I was diagnosed with the mildest form of a rare autoimmune disorder in fall of 2017, the first symptoms of which had presented themselves at the end of that July. This was just over one year after my biological father had died and I’d suddenly become executor of his estate, and point person for all matters pertaining to cleaning out and selling his run-down and junk-filled little house.
I was prescribed a short dose of prednisone, a steroid which is highly effective at knocking disorders into submission, if not entirely into remission, but very hard on the body’s systems otherwise. I was a whirlwind of activity that fall—adding significant storage and worktable space to our home office most notably, but active on a great many projects in parallel—and the week of steroids only kicked that up a notch. The meds did their job and my symptoms abated. I felt a huge weight lift also as the estate officially closed and, with the scattering of his ashes, my duties as executor came to an end. I turned my attention with relief and eagerness to my own projects, and somewhere inside I began to give myself permission to stop scrambling so hard
Some of that slowing down was just plain stumbling. It was the fatigue of all the hard work I’d been doing and the shocks I’d been weathering, exacerbated by life under the Trump Administration. The anxiety brought on by the past few years—compounded by perimenopause and (though I didn’t understand it well then) the side effects of my medications for my disease—was showing its fraying edges.
Thanks to my years of practicing Discardia, my instincts in times of overwhelm and low mood are good. I began to create space around myself and turn my attention from that which drains me to that which restores my calm. I unfollowed a large amount of my Twitter list, already quite low, to tune my Twitterstream to a generally more positive mood. I returned to my love of games and began thinking about how to create happy, positive, calming games. But I was feeling very tired.
At the very end of December 2017 and in the first days of 2018 I began having symptoms of the more intense form of my autoimmune disorder and my life changed completely. Because my symptoms I had to change major aspects of my daily routine, even after I very rapidly got a confirmed diagnosis and began taking medication—twice the dose of steroids as before. Extreme sensitivity meant I had to change my wardrobe entirely, not only fabrics but the style and fit of clothes. Massive fatigue transformed me from a “these are the 30 things I want to do today, but here are the most important 10” person to a “it was a good day, I got 1 thing done” person. And increased anxiety and overwhelm (plus being on immunosuppressants) further limited my ability to participate in social and political life. The medications distorted my body over the months, bloating my torso and giving me ‘moonface’. But they did work to put the disorder into submission, possibly even remission entirely, though I won’t know until I fully taper off the medications.
And there’s the real challenge. Prednisone works great to knock disorders like mine into submission, but the hell it puts you through along the way is brutal, so you want to take it for as short a time and as low a dose as is possible while remaining effective. Other immunosuppressants like, the post-transplant medication Cellcept, can maintain that symptom suppression with milder side effects (for me mostly bloating and distortion of my lower torso, plus some fatigue). So as soon as my symptoms abated, I added Cellcept to my regimen and began the agonizingly slow process of tapering off prednisone.
You can’t just quit prednisone, you have to wind it down very, very slowly. And because—at the kind of peak dose I was on (40mg/day)—it says to your cortisol system, “Hey, I’ve got this, go take a vacation” you find that side effects continue to be life-disrupting for months and months. I dropped from 40mg a day to 30mg a day of prednisone on February 13, 2018, after taking that highest dose for just four weeks. My taper reached 20mg a day on March 27, 2018, and 10mg a day on May 12, 2018. But it’s that last part that is the most difficult to wean your body off of as you wait—and wait, and wait, and wait—for your cortisol system to wake up again. It’s May 24, 2019, and I am just next week hoping to bring my tapered dose down to 2mg a day.
Had I known then what I know now, I’d have done my taper differently instead of going too fast last summer and winding up needing to spend three months holding at 5mg a day. Now I taper ridiculously gradually by altering my dose within a week. I was at 3mg a day. Then after at least two weeks at that dose, I started taking 2mg instead every third day: 3/3/2. If that is giving me trouble at the end of the first week, I go back to 3mg a day for two weeks before I try it again. If it’s okay, then after two weeks of 3/3/2, I try 3/2/2. That’s where I am now and it’s going well. Next Wednesday I’ll begin a couple weeks of 2mg a day before I evaluate whether I can proceed to 2/2/1. Best case, which I’m learning is unlikely, I’ll be off prednisone in about three months.
Whenever I do finally break free of prednisone, I need to spend at least another month letting its influence leave my system before I can start to consider beginning my Cellcept taper. I’m hopeful (and pretty confident) that that is not nearly as rough a process. But even so, I can expect that the soonest I’ll be living without my body altered by these medications or the presence of this immune system disorder will be over a year from now.
My life has been radically changed for multiple years. My fatigue and anxiety forced me to bring my world to a standstill; to stop the ride so I could get off and evaluate things. And that evaluation and this experience have brought me new skills (meditation and acceptance, most valuably) and clarified priorities. I am not the same person I was, and for all the difficulty, I feel good about who I am now.
Even if I had my old energy and health back this instant, I would not resume the life I had before. I am closer to center than I was and I like that. I continue to work to regain my strength and vigor, but for new priorities. I feel that I am standing in the early morning sun beside a large field, shovel in hand and ready to continue the slow, satisfying work of turning the earth for a garden.