Tapering – Uncle

Happy Wednesday everybody. I might as well explain the post title right away, as I want to be blatantly transparent with this process…

I am stepping back on the second dose taper, effective this morning. I am crying “Uncle,” so to speak. From a pain standpoint, yesterday was the worst day I have survived in a very long time. I am not sure I can, emotionally and mentally, have another day like it again today. I was simply not prepared for the magnitude of hurt I suffered yesterday. Without a good plan to tackle this issue, I can’t continue until I’ve seen my pain specialist.

This is total insanity. To anyone who has stopped taking painkillers while experiencing excruciating pain, you have my utmost respect. However, I am not seeing this backstep as anything but a delay in achieving the final goal, at least for now. I don’t feel defeated, I am just hoping for some pain relief at some point, and I really need a nap. I haven’t slept more than 8 hours across two nights. If there is one thing that is crucial to Fibromyalgia, it is getting adequate sleep.

A couple of months back, I read an article that someone had written about Prince, who died of a painkiller overdose two years ago. The author posited that he did not die from pain pills, but from chronic pain. I hadn’t seen anything written from this point of view, and I agreed with it wholeheartedly. Chronic pain is a huge problem, and too many people suffer with severe pain to sweep them under the rug any longer.

I need to cancel the second of two appointments this week, because I can barely move. We missed hubby’s neurology appointment in Tampa yesterday, which is a 70 minute drive each way. There was no way I could have driven and been safe on the road yesterday with the misery I faced, and it was a good call. Today is my appointment for a long overdue eye exam. However, a dilated eye exam and the size of migraine headache I have brewing is not an ideal combination. Stuff happens when you have a chronic illness. I joked with the lady on the other end of the phone yesterday as I rescheduled hubby’s appointment, that it’s rough when you don’t feel well enough to see the doctor. Something you take for granted when you’re normal.

I will check in later this week. Have a blessed day!


Prayers Are Great, But They Don’t Get Dinner On The Table

By every definition of the word, my husband and I are in financial crisis. We are both disabled adults, both of us are unemployed and neither of us can physically do enough to be gainfully employed. As of last April, we suffered a significant financial setback when we lost a good portion of our income every month, money that we used to buy things we used to take for granted. Things like food, medication, upkeep on our one vehicle, and the ability to save a little for a rainy day. After a year (and then some) of rainy days, even that piddly little savings account is dried up, too. I am not kidding when I tell you that we can’t afford to even pay attention. I have overdue hospital bills from last year, for both myself and my 89 year old mother, whose finances I also manage. I have no idea when, if at all, I can pay on them. My coinsurance on my three most important medications rose this January by 4200%… each. Most months, I am making the impossible decision between feeding the both of us, or taking my medication for that month. Stopping two of the three suddenly could be life threatening, so we all know which takes priority.

My father, who worked in manual labor his whole life, supported a family of six on an 8th grade education. He didn’t have the luxury of finishing school. He was the oldest male child born to native Italian parents. He was expected to help support the family of eleven after the Great Depression began. He never once complained about having to work a skilled trade; the back breaking labor, the often times too-hot-to-breathe weather in the summer and the bitter cold in the fall. In the winter, there was no construction work in Connecticut, so he and everyone else on his job was laid off. There was nothing my Dad loved more than his family, and we were his life and his reason for working as hard as he did. It pained him, physically, to collect unemployment during his annual lay off, and he would have rather died than take food stamps. His own parents taught him the value of hard work, and the importance of being free enough to support his family. That is, after all, the reason his grandfather toted five children by himself from Naples, Italy to America… to seek a better life.

Being in our current predicament, while I accept full responsibility for years of poor decision making, weighs heavily on me, because I always think back and remember my Dad telling us the value of a job well done. To not be reliant on anyone to provide for us, and he meant the government, was a huge source of pride for him. Many times I catch myself wondering what he would think of me today. Disabled at 38 years old, collecting that government check every month, regardless of whether I had paid into it. The disability is something I have absolutely no control over, but nonetheless, this is a tremendous source of shame for me, and is difficult to bear. I’m sure his words would not be terribly kind., but as always he would have had good, constructive criticism and loving advice.

This, in a roundabout way, brings me to my point. Society at large does not have much empathy for a couple of disabled, childless, unemployed adults. Now I know there are exceptions to this rule, just like every other hard and fast rule ever made. But it has been my personal experience that my statement is true. Our familial status has been the defining feature of whether society deems us “worthy” of saving. No children? Well, then you don’t qualify for x, y and z services. We were even told once, when we were facing homelessness that we could never qualify for Section 8 assistance, because families with children would always bump us down to the bottom of the list. It would take literally years for approval, and we had just weeks. I had always thought that government agencies could not discriminate based on familial status, but obviously that means you need to have children to qualify for goods and services provided by most cities and counties. If they don’t mean that, then the Powers That Be should clarify, because that is what we have been told over and over again. Mean what you say, and say what you mean!

There are a lot, and I mean a LOT, of folks with good intentions in the world, who offer everything from a listening ear to prayers. Both are fantastic, wonderful things to offer someone who is down on their luck, but prayers sometimes just aren’t enough for a person or family in crisis. Yes, they would like someone to care and pray, but also ask when they had their last hot meal. Please, check up on them or call, but also ask how, not if, you can help. Many people in crisis don’t want to be a bother to others, and will seldom volunteer that they are, indeed, in crisis, or have a specific need. Prayers are wonderful, but they don’t work immediately to get tonight’s meal ready, or provide a ride to the store to pick up a much needed item, or watch children so a single parent can go to a job interview, or lend a helping hand with household tasks that a disabled person cannot do without aid.

I think, and I’m guilty of this myself so I will shoulder this as well, we get complacent and put too much burden on God, when WE could actually be His hands and feet, and provide a blessing to a person or family in crisis. It’s easy to say, “I’ll pray for you,” and you’ve fulfilled your promise, but things are still left undone. It’s easy to look at the brokenness around us, shake our fists at Heaven and say, Why Lord? Why aren’t you fixing this injustice? When all along, we could be providing the answer, the fix, ourselves if we are just moved to act. Is it not our duty as Christ followers to feed His flock, and care for His sheep? Did He not command Peter to do these things for Him? How, then, are we any different than Peter? Jesus did not tell Peter to refer these people to the government for care, but that he was to do it himself. So why do we pass the buck when it comes to doing the work He has given us to do? Like I said, I am just as guilty in this way, so I am pointing three fingers back at myself.

As a society, and as Christians, let’s all try to do better.  Though right now we are in no position to help anyone, once this crisis passes, we will both be much more aware of people that tend to fall between the cracks.  I will be prepared to help in ways that I am able, and if not financially, with my time and helping hands. I encourage us all to do the same.  Offer prayers, words of encouragement, and then ask how you can help.  I will do the same, too. Anyway, this has been weighing on me this week, along with other things over which I have zero control. I know He is working on something big for us, and we are in the middle, as always it seems, of a great testimony. I appreciate your audience, more than you know. Thank you for indulging me in this, and for joining me in this part of my walk in life.

Gentle hugs and God bless!

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.