Tag Archives: pain patient

CDC Opioid Prescribing Guidelines–A Threat To Pain Patients’ Lives

21 Sep

by Heather Grace IPJ Staff Writer

On September 16, the Centers for Disease Control and Prevention (CDC) did something dubious. What’s frightening… it’s likely to have a life-altering impact on all chronic & intractable pain patients. Was this a deliberate act? I’ll let you be the judge.

They decided to release/discuss the CDC Opioid Prescribing Guidelines that will go into effect in 2016. These guidelines were designed to further curb opioid abuse. But in fact, they seem to be about arbitrarily curbing treatment.

In order to even view the CDC’s draft of opioid prescribing guidelines, you had to attend the webinar. They were not downloadable. They recorded the webinar, but are not releasing it to be watched for those who missed it.

And to comment on the CDC’s hard-to-access proposed guidelines, you had just one day. No–that was not a typo! Just one day was allowed for comment! Comments had to be in by 5pm eastern on September 17th, which meant people like me and other west coast advocates did not get to comment. Unfortunately, I didn’t find out until it was too late that it would close at 2pm my time. How many others wanted to comment, but were unable to?

A final version of the CDC’s guidelines will go into effect 2016 onward. Based on what I’ve read/heard from an expert in the field, drastic changes are ahead. We should anticipate a very low arbitrary limit on pain medication for all patients nationwide, even the most seriously ill. What’s most troublesome–the CDC intends to set that limit even lower than the 100mg/day now in effect in many states. (See #5, below.)

The draft guidelines are outlined below thanks to the Pain News Network–thankfully. They will not be available in draft form on the CDC’s website, despite the fact that guidelines will be discussed from now through December.

CDC Draft Guidelines for Opioid Prescribing

  1. Non-pharmacological therapy and non-opioid pharmacological therapy are preferred for chronic pain. Providers should only consider adding opioid therapy if expected benefits for both pain and function are anticipated to outweigh risks.
  2. Before starting long term opioid therapy, providers should establish treatment goals with all patients, including realistic goals for pain and function. Providers should continue opioid therapy only if there is clinically meaningful improvement in pain and function that outweighs risks to patient safety.
  3. Before starting and periodically during opioid therapy, providers should discuss with patients risks and realistic benefits of opioid therapy and patient and provider responsibilities for managing therapy.
  4. When starting opioid therapy, providers should prescribe short-acting opioids instead of extended-release/long acting opioids.
  5. When opioids are started, providers should prescribe the lowest possible effective dosage. Providers should implement additional precautions when increasing dosage to 50 or greater milligrams per day in morphine equivalents and should avoid increasing dosages to 90 or greater milligrams per day in morphine equivalents.
  6. Long-term opioid use often begins with treatment of acute pain. When opioids are used for acute pain, providers should prescribe the lowest effective dose of short-acting opioids and should prescribe no greater quantity than needed for the expected duration of pain severe enough to require opioids. Three or fewer days will usually be sufficient for non-traumatic pain not related to major surgery.
  7. Providers should evaluate patients within 1 to 4 weeks of starting long-term opioid therapy or of dose escalation to assess benefits and harms of continued opioid therapy. Providers should evaluate patients receiving long-term opioid therapy every 3 months or more frequently for benefits and harms of continued opioid therapy. If benefits do not outweigh harms of continued opioid therapy, providers should work with patients to reduce opioid dosage and to discontinue opioids when possible.
  8. Before starting and periodically during continuation of opioid therapy, providers should evaluate risk factors for opioid-related harms. Providers should incorporate into the management plan strategies to mitigate risk, including considering offering naloxone when factors that increase risk for opioid-related harms are present.
  9. Providers should review the patient’s history of controlled substance prescriptions using state Prescription Drug Monitoring Program data to determine whether the patient is receiving excessive opioid dosages or dangerous combinations that put him/her at high risk for overdose. Providers should review Prescription Monitoring Program data when starting opioid therapy and periodically during long-term opioid therapy (ranging from every prescription to every 3 months).
  10. Providers should use urine drug testing before starting opioids for chronic pain and consider urine drug testing at least annually for all patients on long-term opioid therapy to assess for prescribed medications as well as other controlled substances and illicit drugs.
  11. Providers should avoid prescribing of opioid pain medication and benzodiazepines concurrently whenever possible.
  12. Providers should offer or arrange evidence-based treatment (usually opioid agonist treatment in combination with behavioral therapies) for patients with opioid use disorder.

