Redefining the Mission to Remission

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!

19534_267734393703_3560850_nI 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.

Remission(ish) & The Next Epic Adventure

I just took a peek at Lisa Ray’s blog and there she was, with her tiny spirals of post-chemo curls and her cancer carol of the moment: “I wish you a long remission, I wish you a long remission.”  And I thought, my hair is back, too, Lisa!  I’m in remission, too, Lisa! … Okay, remissionISH

Lisa Ray and I, we’re an entire disease apart, but when I saw her prednisone-induced puff face on the news over a year ago, our somewhat mirrored experiences gave me hope… and a companion in the fight to get better.  I check in on her every now and then, and it makes me happy to see her proclaim herself as a cancer graduate, a survivor in remission.  She has also, by choice, stopped taking “upkeep medication” since there is no proof that they will keep her in remission longer.

Her decision made me revisit one of my most enduring thoughts:  Will there ever be a day when I can trust my immune system enough not cause cellular apocalypse without major prescription protection?  Will I ever be able to live in my “natural body” again without having to accept crippling pain with the package?

Remission is when symptoms disappear completely for a long period (over 6 months, usually).  This is where the “ish” comes in. I still have Lupus symptoms, but the ugly, nasty ones like tissue, joint, and organ inflammation are mostly incarcerated in the House of P & P (Prednisone & Plaquenil – and lingering traces of Methyltrexate, I suppose).

We pause for a White Blood Cell Update: Last blood test showed I am at 3.0/4.3.  Big M is still banned until next month, when I have my appointment with Dr. H.  Then, (you guessed it) more blood tests.

I guess my point is that I have been given my body back, not fully, but with the proper upkeep, things are actually doable again.  I can finally move, really move. I’ve been updating you on boring medication changes and reflecting on bull shit from the last year, but I haven’t told you what I am doing with this crazy opportunity I have in front of me – this time of remissionish.  I’ve said all along that being really sick is easy, it’s staying well that’s the dirty job, so it’s time to start trying things, to document them here.

After 9 years of hating my body, of cursing my body, I’m going to take it back.  I’m going to learn how to trust it, to move it, to feel part of it instead of separate, instead of an opponent.  And one of the ways I’m doing it is in the most embarrassing, challenging, humbling, and ridiculous ways I can.  Yes, that’s right, it’s already begun:

I’m taking a dance class!

I am excruciatingly bad.  After four classes, it is apparent that I am without a doubt one of the weakest students in class (intro jazz), but I am determined to suck with spectacular awesomeness.  It gets better – there’s also a recital at the end of the year.  If you thought my “Battle of the Brain” was epic, you ain’t seen nothin’ yet…