Tag: pain

No More

No More

I keep rewriting this because it’s hard to say, and hard to face. That’s also the reason I broke down today while relaying the past two months’ developments to my pain management doctor. The hard truth is that adhesions have very likely grown back on my rectum and bowel and possibly other locations, four months after they were removed by a world-renowned endometriosis specialist during a grueling two-surgery process. I’ve been working with my PCP, endo specialist, gastroenterologist and nutritionist to treat severe digestive dysfunction and abdominal pain which has made me pretty sick, and kept me on a liquids diet for a while. If it continues, it will threaten my ability to digest food properly until another surgery to correct it.

This is all on top of trying to find solutions to multiple co-morbid diseases and dysfunctions that endometriosis and its treatment has caused. Oh, and the medication I take to suppress all hormones in my body with the intention to prevent further endometriosis growths is changing my body in multiple soul-crushing, potentially permanent ways, although I know that the benefits outweigh the cost.

I felt amazing, just two months ago. I had some of the same issues then, but there was progress being made, and it felt like everything was moving in the right direction. The suffering and damage incurred during four surgeries and treatment appeared to have made me exponentially healthier. I had hoped that we had at least subdued endometriosis and adhesions for long enough to give my body a chance to fight off the rest of the attackers.

While I am absolutely in far less pain, while I know that my surgeon potentially saved my life, and while I don’t regret the surgeries for a hot second, I’m so beyond belief, or emotions, or words. Frustrated isn’t the right word; neither is angry, or sad, or upset. None of those convey the nagging feeling, the empty gravitas of accepting that no matter how many surgeries or treatments I endure, I was born into a body whose very perfectly natural, normal healing process, adhesions, curses me to indescribable pain, organ dysfunction, and helplessness. That what restores others to health will always chain me to disability.

There won’t be any avoiding these patterns, there won’t be any chance of outrunning the pain, there won’t be any graduating from routine follow-ups, there won’t be a knight on a white horse in an OR or waiting for me outside the office of the twenty-seventh specialist I’ve seen in as many months.

I think the only truth that allows me to continue traveling through each day like everything is okay, that equips me to laugh and plan and sit calmly binging The Newsroom with my fiancé while at the same time knowing that I will never totally or even partially shake off the pain, the appointments, the medicine, the fear of the faceless adversary wreaking havoc on my very core, under my skin… Is the realization that I have no other choice.

I no longer have the option, the luxury of lobbying to evict my nemesis. I don’t get to take the easy way out, of just waiting to kick the sucker out to begin living. No, that’s not how my happy ending will work. Mine will more or less take the shape of, “the best revenge is a life well-lived.”

You heard me right; there’s no more waiting until I’m healthier, until I’m done fighting endometriosis, or feeling stronger. There’s no more putting off goals I want to pursue, places I’m dying to see, risks I’d love to take, and the other innumerable joys and disasters awaiting me when I’m “better”. Endometriosis may not be killing me, but giving it all my time, energy, and devotion might as well be. I’m watching my life pass me by, waiting for this demon to leave, while he’s signing a mortgage on a three-bedroom and picking new tile for the master bath.

No more. No more waiting to fight another battle when I’m stronger, or less emotionally tired, or when I’m done with this six month treatment, or when the IV bruises have faded and I stop running my fingers over the several new abdominal scars I picked up in Texas.

This being caged by my own body’s attempt at erasing the painful history of trauma, my own body’s success in restoring my flesh? This inability to stop healing, which ironically harms me? This is the very reason that I can no longer put off living for “someday”.

I must capture, seize, hold hostage this day, this very day, the one that you and I are both living. I no longer have the luxury of letting it pass by while waiting for a better one. That day may never come, and I will die with a life haunted with “what if”.

I may not be able to control my body or the storm brewing inside me, but I can choose to muster the courage to live fearlessly and boldly not in spite of the pain or suffering, but with the knowledge that nothing I have faced yet has broken me, and nothing has been too difficult for me to overcome with the strength of the Lord and my loved ones.

The joy in life doesn’t come from the pursuit being easy, but rather it being worth the struggle and passion poured into it. My waiting stops, my story continues, and so does my fight. How about you? What are you fighting for?

Things That Fail

Things That Fail

Dilaudid. Tramadol. Amitriptyline. Ibuprofen. Naproxen. Acetaminophen. Aspirin. Hormone therapy. Kratom. CBD gummies. CBD oil. Cannabis lotion. Cinnamon. Ginger. Essential oils. Epsom salts. A heating pad. Bubble baths. Pelvic floor therapy.

These are all things I have used in the past seven months to manage my chronic pain from endometriosis and a couple other suspected pain generators in my pelvis. Every day of my life, I incorporate a multitude of them to be able to go about my day, to finish my assigned work shift, to be able to drive myself, to get something else done that day other than work and sleep, to be able to think straight, to attempt to be a version of myself that I recognize.

These are all things I use or have used to manage my pain, and these are all things that fail to do so. Even with all of these in play, the pain still persists, still dominates. My deep bench of reinforcements are no match to the litany of attacks my body carries out against itself. Every day, I am failed by the resources afforded me, and the frustration is not minimal.

The chronic pain patient makes trade-off decisions all day, every day. Do I grit through all-encompassing pain, or do I allow overwhelming nausea and stomach pain? Do I limp all day and want to crumble to the floor in pain, or do I choose debilitating fatigue and dizziness?  Do I struggle even thinking straight because the pain takes up all of my brain capacity, or do I decide to take a pill that makes me someone I don’t recognize? Do I allow the pain to debilitate myself, or do I risk lifelong addiction? And, for some, do I again wonder how I will make it through this day, or do I break the law?

We are facing an opioid crisis in our country, and a larger drug problem. I believe that at the core of that crisis is a pain epidemic. Our chronically ill far too often fall into two different camps: the first camp is over-medicated and becomes addicted to pain medication while dealing with their initial disease and all the subsequent side effects, and the second camp’s pain is not taken seriously and under-treated (or treated like an addict), and often end up using whatever they can get their hands on to make the pain stop, and the results are often dire, lifelong, and lethal.

All the while, the DEA is trying their best to ban CBD oil, medical marijuana, kratom, and other natural pain management alternatives from which millions of chronic pain and mental illness sufferers find relief. They are not 100% effective or without their own side effects and trade-offs, but patients and their medical allies should be given the opportunity to evaluate whether those therapies would benefit them.

I don’t write this post to garner sympathy, but in hopes that this will give you, dear reader, a brief glimpse into the daily frustrating battle someone with chronic illness wages everyday in order to operate, live their day, and survive through to the next one. I also hope this has reminded you that the drug crisis in this country is not one centered around crime, but around human suffering, and that it is all of our problem, because even if you don’t realize it, it affects your mom with fibromyalgia, your cousin with Crohn’s, your child’s teacher with gastroparesis, your best friend’s wife with endometriosis, your neighbor with leukemia, your nephew with PTSD, your coworker with Lyme disease, and your friend with arthritis.

So be quick to show kindness to all, and slow to judge; everyone is fighting a battle (whether large or small) that may be invisible to us presently, but is nonetheless VERY real.