Confessions of an Opioid User​

I have recently had an article published in the Huffington Post about my responsible use of opioids. The response was staggering. People have been contacting me through my Facebook page, my website, and LinkedIn to tell me their stories. So many people are suffering and using opioids because they cannot find a treatment that works, or because insurance won’t cover those treatments. So many of us are treated like drug addicts, pill poppers, doctor shoppers, and other such names that I won’t mention here. Yet, for us, opioids are the only thing that helps us get through the day.

Those of us who use opioids for pain management, do so because its the only thing that helps. Of course, we want to get off the medications, but we need solutions to our chronic pain problems that go along with it. Opioids are cheap, while comprehensive pain management treatments are expensive. 

Repeal, but replace with something better…

If politicians are serious about solving the opioid crisis, they must be willing to create legislation that requires health insurance companies to pay for pain management treatments that are designed specifically for chronic pain patients. Taking the pills away is not enough. Are they willing to force health insurance companies to pay more money? That’s the catch-22.

Many readers have suggested we start a letter writing campaign to our legislators to tell them our stories, our struggles with health problems, and how opioids help us get through the day.

Who’s with me?

I’m new to this but would like to start gathering people and stories to show them the other side of the opioid crisis – chronic pain patients who have no relief.

Contact me at sittingdisabilty@gmail.com or my mailing list on my website:

Sitting Disability website (my blog)

Huffington Post Article

 

Does Sitting Too Much Mean More Lower Back Pain?

This former massage therapist and author debunks the myth that sitting too much equals increased lower back pain: https://www.painscience.com/articles/chair-trouble.php

For the longest time, I believed this too be true, but lately, I have been reading articles like this claiming that studies show it is not true. Since we feel back pain increasing immediately on sitting, we are susceptible to believe that sitting is the cause.

What do you think? Read the article here:

https://www.painscience.com/articles/chair-trouble.php

 

 

​How to Reduce Chronic Pain When Life Stress Increases:

How to Reduce Chronic Pain

The holidays are over! Now come the gift exchanges and credit card bills, tuition bills, local, state, federal and property taxes, snow plowing bills, car problems, re-organizing schedules with your children and teens going back to school, cold weather, blizzards, travel delays-cancellations, transient colds and sickness, caring for your aged parents; you name it!

Your potential for chronic pain increases as you try to problem solve the challenges of life stress (7-10) you experience almost daily.

What can you do?

1. Identify your highest life stress ratings subjectively from 1-10.

2. Determine their impact on your family, work, social life and self-care including your ability to exercise.

3. Reflect on your past resilience for similar stressors and clarify what it took for you to get through each life stress! Ask yourself, what did I think, say and do to sustain my fortitude ?

3. Prioritizer the top 3-5 stressors, then…

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Deductible Season is Harder on Wallets than Holiday Season

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For many people, the day after Thanksgiving starts the holiday season. For those of us with a chronic illness, especially in the United States, the beginning of the year is the beginning of the deductible season. This is when health insurance resets the deductible on their plans, and out-of-pocket maximums are much higher until the deductible is met. In January, my concern is not weight gain, brain fog, or dry mouth, but which pills to take and which to skip to save costs.

For healthy people, this process can take most of the year, depending on their healthcare needs. For those of us with a chronic illness, deductible season hits us with a heavy financial burden. I have been on disability for many years, and I know the drill. I save what I can before it, and plan on working off the debt after it. The deductible season is shorter for me than it is for most people. I usually make my deductibles for medication by the end of January and for medical treatment by the end of February.

For myself, the deductible season is more difficult than the holiday season, because I am consistently going to doctors and physical therapists, and racking up huge bills. I suffer from a sitting disability, which means that it hurts when I sit because of low back problems. I also have fibromyalgia and bipolar disorder. Juggling these three things together is difficult enough without thinking about how much it costs.

For the chronic pain in my low back that causes my sitting disability, my doctor has me on an opioid called Nucynta. This newer generation opioid isn’t supposed to have the side effects such as constipation, the risk of addiction, and damage to the liver that opioids mixed with acetaminophen have. It also costs $600. I need to choose between the new opioid and the older one, hydrocodone, based upon my finances, not upon the risk for addiction, or my liver.

