Here We Go

Well, here I am on the night prior to beginning my opioid taper. When I went to see my pain specialist, he really had no useful information about the new law here in Florida to take effect in less than three weeks. Everyone tells me outside of the doctor’s office that this won’t affect chronic pain patients. Forgive me for being skeptical. I don’t much care for the not-discussed but very relevant “Law of Unintended Consequences,” (maybe this isn’t unintended after all.. maybe chronic pain patients have always been the government’s primary target) and I believe somehow this will occur statewide soon, maybe even nationwide within the next five years.

Here’s my deal. I am tapering slowly, over the course of the next 6-8 months, from 60mg of morphine equivalent medication. I am only using equivalency here because I’m not going to disclose the precise medication I am taking. My first taper will last two months, and I will cut 15mg equivalent in the first two months. Each two months afterwards, the plan is to cut 15mg morphine equivalent per prescription. So in August, for example, I will be reduced another 15 to 30mg per day. During this time, I will be taking CBD oil to help with the inevitable increase in pain.

So why am I doing this willingly? The answer for me is simple: I am tired of being scared. I am sick of watching the news and coming away feeling like a junkie. I am beyond tired of the misrepresentation of chronic pain patients in this country. My doctor simply recommended I choose my path, and he would support my decision, whichever way it went.

Another reason I am doing this right now is because I don’t want to find myself in a position where I am without medication because a bureaucrat decided to issue a stop sale of opioids. I don’t believe we are, as a country, anywhere close to having this happen. But I know what can and will happen, is a scared doctor who doesn’t want to risk his livelihood, that will just decide not to prescribe pain pills anymore . I’ve seen it happen just this week to someone extremely close to me, and I think it’s highly unethical to make a multiple sclerosis patient suffer without adequate pain control. What happened to the Hippocratic Oath?

For the next few months, I hope to update this blog frequently as I document this journey to being free of medication, and from the fear of being cut off cold turkey. These posts will be categorized with a different tag than my other posts, to make my own documentation easier, and to keep things neat and tidy. Well, hopefully on the organization part.

I hope you will forgive me if I sound irrational and a little spooked. I am writing this at almost midnight, and I’m more than a little scared and apprehensive. But I am all in, and there is no turning back now. If you are the praying type, I would surely appreciate if you would include me in your prayers tonight. I wish you all a pleasant evening and a happy, healthy weekend.

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The Opioid Crisis, A Pain Patient’s Perspective

I am a night owl, preferring the evening hours as my most productive, although my neighbors may not like it very well if I decide to whip out the Dyson for a midnight cleaning session. I’ve always been night-oriented, although as I get older I don’t venture out after dark much anymore. But last night was not really unlike any other night except for not feeling well when I finally decided to go to bed.

I got up from my computer, grabbed the cat’s bowls and headed to the kitchen to feed them. As a fibromyalgia sufferer, I am a little more prone to odd things… earlier in the day I was having a costochondritis flare up. Costo, which causes pain along the breastbone, is very easy to mistake for more sinister illnesses, such as a heart attack. The inflammation is easy for me to differentiate… if I can make the pain worse by pressing on the painful area, it is costochondritis. Oversimplified, perhaps, but it works for me.

When I got to our kitchen pass-through, I dropped off the cat bowls and brought my phone and other stuff back to the bedroom. Hubby was not quite asleep, despite him having gone to bed hours prior. I walked back to the kitchen to begin feeding the ‘kids’ their bedtime meal when I felt the chest pain start. But this time, it was accompanied by shortness of breath. Still, I wasn’t sure I needed to head out to the ER, but as the time progressed over the next few minutes my mind quickly changed.

I finished feeding the cats while hubby dragged his poor, tired self out of bed (bless his heart!!) and got dressed. I then consulted my online nemesis, WebMD, and finished thoroughly freaking myself out. Considering my family history, I tend not to mess around with chest pain, even if I suspect it’s nothing serious. Better to find out it’s nothing than to do nothing and find out too late I should have gone.

