Can Trump Make Healthcare Great Again?

By Barby Ingle, Columnist

As a chronic pain patient, I know that the Affordable Care Act (ACA) has not been so affordable for some people. Here in Arizona, monthly insurance premiums are going up 75 percent and the national average is seeing a double digit increase.

Running a foundation for the past decade, I have heard many stories of patients unable to afford proper and timely healthcare. Since the enactment of Obamacare in 2010, I've heard even more stories of regret, loss of care and rising costs. Premiums have gone up so much that many would rather pay the penalty for not having insurance, instead of getting it.

I am not sure if President-elect Donald Trump can "repeal and replace" the ACA in a timely manner. It will take an act of Congress to completely repeal ACA and eliminate the individual mandate.

We need to broaden healthcare access for all Americans, especially those of us living with chronic illnesses. Let’s look at the 7 steps proposed by Trump during the presidential campaign.

1. Completely repeal Obamacare and eliminate the individual mandate. No person should be required to buy insurance unless he or she wants to.

I agree with not mandating the purchase of insurance, but I also see why it was put into the plan. It was thought if we force everyone to pay into the system, it will be easier to bear the costs of caring for the elderly and disabled. 

Current enrollment for Obamacare shows that less than 12.7 million of the 40 million without insurance are now covered. That's progress, but even with subsidies, many people in pain (not on disability) are unable to afford coverage. Also, many with insurance were cut from their long-time providers as their plans were no longer accepted by the provider.

2. Modify existing law that prohibits the sale of health insurance across state lines. As long as the plan purchased complies with state requirements, any vendor ought to be able to offer insurance in any state. By allowing full competition in the market, insurance costs will go down and consumer satisfaction will go up.

This is one provision I would like to see. I travel currently for my pain management care. I would like to see the sale of health insurance across state lines, as I believe it will offer me better in-plan coverage. Paying out of network is very costly for patients like myself.

As we allow the free market to play a bigger role, we must also make sure that no one slips through the cracks simply because they cannot afford insurance. We must review basic options for Medicaid and work with states to ensure that those who want healthcare coverage can have it. I don’t believe that basic Medicaid covers enough treatments for chronic pain patients.

I would also want multiple patient representatives and caregivers to play a role on boards and advisory committees that make these decisions. There is no plan in place for the involvement of the patient voice that I am aware of.

3. Allow individuals to fully deduct health insurance premium payments on their tax returns.

I would like the ability to fully deduct my health insurance premiums. Businesses are allowed to take these deductions, so why wouldn’t Congress allow individuals the same exemptions?

4.  Allow more individuals to use Health Savings Accounts (HSAs). Contributions to HSAs should be tax-free and should be allowed to accumulate from year to year. These accounts could become part of the estate of the individual and could be passed on to heirs. HSA funds could then be used by any member of a family without penalty. 

As someone who has participated in an HSA in past years, I found that they were not a benefit for me as a chronic pain patient. I spent everything in my HSA account as fast as it went in from my husband’s paychecks.

But for others who don't have to worry about paying for long-term chronic care needs, I have seen the HSA system work and help spread out costs throughout the year. HSA accounts would be particularly attractive to healthy young people with high-deductible insurance plans.  

5. Require price transparency from all healthcare providers, especially doctors and healthcare organizations like clinics and hospitals. Individuals should be able to shop to find the best prices for procedures, exams or any other medical-related procedure.

I believe in 100% price transparency from all providers, insurance companies, pharmacies and hospitals. We should be able to easily see the costs of our care.

6. Give Medicaid block grants directly to the states. Nearly every state already offers benefits beyond what is required in the current Medicaid structure. The state governments know their people best and can manage the administration of Medicaid far better without federal oversight. States will have the incentives to seek out and eliminate fraud, waste and abuse.

I like this as well. Giving each state the ability to fund and provide their own Medicaid benefits will be beneficial. We have to cut down on fraud and get proper and timely access of care to those who need it most.

7. Remove barriers that prevent foreign drug makers from offering safe, reliable and cheaper products. Congress will need the courage to step away from the special interests and do what is right for America. Allowing consumers access to imported and cheaper drugs will save money.

We need more abuse resistant medications, along with drugs that are more affordable. I agree that allowing consumers access to imported drugs will give us more options and help cut prices.

These seven steps are just the start of what we need to make the system work better. The process will take years to figure out. Let’s keep our voices loud as patients and advocates, so that we keep the good parts of our healthcare system and increase access for those who need it by lowering costs and opening access to alternative treatments. We also need to address the abuse of opioid medication, while maintaining access for those that truly need it. 

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

CDC Satire Gets Taken Seriously

By Pat Anson, Editor

Everyone likes to be in on a good joke, but an article recently published online as medical satire is being taken seriously by some pain patients and healthcare professionals.

The article, published by Gomer Blog, claims the Centers for Disease Control and Prevention has released new recommendations urging doctors to ignore patients who have a pain score greater than 4. Pain levels are commonly measured on a scale of 1 to 10.

The Gomer Blog story even has a purported quote from the CDC's director:

“Look, here’s the deal.  When you say your pain is 1, 2, 3, or 4, that’s actually believable to health care providers, so we’ll give you Tylenol, maybe even an NSAID,” explained the Director of the CDC Dr. Thomas Frieden.  “When you start getting into that 5 through 9 territory, it starts getting a little suspicious.  And we all know that pain of 10 or greater than 10 is, well, honestly, just bullsh*t.  So greater than 4?  Ignore.”

That would be funny, except for the fact I can actually see Frieden saying that.

Another quote from the story is from a fictitious doctor:

“In today’s health care climate half of my day is spent arguing with patients about opioids,” said primary care physician Jamela Wilson.  “The other half of my day?  Arguing with patients’ significant others about opioids.”

I could see an actual doctor saying that, too.

Not a word of the Gomer Blog story is true. But in the current Bizarro World of pain care -- where Medicare is afraid to ask patients about their pain treatment, the CDC hires a PR company to improve its image, and the DEA declares kratom an "imminent public health hazard" and then decides maybe its not -- well, some people have trouble sorting fact from fiction. And who can blame them?

“Is this true? I'd love to see you guys write something about this,” asked one PNN reader, who included a link to a nurse’s training center in Florida that republished the Gomer Blog story on its website.  

