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.


5 thoughts on “Into the Woods

    • Hi, Cam. I don’t know what your email is – it doesn’t show up with your comment. Feel free to post your question here and I’ll do my best to answer!


  1. Hi Elena,

    I just wanted to give you a word of caution about Plaquenil. Like you, I was on this medication for about 15 years for systemic lupus. About a year ago, I had my every-six-months vision exam and was told my visual field test was abnormal. I was then sent to a retinal specialist.

    The doctor told me I had peripheral vision damage and that he didn’t know whether I would ever get my full vision back. He also added that the damage may progress and I may continue to lose more and more of my vision because Plaquenil deposits in your body fat and it’s difficult to get rid of it. And as long as it is in your system, it’s causing damage to your eyes.

    For years, Plaquenil was a wonder drug for me: I had energy, my assorted pains subsided, the fevers went away and I was able to function again like a healthy person. Maybe it’s an issue of long-term use, however, I would have traded all that in had I known I would lose my vision in the future.

    I just want to tell people my story (and by the way, I’m not the only one. If you google “Plaquenil eye damage” you’ll see others) and hopefully help someone before they have vision loss also.

    Take care,


    • Hi Cathy,
      Thank you very much for the warning and for sharing your personal story. I am aware of the risks of potential eye damage and it is one of the many reasons why I am trying to reduce/eliminate plaquenil’s influence on my body. Are you still on plaquenil? If not, are you taking anything now?


      • I searched and searched and found no adequate substitute for Plaquenil. All the other recommendations not only had some harsh side effects, but were also untested for lupus.

        I forgot to mention that my doctor is one of the top lupus doctors in the United States and yet, I still lost part of my vision and yet, he can’t recommend anything other than steroids.

        So, for those reasons, I choose to be on nothing right now. I still feel okay because it will probably be years before all this Plaquenil is out of my system. After that, I don’t know. Maybe there will be something better in the near future.

        My biggest problem, though, is bone density. Lupus has caused me to have osteoporosis and the meds for that are even worse than the ones for lupus.

        Sorry to be such a bummer, but it’s my reality.

        I wish you health.


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