Tag Archives: physicians treating patients

Pain Patient Tip For Optimal Health: PROTEIN!

26 Jun

by Heather Grace, IPJ Staff Writer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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.

Portrait of Activism: Pain Advocates Meet with Los Angeles DEA

21 Aug

“Advocating for Another” Carnival 2012 – Day 1

By Heather Grace, IPJ Staff Writer

Being an advocate in the pain community can be challenging. Much of the country has a stigma against pain care. The media teaches the public that lifesaving medications are dangerous and addictive–to be feared.
Often, that requires pain advocates to be incredibly brave. We don’t just speak up, and go against the grain by telling people how much our lives have improved by received adequate pain treatment.

We also act. How many people with pain would willingly walk into their local DEA office and openly discuss their pain care with federal law enforcement? I don’t know how many. But, we did.

Myself & 3 other dedicated advocates met with the DEA in Los Angeles to discuss how we could better work with them to build a bridge of understanding between patients & law enforcement.


Pictured are L to R: Heather Grace, Radene Marie Cook, Gina Libby and Doug Cook (members of the American Pain Foundation’s Action Network/Intractable Pain Patients United). Taken January, 2012.

People who live with chronic or intractable pain just want some semblance of a normal life. And the DEA wants to go after bad guys. Why would patients ever be suspects? You’d think it would be simple to tell the difference between a patient and a bad guy. Year after year, the line just seems to become more blurred.

The truth is, law enforcement isn’t taught what a patient is/does. They’re taught to hunt the bad guys-often deceptive, often going to great lengths to get pain treatments that should go to seriously ill people. So how does the DEA see a person with pain like any other sick person?

That’s where advocacy comes in. It’s our job to help them see us as victims in the drug war. And, that’s not exactly an easy task! Good patients, good doctors and even good pharmacies have been wrongly accused. And it can take thousands of dollars to prove your innocence. (In the case of patients, the degree of stress involved can also be life-threatening.)

It’s an important issue with no easy answers, but I’m glad we all worked together and got our meeting with the DEA. I think we made an impression by telling our stories and sharing our concern for other people, just like us. Obviously, a single discussion won’t change people’s hearts & minds. That’s why we never give up!

My fellow advocates are incredibly dedicated–doing all they can, fearlessly and tenaciously, for the benefit of all people with pain. I couldn’t be more proud to be a pain advocate!

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.

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

Support California’s Anti-Fail First Bill, AB-369: Send Your Letter Today

21 Apr

by Heather Grace, IPJ Staff Writer

The deadline to get your comments to Legislators regarding AB 369, the ‘Fail First’ bill, is rapidly approaching. My letter is enclosed, below. Won’t you share YOUR story, too?


April 21, 2011

Dear Legislators,

I am writing you today to request that you support AB 369. This legislation is critical to ensuring that medical decisions regarding prescriptions and treatments for pain are made by the direct patient care providers (physicians, nurse practitioners and physician assistants), and not insurance administrators.

AB 369 will help medical professionals do what they do best practice
health care. Step therapy or “fail first” therapy occurs when an insurer requires that other therapies must be tried and must fail, before people with pain can obtain the appropriate treatment, recommended by their physician.

AB 369 will save countless people from permanent disability. I know, because I am a victim of Step Therapy in the CA Worker’s Comp System.

I spent over 9 years working for a medical education company. I started
out as an Intern. Thanks a lot of hard work and dedication, I soon became the company’s Webmaster, as well as Web Department Manager. I loved what I did, truly!

I never dreamed that a spinal injury would change my life forever–especially because it didn’t have to. When I realized something was wrong with my neck (in addition to neck pain and headaches, my arms were going numb) , I did what I was supposed to: I told my employer. Their Workers Compensation carrier examined me and did an x-ray. Seeing no broken bones, they announced it was a ‘soft
tissue injury,’ even though I had a nagging feeling it was something
worse.

It took OVER TWO YEARS of heat, ice, physical therapy and Tramadol for
anyone to listen to me. When I finally got an MRI, I was relieved. There was a disc pressing against my spinal cord, causing the numbness. I had an answer! Now they would patch me up, good as new, wouldn’t they? A simple surgery could make things right again. Except, that’s not what happened…

Instead, I got… more of the same. Nerve glides, physical therapy, acupuncture, occupational therapy, over-the-counter medication, muscle relaxers, non-opioid pain relievers, stretching machines, home exercises, TENS units, sound waves, spinal decompression, ultrasound.