The FTC Training Center, which says that its mission is “to support the lifelong education of nurses,” never mentions that the Gomer Blog story is meant as satire. The post was made by Florvilus Nessley, a program director at FTC, who offers training and certification for nurses on hepatitis, dementia, the Zika virus, urinary tract infections and therapeutic hypothormia. Interesting curriculum, Florvilus. 

Calls and emails to the FTC Training Center were not immediately returned, as they say.

Gomer Blog describes itself as a “satirical medical news website created by a bunch of wannabe stand up comedians who ended up in healthcare.”

Recent Gomer Blog posts include articles about an infectious disease clinic handing out free chastity belts and hospitals blocking TV coverage of the presidential election to promote healing.

I can see that happening, too.

Safety Tips for Living with Ehlers-Danlos Syndrome

By Ellen Lenox Smith, Columnist

Living with Ehlers-Danlos syndrome (EDS) is a lifelong process that requires constant monitoring on how to remain active, yet also physically secure and safe.

EDS is a condition that leads to deformed connective tissue, the “glue” that holds the body together. Any sudden move or jolt, and your muscles and joints may come apart.

There is no cure for EDS, so living life with this condition means accepting a certain level of chronic pain.

I want to share some safety tips that I have learned that I hope will help others, like myself, who have EDS.

Car Safety

To prevent your sacrum from shifting out of place while getting into and out of a car, it is best to find a car seat where you do not have to either dip down or lift yourself up when getting into the seat. If you can just slide into the seat, you have the best chance of staying in position.

We ended up with a Prius recently and I realized I had to have the seat changed. Although the height was correct, I had to lift myself into the seat due to the design that sinks in from a lip on the side. We were able to find a person that could reconstruct the seat, making the entire surface flat.

To get into the car with the least chance of slipping out of position, I sit down on the seat, turn towards the front of the car and then I swing my legs into the car.

Check and see where your legs are when you sit down. It is best if they are at a ninety degree angle, not above your waist or below. The best way to judge may be to focus on your knees. If they are higher than your hips, you are probably in trouble.

Reaching

If you are sitting in a chair and something drops to either side, for many of us with EDS, the most damaging thing we can do is lean over to the side and reach down to pick it up.

That will cause what is called an "up-slip," where the femur jams up into your hip. It does not hurt at first, but tends to show up the next day and is very uncomfortable. To check if you have created this problem, lie on a bed, arch up and then gently put your legs down. Have someone check to see if your ankle bones meet. If there is an upslip, there will be a difference in the leg lengths. Get it corrected as soon as you can before it creates significant pain.

Opening Cans

Using downward pressure while attempting to open a can with a can opener can cause you to potentially sub lux your hand, fingers, elbow and/or shoulder. A simple fix to this is to purchase a product called the Handy Can-Opener. All you do is set it on the top on the can, press a button and let it do the magic of opening the can for you!

Sleeping Safely with POTS

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia, a condition that causes light-headedness, fainting, unstable blood pressure, abnormal heart rates, and sometimes even death.  I learned I had it in my 60’s.

I was instructed to sleep at a 30 degree angle by raising the entire frame of the bed at the head. At home, this is a simple process to do by putting boards under the frame. But what about traveling and staying in hotels?

We found out from a physical therapist that there are bed raisers sold that college students use to raise their dorms beds up to be able to store items underneath. We purchased four plastic bed raisers and found that if we use two on each of the head corners, we are able to raise hotel beds up for me to simulate some of the height we have at home.

It is not as high as my bed, but certainly better than sleeping flat with POTS. You might want to check with the hotel or motel to ensure access to a bed which can be adjusted in this manner.

Greeting Friends and Family

If you are like me, when others see you, they assume you are fine and don’t understand that a simple hug can cause subluxations. Many times, when my husband is with me, he will warn others to not touch me.

The hardest thing is when I am by myself and someone throws me off and suddenly is greeting me with a hug. I almost wish I could wear a sign that says, “Do Not Touch.”

Try to stay vigilant and ward off the damage that comes when someone who means well greets you, only end up hurting you my mistake.

Twisting

I was taught in physical therapy that when you twist, you must move from the hips. I made the mistake of twisting just from the waist and proceeded to sublux my back out. With EDS, when you throw something out of place, it can take weeks for it to settle down and hold properly again.

When sitting, It is also important to not cross your legs, for this can throw your sacrum out of place.  

Shoes

If you have flat feet, getting good arch support is a must. Also, if you are having problems with your legs and/or feet subluxing, then wearing sneakers with the arch support inside them is the best bet. Also find sandals that have a good arch when you are not able to wear sneakers.

Trachea and Neck Stability

I have spent many years dealing with a trachea and sternum that shifts out of place. Despite sleeping with a bi-pap breathing machine,I have had many episodes in which my breathing was cut off. My lifeline at night for many years has been my service dog alerting me when the air flow has decreased or cut off.

I am now a proud owner of a new pillow another EDSer discovered that is holding the neck and head in the correct position and not allowing the trachea to collapse. I would encourage you to give it a try. It is called Therapeutica sleeping pillow and mine came from Core Products International.

Be sure to get the correct size. I had to exchange mine down to a child’s size to correctly stabilize the head.

Carrying Objects

For most of us, as we progress with EDS, holding items in our arms is painful and can cause more issues. While I was still teaching, I finally resorted to buying a luggage with wheels, like you see in the airport.

I don’t know why I hadn’t thought of that sooner. I used to carry 125 students essays and my books up to the second floor of a large school. I would ache for days after doing it. But once I switched to pulling the bag, life had a positive change. Today, I pull my swim items into the pool and can be more self-sufficient this way.

I hope these tips will be of help and hope you will comment and leave tips you have discovered. We need to help educate each other for a safer and less painful life.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

How to Improve Self-Care and Coping at Home

By Barby Ingle, Columnist

Whether you are in pain or caring for someone in pain, it often seems the weight of the world is on your shoulders.

Want to know some ways to lighten that load?

The Chronic Care in America survey was conducted by Harris Interactive in 2002, but still holds some valuable lessons.

The survey of over 3,000 chronically ill patients found that those who were who were organized and made lifestyle changes at home were more likely to be free of depression and to live healthier lives.