I ended 2017 already knowing where all of my 2018 physical therapy insurance dollars were going to. In fact, I stopped physical therapy in November because I ran out of insurance dollars for it. I was then being treated for my shoulder and ankle, sidelines in my struggle with a sitting disability, and was waiting for the new year to start a specialist therapist for my pelvic muscles related to my overactive bladder and hip problems. Too much.

For bipolar disorder, I take Tegretol ER (extended release), or its generic version, carbamazepine. The generic version gives me dizzy spells strong enough to make me not want to leave the house. The newer Tegretol ER doesn’t have the same effect, as long as I eat a hearty breakfast with it, but again, costs about $600.

With both Nucynta and Tegretol ER, I face a dilemma. At the beginning of each year, I tried to get away with taking the cheaper version as long as I can before my deductible is met. On the one hand, these costs are overwhelming to somebody on disability. On the other hand, paying the extra cost for the medication will get me further toward the proverbial finish line: meeting my deductible. I have to decide based on my financial situation at the beginning of the year.

For fibromyalgia, I take Lyrica. Luckily, I am in the patient assistance program with Pfizer that allows me to get this medication at no cost.  This is great because going off of Lyrica has terrible effects for me. I shake uncontrollably and can’t see straight. Before I went on this program, I was consistently going on and off due to my insurance company. They would approve it for one month, and I would start taking it, waiting a couple of weeks for it to kick in. And then the next month, they would decide it was not approved, and I would start to go through withdrawal symptoms. After going back and forth between the insurance company and my doctor, eventually, I would be pre-approved and start on it again. This cycle continued for over six months until I went in the patient assistance program. I’m glad that I don’t have to go through that anymore.

I wish I could celebrate this season by putting up decorations or sending cards to my pharmacists. The only solace I can take is that I do not celebrate this holiday by myself. Plenty of people in this country also suffer this financial fate, as they struggle with their illness.

Take My Back Pain Seriously, Dammit!

I’ve had low back pain since 2000, and the journey from treatment to treatment has been long and arduous. First, there was the physical therapist. Then there was the chiropractor. Then was the pain specialist center with another physical therapist and another chiropractor. Then several more after that. During that time were many steroid epidural shots, trials with acupuncture, acupressure, biofeedback and much more. The list of medications tried is endless.

Finally, after ten years, in 2010, I was sent to a neurosurgeon with an MRI in hand. He determined that since physical therapy hadn’t solved the problem, surgery was necessary. I had seen this coming for a long time. I had heard from many people that I should never get the surgery, or that surgery is only a last resort. It had been ten years. I was at my last resort.

In July 2010, I had a lumbar fusion surgery at the L5-S1 level of the spine – a very common location for a very common surgery. Although the surgery was scheduled for two hours, it ended up taking six. The doctor told me there were some minor complications but nothing to worry about.

I spent five grueling days in the hospital and then two months at home recovering from the surgery. In the hospital, and for that recovery period, I was given an opioid that has acetaminophen in it. I had never been given an opioid before the surgery.

I had a follow-up appointment with the surgeon two months after the surgery. The conversation went like this:

Me: “Why didn’t you put me on opioids before the surgery to see if that would work first?”

Doctor: “Opioids are for people with serious back problems.”

Me: “You cut me open and fused my spine. Isn’t that serious?”

Doctor: “You had surgery?”

Me: “Yes. You were the surgeon.”

Doctor: “Oh, we should have tried opioids.”

Now, I highly doubt I would be in a different place had they tried opioids before the surgery. I know pills are not the magic wand and neither was the surgery. In fact, it caused more problems, with my leg, with my bladder, and with fibromyalgia. But it is the arrogance of which he spoke and the lack of care before the surgery. He didn’t even remember cutting me open.

One positive aspect of the surgery is that I am treated differently. Before, they used to talk in terms of: “If you still have pain, then you must need three more weeks of physical therapy,” which of course I had figured out was not going to solve the problem. Today, I am a person who “had back surgery,” which means, “it’s really serious.” They take me seriously enough to prescribe me opioids.

