Into the Woods

Into the Woods

I’ve been absent lately, neglectful of writing and missing the fourth birthday of this strange, little online memoir. How it still manages to stay with me, tagging along in the quiet, post-crisis lull of food recipes and white blood cell count lamentations, I have no clue. I am glad though, to say that we are both still here, struggling as we are to understand what story we now have to tell.

I did, however, celebrate the four full years since my last major flare up (the longest flare-free period of my lupus life) by spontaneously hopping a train to the middle of the Rocky Mountains. I went by myself; hiking, trail cycling and kayaking (for the first time), immersing myself in the aqua blue of glacier lakes and the deep stillness of backcountry woods. The trip reminded me of how integral being outdoors was during the first six months of my recovery four years ago. Everyday, I went for walks with my parents, then eventually, when I was well enough, I would go on my own. I’d been so busy training for my run, I had forgotten the merits of slowing down, the healing power of a leisurely stroll in the woods. Since I’ve been back, I’ve been doing just that with friends and on my own. It has helped me prepare for this next stage of my wellness journey: Taking a real stab at my impossible dream – being medication-free.

A month ago, my white blood cells were up from 1.4 to 2.1. Since I was at 1.4, I’ve reduced my dosage of plaquenil one day out of seven, which leads me to believe that plaquenil isn’t a major factor in keeping my white blood cell count at a safe level (not that 2.1 is a safe level, but you know what I mean). It’s too early to tell, though. I can’t ignore that I’ve been on “Constant P” for twelve years. It will take a while for the medication to take leave of my body, especially with such a small reduction. My inflammation rate in my body rose from 5 to 24, which isn’t the greatest, but my naturopath says there’s no need to be alarmed. I may have been fighting some kind of infection that day. Presently (and thankfully), the rise in inflammation hasn’t manifested as pain of any kind.

The next steps are a very slow reduction, herbal supports and blood tests every three months to monitor my progress, very much like the process we went through getting off prednisone. There are risks, of course, and I have my eyes wide open. I am ready to solve the mystery of what plaquenil is doing to help (or not help) my body, so I can better understand what it takes to make my body a chemical-free zone. All the medication experiments/purgings and life-style changes of the last four years have come to this final test. It involves a lot of commitment, supplements and lifestyle modifications that I need to stick to, all of which can be quite overwhelming at times, but I am determined to purge twelve years of pharmaceutical toxicity. As my followers know all to well, I love an epic battle.  Bring it on!

And if I ever need a reprieve from the exhausting 24-hour job in the office of my own health, I will remember to take my tea break into the woods, where this is nothing to do, no risks to take, no sacrifices to make. Just trees and sun and moving forward, all at your own pace.


On The Naturopath: Taking the Herbal Plunge

Exactly two years ago, I was pacing the emergency room in frantic circles, my mind spiralling down into psychosis.  I will never know what truly caused it.  Lupus-induced brain inflammation (Lupus Cerebritis)?  The side-effects of prednisone?  A lethal combination of both?  Since then, Evil P, despite strong evidence it caused the most difficult time of my life, has remained, not only in my body, but as an integral part of my treatment plan. Does my body really need Evil P to live a quality life with Lupus?  At the moment, due to my white blood cell fluctuations, my rheumatologist assumes I do, but I’ve experienced no change in my energy levels or  (lack of) symptoms when I was on or off Evil P.

My recent blood lab revealed that my white blood cells are up from 1.9 to 2.7, most likely caused by the reintroduction of Evil P.  However, whether the original dip in white blood cells was due to being off prednisone is still in question.  A person’s white blood cell count can fluctuate daily depending on whether the body is fighting an infection at the time.   When analyzing my previous labs, my naturopath discovered that I was showing levels of bacteria in my urine, a sign that I may have been fighting an infection at the time.  She was disappointed that my rheumatologist didn’t order another blood test to reconfirm results before putting me back on a drug that has so many mental and physical side effects.  Regardless, it’s clear that my body still needs the help of an anti-inflammatory, whether it’s natural or chemical (or both) is still in question.

Tomorrow, I start a three-month plan with my naturopathic doctor to slowly phase out prednisone with the help of herbal supports.  At exactly the three month point, I will get blood work done and re-assess according to the results.  I’m still on plaquenil everyday, twice a day, so it’s an experiment involving chemical and natural interventions in equal parts.  It’s safe, slow, and under stable conditions.  I know I’m in good hands with both my naturopath and my rheumatologist.  They both have different views, but I’ve never doubted that both of these amazing women have my very best interests at heart.

I’m not pledging allegiance to either side.  It’s important to note that my naturopath herself is taking a combination of herbal and prescription medication to treat her Lupus. I’m tired of feeling confused about my treatment plan, of being the ignorant “yes man,” of not truly engaging in a thoughtful investigation of my own health.  Shifting your confidence to your body’s own abilities and natural remedies rather than prescription medication means a higher level of dedication and commitment.  I’m nervous, but I ground myself in knowing that regardless of what happens, today, I’ve officially broken the “two year curse.”  For the last six years, I’ve experienced an almost identical sequence of events almost exactly two years apart:  Severe flare, hospitalization, sick leave, move back into parents house, short period of wellness, regain independence, return of symptoms, repeat.

Not this time, baby.