ago. And in 2009, they were analyzed by Dr. Lee Mandel. The conclusions presented a lifelong battle with a very serious illness. His autoimmune disease, Schmidt’s Syndrome, could’ve even prevented JFK from serving in office, had he not received effective treatment early on.

Schmidt’s Syndrome is complex illness, that encompasses Addison’s Disease (adrenal insufficiency caused by abnormal cortisol levels), thyroid disease, diabetes and/or failure of sex hormones. People with Schmidt’s have low immunity to communicable illnesses–they’re always getting catching colds and flus. In JFK’s era, this could be life-threatening.

JFK was sicker than most children, suffering many illnesses and seemingly unrelated symptoms from birth onward. These include near constant infections in infancy, scarlet fever, ongoing diarrhea/nausea, joint pain and fatigue. He was in and out of the hospital numerous times.

Throughout his military career, JFK suffered in silence. He wore a back brace to stabilize his degenerating spine and hid how sick he was. Though he wrote letters home to tell his family how he was really doing, Kennedy refused to go to the sick bay for help. Later in life, severe back pain caused President Kennedy to use crutches for years of his life, even while he was a Senator.

JFK had multiple surgeries on his back. The second operation was life-threatening, because his adrenal fatigue meant recovery would be much more difficult. Family members did not think it was safe to proceed. JFK’s resolve to be well and not live a lifetime in agony is what convinced him to go through with it.

In time, despite excellent care, the seriousness of his condition caused JFK to develop Central Pain Syndrome. This meant intense constant pain and severe nerve damage. Despite his charm and youth, on the inside President Kennedy had more health problems than many of his elder counterparts. Only when he met a physician who was able to manage his intractable pain was Kennedy able to truly thrive.

Before he was president, Kennedy’s care was revolutionized by specialist Dr. Jane Travell. Because her expert care managed his pain and autoimmune symptoms so effectively, JFK went on to lead the country without missing a single day due to illness. His pain management regimen included vitamins and minerals as well as prescriptions for pain, muscle relaxers and sleep.

To this day, similar regimens are used for intractable pain patients, so they can reclaim some semblance of a normal life. Though the pain and nerve symptoms never completely resolve for patients with intractable pain and/or Central Pain Syndrome, pain management means all the difference!

My story is very similar to JFK’s and while I don’t yet have a diagnosis for my autoimmune condition, I’m extremely fortunate to have effective pain care. If it was good enough for one of our most beloved presidents, surely it is appropriate for people living with severe constant pain today. Thanks JFK, for being revolutionary in more ways than the world knew in your day!

See the full story in Practical Pain Management, written by Forest Tennant, M.D.: http://www.practicalpainmanagement.com/pain/myofascial/autoimmune/john-f-kennedys-pain-story-autoimmune-disease-centralized-pain.


Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. Her intractable pain went from chronic to constant due to medical neglect of a serious yet treatable spinal injury. She now lives with Central Pain Syndrome and underlying illnesses. She Co-Manages Intractable Pain Patients United, has been Technical Director/Guest Speaker at For Grace’s Annual Women in Pain Conference. She is also a Pain Ambassador for the U.S. Pain Foundation.

Additional Resources: http://www.thepainstore.com/articles.html
http://thepainstore.blogspot.com · http://www.ippu.info

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

Summertime & Grandma’s Desserts: Grilled Peaches & Vanilla Bean Ice Cream

28 Aug

By Heather Grace, IPJ Staff Writer

There are not many gluten free desserts that are easy to make at home and make my mouth water. This is a definite exception–a spectacularly sumptuous summertime treat… One of my favorite memories of grandma’s house growing up.

Never one to allow her grandchildren to eat junk food, my grandmother ensured every meal contained only the best ingredients. Even our desserts were that way–wholesome and good for you. Many days, our dessert consisted of fruit from the garden. Or homemade strawberry shortcake from the field nearby. But we knew we were in for a treat when we saw the peaches in the fruit bowl on the table!

Yummy Grilled Peaches
Above: Grilled peaches are exceptional alone or with some vanilla bean ice cream. Juicy summery goodness!

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Gluten Free Goodness: Grilled Peaches & Vanilla Bean Ice Cream

This quick, simple recipe has just a handful of ingredients–four that you probably have in your kitchen right now! It’s great for impromptu summer gatherings or for a bunch or hard-to-please kids. (Best of all, it’s also a healthy gluten-free dessert!)

Ingredients:
4 tbsp brown sugar (or to taste)
2 tsp nutmeg
2 tsp cinnamon
4 fresh peaches
vegetable oil (I prefer grapeseed or olive)
1 quart vanilla bean ice cream

Prep:

Cut peaches all the way around along seam, half them & remove pit. Brush cut side (where pit was) lightly with oil. Cook pit side down on low to medium flame on the grill, until fruit has grill marks. Usually 3 to 4 minutes.

Turn peaches over and move to indirect heat. Sprinkle half of the spice mixture evenly across all peach halves. Cook on low &/or indirect heat until sugar melts and fruit is tender, 10 to 15 minutes.

Immediately remove from heat & sprinkle remaining spice mixture in the center of each peach-where the pit was. This will melt best & won’t slide off the hot fruit.

Serve in shallow bowls with a scoop each of vanilla bean ice cream. Top with extra sprinkle of cinnamon/nutmeg if you like. Or for variety, try drizzling on some chocolate sauce.

Serves 8, 1/2 peach each.

** Nectarines or pears are also great on the grill! **

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Somehow dessert was always better when grandma made it. Even the peaches alone are delish. And with ice cream on top? Now that’s heavenly! Peaches are in season, so try this sweet summer treat today. Yum!

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

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.

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.

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