They were proactive and knowledgeable, and firmly believed their lives still had value and purpose.

I have my own list of things that I’ve done at home to improve my self-care and coping skills over nearly 20 years of living with chronic pain diseases.

The Bedroom

In the bedroom, the most used room in the house, I created a blanket support frame so that the weight of blankets or sheets does not rest directly on my feet.  I used a body pillow for $7 from Walmart and put it at the bottom of my bed. The sheets and blankets go up and over and keep me warm, but without physical contact with my feet.

You can also install blackout curtains in your bedroom so you have a quiet and dark place where you can retreat during breakthrough pain, migraines, etc. I did this throughout my entire house, which has helped so much on my severe migraine days. For safety, I added nightlights throughout the house so I can still walk around.

Keep commonly used items close to the bed for easy reach (remote control, medications, cup of water, reading materials, etc). Keep the floor from being cluttered to avoid tripping and falls. I even removed area rugs after a few trips and falls myself.

We all know how important sleep is. Keep your bedroom ventilated. Being too hot or too cold can interfere with quality sleep. Make sure your mattress is comfortable and use pillows that provide support as needed.

The Bathroom

The second most used room in the house is the bathroom. I found that drying with smaller towels so the weight of the towel doesn’t wear me out or drag across painful areas is extremely helpful. I also put small towels between me and the shower water when taking a shower, as the water drops can feel like thousands of needles poking me.

We also installed grab bars in the bathtub, shower and next to the toilet for when I am off balance and or having a migraine that has me seeing double. We also put a shower bench into the tub. I love it and so does my husband. This helps save energy pennies. Showers and baths can be one of the most draining activities we face.

My husband got me a hairdryer stand as a Christmas present a few years back. It is great -- no more having to try to hold my arms above my head. I can just sit in front of it and dry my hair with no effort. My dentist also suggested an electric toothbrush which has helped me improve my dental hygiene. And for the worst of worst days, I soak in Epsom salt baths to relax

The Kitchen

The third most used room of the house is the kitchen. I suggest you come up with easy to make recipes that are good for you and that you like. I found crock pot cooking is a great way to have a good meal and they’re easy to prepare.

Keep commonly used items at waist height so you don’t have to reach, which can increase pain and use up energy pennies. We switched out our smaller kitchen knobs for large knobs on the appliances and cabinet doors so they’re easy to open and close. Lightweight dishes and pots, as well as paper and plastic plates and cups, are also easier to use and inexpensive. They also have the bonus of when you drop them there is no glass to clean up.

Long handled brooms, dustpans and sponges make cleaning easier, and long-handled "grabbers" make it easier to reach items on high shelves or picking them up from the floor. Turntables on kitchen shelves make it easier to reach items in the back. My husband helps me split larger food items or food needing to be prepared in Tupperware. And my favorite kitchen tools are the electric can and jar openers.

I hope you find my tips helpful and that it sparks some ideas of your own so you can organize your own home. The goal is to have better daily living, spend less energy pennies, and have more time to do things that you actually want to do.  

You are worth the investment in yourself! It’s easy to put these steps on the backburner, but taking the time and energy now can help you feel better and may even help you live longer.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Miss Understood: The Oska Pulse Trial

(Editor’s note:  Several weeks ago we were contacted by a representative for Oska Wellness, a San Diego company that makes the Oska Pulse, a wearable device that uses Pulsed Electromagnetic Field technology (PEMF) to treat pain. According to the company, the device dilates blood vessels and releases the body’s natural endorphins, which “has been shown to reduce joint and muscle pain by reducing inflammation.” It sells online for $399.

The company was invited and agreed to provide an Oska Pulse at no cost to PNN columnist Arlene Grau for a test run.)

oska wellness image

By Arlene Grau, Columnist

As many of my fellow pain sufferers know, when it comes to finding relief most of us are willing to try anything. In order to relieve my pain I go through a long list of pain relieving strategies, including a TENS unit, opioids and pain patches. So adding the Oska Pulse wasn’t anything new, especially since the directions were so easy to follow.

In the first weeks of treatment, it’s recommended that you use the device 4-6 times a day for half an hour. Although I don't work due to my being on disability, I'm still a busy mother of two, so this seemed a bit much for me. But I followed the guidelines to get the most out of my experience.

The Oska Pulse is very easy to use. You simply wrap it over the area you want to target, push the button, ensure it beeps and lights up, and the device does the rest. You don't feel or hear anything while it's on, except for when it shuts off, which is kind of nice because you can either relax while you wear it or go about your business. I used it for both my lower back and right hip.

After about a week, I was able to get some pain relief from the Oska Pulse. I wouldn't necessarily compare it to the relief I get from opioids, but it was enough to make me feel like I didn't need to take prescription drugs every 4 hours (which is a triumph). I only took them at bedtime or once or twice for breakthrough pain during the day.

I found that wearing the device 2-3 times in the morning when my back pain and hip are usually at their worst gave me the best results. Then I would wait a few hours and wear it again for one interval. At bedtime I would lay in bed and wear it another 2-3 times.

With the exception of how often I needed to use the device, which is what I think some people may be turned off by, I think the Oska Pulse really helps.

For those of you who work, you can actually wear the Oska Pulse over your clothing and still feel the effects of it. The benefits outweigh the inconvenience of wearing it.

I originally thought the Oska Pulse was not going to work for me, since I'm used to the TENS unit shocking my body and actually feeling something happening. You don’t really “feel” anything when the Oska Pulse is on, but I felt a difference after every use.

In my personal opinion, I think the Oska Pulse did a great job at temporarily relieving my pain and minimizing my inflammation.

Arlene Grau lives in California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Pain Companion: Overcoming Victimization

By Sarah Anne Shockley, Columnist

One of the most challenging things about being in chronic pain is the powerlessness we often feel because we are unable to heal our bodies and stop the constant pain.

We may feel victimized by our conditions, pharmaceuticals, invasive procedures, the impersonal nature of most institutions, and even our own bodies.

We may feel we are at the mercy of an interlocking system of agencies and organizations, one or all of which may not present a caring or compassionate face. Medical and insurance forms, appointments, tests, procedures, and legal hearings don’t take into account that we are not at our best physically, mentally and emotionally.

