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…

 

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