Tag Archives: constant severe pain

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.


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.

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:


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!


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.


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:


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.

An Historic Event: IOM Releases “Relieving Pain in America” Report

1 Jul

July 1, 2011

by Heather Grace, IPJ Staff Writer

Anyone affected by chronic or Intractable Pain knows the heartache, stigma and shame often experienced. Even when speaking to medical professionals or loved ones, we are doubted, judged and sometimes even accused of wrongdoing. Why? Merely because we state our symptoms–the main one being an excruiating degree of pain that no one should ever have to live with.

Yet, far too many people suffer in silence, choosing to just ‘deal with it’ because the alternative is a long, winding hellish road… filled with anger, sadness, disappointment and grief. When the pain gets to be too much, some make the terribly disturbing choice to end their own suffering–via suicide.

It’s a story that is all too common in the pain community. And yet, this deplorable level of misunderstanding, medical neglect and unnecessary death does not exist for sufferers of any other disease.

A ground-breaking report that studied pain from many angles was released on Wednesday, and the buzz is generally positive. Will attitudes toward pain change in the not-so-distant future? Only time will tell, but it is about time that pain is seen as the devastating disease that it is.

In addition to defining chronic pain as a disease,the Institutes of Medicine’s (IOM) Relieving Pain in America notes some very important facts about pain. The two most noteworthy tidbits?

    1. Chronic pain affects an estimated 116 million American adults—more than the total affected by heart disease, cancer, and diabetes combined.
    2. Pain costs the nation up to $635 billion each year in medical treatment and lost productivity—an amount equal to about $2,000 for everyone living in the United States.

IOM’s Committee Advancing Pain Research, Care, and Education reviewed literature, statistics and research; they also spoke to medical experts and members in the pain community in five cities from November, 2010 through April, 2011. The resulting report includes 328 pages of detailed Findings and Recommendations. The plan for this report? Congress will use the recommendations to revamp its approach toward the treatment of pain, in an effort to make things better for pain sufferers now, and in the future.

Some of the key findings from the report are found on page 1-9, Box 1-4:

Pain By The Numbers

  • 116 million—number of U.S. adults with common chronic pain conditions
  • $560 to 635 billion—conservative estimate of the annual cost of chronic pain in America
  • $99 billion—2008 cost to federal and state governments of medical expenditures for pain
  • 60 percent—percentage of women experiencing their first childbirth who rate pain as severe;
    18 percent of women who have caesarean deliveries and 10 percent who have vaginal deliveries report persistent pain at 1 year

  • 80 percent—percentage of patients undergoing surgery who experience postoperative pain; fewer than half report adequate pain relief:
    • Of these, 88 percent report the pain is moderate, severe or extreme;
    • 10 to 50 percent of patients with postsurgical pain develop chronic pain, depending on the type of surgery; and
    • for 2 to 10 percent of these patients, this chronic postoperative pain is severe
  • 5 percent—proportion of American women aged 18 to 65 who experience headache 15 or more days per month over the course of 1 year
  • 60 percent—percentage of patients visiting the emergency department with acute painful conditions who receive analgesics:
  • median time to receipt of pain medication is 90 minutes, and
  • 74 percent of emergency department patients are discharged in moderate to severe pain
  • 2.1 million—number of annual visits to U.S. emergency departments for acute headache (of 115 million total annual visits)
  • 62 percent—percentage of U.S. nursing home residents who report pain:
    • arthritis is the most common painful condition, and
    • 17 percent have substantial daily pain
  • 26.4 percent—percentage of Americans who report low back pain lasting at least a day in the last 3 months

The Recommendations, which are detailed starting on page S-13 of the report, are divided up between aspects that should be put into effect right away. “IMMEDIATE: Start now and complete before the end of 2012.” The others? “NEAR-TERM AND ENDURING: Build on immediate recommendations, complete before the end of 2015, and maintain as ongoing efforts.”

Immediate efforts include:

  • Create a comprehensive population-level strategy for pain prevention, treatment, management, and research
  • Develop strategies for reducing barriers to pain care
  • Support collaboration between pain specialists and primary care clinicians, including referral to pain centers when appropriate
  • Designate a lead institute at the National Institutes of Health responsible for moving pain research forward, and increase the support for and scope of the Pain Consortium

Ongoing plans include:

  • Improve the collection and reporting of data on pain
  • Promote and enable self-management of pain
  • Provide educational opportunities in pain assessment and treatment in primary care
  • Revise reimbursement policies to foster coordinated and evidence-based pain care
  • Provide consistent and complete pain assessments
  • Expand and redesign education programs to transform the understanding of pain
  • Improve curriculum and education for health care professionals
  • Increase the number of health professionals with advanced expertise in pain care
  • Improve the process for developing new agents for pain control
  • Increase support for interdisciplinary research in pain
  • Increase the conduct of longitudinal research in pain
  • Increase the training of pain researchers

Overall, the approach seems like an effective plan. The execution of the plan will be the part that makes all the difference. If handled well, pain care could be revolutionalized. If led by people who are not truly knowledgeable, who let fear and a desire to prevent addiction rule their decision-making, nothing will have changed.