Yet we may blame ourselves if we are not on top of the situation or able to answer questions clearly and accurately.

Sometimes, being ill or injured feels like a crime committed by us!

Take Responsibility

Believing that others are responsible (or guilty) places them in a position of power – leaving you to become the victim. To leave that feeling of powerlessness behind, I decided that, regardless of the circumstances of my injury, I was responsible for my situation from that point forward.

I declared myself at the center of my own emotional and physical well-being and recovery. I decided not to accept an outside source as the final authority, no matter how credible. I knew that I was the one who would ultimately heal myself anyway, regardless of the method used.

That decision alone, while not bringing with it an instantaneous and miraculous cure, at least afforded a measure of relief and a feeling of having more access to different choices, rather than living entirely at the mercy of outside authorities and systems.

Notice What You Can Control

In an effort to feel less at the mercy of outside forces and more in control of my life, I started noticing what aspects of my life were still under my control.

I noticed the decisions I was already making and congratulated myself for them. I also looked at the ones I could take back -- that I had handed over to others because I didn’t know I could make them for myself or felt I didn’t have the knowledge or strength to make on my own.

Instead of following along with everything suggested by medical practitioners without question, I took authority back for myself and became part of the decisions about medications and treatments.

Choose Your Own Path

I decided that I was in charge of my own healing path. I became as knowledgeable as I could about my condition and what modalities were available, so that I could make informed decisions about my treatment.

I researched alternative therapies, natural healing, recent studies and the latest medical breakthroughs. I read blogs and stories about how other people were coping with my condition, and how some had made improvements or found ways to cure themselves.

I looked into what I could can do for myself: How improving my diet could help healing, how I could think more positively, what herbs and supplements might be beneficial, how I could reduce the amount of stress I was under, and how I could get more restful sleep.

Some of these things made only small changes in the amount of pain I was in, but doing them gave me a greater sense of direction in terms of finding ways to live with and ease my pain. It felt empowering to make my own choices, instead of putting my condition and my pain at the helm all the time.

Living with constant pain can make you feel powerless. It’s easy to feel that you have lost control over your own destiny. But thinking of yourself as a victim of pain or a victim of circumstances does very little to help you move toward whatever healing is possible for you.

Deciding to take control of whatever is in your power, taking responsibility for your own healing path, and making conscious choices toward increased well-being on a daily basis can help relieve feelings of victimization and powerlessness. And it allows us to be more fully available to new possibilities that may come our way.

Sarah Anne Shockley suffers from Thoracic Outlet Syndrome, a painful condition that affects the nerves and arteries in the upper chest. Sarah is the author of The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain.

Sarah also writes for her blog, The Pain Companion.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

How Positive Thinking Helps Me Cope with Chronic Illness

By Ellen Lenox Smith

Recently, I had a column published on tips for coping with gastroparesis – a digestive disorder that interferes with the movement of food through the intestine.

Despite my research and best efforts to try all the advice I gave, I continued to have no success with elimination. My life was weekly colonics, along with home enemas on the other days.

After six months of my gut essentially being shut down, I finally went to a new doctor, to find out that the diagnosis of gastroparesis was incorrect. I was dealing instead with “motility issues” caused by Ehlers-Danlos syndrome.

Feeling frustrated and discouraged, but also determined, I decided to try one more alternative treatment to see if I could find some relief.  

I found my old DVD of the “The Secret” and forced myself to once again listen carefully to what was being described, to see if this could turn things around. I had used this process before when I first had to retire, as I was experiencing excessive stress relative to our financial situation. I was so concerned how we would survive financially without my income.

Watching the DVD, I learned to understand that energy flows where attention goes, and that life is a product of our thoughts and feelings. It seemed nuts to me at the time, but I had nothing to lose and everything to gain if the process worked.

ellen lenox smith

I began to focus on wanting to have enough money to pay our bills. And strangely enough, within a month, that stress over money seemed to leave me and I began to trust that things would fall into place.

Today, ten years later, I have remained calm about money, which still shocks me! This was not who I was before.

Now I was back to the drawing board to see if this could turn my motility issues around. Since energy flows to what you focus and think about, you have to train yourself not to focus on what you don’t want, but on what you are grateful for andwant in life.

To give this a try, I was to wake up each morning and spend a few minutes in bed thinking about what I am grateful for and then visualize what I want in life. Since it seems harmless and I needed help, I decided to try this process again.

About three weeks ago, I started doing this visualization, remembering what it was like to feel the sensation of having to eliminate and also the process of feeling the release. I know this sounds somewhat irrational, but after six months of nothing working, I was game for anything.

Within three weeks of trying it, I began to not only feel the sensation, but actually began to have success with elimination. All seems to be “on go” unless I eat foods that I react to or I’m under stress, both of which cause the GI system to shut down.  

My system has only shut down three times in the past three weeks. Something is changing and the results are thrilling and fill me with new hope.

Focusing on the positive and pushing negative situations out of the mind is not easy. Just look at the evening news! We wait until the end of the national news for one piece called “Making a Difference” that ends the broadcast with one positive report. Why don’t we sit and watch all positive things that have happened that day?

“The Secret” states: “Everything we think and feel is creating our future. If you’re worried or in fear, then you’re bringing more of that into your life throughout the day.”

What do you have to lose to give this a try? I now no longer stress about money and have added a successful movement of my gut again after six months of no success. I love how much more positive and hopeful I am feeling by practicing this simple process. Future goals to try will be imaging a walk on sand and in my yard,. along with driving again.  

Over the past eight years, I have utilized many conventional treatment modalities. Not all have proven successful, but I feel that I owe it to myself and my family to explore any treatment which might enhance the quality of my life.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A Pained Life: Show and Tell

By Carol Levy, Columnist

I’ve written before about Susanne Main’s Exhibiting Pain research project --- which looked at creative ways to express the chronic pain experience. I was happy to contribute a picture that conveys how quickly pain from trigeminal neuralgia can strike.

The Exhibiting Pain project recently ended, but before closing participants were asked if they had ideas for more research or collections.

My thoughts on the question turned to my own experience trying to get a diagnosis and help for my facial and eye pain.

Because of an insurance issue I had to go to a hospital clinic for over a year. Every visit was the same. I saw a medical resident, sometimes the same person, sometimes not. Regardless, the visit always followed the same script.