Patients: Prepare to Decrease Pain Med Dosages

Despite the fact that I have to be on pain medication for the rest of my life due to severe constant pain from a central pain syndrome / a spinal cord injury, I was advised by my doctor to prepare to decrease my dose, as it is a likely outcome. I’m really worried. I know people I’ve gotten to know like family will die if we’re forced to conform to the these guidelines.

As for me? As strong as I’ve been, I see myself back “on that ledge” between life and death, contemplating suicide, just like I did before adequate pain care in 2006… if it ever gets to that. If the CDC decides they want us dead, and if they indeed force me back to *that* point in 2016 with these guidelines — the twisted, ugly dark place most people come back from — the world would know exactly why I took my life. I won’t allow stats-massagers to list me as an opioid death.

The thing is, I don’t *want* that to happen. I don’t want pain care to get any worse for anybody! But I’ll be silent no more about the fact that I’m terried… truly terried. Neither should you, if you’re reading this and feel the same.

The CDC said the guidelines were developed after a series of meetings with a core expert group and independent peer reviewers that the agency did not identify by name. However, I believe I have found the names of the peer reviewers, thanks to a hidden PDF on their site:

PEER REVIEWERS

Jeanmarie Perrone, MD
Professor of Emergency Medicine, Hospital of the University of Pennsylvania Director, Division of Medical Toxicology, Department of Emergency Medicine University of Pennsylvania
Expertise: medication safety, emergency department prescribing, substance misuse, use of prescription drug monitoring programs, toxicology, provider education

Matthew J. Bair, MD, MS
Associate Professor of Medicine, Indiana University School of Medicine
Expertise: pain management, geriatrics, non-pharmacologic treatments, mental health, veterans’ health

David Tauben, MD
Chief, Pain Medicine
Clinical Associate Professor, Department of Anesthesia and Pain Medicine
Department of Medicine Division of General Internal Medicine
University of Washington
Expertise: medical education, primary care, pain management

You can view the rest of that PDF on my site, in case they remove it.

CDC officials have long been critical of opioid prescribing practices and have repeatedly cited a study that claims over 16,000 Americans are killed annual by overdoses linked to pain medications. But is that true?

Those numbers are grossly overstated, according to my research. I have reviewed many documents on many sites other that Pain-Topics.org, but they have great data on *WHY* the stats are inaccurate/inflated. From my review of this issue, it is clear statistics on a growing problem means more money to fight that problem each year, when the “pie” of government funding is carved up. Perhaps a larger share will go to the CDC next year, thanks to this unreasonable set of rules they plan to force upon people in pain? How terrible that dollar signs are more important than American citizens–even those of us in severe, unending pain.

From my research, I’ve found that pain medication is being sited as a cause of death merely because it exists in people’s systems, even if they were a passenger on a 747 that crashed. Also, to increase numbers of supposed “opioid-deaths,” statistics are inflated by including deaths caused by dangerously mixing of illicit/prescription substances with the intention of getting high. These are not patients who are being treated for serious pain-related illnesses. These are, sadly, people trying intentionally to harm themselves–to create a chemical reaction in their bodies that is unnatural and dangerous.

Not to mention, despite the hype, pain medication abuse is not anywhere near the top 10 causes of death in the U.S.! So why are we the scapegoats? It has to be money… what else could it be? We aren’t hurting anyone. We avoid illicit substances. We beg for help. Repeatedly. Isn’t it time this “war on drugs” stopped making *us* its casualties?

MY QUESTION IS: ARE WE GOING TO LET THE CDC STEAL OUR PAIN CARE AND KILL US ALL?

They claim they will be using evidenced-based material in forming these guidelines, but they don’t talk about all the people who kill themselves because the pain is too much to bear. Nor do they mention all of the people with intractable pain who die due to lack of appropriate care in the emergency room, despite cries for help and pleading with ER docs to call their pain management physician. It’s happened 3 times this year, to people I know!

I suspect a lot of this so-called data comes from PROP (Physicians for Responsible Opioid Prescribing), an extremely controversial organization that has lobbied Congress and criticized the FDA for not doing more to limit access to opioids. Why do I say this? There’s a link to PROP literature calling for “cautious, evidence-based opioid prescribing” on CDC’s website, on a page discussing safe prescribing tools” (See it here, at the bottom of the page.)