My surgery was in 2010, before the “War on Opioids” had begun. And the opioid epidemic has never been drastic in Chicago like it has in other parts of the country. Seven years later, I am still on an opioid, but a less dangerous one. I don’t consider myself addicted to it, although it is a tool in my toolbox to fight the constant pain. (Ice packs are the best, but they are difficult to carry around and use.) Perhaps my pain team was afraid to give me the opioid because concern about addiction is growing in certain health care and political circles. Only after the surgery was I considered part of the special club of “serious back pain,” and therefore worthy of the opioid medication.

Luckily I have a much better doctor now; however, pain levels remain the same. At least my current doctor is familiar with my situation, looking for new solutions and is honest with me about medication use. Most importantly, he doesn’t want to cut me open.

Pride and Prejudice and Shame

Why would I march in a parade called “Pride” when I have so much “shame” hanging over my head due to my illness? Why is it OK to be gay, but not to be sick? Why, in my experience, are many outside of and within the LGBT community so quick to prejudge those with an invisible illness, especially after enduring their own personal journey of turning prejudice into pride?

In “Pride and Prejudice,” Elizabeth Bennet does not tolerate Mr. Darcy’s prideful ways. In the book, the definition of “pride” is boastful; its definition in Pride Month means “proud.” The opposite of the word, in both cases, is shame. Shame hangs over people with any illness that isn’t recognized, especially invisible illnesses.

I am no stranger to stigmatization, having had to endure it both as being gay and having a mental illness. Coming out as gay went smoothly for me — thank my lucky stars, and those brave souls who paved the way for men like me by enduring so much bigotry and abuse. Coming out with bipolar disorder was like tearing off a Band-Aid while the wound is still open — it stung a little, but the pain soon passed. But coming out with a sitting disability is even more difficult because rather than battling stigmas, I must fight obscurity. Sitting disability? Nobody’s ever heard of it. This puts people with this disability in an awkward position. The purpose of Pride Month is destigmatization, but how can a group be destigmatized when it hasn’t even been stigmatized?

Sitting disability is a new term for most people, but basically, it works like this: it hurts when I sit. It sounds simple, but many of my family and friends, and even doctors have a difficult time grasping the concept of how this plays out in everyday life. That’s why I want to shed light on this silent but debilitating condition. There are accommodations for wheelchairs, but not for people who have difficulty sitting. And the world revolves around sitting. Chairs are the mainstay of everyday living, whether for business or leisure. And although it may be tempting to say “just stand” as a solution, imagine standing the entire time while in a restaurant, car, train, plane, bus, or office.

Most people have heard the phrase “sitting is the new smoking” somewhere in a magazine, online, or on TV. We all know the dangers of a sedentary lifestyle. Those with sitting disabilities know this all too well. Many things can cause a sitting disability. Mine comes from lumbago (low back pain) and sciatica (pain down the left leg). The low back pain is a dull ache that is tolerable for a short amount of time, while the sciatica is a sharp jab that is unbearable at its worst. But worse than the pain is the shame. Not being able to work or go to a movie theater is one thing, but rearranging chairs in a restaurant so I can sit at the most comfortable one while everybody watches is a whole other level.

I’ve tried it all for relief, including back surgery, steroid injections, physical therapy, acupuncture, acupressure, biofeedback, yoga, meditation, and massage. Nothing worked, and at the end of each failed treatment, the blame game began — an experience shared with others with chronic pain. We’re accused of faking it, making it up, not completing the physical therapy exercises, not sitting up straight in chairs, and not using chairs with proper support. People attack us with phrases like “popping a pill” when taking pain medications, even when the meds are properly prescribed.

We live in a world where most Americans work in a corporate setting. Many of us have office jobs where we face sitting in traffic, sitting at a desk all day, sitting in traffic again, and getting home to unwind with Netflix — all while sitting, of course. Yet requests for ergonomic solutions such as standing desks can often be met by employers with disdain, while rebuking employees with shame, telling them they don’t “look sick.” It seems likely that sitting disabilities will only increase in the future. It’s better to redesign our lives with flexible options for sitting or standing now rather than later.

