When was the last time you woke up and realized you’d been a drugged zombie for 17 years?
That happened to me. This month: May, 2017, I went through what is, I hope, my last withdrawal from psychiatric drugs. (I remain on lithium, which is killing my kidneys slowly, but I need it, at least for now.)
And now I’m me again. But who the hell is “me,” and what am I supposed to do? Having been disabled by my various chronic conditions, multiplied by the even more profound disability of the drugs that were supposed to help me function, yet enveloped me in such a cloud of grey fuzz that I was insulated from both my environment and myself, I awake to find a gulf spread out between myself now and myself in the past, with no way to possibly bridge it. 17 years.
If it had not been for the drugs themselves doing what drugs do (side effects and adverse reactions), I’d still be moving about in a sea of brain fuzz. I had no notion of stopping them on my own. The opposite! I was convinced that it was only those drugs that prevented me from the inevitability of suicide. But even before I began getting serious side effects that contraindicated the antipsychotics and antiepileptics, I had started to sow the seeds for what would serendipitously become the replacement for not just one, but seven, psychoactive drugs, plus a prescription antiinflammatory.
I started taking cannabinoids as pain medicine. Following a protocol hybridized from several in use, I began a scheduled dosage of cannabidiol (CBD), along with microdoses of THC. I started this in the fall of 2016, and the pain relief has been superior to anything else, with minimal negative side effects and a whole load of positive ones.
When my antipsychotics began to cause extreme muscle twitching and movement disorder, I thought for sure I was doomed, because I really had benefited from their help. The combination of brain without quetiapine and brain in withdrawal from same really did haul me to the brink. And that was before I ever thought of cannabis.
Fortunately I had plenty of benzos to blunt the crash, but I’ve always been very careful not to get hooked on the benzos….and actually didn’t, despite being on them nightly since 1989. More about benzos shortly.
The next to go was my darling lamotrigine. Now, modern neuroscience tells us that bipolar disorder shares features with seizure disorders: there is a type of “kindling” that begins as a misfiring somewhere in the brain, which can then spread to other parts and finally, if that process is not interrupted somehow, involves the entire brain, causing an acute episode. Medication and other treatments can stop this from happening, or at least blunt the reaction (note: CBD is shaping up to be a very effective antiseizure medicine, as proven in study after study). Since antiepileptics help in bipolar disorder, that adds weight to the hypothesis that bipolar shares features with epilepsy. Clearly, I did not want to stop my lamotrigine; but I developed the most feared side effect: toxic epidermal necrolysis. This causes the layers of one’s skin and mucous membranes to separate and slough off, like a second degree burn. It is incredibly painful and can be life threatening. Fortunately mine didn’t get that far, but it was terrifying. Bye-bye, lamotrigine!
I waited for the backlash after quitting lamotrigine, but none came. By that time I was slamming the CBD every four hours, for a nasty episode of spine arthritis pain. Either I had suddenly stopped needing antiseizure meds, or…wait….I was taking them–just a different one, for which my body has actual receptors: CBD, which activates CB1 receptors in the brain.
The winter wore on, and I found it necessary to have my injured left wrist operated on for the 4th time. Even though that’s not a huge surgery, there would be pain afterwards, and if I hoped to receive any opioid pain medication, the benzos might have to go. I decided to taper over six weeks, which is very rapid for benzodiazepines. These drugs, which have helped me and many others immensely, are very hard to get off of. Our bodies love what they do.
I was also taking Zolpidem, a sleeping pill that works on similar receptors to benzos. In effect, I was taking two different benzos! That had to stop. And if that weren’t enough, I had a third benzo that I took when my PTSD broke through: clonazepam. Three different types of benzodiazepines.
It wasn’t as hard as I expected. The CBD stepped right in behind the benzos, and now that’s what I use. The benzos didn’t make me stop having PTSD. They helped me sleep and function a bit better in everyday life. CBD does that too, and I feel like I’ve walked out of a wall of fog.
Along the way I got rid of the gabapentin (prescribed for neuropathic pain: THC works much better), and the celecoxib, which is supposed to be for pain/inflammation, but CBD/THC combinations work worlds better and cost much less.
Yes, medical marijuana is costing me much less than the copays for my prescription drugs, which at one point were close to $500 a month– with Medicare! My oils, tinctures, and herbs are now costing me less than $200/mo. Soon I hope to grow my own, which will cost even less and I’ll be able to grow organically. I’ve substituted one botanical for eight pharmaceuticals. Hmm, no wonder Big Pharma is all about patenting those cannabinoid analog drugs and suppressing the medical marijuana movement!
I feel like someone who has been sucked up by a vacuum and plopped down somewhere entirely different. I can see where I was at the beginning, and I see where I am now; but the ground I have traveled is invisible. It is a chasm. I am no longer who I was then, and no longer who I was along the journey.
Fine, you say. Congratulations! But it’s not so simple.
You see, I became disabled from working at any job whatsoever on 4/4/2000. Since that day I have maintained my medical license and all its requirements. I tried to go back to work a couple of years after my breakdown, only to find that the system has quirks in it that do not include doctors with bipolar disorder. I was trapped being sick.
I did do a few miscellaneous things with my time, but between my physical illness and my brain and its special disabling brain-drugs, I was trapped into being a sick person.
I have always felt that the brain part was the limiting part, since people manage to continue to work with all manner of disabilities, up to the point where the body simply puts on the brakes– like, for instance, the years I have spent on the toilet. Or the years without use of my hands, due to joints falling apart and needing surgery. Or the vexing problem of not being able to look up, down, left, or right, due to neck arthritis.
With my head out of the fog, I’m looking into the future. It looks awfully scary. I used to not care about the future, because I was certain of dying from one thing or another before I got there. Now I’m not so sure, given the salutary response to cannabinoid therapy, that I won’t have a shot at another decade or so.
Problem is, I won’t be able to afford to live. I have private disability insurance that will (if they don’t find a way to screw me out of it) continue till age 65, which is another year and a half. After that, it’s Social Security, if there still is such a thing by then. And although I’ve saved aggressively, I don’t have enough to even remotely get by. And, lamentably, I don’t think I will be magically all better by then. My skeleton will still be a wreck, and my guts will likely still be a-bleedin’. I won’t be able to work at Wal-Mart, unless they have a back office with a bathroom.
It’s a great grief to look back over that 17 year chasm, back to myself doing my doctor thing, the life I loved. Now I’m just an aging sick person, soon to be an aged sick person living in poverty. This was not what I requisitioned. I did not work three jobs to put myself through The University of Chicago, to end up as one of the underhoused/homeless seniors I meet on the road. I did not work my way through medical school and graduate school so that I could live the rest of my life disabled. I did not work 120+ hours/week for three years of residency, only to become a patient myself, with nothing to show for my passion.
It’s tempting to throw in the towel, seeing what a colossal waste my life has turned out to be. But not yet: I have time. There’s always death waiting. I want to see what’s out there, at least until my next surgery. A joint replacement, and I don’t mean that kind of joint!
At least maybe then I’ll be able to play my banjo. That really was the last straw with the “god” thing: taking away my hands. If that very god looked upon me as I played, clinging to that banjo for very life during the hard times–since the moment I first picked up a banjo at age 19, it has been my comfort, my solace, and my joy where there was none before. And my prayer, my meditation, my chant. So if then there was some god watching as I played, and it decided to afflict my hands and take my one direct line to joy away, then I say….shame! For tormenting the tormented.
At least if I get a new wrist and can make it work, then I can sit and play and people will throw money. I’ll be grateful.