In case they remove the link on this page, I’ve included a screenshot of the page, here (click to see larger image):
CDC-Safe-Prescribing

The email used to comment on this atrocity created by the CDC was opioidcomments@cdc.gov. I got an error message when I tried to comment after 5pm on 9/17. But I suggest you flood the CDC with complaints, anyway! Call the Centers for Disease Control at
800-CDC-INFO / (800-232-4636) or TTY: (888) 232-6348, Monday-Friday
8am-8pm eastern. Email them using their contact form: https://wwwn.cdc.gov/dcs/ContactUs/Form. Write them at: Centers for Disease Control and Prevention, 1600 Clifton Road, Atlanta, GA 30329. View http://www.cdc.gov/contact/index.htm for more options.

Even Better: If someone has time, why not post a comment with the contact info for the peer reviewers, listed above? Let THEM know we’re mad as hell and not gonna take this… It’s time we united for the common good. It’s time ALL PAIN PATIENTS became PAIN PATIENTS/ADVOCATES.

Are you with me?


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).

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

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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!

Who Isn’t Touched By John Clare’s “I Am”?

1 Jun

Green Meadow w/Clouds Both Light and Dark Above

I Am
by John Clare

I am: yet what I am none cares or knows
My friends forsake me like a memory lost,
I am the self-consumer of my woes–
They rise and vanish in oblivious host,
Like shadows in love’s frenzied, stifled throes–
And yet I am, and live–like vapors tossed

Into the nothingness of scorn and noise,
Into the living sea of waking dreams,
Where there is neither sense of life or joys,
But the vast shipwreck of my life’s esteems;
Even the dearest, that I love the best,
Are strange–nay, rather stranger than the rest.

I long for scenes, where man hath never trod,
A place where woman never smiled or wept–
There to abide with my Creator, God,
And sleep as I in childhood sweetly slept,
Untroubling, and untroubled where I lie,
The grass below–above the vaulted sky.


John Clare was born into a peasant family in England 1793. Although he was the son of illiterate parents, Clare received formal schooling til age 12. Through earning money as a agricultural labor (long, difficult days spent ploughing and threshing), he published several volumes of poetry.

For a short time, Clare experienced a brief albeit condescending popularity as Northampshire England’s “Peasant Poet,” at a time when illiteracy was a norm for rural workers. For at that time, poetry was expected only from those in high society.

This was a short-lived dream, sadly. As they say… ‘All sad people like poetry. Happy people like songs.’ Though it’s apparent he was a gifted writer, the sadness, isolation and financial hardship wore on Clare. After suffering from delusions, he was admitted to an asylum where he spent the final 20 years of his life. — Heather Grace, IPJ

___

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).

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

Chronic Pain Patient In Crisis: Lifesaving Care Needed

4 Oct

READER QUESTION:

This is my first time responding to any type of blog, forum, etc. This story hit home (Surprise! We’re Chronic & Intractable Pain Patients NOT Addicts)!

You explained my life to a “T”. I can feel my body dying. I dont know where to get help. The harder I try to find a good doctor, the worse it looks. As I am writing this, tears are rolling down my face. The suffering is not only affecting me, but also my children and wonderful husband. I am crying also because there are so many of us.

Please if anyone knows how I can get help let me know. I am at the end…only enough strength left in me to try ONE more time to get help,and this is only because I love my husband and children too much to give up. I dont know what to do, and I am so frightened. — Shannon (Original Post here)


Getting Help While In Chronic Pain Crisis
Answered by Heather Grace

Shannon: First & foremost, I’m so sorry for all you’ve been through, and all you continue to go through. And, I’m so glad you took a chance & reached out! That tells me you know you deserve better than what you’ve been given. And somewhere inside you, I think you believe it is possible for things to turn around for you, too. Because *it is* – truly!

I can feel the pain & desperation in your message, because sadly, I know where you’ve been. Yes, it feels like a crushing nightmare that you cannot awake from…

Not only are you suffering physically–all the people who are supposed to help you are NOT doing so. Not doctors, perhaps not even some loved ones. Pain is a cruel, cruel illness–it is so misunderstood. The toll it takes on one’s health is serious enough. Add to that the torment of being judged, doubted and mistreated… It DOES feel like it’s more than anyone can or should be able to bear. And, for some, this suffering IS too much to take.

Intense pain caused by injury or illness does lead many to thoughts of suicide. It’s the lack of treatment when a person gets to that point that I believe pushes people over the edge. Pain KILLS.