Upon arriving at the emergency room, there were few people waiting around, and since cases like mine usually take priority, I didn’t figure we’d be mingling in the “gen pop” very long. We approached the desk to check in, and I kid you not, the person behind the counter looked at both of us, hubby probably looking more like the sick one, asked us which one of us was sick, grabbed her things and said goodnight to the rent a cop sitting behind her. I looked at hubby… Really? I mouthed to him. He nudged me and told me to be patient. Ironically, I was the patient. Not what he meant, but okay.

A half hour later, we were in a room in the back. My first EKG was looking normal, a preliminary good sign. The nurse set up a Roto-Rooter in my left arm, choosing a vein that is deceptively awful for doing IVs. After getting samples from that port, she quickly decided, after my painful protesting, that she’d try a new spot for the IV. Next was a chest X-ray followed by a healthy dose of waiting.

About 90 minutes into this ordeal, there was a near panic among the medical staff about a patient outside. My first thought was, Oh great… this is going to delay us getting out of here any time soon. However, it quickly became clear they were dealing with a drug overdose, as the nurses rushed the man, gasping for air on the gurney, toward the trauma unit, and another nurse yelling for Narcan. Suddenly my piddly problems seemed so minute as this unknown person struggled for life a few rooms away. Thank God, the Narcan worked like it was supposed to, and saved another life from ending too soon to an epidemic that touches every family somewhere in this country.

Long story short (and since I finally reached my true topic at hand), after blood tests, a CT angiography, nitroglycerin pills, a morphine shot that I thought was actually going to kill me, half a bag of IV fluid and a GI cocktail, I was released after nearly 10 hours of being poked, prodded and fussed about. They ruled out every sinister cause of my pain, leaving me to believe it is reflux pain with a little costochondritis thrown in for good measure. I did come away from the night’s activities with a few thoughts on which I’d like to opine.

As a chronic pain patient, I keep very close eyes on what is happening around the country with the opioid problem. First are the vapid promises from politicians who are all too eager to pass sweeping legislation that will do next to nothing to solve the problems and ends up affecting (either intentionally or unintentionally) those the legislation is intended to protect. Next, and inevitably, the demonization that chases every man and woman that legitimately needs this type of medication to have any quality of life. We pain patients tend to be overlooked, fall through the cracks and painted with the same broad brush as the abusers who make our lives a living hell. For every one of me, there seems to be at least 5 people hopelessly addicted to either prescription pain medication or worse. I guess, with how this crisis is reported, it’s easy to feel forgotten, overlooked and just plain screwed (pardon the expression).

That something needs to be done is painfully obvious. But the tricky answer to this problem is…. What, exactly? The POTUS’ newest declaration of war on opioid is troubling. We can’t just marginalize chronic pain sufferers, but it is totally unacceptable that we lose another life to this national embarrassment. And speaking for the millions of fellow pain sufferers, a general ban on the “worst” drug (whatever that happens to be at any given moment) is not the answer. Street drugs like heroin are already illegal, so it seems pretty clear that the illegality of these drugs isnt making an impact. I wish I had the fix for this broken system, but I don’t.

Because people become addicted to legal pain prescriptions, I am already subjected to random urine drug screen tests several times a year, administered by a pain specialist that fortunately cares enough to pursue adequate pain treatment options. I also understand and appreciate the risk he takes to prescribe these medications to me. He always makes sure I understand the risk involved, and because I have a healthy respect (maybe even fear) for these medications, I take them exactly as prescribed. Not one pill more, but not one less than is needed to control my pain enough for me to live my life. It is a delicate balance, and looking back, a road I wish I had never taken.

I also know that, taken exactly as prescribed, the likelihood of addiction is low for chronic pain patients. That isn’t to say it doesn’t or hasn’t happened, but we are, as a demographic, less likely to abuse our pain medications. That should count for something when it comes to consideration in legislation. All we ask is to not be minimalized and forgotten in the national debate. We need someone to sit at that table on our behalf. Who will step up and speak for us?

The author is a fibromyalgia and chronic pain patient since 1999. Having exhausted all other treatment options, opioids are the treatment of last resort for many chronic pain sufferers. These patients become physically dependent on, not addicted to, these medications. There is a vast difference between dependency and addiction. It would do society and our lawmakers well to learn the difference, so that these patients can be treated with the respect and dignity they deserve.