The criticism we give people with sitting disabilities or other invisible or visible disabilities is Health Shame. So coming out to acknowledge and confront this bullying is Health Pride. This show of solidarity could be in the form of a colored ribbon, marathon, or bucket of ice over the head. These things raise money but more importantly, awareness.

I feel that bringing up my sitting disability is part of my responsibility for educating others. We need to un-shame the subject like we have with homophobia and transphobia. And who better to do that than the LGBT community? We can use our struggles with sexuality to embrace those with other struggles, such as sitting disability.

I admit it’s not sexy. It lacks flair. Taking meds or playing musical chairs in a restaurant to get a comfortable seating arrangement isn’t as exciting as a lively parade of rainbow flags and people expressing their identities with pride. As someone who struggles with sitting disability, I find it notable that the Pride Parade is one where I stand to watch. It’s almost as if it is giving me a wink, trying to be inclusive to me and others with sitting disabilities. I didn’t choose my faulty spine, just as I didn’t choose to be gay.

There is an opportunity for growth. In “Pride and Prejudice,” Elizabeth was able to overcome her prejudice for Mr. Darcy, Darcy, his pride, and they fell in love. The world is battling homophobia and transphobia and is recognizing mental illness — although all have been painfully slow.

Pride in sexuality and pride in health. It is a gift the LGBT community can give to the future generations of the world.

Back to the Basics

Another day of pain. Same ole, same ole’. I can’t expect anything big to change from here on out. More doctors, more pills, more shots, nothing new. September is Pain Awareness Month. Every month is Pain Awareness Month for me.

I suffer from a sitting disability, meaning, it hurts when I sit. I have sciatica giving me sharp jabs down the left leg and a dull but growing, pain in my low back. To compensate for the sitting, I angle myself in different positions that cause pain in another area of the back, or the hips, or the neck. I lie down, which after a while is unhealthy. I stand, but then my ankle pain comes back, or my knees buckle. I can’t win.

At this point, I cannot expect a doctor to save me. I’ve been down this road too many times, and all I can do is… all I can do. Remember the Serenity prayer:

God grant me the serenity to accept the things I cannot change;
courage to change the things I can; and wisdom to know the difference.

Sometimes the serenity prayer is the last thing that I, as a chronic pain patient, want to hear. I need to focus on getting what I call: Back to the Basics, sleep, diet, exercise, companionship.

Sleep is the number one issue for me, and a big one for most people with chronic pain. Not getting enough sleep causes more pain, more pain causes lower quality sleep, which causes more pain. I hate relying on the sleeping pills my doctor prescribes me, but I need to do what I need to do for restorative sleep.

I need to go to bed earlier and get up earlier. We’ve all heard the Benjamin Franklin quote, “Early to bed and early to rise, makes a man healthy, wealthy, and wise.” We’ve also heard, “The early bird gets the worm.” That’s good for the bird, but not for the worm. He should’ve stayed in bed! The point is, I need a full eight or nine hours sleep, but it has to be quality sleep.

I need to prepare myself for sleep an hour before hand. No TV, computer, laptop, or phone. Instead, I practice light yoga and easy reading. I prepared a “Before Bed” playlist of music and a “During Sleep” playlist for deeper sleep. It’s important to prepare these ahead of time so that I’m not fumbling around with the phone, searching through my music when I’m supposed to be off of technology before bedtime.

Getting up earlier helps me go to bed earlier, which in turn helps my sleep cycle. Being awake when the sun is up is beneficial for me, which is why I prosper in the summer and flounder in the winter, with both depression and higher pain levels. Benjamin Franklin also said, “The early morning has gold in its mouth,” which is relevant to me too because early morning is my daily golden period. The first few hours in the morning are like unicorns and winning lottery tickets because I am not in very much pain if the previous night’s sleep was successful. I spend a considerable amount of time talking about pain, so it is helpful for my outlook on life to notice times when I am not.