It was enough to make me want to lay down and die. I had been working
through all of these useless steps, trying to keep as normal a life as
possible as I was slowly being driven insane, with pain. There was no
rhyme or reason to any of it–it was just a bunch of stall tactics. What did they think would happen? Would I spontaneously heal?

By the time I got disc replacement surgery, I was dropping things. I was useless physically, and the pain was getting worse and worse. I was scared,
confused, mostly really depressed. I’d lost my dream job to a ‘layoff’–my employer got tired of waiting for me to get back to ‘normal.’ This only gave me more time to think about how miserable I was! It felt as though the Work Comp system’s steps were really a bunch of hoops. And, I was too sick to jump through them anymore.

Fail first in the Workers Compensation system is truly akin to medical neglect! No one’s ever that concerned if a certain treatment does not work. Being in a holding pattern–one useless treatment after the next–was hell on earth. I was in such severe pain, I was SUICIDAL. My WC lawyer said his hands were tied. The WC doctor said it was up to the insurer. The insurer refused to give a ‘yes’ or a ‘no’ to a question that should have been a no-brainer.

From the time I reported my injury til the time I got the one treatment
that would actually help–disc replacement surgery–took SEVEN LONG YEARS! That length of time in Worker’s Compensation without the appropriate therapy should be criminal! By the time my surgery was granted, it was too late…

Most people agree that the best they can ask at the end of their lives is a peaceful death. So many people don’t realize that it is possible to live with severe constant pain for years–or worse, for the rest of your life, due to step therapy.

Only when I decided to leave the Work Comp system and seek out a doctor
who could treat my pain, did I find any humanity. Finally, I had a doctor that focused on my symptoms–he was not bound by red tape. Still, he had bad news: because my spinal cord injury has gone untreated for so long, I had developed a nerve injury. There would be no cure for me, the ‘system’
and its hellacious steps had seen to that. I was destined to live with
this pain, indefinitely.

I will remember that day for the rest of my life. I was 33, and I had been in constant pain for almost 5 years. Though I was glad to finally have answers, I never expected I would be
permanently disabled by pain!

There *IS* a fate worse than a painful death, and I am living it. I’ve been given a life sentence, forced into a lifetime of pain. My sin? Trusting a system that did not care if I lived or died. I had begged, pleaded for their help. One WC Adjuster actually quit–I would like to think it was because of the guilt he felt over his part in my case. I told him I was suicidal due to the severity of the pain, and I still didn’t get surgery for another four months!

I’ve been coping with constant pain for nearly a decade now, and I am not even 40 yet. I’ve been in severe constant pain for so long, I cannot remember what it is like to be without it. People take for granted a life lived without pain and I am facing another 40 years of Intractable Pain.

Am I angry? Feel cheated? Sure, absolutely. I wish I had recourse for
what was done to me–a way to prevent WC from doing this to anyone
else, ever again. All I have is my story and the will to fight. And, you have the power of this bill in your hands. Please put an end to the nightmare of ‘fail first.’

You have the power to right a horrible wrong. Maybe not for me, but for
others who are destined to go down the same road I did. Though I am
thankful for good pain management, my life just isn’t the same. CONSTANT, SEVERE PAIN has taken away my ability to work a normal 40-hour per week job. It prevents me from being the productive person I once was. Though my heart and mind are stronger for what I have been through, I am a prisoner in this worn out body.

Now more than ever, we need AB369! PLEASE, HELP PREVENT STEP THERAPY
FROM DISABLING ANYONE ELSE.

Improper or inappropriate care invariably leads to more persistent
illness and complications, which is far more expensive in the long run. True health care cost containment can be realized with bills like AB 369. Restoring a much needed balance in the provision of appropriate health care is good for everyone. Please give this bill your support!

Thank you,
Ms. Heather Grace
CA State Leader
American Pain Foundation
Twitter @intractablepain

CALIFORNIANS:
Want to share your story, and help your legislators understand what AB 369 means to you? Visit http://action.painfoundation.org/site/MessageViewer?em_id=13221.0&printer_friendly=1 to send your letter to legislators, instantly!

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

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