“I have terrible pain in my face,” I would say, while pointing a finger towards my face and drawing a circle around the painful area. Because of the horrendous pain triggered by any touch, I made sure not to come in contact with the skin.

The resident would look at me. Then he would shrug his shoulders or shake his head.

“I don't know what you have,” he’d say. “Maybe it's psychological.”

Other residents were dumbfounded and would send me home with a verbal pat on the head. I literally had to cry during a phone call with one resident before I was finally prescribed pain medication.

As many times as I showed up for my appointments, at least once a month, sometimes more, I would always say the same thing: “This is where the pain is.”

My finger never varied from the circle I drew the first time they saw me, and their answer never varied: “I don't know what you have.”

One evening I finally got a diagnosis. The only problem was it came while I was on a date with one of the ophthalmology residents. We were touching. My date lifted his hand and brought it up towards the left side of my face.

I yelled out: “Don't touch me there! You’ll set off the pain.”

He looked at me with a strange expression. “Exactly where is the pain?” he asked.

I mapped out the same area for him that I had at the clinic, for him and all the other doctors I had seen.

He sat up and stared at me.

"I know what you have. You have trigeminal neuralgia.”

It was surreal. His diagnosis was horrendous and scary. And we were on a date for goodness sakes. Why now? Why not tell me that in the clinic?

I never varied in the area I indicated and described, no matter how many times and how many doctors I saw.  For some unknown reason, it was apparently ignored. I would later learn the area I showed them was the exact anatomical map of 2 parts of the trigeminal nerve. In fact, I was a textbook case.  So why did they ignore me?

That I can't answer. But Susanne Main's work has led me to a conclusion: What if doctors asked to see a drawing of where the pain is located and how it feels? Would they be so quick to dismiss it, to not hear what we are trying to tell them?

Maybe the visual is what is necessary to open their eyes. And their ears.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Tips for Managing Your Meds

By Barby Ingle, Columnist

When it comes to managing medication, the more you know about your medical condition the better equipped you’ll be to understand which drugs to take, the side effects to watch for, and when to take them. It is also a great idea for your caregiver to know.

There are many times when I am not doing well and my husband will say, “You seem dizzy. Have you taken XXX yet? When was the last time you took it?”

Or he’ll say, “We are going to go out later to get groceries, so take your pill now so you won’t be sleepy when we go and you will be more comfortable.”

Having someone there to help me is great, because sometimes I feel so awful that I cannot remember to take my medication or even what I have taken. I have overdosed on different medications a few times because I forgot I had already taken a dose.

Here are some tips I’ve learned to manage my medications safely:

1)  Use a pill organizer to keep track of your medications. I have a pill box for a two week supply separated into morning and night pills.

2)  Keep medications without childproof caps away from children or lock them up, especially if you have opioid pain medications.

3)  Take your pills at the same time each day, especially when medications are time-released versions. This helps to keep the level of medication consistent in your body.

4)  Know why you are taking each medication, how best to take them (before or after eating), and any side effects that you may experience. Find out what your doctor wants you to do for each medication and verify it with your pharmacist.

5)  Be sure to never break or split time-release pills. Breaking the seal can be very dangerous as your body can receive the dose of the whole pill too quickly and it can become deadly.

6)  Carry a list of your medications and doses at all times in your purse or wallet. You should also update your pharmacy records to include all of the drugs that you take, including any over-the-counter medications. I use Walgreen's and they have a great online site that allows me to update it from home.

7)  Do not drive under the influence of medication that affects your cognitive thinking. It is also a good idea not to drive while taking medications that cause drowsiness or when you are distracted by pain.

8)  If a medication is making you sick or causing side effects that you cannot tolerate, talk to your physician about adjusting the dose or changing the medication. If side effects include trouble breathing, a rash or more severe symptoms, head to a local emergency room for immediate assistance.

9)  Read prescription labels and inserts carefully. They contain important information such as the medication’s name, dosage, prescribing doctor, and expiration dates. This can help you avoid taking a medication for too long or having adverse effects from long-term use.

10)  If you are a drinker, be sure to discuss with your provider or pharmacist if it is safe to drink with any of the prescriptions or over-the-counter medications you are taking.

11)  If you have more than one doctor prescribing medications, be sure to tell all of them what you are taking, so they can be alert to possible interactions and complications. I had to do this for myself and have not had these issues since.

12)  If you decide you no longer want to continue a medication, get your provider’s guidance before you stop taking it. Some medications can be stopped immediately, but many require you to titrate or taper off them.

13)  If you discontinue a medication, be sure to dispose of it properly and immediately. You should also dispose of medication once the expiration date has passed. The FDA has a list of disposal recommendations you can see by clicking here.

Some medications such as inhalants have hazardous material disposal requirements. Follow the specific disposal instructions on the drug label. If no instructions are given, you can crush and mix medications with coffee grounds, cat litter, or food scraps. Then seal them in a bag or a container (such as a margarine tub or jar) and discard them in the regular trash.

Many pharmacies and law enforcement agencies have “Drug Take Back” events that you can participate in. Find out more from your local pharmacist or police station.

Following these tips will keep you, your loved ones and your community safer.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A First Time User Says Kratom Works

By Fred Kaeser, Guest Columnist

Like many of you, I have been following closely all of the kratom related articles here at PNN over the past month.

Prior to these articles, I had heard the name kratom several times in various readers' comments, but quite frankly I had no idea what kratom actually is. But all that has changed and it changed very quickly.

Truthfully, I was dumbstruck by the many comments praising the supposed wonderful pain reducing qualities of kratom. And when I read the results of PNN's kratom survey, I was convinced to explore as much information as I could about this leaf.

Admittedly, the kratom survey was very far from scientifically valid, but the results were astonishing to me. Virtually every one of the 6,000 or so respondents claimed this leaf to be a miracle worker. Not just for pain, but for various emotional and mental illnesses, and for opioid and even alcohol withdrawal. The more I read and researched the kratom leaf the more tempted I was to try it.

I have been in severe, daily pain close to ten years now. Those who have read my previous columns here at PNN, including my comments to others' articles, know that I am prescribed opioids for my pain. They also know that I am concerned about the various risks associated with my opioid use, and also know that I am a huge supporter of complementary and alternative pain therapies. 

