The Demon of Disease

This is a post that was going to be written further in my blog and journey, but a comment from someone I considered a good friend stung me to the core, so I’m writing it now. This proves that even someone close to you can have vast misconceptions about the truth of chronic pain. So I’m explaining and, perhaps, reiterating the reason why I’ve chosen the path that I have. 

Why do I care about what someone else thinks? Because I’ve been dealing with bullshit judgments from friends, acquaintances, medical professionals, pharmacists, insurance reps, etc. for over nineteen years, and I’m sick of it. I’m finally just now learning not to give a shit.

So why do I write this? Because I care about the stigma. I care about all the other chronic-pain patients out there who live in agony and are judged for doing what any human being would do, and that is to search for relief. Those who, like me, have tried to stop their narcotics before, only to wind up with another episode of pain, back on the medications they worked so hard to rid from their lives.

Why do I write this? Because the fire is back in my eyes and my heart, and I want to fight for those who haven’t found their own voices yet or who are too ill to speak for themselves; who are stuck on the same merry-go-round I’ve been on for half of my life. Those who are living in a time when the government is restricting narcotic prescription and who are being taken off their medications without a choice. Those who need to stay on the drugs in order to survive, but who are looked down upon for it, as if they are junkies searching for the next high rather than patients in a world of hurt. Not that most people who are addicted to narcotics aren’t in pain. I believe when it comes down to it, they are all self-medicating some sort of trauma.

However, there is a difference between someone who tries time and time again to detox from opiates after a period of pain, only to have to return to them due to a relapse of the illness, and the people using legally or illegally-obtained drugs or alcohol that are just chasing a high.  It’s not like falling off the proverbial wagon. When you wind up in the hospital after another pancreatic attack, or you need a surgery for your issue, it’s hard to say “No” when doctors are prescribing narcotics, and your body is in agony. It’s called chronic illness, and it’s not a choice.

I have not chosen the things I have gone through. I did not cause the blockage in my main pancreatic duct after gallbladder disease, leading to years of horrible chronic pancreatitis. I did not ask to develop an infected hematoma after surgery for a feeding tube to be placed, infection seeping out and through three layers of blankets, only to have my 25 staples removed at my bedside without anesthesia and the clot removed. Afterwards, I did not ask that my abdomen then be left open, needing to be packed twice a day by my 6’3” father who could insert his entire hand into my wound.  

I did not ask for my insides not to heal, for a huge ventral wall hernia to form, necessitating a large surgery to sew back together first the layer of my muscle, then my fascia and then my skin, with layers of mesh placed within to help it heal. I did not ask for a surgeon to later nick my bowel while repairing my esophageal wrap, sending me into a state of sepsis and requiring emergency surgery, leaving me with a misplaced and dysfunctional colostomy that plagued me with months of pain and humiliating accidents.

Nope…I didn’t choose any of it, and that’s just a tiny snippet from my health history. Have I been through drug detox before? Yes. I’ve been through withdrawal numerous times from everything from OxyContin to Methadone. I once sought the help of my prescribing doctor to get off OxyContin and Percocet, only to be referred to Talbot Hall, a drug detox center at Ohio State. I went through a week of detox, during which a counselor reprimanded me for not attending a 12-step meeting and told me to “return to the streets where I sold my body to get my drugs in the first place”, something so far from the truth, it made me ill. My parents were told at a meeting that I wasn’t “appropriate” for their program. Why? Because I had become dependent on drugs due to illness, not because I searched them out on my own due to true addiction. I was immediately discharged. One month off my narcotics, I relapsed with pancreatitis and was put on methadone in the hospital, easily the hardest drug from which I’ve ever withdrawn.

So, yes, I have gotten off narcotics before, but I’ve never had the resolve to choose my pain over my drugs. The epiphany I had on the beach this past September woke me up to life, and I’ve never been more passionate to return to it. With the return of that passion comes a lack of patience for people who say things without thinking, who don’t pay attention to the plight of chronic pain patients, yet who choose to make comments that not only offend but disrespect the efforts of people who are trying desperately to make a change… for good.  They may not mean to be insensitive, but it is to anyone going through this elected agony.

I am choosing a different kind of life, not just a futile attempt to get off prescription opiates until the next shoe drops. I’m coming up with plans for future relapses or emergencies, with the help of my physician, for narcotics not to be used. There are new developments in nerve blocks, epidurals and anesthesia. I hope to put in writing my wish for nothing to be used that works on the same neural pathways as narcotics should these things arise. God forbid, if opiates must be used, I will elect to utilize the shortest course of drugs and get off them as quickly as possible. After four months of detox hell, I’ve learned to deal with that sometimes necessary evil and proven to myself that I can do it.

I’m choosing the demon of pain over the demon of disease. Neither is favorable. However, I’m learning there are other ways to handle pain, whereas there is no other way to cope with the dizzying numbness of narcotics other than to rid them from your life. I believe my quality of life will be higher if I’m awake to LIVE it, rather than to go through life as a zombie with my pain still an issue. As long as I was on narcotics, my tolerance was going to continue to go up and up, and eventually I’d be an opioid-induced vegetable.  I'm not saying this is the right choice or even an option for all individuals in chronic pain. However, when weighing my options and evaluating the effects the opiates were having on my life, I chose what I felt to be the lesser of two evils at this point in my chronic pain experience.

Going forward, I see myself as a soldier in this time of change. I hope to chart a course for others in my situation, for those who want free of the confines of drugs in the name of pain. At the same time, I want to help fight for those who need to remain on opiates due to crippling illness and give them a voice where before, there have been few. Perhaps it’s the detox talking, although I feel it’s the fire returning to my spirit, I have no tolerance for ignorance. My goal is to educate those who are unenlightened about the issue, as it's that lack of understanding that can damage the little self-worth remaining in a person’s spirit who is fighting this type of battle. 

The Jessica from the beach has returned, and she is fired up! There are changes to be made to the system, and I have no room in my life for those who want to stand in my way by invalidating my journey. There’s a new girl in town, and she has neither room for you nor opiates in her life. It’s a new day.

CHECK OUT THE SONG BELOW BY ANDRA DAY....

https://youtu.be/kNKu1uNBVkU