The future looks bright–but it won’t work unless people with pain share their stories, loud and often. Tell the IOM what you think of this report, and how you want to see pain care change. Email them at wwwiom@nas.edu.

It is time people finally knew the truth: We are not Nurse Jackies or Dr. House’s. We are, in fact, just like you or anyone… but, we cope with an unrelenting pain, every minute, every day. Don’t we deserve some real help, now, after all this time in the dark ages of pain care?

Having attended the IOM’s fourth meeting, in March, 2011, I am so pleased to see the progress made for pain sufferers everywhere. This report makes people like me hopeful, for the first time in a long time, about our future.

Testifying before the committee was my first big step into the spotlight, regarding my pain. I was outside the warm, welcoming arms of other people affected by pain. However, I was able to stand there proud, and tell my story honestly and openly. It felt great! Best of all, I was able to share with the committee some very important research from Dr. Forest Tennant, the Intractable Pain Specialist who saved my life. (This important research can be found in the article Objective Signs of Intractable Pain: Constant Severe Pain Symptoms ARE Diagnosable.)

What did I learn from my experience? Everyone who has been affected by pain should do what they can to get involved, in this way. These days, being your own Advocate isn’t enough. If you really want to make the world a better place for pain treatment, you have to be willing to work side-by-side with people just like you, creaing a common voice for the pain patient.

How do you do this? Consider becoming a Leader with the American Pain Foundation Action Network (like I did, thanks to my wonderful friend, Radene Marie Cook!) Visit their new and improved site at http://www.painfoundation.org/get-involved. Or, fill out the Advocacy Survey now. This link allows you to join APF for free, instantly; it will also allow you to connect with local APF Leaders, so you can learn more information about advocacy efforts in your area.

Want more information about the IOM Report? Here’s a sampling of media coverage:

Chronic pain affects 116 million Americans, says IOM report
Los Angeles Times – Marissa Cevallos
Pain is more than just a complaint — it’s a public health issue. And the time has come to do something about it. So concludes a new report from the Institute of Medicine, written at the…

Report: More than 100 million suffer lasting pain
Washington Post – Associated Press
(AP) — Nearly a third of Americans experience long-lasting pain — the kind that lingers for weeks to months — and too often feel stigma rather than relief from a health care system poorly prepared to treat…

Report: Chronic, Undertreated Pain Affects 116 Million Americans
TIME – Maia Szalavitz
Serious, chronic pain affects at least 116 million Americans each year, many of whom are inadequately treated by the health-care system, according to a new report by the Institute of Medicine…

Pain Costs U.S. $635 Billion a Year: Report
U.S. News & World Report – HealthDay News
Pain afflicts at least 116 million adults in the United States each year and costs the nation $560 billion to $635 billion annually in medical and economic costs, according to an Institute of Medicine report released Wednesday…

Don’t blame people for their pain, report says
CNN – blog
Chronic pain – no matter where it strikes – is a problem not many of us really understand. It can sometimes be dismissed and not effectively managed by health care professionals. Pain is widespread, but underdiagnosed and undertreated, according to a…

116 Million Americans Suffer Chronic Pain, Huge Personal And Economic Burden
Medical News Today – Christian Nordqvist
Not only does chronic pain affect the quality of life of over 116 million Americans, there is a massive economic burden too, estimated to be between $560 and $635 billion each year for the country, researchers from the Committee on Advancing Pain…

Relieving Pain in America: A new report from the Institute of Medicine
Stanford Scope – blog
The past couple of days have been hard. Struggling with work deadlines, I was also trying to comfort my sobbing six-year-old son as he suffered for hours through what seems suspiciously like his first migraine. Hands tied, I could do little except…

The yearly cost of chronic pain is excruciating
msnbc.com – Alina Selyukh
WASHINGTON — Addressing chronic pain, a hard-to-treat yet highly common condition, costs the United States as much as $635 billion a year and requires a much more comprehensive strategy for curbing lost productivity and healthcare…

Chronic Pain: 1/3 of Americans Live With It, According to IOM Report
ABC News – Susan Donaldson James
Cynthia Toussaint has reframed her life after decades of chronic pain and now helps others. For a decade after a 1982 ballet injury, Cynthia Toussaint was confined to her bed, writhing in pain from muscle spasms, unable to walk or to live a meaningful life. Crippled by an array of illnesses, including chronic fatigue syndrome and fibromyalgia, the North Hollywood, Calif., singer and dancer was eventually diagnosed with Complex Regional Pain Syndrome…

Chronic Pain Costs Have Skyrocketed, Report Says
ThirdAge – Emily Jacobson
Chronic pain costs the United States up to $635 billion a year, and a new government report suggests it requires a much more comprehensive strategy to make up for productivity and healthcare costs. About one in four US adults have chronic pain each…

(Thanks to Mary Bennett, APF, for the news links.)

The Institutes of Medicine’s (IOM) full Relieving Pain in America report can be downloaded for free at http://www.iom.com/relievingpain.

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

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