I respect and am very appreciative of my opioid prescription. Without question, opioids reduce my level of pain and for that I am thankful. But I am also cognizant of the risks, especially the risk for developing a physical dependence to these medications, and consequently I am always trying to minimize just how often I must take my opioids.

FRED KAESER

So, it was easy for me to segue into trying something new to ameliorate my pain. And kratom seemed to fit the bill.

Even with the risk of a kratom ban, I was able to find an online purveyor who was still selling and who I had heard mentioned was a reliable vendor by many commenters on a number of kratom websites. I bought the Maeng Da strain as that seemed to be the best choice for me. I bought the type that is finely crushed and kind of flour-like in consistency. It wasn't too expensive.

Based upon what I had read, as a novice to the leaf, I started with slightly less than a teaspoon in the morning (about 2 grams). I dumped it into some water, swished it around, and chugged it. Some residue was left, so I added some more water, and down it went. Pretty bitter, gritty and crappy tasting. But, truth be told, it was not much worse than the powdered green vegetable supplement I take every day. Kind of like eating bitter, dried grass.

About 30 minutes later I was feeling some energy, an up-lift, and within fifteen minutes more my pain was reducing. I've been taking kratom for a bit more than a one week now and I have since reworked my dose to about 4 grams. This dose does the job for about 6 hours. My pain is still there but is dramatically reduced, and I feel an increase in energy as well. 

I've read about some of the risks associated with kratom, so I've resisted taking a second dose during the day. And after taking it for 3 days in a row I am now taking it every other day. If I was to do a second dose I would keep it to an additional 2 grams, but haven't gone there yet. 

My take is it works as well as an oxycodone 10mg. Kratom works as a wonderful compliment to the alternative pain therapies I utilize and I have not taken it on any day that I do my opioid medication. I am a little concerned about doing kratom every day, as there are stories about developing dependence.

I still have more to learn about kratom. But I definitely see it being as effective as the opioid medication I take. I have even been able to reduce that medication somewhat in just the time I've been using the kratom. I'll see how things progress and I will continue to research and learn more about this leaf.

I can see though that it does the job. I am tempted to give up the opioids and just do kratom, but I'm not there yet. I know what I'm dealing with when it comes to the opioids and I'm still too ignorant about kratom. 

If you have pain, you might want to give kratom a try. It's still early, but I am pretty impressed by what it is able to do.

Fred Kaeser, Ed.D, is the former Director of Health for the NYC Public Schools. He suffers from osteoarthritis, stenosis, spondylosis and other chronic spinal problems.

Fred taught at New York University and is the author of What Your Child Needs to Know About Sex (and When): A Straight Talking Guide for Parents.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

The VA’s Opioid Policy Hurts Veterans Like Me

(Editor’s note: In 2015, Congress passed and President Obama signed into law legislation that requires the Veterans Administration to adopt the CDC’s “voluntary” opioid guidelines, which discourage the prescribing of opioids for chronic pain. Over the past year, the VA has implemented the guidelines throughout its healthcare system, which provides medical services to 6 million veterans -- over half of whom suffer from chronic pain. One of them is Ron Pence.)

By Ron Pence, Guest Columnist

I am a Vietnam veteran who turned to the VA health system in 2001, when I started having pain from polymyositis and chronic arthritis, the worst kind of arthritis caused by autoimmune disease. My own body was attacking my joints and muscles. They said CPK enzyme levels in my blood were very high and in danger of shutting down my kidneys.

Back then the VA cared about vets. I was started on pain meds and they moved me up the ladder as the pain increased.

The head of rheumatology started me on morphine because he said it was the only drug he had to offer. He was right. After 3 pain management visits, 3 more doctors agreed I was on the correct needed dose. X rays of the arthritis in my back ruled out chiropractic care.

I was on the same dose of morphine for 9 years. It worked well enough for me to function and to live alone. The VA promised to continue my opiate therapy as long as I did not break their rules.

After 5 years or so they came out with a new contract and forced us to sign it. I was told either sign it or you don’t gets your meds. I was never accused of breaking their rules and never have. I pointed out the new contract was totally in favor of the VA doing as they please and was signed under duress.

RON PENCE

Now out of the clear blue they cut my dose in half over two months and they may cut it completely because I refuse to take terrible and dangerous psychiatric drugs with the worst side effects. Just search the Internet for “Cymbalta side effects” and you’ll see what I mean.

The VA is really pushing these drugs that I would not give to a dog. They are a lobotomy in a pill. I WILL DIE BEFORE TAKING THEM. They take away your ability to think, speak and make decisions; and come with side effects such as permanent blindness, kidney stones and suicide, even in non-depressed people with no mental problems. Even trying to get off this drug under a doctor's care can end in death for some people. Besides that, it’s nothing more than a sugar pill for the pain.

Why start something like that when what I was taking had no side effects for me and was working fine? I am sure the pills they are pushing will end in a lot more deaths and terrible disabilities and suffering.

My companion almost died after taking Enbril. The VA doctors write prescriptions for Enbril, Humira, etc. as if they were candy. Four shots a month cost $2,000. Far more dangerous than opiates, but someone lines their pockets and the drug companies make over $10 billion a year on them. There is more here than meets the eye.

The CDC in Atlanta says their opioid prescribing guidelines are just that, guidelines. Doctors at the VA must not be smart enough to know what a guideline is. They’re pushing very dangerous, expensive and destructive drugs to replace opioids. Pray and try to find a substitute that works. Doctors sit and lie about what the guidelines say. The stress of not knowing if you are going to be cut off completely is as bad as the pain.

Since the big cutback in my pain medication, I am far less functional. Just standing up 30 seconds to snatch my clothes out of the washer puts me in hollering pain and I fall back into my wheelchair. Cutting the meds even makes it hard to get on the toilet. I am 70 and live alone. My family brings me food to keep me from starving most of the time. I have lost over 90 pounds.

This is going to mean the nursing home for a lot of people like me and I cannot stand the thought of living or existing in a nursing home. Karma is going to get a lot of people making these bad decisions.

I don’t take complaints to Washington because I am old and an 8 mile trip to Walmart wipes me out for a couple of days. This is a fight for the younger guys.

