As a life-long learner, I read constantly. I read everything I get my hands on.
As a disabled woman who wants to learn everything there is to know about my conditions, I read some pretty weird stuff sometimes. I get up in arms about the possibility of Medicare being cut because that’s my only insurance.
As a chronic pain patient, I began to worry in 2017. I worried that those of us in the chronic pain community were about to lose our pain medication.
I really hate being right about that one.
At the time, part of me said “it’s not going to happen” while the other part of me, the realist didn’t agree. The realist was right again.
I don’t think anyone could fathom just how bad it could possibly become though. I decided to take matters into my own hands.
I had been responsibly taking opioids for my fibromyalgia, lupus, osteoarthritis pain since 2009 when I fell down a flight of stairs. Responsibly means having never sold my pills, failed a UA, run out of pills before my refill date, and did everything that my doctors recommended. In response to a Medicaid edict, I even went off of them for 6 months when Medicaid refused to cover. This was leading up to my coverage being under Medicare.
I suffered that six months, but that was in 2015. I knew I was getting them back, I suffered through, and was very happy when that time was over with.
Nonetheless, in 2017, I was struck with an ominous foreboding of the opioid crisis. I decided to take matters into my own hands instead of losing my prescription on someone else’s terms.
This decision happened to coincide with my actually being informed that my doctor would no longer be prescribing. We were all being unceremoniously given one last month of meds and cut loose. The doctor informed me that he would help me find a new pain management practice because he honestly believed that I should be medicated.
Of course, I did not foresee how the next several months were going to pan out. I had no idea that I would be traveling to say good bye to my beloved father. I had no idea that my marriage was going to blow up forcing me to run like hell. I certainly didn’t foresee the 6 weeks I would be flat on my back with the shingles. I didn’t make finding new pain management a priority.
I did my research. I made my calculations. I figured out how far I needed to wean down to make my quitting Percocet easier on me. I did, however, expect withdrawal to be horrifying. I told exactly two people what I was up to. I didn’t want anyone worrying about me. I just wanted to come out the other side of it.
The time came when I took the last pill. Part of me was terrified of what was to come. Another part of me wondered just what my pain would be like unmasked. It had been pretty horrifying before I started pain management. I hoped that I would be better prepared.
I went through withdrawals for exactly two days.
After eight years. Two Days. And it was no worse than a minor case of the flu.
When the withdrawals were over, I realized something else too. My pain was worse than I remembered it being.
It was awful. The stuff that nightmares are made of. Still, I was determined to at least take a short break. For some reason, I also didn’t think it would be an issue getting them back. Surely people would not be so inhumane to say “no” to a chronic pain patient, right?
Turns out there are a lot of inhumane people out there. Too many doctors that practice without compassion and it reminds me why I much prefer the company of my cat, Sebastian.
I had heard that the opioids would make my pain worse when I first came off of them. Then it would get better.
I want my meds back, but now I’m a prisoner of the war on opioids. Doctors are running scared. Nobody in my new hometown wants to write me a prescription.
With fibromyalgia and related conditions, the pain threshold is relatively low. That means that we feel pain from things that don’t cause pain to the general population. For example, blood pressure cuffs are a nightmare for us.
Our pain threshold might be low but our pain tolerance is extremely high. You see, we can actually function for longer periods of time at pain levels that would make a mere mortal feel like they were dying.
Dying. Yet that is how our pain feels every single day. I personally function at an 8/10 on the pain scale. Childbirth is considered to only be a 7/10. I function better when I can mask it though, but masking it requires Percocet. But that option is being taken away from us.
It feels like the war on opioids has become a war on chronic pain patients. We are nothing more than collateral damage.
We are starting to get louder though, can you hear us yet?
Denise Hedley was initially diagnosed with Fibromyalgia in 2009. Her condition has worsened, and a diagnosis of bilateral RSD came January of 2019. She also suffers from Osteoarthritis, 2 herniated discs, and Systemic Lupus Erythematosis. She is still waiting for referral to new pain management, and continues to suffer without pain medication.