I start these mornings with movement, not too much though. Stretching, easy walking, or yoga. I find that movement combats my pain any time of the day, but starting off the morning with walking benefits the rest of the day.

I medicate myself with food. When I am in pain or feeling anxiety, nothing calms me like fat, sugar, and salt. They are more comforting than any drug but just as dangerous. We are what we eat. We eat foods that we cannot pronounce, and we eat too many of them. And then we have the highest cost of healthcare in the world. Go figure. Diet and exercise are important to fight any illness, whether it be a sitting disability, depression, diabetes, or cancer. In other words, I need to try harder at this.

I’m not going into diet specifics here. First of all, I’m not qualified. Second of all, by the time you read this, there will have been 100 new diet books published that all have different opinions on what you should eat. There is not a special diet for a sitting disability. There are things food that help pain and foods that cause inflammation, or pain. Because the causes of chronic pain are different for everybody, ask a doctor and a nutritionist about your specific diet. Doctors aren’t taught about nutrition specifics. They are taught to treat illnesses after they happen, not before.

Generally, the things I really, really want to eat are the things I really, really should not eat. Diet books will argue one food over the next, but I know ice cream and potato chips aren’t the right things to eat. Damn! Having a healthy weight is important for my pain. I am a little bit overweight and recognize that as a man, I carry the weight in my stomach, surrounding the area where I had my back surgery, a lumbar fusion at L5-S1. It doesn’t take a rocket scientist to know that carrying extra weight in that area is a bad idea. It does take a rocket scientist to keep me away from that extra slice of pizza or ice cream.

Vegetables. I need more of them. Everybody does. The one thing that every fad diet book agrees with is that vegetables are safe, although you might have particular ones to avoid due to your particular illness, and again, ask a doctor and a nutritionist. In the morning, I take go into the fridge and take out the raw vegetables that I will eat for the day and place them in a bowl. This usually includes a handful of leafy greens, red pepper, baby carrots, celery, broccoli, cauliflower, zucchini, and squash. I buy them in bulk and eat a little bit of each vegetable each day. By setting them near me, or taking them with me when I travel, I am guaranteed to get through the bowl by the end of the day. It also makes eating a big bowl of vegetables less daunting. I do the same with fruit. Eating sugar from fruit helps me to fight my sweet tooth late at night.

There are many causes of illnesses that we don’t know about. We don’t know that food X causes disease Y, yet. But we do know that food that comes from the Earth is good, while food that is highly processed is not. In 20 years from now we might have more answers, but even without a scientific study, we know that pizza and ice cream are the obviously bad choices. Trust me, I hate this fact too.

Exercise is difficult when you have chronic pain. But it’s important to stave off further pain. I have to exercise within my limits, which means several small walks throughout the day. I prefer resistance training to aerobic because the controlled movements are less jarring on my joints. However, my doctor stressed that aerobic exercise is also important, especially for my fibromyalgia.

Most importantly, I cannot isolate. This is my tendency when I am down and out and in pain. I have to try to make that dinner date with a friend or go for a walk with a friend that understands my limitations. There are people in this world that will understand my illness and there are people who won’t. I need to surround myself with the former and not beat myself up for not being able to do more.

Those are just the basics. They are the things that I can control while facing an illness I have no other control over.

Plenty of Pillows

It may seem odd that someone would write an article about pillows, but in actuality, they play an important role in my life. I have a sitting disability, which in a nutshell means: it hurts when I sit. I also have fibromyalgia which leaves me with pain in different areas, seemingly depending upon a roll of the dice. Finding a comfortable position is difficult for me, if not impossible at times.

In my 17 years of back pain, my goal has always been to keep my spine in the “natural” S-curve. I question the term “natural” because whenever I am in this position, I have tremendous pain. It is even more disheartening to see people around me with atrocious posture not complaining about back pain. But I proceed forward in my quest to find the perfect pillow to give me the perfect position.

It started with the lumbar support pillow. These came in many forms, most of which I still own today. The bulk of them I still own today. It started out with rolled up towels, which never stayed in position and always needed constant adjusting. The plus side was that I could lower or raise the level of support on the lumbar quickly.