We are in one of the most advanced countries in the world medically, yet the doctors and politicians will not use that knowledge to ease pain and suffering. We have to find a solution.

Ron Pence lives in Florida. Ron enlisted in the Air Force in 1963 – at the age of 17 -- and served his country for 6 years.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Keeping Kids Safe from Medical Marijuana

By Ellen Lenox Smith, Columnist

Frequently, someone will mention to me that they want to medicate with cannabis but won’t even consider trying it due to their children living in the house.

I can certainly understand their concern, but feel there are still ways to administer the medication, get control of your pain and also keep your children safe.

What are the biggest concerns a parent has about using marijuana around children?

1. The danger of cannabis getting into the children’s hands.
2. The smell from smoking marijuana alerting children to what you have in the house.
3. The still lingering issues of society’s judgment of it

How can you comfortably still make use of cannabis with children in the house?

As with all medications kept at home, you always have to be alert for the safety of children. Cannabis is no different. For any medication, parents (and grandparents) should consider locking it up to keep it out of the wrong hands. 

To still be able to enjoy the benefits of marijuana, but without the smell, there are ways to administer it that are just as successful as smoking. Many wrongly assume that is the only way you can use it. 

I only take cannabis as an oil. It is kept in a medicine bottle, measured out nightly and mixed with some applesauce. This is not something that children are attracted to. I always make sure it is a secure spot. I sleep through most nights and generally during the day never need to take any other forms of the cannabis, since it continues to offer me benefits from the nightly teaspoon.

Another effective option is to use it topically. The results are soothing and have shown tremendous relief, even for those suffering with Complex Regional Pain Syndrome (CRPS). We make ours with a peppermint oil extract added to mask the smell. The peppermint also helps  open the pores in the skin to allow for absorption.

Tinctures containing cannabis can be made in either a glycerin or alcohol base. They can be stored in a medicine bottle and used as frequently as needed. One simple teaspoon in the cheek or under the tongue allows for absorption and pain relief. You can also take cannabis as a pill or suppository, and many have learned to make it as a drink or steeped as a tea. 

For more on the different ways to use cannabis, see my column: “How to Use Medical Marijuana Without Smoking.”

Finally, as far as societal judgement goes, as your children grow older, it doesn’t hurt to be honest with them about the benefits you have found from using cannabis to improve the quality of your life.  It is no different than any illness you are coping with where there is a need to medicate. As time progresses, this conversation will get easier as society embraces this safe alternative.

If you are one of those people who is putting the benefits of medical cannabis on hold because of your children, you might want to reconsider your options and allow yourself the relief you need. Remember, unless you take too much, you do not experience the high that people associate with marijuana. A body in pain does not react to marijuana like a body using it socially. You get pain relief and the others get the high.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Why You Should See a Psychologist

By Crystal Lindell, Columnist

The weirdest part about getting psychiatric help is that people notice it.

They notice it in the same way they notice when you lose weight, or dye your hair blue. Like the IT guy at work, who says you just seem more confident lately. Or the friend’s husband who says you seem happier these days. Or the old Tinder guy who finds you on Facebook to comment that you seem so different, so much happier — and even your eyes seem brighter somehow.

I didn’t expect that. When I was in the thick of it, in the blackest night, I didn’t think anyone really noticed how bad it was. I don’t think I even noticed how bad it was. But if they’re noticing that things are better, then it’s probably safe to assume that they noticed how bad it was.

The fact is, getting psychiatric help in this country is depressingly difficult. The first time I sought help three years ago, I had just gotten sick and the pain was so horrific that I had been planning on slitting my wrists in the bathtub.

I finally worked up the courage to tell my primary care doctor that I was suicidal. He referred me to a psychologist who he said worked with people in pain.

But the psychologist refused to see me because she only worked with cancer patients in pain. I apparently wasn’t sick enough for her. So she referred me to someone else, and then weeks later I finally got in for an appointment.

To recap: I literally had a plan to kill myself, and it took weeks for me to find any help.

I’m a well-educated white woman with health insurance. If it’s this hard for me, what are other people going through?

Luckily, the doctor I got paired up with was great and helpful and sometimes a little mean, but always very good at helping me figure out how to deal with all the pain I was suddenly enduring.

The sessions weren’t so much about her telling me what to do, but how to do it. For example, we both agreed that I couldn’t work when the pain was 10/10, but instead of letting it get that bad and then ending up hysterically crying in my boss’ office begging to leave, we came up with a different plan. At the beginning of the week, talk to my boss and agree on days I could work from home. This way there was a plan everyone could feel secure with, and my pain wouldn’t reach 10/10 in the first place.

It seems like little things, but when you find yourself sick, it’s like you’re in a new country and having any sort of map can be extremely helpful.

Even if someone can get an appointment with a psychologist though, AND their insurance will cover it, there’s still another hurdle. A lot of psychologists suck. Just like a lot of doctors suck. And a lot of mechanics suck. And a lot of restaurants suck.

I hear all the time from people who say things like, “I don’t even bother seeing a psychologist, because they aren’t any good anyway. They don’t get me. They don’t help. They just want to get me in and out.”

But people don’t just stop going to restaurants because the Mexican place in town gave them food poisoning. And they shouldn’t just give up on therapy because they had some bad experiences.

Of course, even if you get past all that, there’s still the stigma. There is this idea that if you’re getting mental health help that you’re somehow weak. But getting your brain healthy doesn’t make you weak. It makes you strong. Life doesn’t come with an instruction manual, but getting a neutral opinion from an outside party is almost as good.

These days I see a team, a psychiatrist and a psychologist. The psychiatrist works with me on medical options, while the psychologist offers cognitive therapy to help me navigate my life.

And, honestly, my biggest regret is that I didn’t get help for my anxiety sooner. After going through opioid withdrawal over the last year, I’ve realized that I had been struggling with anxiety since at least my teen years.

It was as if all the pain meds I was on masked it just long enough to show me that there was, in fact, a better way to live. That there existed a possibility for a life that didn’t include waking up literally everyday feeling sick to my stomach, with anxiety attacks on the bathroom floor at work, and obsessing over every little thing.

I confess I was extremely resistant to the idea of going on a long-term anxiety medication, but I’m so glad that I worked with my doctor to find one that works on my brain. And aside from easily bruising, the side effects have been very minimal.

