In my last blog post, I wrote about the difficulties I had - pre-diagnosis - with being taken seriously; with receiving proper care and pain control.
All of that changed, of course, when I went to another doctor (one who did not know me) who followed the proper standard of care, performed a lumbar puncture (which came back as blood red), and ordered an immediate MRI.
To this day, that woman, that doctor, remains my personal hero.
After I had visual proof to back up my claims of extreme pain, things went rather swimmingly for me...with respect to ease in accessing pain control, at least. Those medical professionals who had once looked askance at me in suspicion suddenly began to throw pills at me willy-nilly. I was getting prescriptions for opioids and benzos easily - and by the hundreds - then...and if one didn't work, or made me too nauseous or too goofy, one doctor or another would simply scribble off a script for another.
I eventually settled on one of the contins (controlled release, long acting opioids) as the least of many evils, and spent a number of years playing an unpredictable game of narcotic roulette - on any given day, a spin of the wheel could leave me in a little pain, in tolerable pain, in misery, or in agony.
Until...one day, on yet another trip to an emergency room, one lovely soul suggested I receive an IV dose of Decadron. I can only imagine that what I felt about 20 minutes after receiving that dose of steroids is akin to what many drug addicts must feel when they get a fix. After years of battling one long, intractable headache, I felt absolute peace...no pain.
Decadron quickly became my drug of choice.
That particular trip to the emergency room became a pivotal event in my journey. Not only did it illuminate the reason for my ongoing and increasing pain - that radiation had caused brain inflammation and necrosis - but it gave me a weapon against the pain that had kept me down and in bed for so long...it gave me enough relief that I could stand up, pay attention, and start living again.
It was not a complete magic bullet. I still got bad headaches if I pushed, or got tired...and so I simply continued taking my narcotic contin right along with it (although I didn't require much breakthrough relief, at that point). I bumped along on that cocktail for a few years actually, began to rally, got a diploma in journalism (I could no longer work as a nurse), became a columnist in Halifax, and became a reasonably effective human and mother again.
To this day, I can't believe I did that - took all those meds for so very long.
I've no excuse.
Even though I once blamed doctors for refusing to give me adequate medications pre-diagnosis, I can't blame them for prescribing them afterwards. I am - was - a nurse. I knew what I was doing. And quite truthfully, I know that, in the end, I became the very thing I was first accused of being...a drug seeker. I used my poor battered brain, along with my hard-won visual proof of it, to manipulate any doctor I could into helping me maintain my steroid/narcotic habit.
But...all good things, as it is often said, must come to an end. And in that end, I paid for all of my poor behaviour and choices.
My almost two year long (once again, what the hell was I thinking?) love affair with steroids eventually overwhelmed my adrenal system, and I developed adrenal insufficiency...add yet another lifelong medication to the daily mix. Concerns about my bone health and density began to arise. I bloomed, and grew, into a 210 pound, soggy, irritable and nasty, acned, creature that I still can't believe wasn't completely disowned by her entire family.
My marriage, sadly, didn't survive that beast.
It became all too obvious that the Decadron had to go...
The pain slithered back when I left it behind. The headaches returned, and the contin use increased once again...but I was determined to not play narcotic's game of roulette ever again. And, because of that one pivotal emergency visit, I had something that could maybe help me do that - I had knowledge.
If Decadron was used to treat swelling and inflammation, and if it had worked such wonders on me, then it just seemed logical that swelling and inflammation was the enemy that I had to fight if I was to ever to be healthy and functional again. And I became determined to search out alternative, more natural, ways in which to do that.
My journey towards self-healing had begun...