Then came various lumbar support pillows that I used in different places: the car, the office chair, my office chair at home, and so on. It took me a while to find the self-inflating pillow from Relax the Back. I love this pillow and have separate ones for different places: my partner’s car, home, my parents, and one I carry with me for public transportation. This pillow deflates easily for storage and blows up for more support. My only beef with this is that I wish it also came in a size that was half the width. In a car seat, the lateral supports, the part of the seat that juts out on the sides to hold you in, come out too far. When I put this pillow there, the pillow juts out with it, causing discomfort.

Then came the string of fancy neck pillows for sleeping. Keeping the lumbar spine supported wasn’t enough. The cervical spine needed to be natural as well. If you throw one off, it’s likely to affect the other. I tried many memory foam ones until a chiropractor convinced me that the only one that would really support my neck is the expensive ($250) Tempur-Pedic one that only he sold out of his practice. I rolled my eyes at the sales tactic, but like always when it comes to making medical decisions: I was desperate for relief. However, the pillow worked like a charm for many years so I had no further complaints.

In a former lifetime, I was a traveling IT consultant who spent many nights in hotel rooms. No hotel pillow could compete with my trusty Tempur-Pedic, so I would carry the 4.7 lb. pillow in my check-in luggage, sometimes paying extra because I went over the weight limit. After flying United Airlines and gaining status, my weight limit went up and was no longer charged that. After that, there was no holding me back from bringing my pillow­ — or any of my other pain relieving equipment such as my ergonomic keyboard and mouse, TENS unit, ice pack, heating pack, and whatever creams and patches I was into at that time.

Tempur-Pedic pillows are only supposed to last two years. When I went to buy a new one, I went from store to store trying them out. Something changed about their design and they were not comfortable on my neck. Some were too small, not giving enough support, and others were too big, giving too much support and pushing my neck into an uncomfortable position. Maybe two years of my old pillow had conditioned me to feel that was the only comfortable position? Maybe my cervical spine was not open-minded enough? When I did buy them and give them a fair chance, I ended up going back to my old one. The pillow is now 14 years old and I have gone to lengths to wash it and cover it with several pillowcases for sanitary reasons. Luckily, the Tempur-Pedic material doesn’t trap dirt and sweat like other do.

As my chronic pain problems progressed, the pain in my neck increased and I searched again for pillows. I have them in all sorts of shapes and hardness levels. And I have spent way too much money on them. One night, when I had done my usual round of waking up every two hours and switching pillows, I looked at the pile of necessary pillows I keep next to my bed to get through the night and counted I have accumulated hundreds of dollars’ worth of ergonomic pillows. My pillow collection is probably the most expensive thing I own. I might feel better about it if I had some luxurious experience with these pillows, but no, its all about ergonomics, and failed ergonomics at that. I don’t need a lavender scent; I need it to support my neck.

Lastly, there are the wedge pillows. Most physiatrists, physical therapist, and chiropractors will testify that it is better to keep your hips raised higher than your knees. In other words, in a chair that is at a perfect ninety-degree angle in which the seat is parallel with the floor, you need a wedge underneath your butt to raise it. I can testify that his works because it brings an immediate relief to sciatica in my left leg. However, in many seats, such as in cars and on airplanes, the seat dips down in the back, so instead of dealing with a ninety-degree angle, the butt is lower than your knees. This means that I need different wedge pillows for different situations. I wish that Relax the Back made an inflatable pillow that works as good as the lumbar support one.

I have attempted large wedge pillows for under the neck for sleeping and sitting up at a forty-five-degree angle on the bed for reading. This attempt failed quickly and I abandoned it. However, another type of wedge pillow underneath my knees for keeping my back flat while sleeping works great while sleeping on my back only. Since I toss and turn all night, as well as get up several times to switch pillows, I never stay in the same place and the pillow underneath my knees is eventually abandoned as well.

I don’t want to sound all Debbie Downer on pillows. They work when they work, and need to be adjusted when they don’t. Like everyone who suffers from chronic pain issues, I need to keep searching for better ones to fit my needs. I just wish they were not as expensive.