People don’t talk enough about the mind-body connection, but it’s there. And when you’re in pain or dealing with something like opioid withdrawal, getting mental health care may not be the first thing people seek. But it turns out, getting your brain healthy is just as important as getting your body healthy.

In the end, the question that psychology asks is simple: Can people actually change? I have to believe the answer is just as simple: Yes.

And if people can change, maybe the world can too.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

The Importance of Participating in Pain Research

By Barby Ingle, Columnist

Over the years I have participated in many research studies and potential new treatments. One such study was just published in the Journal of Translational Medicine by Drs. Garabed G. Demerjian, Andre Barkhordarian and Francesco Chiappelli.

So many people over the years meet me and soon realize that I have a device called an oral orthotic in my mouth. This “OO” as I lovingly call it has helped me so much, and now there is published research behind what it is doing for me.

Back in 2002 when I developed Reflex Sympathetic Dystrophy, I lost partial vision in my right eye. I saw many eye doctors and ENT (ear, nose and throat) specialists who were unable to pinpoint where the breakdown in the nerves were. They hypothesized that it was due to inflammation from the RSD cutting off a nerve pathway.

Within 30 seconds of putting in the OO, I had my vision back after 10 years of being told that I would never see properly again. My world is now brighter with the OO, literally.

I also had improvement in pain levels affecting my entire body. I have been able to get my infusion therapy minimized to only 1 or 2 boosters a year and get off all daily pain medication. I also have had improvement in my balance, coordination, dystonia, memory and mood. My migraines and headaches are less frequent, and although weather and pressure changes still affect me, it is not to the extent it was prior to my oral orthotic use.

The research doctors and my treating doctor, Garabed Demerjian, approached their study with an individualized approach that they made measurable for each patient who participated. I underwent multiple MRIs, cat-scans, X-rays, synovial fluid testing, psychological testing, and saliva testing.

These tests were done in an effort to quantify the outcome and show the effectiveness of the oral orthotic. I participated in the study in 2015, about three years after getting my OO. I already knew that the tests were going to show amazing results. That is great for the scientific community and for advancing new treatment options.

Traditional research in the health sciences usually involves control and experimental groups of patients, and descriptive and statistical measurements obtained from samples in each group. The research I was part of used a novel model known as translational medicine, which "translates" research into more effective healthcare -- a "bench-to-bedside" approach. This type of research is increasingly becoming more established in modern contemporary medicine.

I often say that each patient is different. Our biological makeup and life experiences mean disease often affects us in different ways – making a one-size-fits-all approach to medicine impractical. Science is seeing this too. It’s becoming more focused on translational research for the ultimate benefit of each individual patient. This is what we need.

I know and understand that being part of a research study is not for everyone. It doesn’t always go as great as it did for me. But stepping up and trying something that can benefit others is very rewarding.

I thank all of the research doctors and scientists who are making a difference in our lives. It can take years of research before they see actual results, and they are not always recognized for their efforts. I find it hard to express the full gratitude they deserve. Thank you to our researchers in the chronic pain community.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found on her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Don’t Take Away My Right to Kratom

By Jennifer Sage, Guest columnist

I'm on Day 5 of a withdrawal from all of my pain and anxiety meds at the moment this is written.

I just took my morning kratom about 30 minutes ago, assisted to the kitchen with my cane, and right now I can not only walk without the cane, but have zero effects of withdrawal. A very slight headache in the first few days, on and off, but that's it.

I would like to mention I'm 35, a multiple sclerosis sufferer, and a prescribed pain med patient for 7 years. I took off my fentanyl patch on Day 1. Haven't touched a hydrocodone since Day 1. Haven't taken anything other than a tapering dose of clonazepam every other day due to the deathly dangers of stopping that cold turkey.

This plant is a miracle. I've gone through the worst of withdrawals from meds that I couldn't function on to a happy, peaceful, pain-free existence without the use of any of them.

I'm a single mom, an author of 7 published novels, a finance industry employee, and I suffered immensely every day, some days even with the meds. I have wonderful doctors and I don't believe the healthcare system has let me down because they were doing all they could to keep me as productive as possible.

I took nearly a year off work 2 years ago because the MS was unmanageable. I only wish I had known about kratom sooner.

Am I going to be a felon now because I can't live in pain and I refuse to go back to that madness of life that kept me sick instead of healing me? A felon for taking a leaf that Mother Earth provided to do this very thing?

I understand the need for regulation. Put an age limit on it. Get the junk out of the smoke shops that real users of kratom don’t use. Go into the forums and you'll see that true users of this plant are buying high quality powders that we mix in water or juice and take it like we would our very dangerous pills.

JENNIFER SAGE

My 10-year old daughter just got her mom back. If you need her testimony of what life was like before kratom and after, I'm sure she would be happy to share with you. Kratom doesn't get you high. It's self-regulating. If you take too much (which I haven't, but I hear it can happen), you just get nauseous.

I've had days where I took 80-100 mg of hydrocodone on top of my fentanyl patch and was still in bed crying. I wanted to take 100 mg more just to stop hurting. But THAT would've killed me.

They've urged me to go on oxycodone and other more powerful drugs, but I get deathly ill when I take them. This is my choice. This plant that has no abuse potential, NONE, has in 5 days changed my life.

I will always be dependent on something to ease my pain. I choose kratom to be dependent on so that I can live my days without pain, and without the fog and stress of consistently wondering when my next meds can be taken. I would give my daughter this herb over the toxic pills for children once there's more research. There are no negative effects, but there are thousands of positive ones.

DEA, your war on drugs is with the meth labs and heroin that riddle our streets. Maybe if so much manpower wasn't being spent on this peaceful, harmless plant, a 10-year old girl in New Mexico would still be alive. Meth killed her and her mother. And you're going to put kratom in the same category?

It is our right to have a voice in this country, and you are trying to take ours away. Listen to the stories. We aren't trying to get high. We're trying to live our lives.

Jennifer Sage is an internationally acclaimed fantasy romance author, mother, advocate for healthy living, active hiker and, more recently, a user of kratom. Jennifer’s most recent book is The Last Valkyrie. You can learn more about her by clicking here.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.