I know, because I have been on that ledge, Shannon, right where you now stand. I tried twice to step off it. Twice a voice somewhere inside me said “NO! You can’t. It’s *not* over.” Like you, I told myself, ‘FINE. Just one more try. If this doesn’t help, I can still end my pain on my terms.’

And when I decided to try once more, a strange set of circumstances lead me to the perfect doctor *and* the perfect support system. Ironically, it was a stranger who helped me, too. He gave me the phone number of the doctor who saved his wife’s life. What a gift that was! And here I am.

As hard as it is to do, you have reached out your hand to ask for help. Don’t you see how perfect it is that you asked ME to help you find your way out of this darkness? I was you, Shannon, in 2007. Though it was just five years ago, I am now a completely different person.

I now see the power of what ONE PERSON can do. Pain Advocacy has become my life. I do what I can every day, hoping to repay the kindness that was shown to me when I needed it most. Your letter really touched me, and I want to give you all the help I can, so you can be well again.

Though you have every doubt in the world, though is the hardest fight you’ve ever faced… Even if you don’t see if yet, YOU ARE A SURVIVOR. You ARE strong enough, you CAN do this. I know from personal experience! It can and will get better for you with the right help. A doctor who “gets you” makes all the difference. I will help you find the right treatment to save your life.

Two things to get you started:

(1) All patients without effective care may benefit from the advice given in the article, Tips & Secrets: How to Find a Good Pain Management Doctor online at http://thepainstore.blogspot.com/2010/10/how-to-find-good-pain-doctor-tips.html. This is based on information I have used, myself–as well as tools I’ve used to help others.

(2) It becomes especially important to ensure physicians see that you are suffering with severely pain. How do you do this? Provide current and prospective physicians information on the OBJECTIVE signs of severe pain: http://pain-topics.org/pdf/Tennant-PainSigns.pdf. Medical professionals often refer to pain as the 5th vital sign, but how many actually look for it in their patients? So many doctors believe pain is a subjective complaint. In fact, there are many signs!

Going forward… Know that effective pain care does exist. And, I will help you find it.

All I ask of you, Shannon: Promise me you will trust me enough to hang on. Not just for your family, but because YOU deserve a chance at life again. To really live. You will get there! And one day, you will be so well, you may find yourself in my shoes… helping someone else to survive this terribly difficult disease.

If at any point you feel like you are in need of immediate attention, please call 9-1-1. There is also the National Suicide Prevention Lifeline: 1-800-273-8255. I sincerely hope you don’t get to this point, because I believe you want help as much as you truly deserve it. Hang in there, ok?

I’ve emailed you my contact info. Feel free to write back or contact me via Twitter @IntractablePain, anytime, as well.

Take care Shannon, and I’m so glad you reached out! I’m hoping to hear from you very soon. Hopefully today… I’m here for you.

Hugs, Heather G.

**************
UPDATE December 2012: I am happy to report than Shannon is doing much better, under the care of a specialist who is working to resolve her intractable pain and related conditions. I’m so pleased–everyone deserves appropriate access to care for their chronic & intractable pain!

© 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.

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.

Five Favorite Things: Appreciating The Pain Community

22 Aug

“Advocating for Another” Carnival 2012 – Day 2

by Heather Grace IPJ Staff Writer

Being part of the pain community means being surrounded by some really great people. We’re all unique, and yet, we’re all the same in so many ways.

1. Family. We Stick Together Like Glue

The pain community brings people together from all different backgrounds. We came to this community on so many different paths. Some had accidents, some were born with an illness, some got very ill and developed pain that way. Some of us are young and some old. And, we’re from every ethnicity. But somehow, all those divides that generally separate people don’t seem to matter. We have this instant bond that is palpable… all it takes is a 10-minute conversation with anyone who is living with pain. When so many of us have lost loved ones who misunderstand our illness, this is a huge blessing. It means the world to me to have a family of people who live close by. And a family of people worldwide that I connect with online, as well as over the phone. We have all found each other for a reason-we care about each other, and can truly count on each other. No matter what. If you’re not around for a while, they ask after you. You do the same. This is what family is, at its finest. It’s sad we had to find it this way, but it means the world on tough days!

2. Compassionate. A Very Caring Community

Because everyone who lives with pain has suffered a great deal in their lives, they become very caring. I’ve seen it time and again. Reaching out to strangers to help them is not at all uncommon for any of us. I’ve done it, like so many others have. Seeing someone else in pain causes us to hurt. We want to stop their suffering–helping them in any possible way. We’ve all shared healthcare tips, the numbers of doctors we trust and have also been a listening ear. We want to help. It’s important to repay the kindness that was shown to us at the most difficult times in our lives. Somehow, we’ve all had someone who did that for us. And you realize: it’s a powerful thing to share a simple kindness with someone who’s hurting.

