There was a time not long ago when I thought I would never arrive at this milestone. Numerous times I tried to taper off prednisone, and each time my chest pain returned. In October 2021 during my first hospital admission, I was given 40 mg after surgery and that remained my daily dose for many months. Finally, after several attempts at tapering which led me back to the ER, I managed to get down to 15 mg by summer. Today, one year and four months later, I can finally celebrate 2 months being steroid free.
It’s been a long road, and as much as I hated being on prednisone long term, I know it was integral in keeping the pericarditis, and whatever else was taking over my body, in check. However, I was oblivious to how terrible I’d feel as my body, specifically my adrenal glands, adjusted to working on its own again.
As I slowly tapered from 5 mg to zero, I began to suffer alarming symptoms which, at the time, I had no idea could be attributed to withdrawal. Most notably, mild chest pain reappeared intermittently, while my breathing was unusually labored when I ran. As the dose was reduced fatigue ensued, morphing into full body exhaustion where I couldn’t fathom moving. Even my face and eyelids throbbed. When I simply walked around my house, I was immediately out of breath and extremely dizzy every time I stood up. My joints ached, my muscles hurt despite hardly moving, and my brain felt as if it was being hijacked by an impenetrable fog that threatened to suffocate me.
On days when I managed to run or go for a walk, I felt as if I had gained 50 pounds and had never run a day in my life. There was a point when it hurt to merely carry a purse over my shoulder or sleep on my side, because the pressure on my joints and muscles was too much.
The entire experience, which persisted for three weeks, was very unsettling. I honestly thought it was either some new bizarre disease taking over my body, or the missing puzzle piece that would confirm a diagnosis of lupus. To my surprise all my blood work was completely normal so that took lupus off the table.
Meanwhile, none of my doctors mentioned steroid withdrawal. I finally googled it (which I typically try to avoid doing) and found tons of articles describing exactly what I was going through. When I mentioned my theory to one of my doctors, he agreed with me. I was relieved to know the cause, but I wish I had been warned so I could’ve avoided all the anxious moments and sleepless nights worrying about what the heck was wrong with me yet again.
Thankfully, after a month of being prednisone free, my symptoms improved. The fatigue began to subside, the overall body pain faded, and I was able to run/walk again without being completely out of breath. I started lifting weights regularly and mixing up my workouts. I was ecstatic when I was able to pick up the pace on my runs because I had begun to believe I would never be able to attempt a speed workout or long run again. Finally there was light at the end of the tunnel.
Once I understood what I was dealing with, it was easier to cope. I suppose that exposes my lack of faith that things would work out the way they’re supposed to. I admit there was a point when I gave up believing I’d ever feel good again. I started to believe that long-haul had won and this was my fate – I was doomed to endure this, or even worse, forever.
Despite my wavering faith in these moments, I recognize how these experiences have strengthened me. If this had happened to me a few years ago, I probably would have rejected faith altogether, lost hope, and given up early on. But this past year and a half (thanks to some amazing people and experiences on the road) I’ve learned to take things one day at a time, to focus on the blessings around me, to trust God more and to find a way to use what I’m going through to help others and turn it into something positive – even when I feel like crap. So, even though these past few months have been physically challenging and I experienced moments of doubt, I can honestly say that I’m growing stronger – physically, mentally, emotionally, and spiritually.
That’s undeniable proof that God is – and always has been – looking out for me. There’s no other way to explain the shift in my attitude because left to my own devices, I know I would’ve given up long ago. Yet somehow (dare I say, miraculously?) I’ve become stronger and more hopeful than ever.
So today I’m celebrating two months free from steroids. I don’t know what tomorrow will bring or when I will feel 100%, but the most valuable lesson I’ve learned is that there is someone out there who does– and that’s good enough for me.
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Jeremiah 17:7-8 – But blessed are those who trust in the Lord and have made the Lord their hope and confidence. They are like trees planted along a riverbank, with roots that reach deep into the water. Such trees are not bothered by the heat or worried by long months of drought. Their leaves stay green, and they never stop producing fruit.
Isaiah 43:2 – When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.