On the side bar of this blog, I, in my regular exclamatory fashion, boldly proclaimed that I was on a “Mission to Remission!” The accompanying photo was romantically side-profiled, my feet perched on the edge of a dusk-reflected shore, backpack adventurously strapped on, eyes fixed on the rocky, lupus path ahead. Typical Elena-style dramatics to say the least!
I deleted it recently without much thought, but with the feeling that it no longer belonged, although at the time, I couldn’t articulate why. This past weekend, I walked proudly beside my brave and amazing friend, who is in remission from another chronic, invisible illness, Crohn’s. I started to think about the word “remission” and what it means to me now, almost five years after my dramatic proclamation.
Remission is defined as a temporary or permanent absence of the manifestations of disease. According to the Lupus Foundation of America, the more common usage in relation to lupus would be:
… “in remission on medications, or quiescent (quiet).” This would mean that the person with lupus is taking Plaquenil® (hydroxychloroquine) and/or other medications and is doing well with no evidence of lupus manifestations such as arthritis, rash, kidney involvement, blood cell count problems, etc. This is the goal for most people with lupus, but is not always possible.
As it is defined above, I am not in remission, although I am the closest I have ever been in my almost 13 officially diagnosed years. I am on Plaquenil, my ever “Constant P,” and I have not had a major flare causing hospitalization in almost five years, the longest gap of time in my lupus history. I no longer suffer from debilitating pain caused by joint and organ inflammation, but I still have a constant butterfly rash, Raynaud’s Syndrome, lupus headaches/fog, muscle weakness, fatigue, sun sensitivity, and a chronically (and sometimes, dangerously) low white blood cell count. A few weeks ago, my rheumatologist decided I was stable enough to only see her every nine months, an unexpected milestone I never thought I would achieve.
The war cry of my mission to remission was what I needed at the time I put it up, the aggressive self-motivation that helped push me through my long and hard recovery. I am on the other end of that journey now, sitting on the simmering pot of my semi-dormant disease. The difficulties are different now, the struggle to keep my independence, the professional and personal sacrifices required to keep the wolf at bay, the pressure, the stress, the fear that I will fail and all the pain will come back. The mission is a quieter request these days, a mindful striving for “quiescent” or from its latin roots, “to be still.” I want to capture that stillness, to hear the slow, softening whisper of the simmering pot whether I achieve my dream of getting off my medications or not. The goal of being medication-free has been a huge fixation, a result of over a decade of on and off experimentation with a long line of drugs that at one time, almost cost my life. The goal remains, but a dormant, quiet state with the use of medication is a more realistic and equally desired outcome.
I used to think that remission would be trumpeted in, red carpets unfurling, but I suspect there will be nothing at all, just the sweet, non-existent sound of lowered fists, of balance restored. A mission accomplished for that one moment in time, a silent celebration I hope I will be lucky enough not to hear.