Gripping the Wheel of Medication Withdrawal
Last January I posted about my health & skin journey. I was one year off medication, thick in months of a juicing detox that had me spraying goo out of my skin, dissociating from my body and suffering big time. This kind of suffering is familiar and it makes me feel in control, like I’m working towards something, like I’m actually in charge of the mystery symptoms I’ve experienced my whole life.
Well, the wheels of time have turned & here we are one year later. Two years off prescription drugs, 3 years into an experience called Topical Steroid Withdrawal, 3 months on a radically different healing protocol and trying to reconcile the fact that no matter what I do or how hard I push that I don’t actually have any control.
The Wheel of Fortune is a reminder that we exist in constant change that is out of our control. While we never know if what’s coming will bring fortune or adversity, this card asks us to be optimistic & have faith that in the down there will be another up on its way. What may feel like adversity at the time may very well be the very plot twist that leads us to our next biggest glory when the wheel turns again.
Right now not knowing where my wheel is turning feels like a pile of hot, itchy, painful garbage. It feels like my body is a nightmare carnival and I’m being pushed onto the same nausea-inducing ride again & again, all the while shouting “No thanks, I’m good! I’ve got the gist-I don’t need another go!" 🎡
The very nature of going through withdrawal from 3 decades of using high potency steroids, immunosuppressants and biologics is unpredictable and I forget daily that the majority of what I’m experiencing is a waiting game. Once you stop taking the drugs, your body goes into withdrawal and can start healing-an excruciating process that can take months or years. And unfortunately it’s not something you can control or expedite. In a nutshell, it’s an isolating journey and total mind f**k.
Unfortunately, the negative effects of taking these drugs is downplayed & the withdrawal process is not readily recognized by medical doctors & most specialists. It is recognized by the National Eczema Association and there are many groups raising awareness of the dire consequences faced by those who have been prescribed these drugs to heal their skin, when in fact they’ve been causing debilitating symptoms far worse than the initial complaints they started with.
“When the professionals don’t believe what you’re experiencing is real it’s easy to feel shame for not knowing yourself, how to get better.”
Currently, more than 85% of my skin is affected. It’s either falling off or I’m tearing it off. The itch is beyond. Serrated bread knives, sharp bristled hair brushes, kitchen scissors-I use whatever I can to scratch my skin until it’s open or bleeding. Most mornings I wake up looking like a sad, wrinkly elephant and have to rub layers of skin off in the shower to feel my actual face before it crusts over again 20 minutes later. Other days it’s hives, small oozing blisters or swollen eyes. My armpits are currently melting (too gross to show or describe) and I can barely bend my wrists & hands because they are covered in open wounds. One day a bath or shower is the only thing that will provide temporary relief, the next day it is my nemesis & torturer.
And the withdrawal takes its toll elsewhere as well. It affects my ability to sleep & regulate my body temperature. It’s wreaked havoc on my immune system, digestion, hormones, energy levels, mood, cognitive ability and capacity to manage daily life. But the worst part for me is the not knowing. Not knowing exactly what’s happening to me. Not knowing when it will end. Not knowing if a symptom is because of the withdrawal or because of something else. Not knowing how to show up for normal life. Not knowing how to describe what I’m going through to other people. Not knowing what I can do to make this get better.
When the professionals don’t know what’s wrong with you & don’t believe what you’re experiencing is real it’s easy to become lost and feel shame for not knowing yourself, how to get better. And it’s especially jarring when all they want is to prescribe more of what has made you sick.
My pattern when faced with a crisis is to bear down & push ridiculously hard in a new direction. While this has served me in many ways (it’s helped me leave unstable relationships, run a marathon & hold on through the early days of raising twins), it has also forced me into road block after road block with my health.
I’ve pushed myself so hard in so many extreme directions in search of understanding & relief that my body is over it. I’ve tried every diet, medication, supplement, product, test, therapy, healing, holistic approach and rigorous protocol. I have also essentially stripped the joy out of most things. As my health has continued to decline, the only thing I know is to respond with more discipline & control, believing that if I can just try harder I will finally figure it out and get better.
Well, here we are after 37 years and I have not figured it out and it’s all feeling like a bit of a dead end. But a friend recently reminded me that there’s always a third option. An unexpected trap door that we’re often too stuck in our humanness to even see. It’s the path we haven’t considered or the direction that hasn’t fully presented itself yet. It’s an opportunity for the wheel to turn again.
Something I haven’t ever done is slow down. Pull back. Be kind. When the wheel turns for what feels like the worst, what if instead of trying to turn it harder in the other direction, I just held it gently? What if I moved alongside it in acceptance instead of forcing it to be somewhere it’s not ready to be yet? What if my health recovery requires a deep reconfiguration of how I treat myself, especially when in pain and struggle?
What I’m going through doesn’t have a finite end date, predictable outcome or obvious solution except for time. So why waste my energy on trying to force a recovery instead of allowing it to guide me where it wants to go? Because while it’s a painful realization, the truth is we have no control anyway.
When the wheel is not turning in our favour it can feel demoralizing, especially when we’ve been so focused on getting it “right”. It feels like punishment. And if you’re there right now, in any aspect of your life, I’m right there with you. I mean, my armpits are melting for god’s sake! Just remember that the Wheel of Fortune is ever turning, moving us into experiences & places within us that want to be explored, felt, acknowledged and shifted. And know that when it feels like a down, there is always an up coming. And may the gifts we see in the downs carry us *gently* into the ups when the timing is right.