One day, in the waiting room of my doctor’s office, I decided to kill some time. I called the Work Comp office, asking if my spine surgery would be approved. The person on the other end of the phone simply said, “Not yet” and hung up. It had been over 4 years since the MRI showed a disc at the base of my neck pressing against my spinal cord! It was too much for me, and I began to cry. A stranger sitting next to me reached out. He fumbled in his pocket, then handed me a tissue. He looked about 20. That simple kindness was shocking to me after all I’d been through. After a moment, he said, “Tough day, huh? I’ve had them too. This place will kill you if you let it.” Before long, nearly everyone in the waiting room was talking about their experiences. We were sharing war wounds and supporting each other. Months later, I realized being kind, supportive and caring was a unique side-effect of serious pain. I’ve seen countless random acts of kindness ever since, and I have become more and more giving over time. It seems counter-intuitive, but that’s why I love this community. Always surprising people!

3. Strong. Mentally Tough Despite Physical Challenges

Wonder Woman! I know it sounds like an oxymoron. People suffering through chronic or intractable pain are tough? Yes, it’s true. Determined. Hardworking. Fighters. No matter how tough the person with pain may have been before they were in pain, they’re stronger for going through it. For a long time, I felt like I couldn’t take it. The pain felt like it was too much to bear, and it was getting worse and worse. I actively considered suicide, and had two near-misses. But, when I chose to LIVE, I became mentally strong. I would fight through the pain, I would find the right treatment, I would get through it. Somehow. Any darn way I had to. Lots of us struggle, and it’s the choice to fight that gets us through. Once we find a way to approach pain that works for us, I believe there’s nothing we can’t do! Of course, finding the right treatment to best management our pain makes a big difference, too. Having a doctor who believed me helped me get my strength back faster than ever. No matter how we find it, everyone who lives with pain is mentally tough. They live through the pit of hell over and over, and come out of it anew. They’re truly the toughest people I know!

4. Really Strong. Despite Misunderstanding & Stereotypes That Hurt

I know. I said this already. But, it warrants repeating. How many people with a serious (and often life-threatening) illness have to also suffer the slings and arrows of the media constantly? How many people who are ill and already in pain have to face whispers, and even sometimes face-to-face accusations from people they know and care about? Being a person with pain can really suck sometimes. You know you’re sick. But most of the world seems to think you’re not. It’s an insanity that is almost unbelievable!

We aren’t addicts. We aren’t crazy. We aren’t freaks. We’re just people who happen to be in pain. No other illness means having a hard time finding and sustaining appropriate treatment because of what the treatment often entails. No other illness means proving yourself over and over again. And yet, we all do. We are survivors. Some days because we have to be, but most days? It’s because we’re strong.

5. Fearlessness. Bravery Like I’ve Never Seen Before

People with pain have this unique tendency to become fearless! At first, it shocked me. Now, I admire every damn one of my “pain friends” for being their crazy selves! And I admire this quality most because I wish I was more fearless. I have a tendency to be very shy, especially with people I don’t know. Being part of this group has brought me out of my shell, which is wonderful. Watching everyone else be so brave has rubbed off on me, little by little. The pain community, and especially advocates, are willing to do whatever it takes, whenever it’s necessary. A group of us went to speak to the DEA, to build understanding and acceptance of our community with law enforcement. To my surprise, one of my advocate friends was perfectly willing to take pain medication in front of the people we were meeting with. Why? She wanted the DEA to understand that pain treatment is complex–just like all illnesses, there is no one-size fits all option. She happened to take more than the “ceiling” dose now being touted in Washington State and elsewhere, and wanted them to see very clearly this 100mg/day number was pulled out of the air. Her bravery–sheer fearlessness–was truly inspirational!

We with pain realize that being fearless, willing to tell everyone what it’s really like to live with this illness… That’s the only way to achieve understanding. I think it’s a beautiful quality. The person I described above is one of many who have put themselves in a public forum without worrying about ramifications. So many pain sufferers have stood up and said, “Hey! Look at me! Look at me and see I’m just like anyone else… except that I have pain.” Bold. Fearless. Brave. I admire people with pain for all these reasons, and more!

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

* Wonder Woman image copyright owned by DC Comics.

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

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