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.

 

It Is What It Is

On May 26th, I crossed the 10 K finish line six minutes faster than I did last year, thanks to the magical presence of my amazing running buddy. Ever since I started running, I have been adamant that I would never run with anyone. The pressure and stress of keeping up with someone else was the complete opposite of the tranquil, solitary experience I was looking for. I wanted to be able to listen to my own body, to stop when I needed to, to go the pace I was comfortable with. So, when my friend offered to run the 10 K with me the week before the race, I was hesitant. My friend is a much faster runner and at a level of fitness that more than surpasses my own. When she assured me that she was willing to go at my pace, I happily accepted her offer, grateful for the support and the company. My left leg had been acting up my last few training runs, with shooting pains running up my thigh. I had resigned myself to walking most of the race, but with the distraction of great conversation and the shouts of encouragement and motivation from my running buddy, I stopped only once. It was a surprise for both of us to cross the finish line at 1 hour and 8 minutes. I had forgotten to wear my watch and my friend had left her pacer at home. It was a great feeling to go into it with no expectations and realize that I was able to achieve a personal best. As it always is in life, I couldn’t have done it alone and was grateful for the love and support I had that day, including my parents, who were waiting for us at the finish line.

This personal victory was balanced out by my most recent test results, which once again revealed a very low white blood cell count. This time, it’s 1.4. The up and down of my white blood cell count has been a pretty consistent thing in the last two years and I’m at a loss at how I can be pro-active and preventative. I asked my rheumatologist what I can do to increase white blood cell production and she looked at me apologetically and said, “unfortunately, all you can do is eat well and rest.” She said my low count means that my lupus is active, that it is affecting my bone marrow’s ability to produce a normal count. The reality is that as a lupus patient, my count will always be low, but 1.4, of course, is in a bit of a danger zone. The drill is the same, with me re-testing in a few weeks and hoping that my count will go up so that I’m not prescribed another medication.  I had been working with my naturopath, hoping to come down off my current medication. Sadly, it seems that I’m not as stable as I seem to think I am.  I may not be ready for that kind of step for a while. In the meantime, I’ll try to eat as cleanly as possible and try to do better at normalizing my sleep patterns, which has been a huge challenge over the last four years. Regardless of the fact that I’m prednisone-free, those sleep deprived nights of four years ago are still in my body’s memory. I can’t seem to wean myself off of my night owl habits, regardless of how tired I am. I sometimes feel like I’m addicted to staying up late.

I have been more tired than normal this past week and a little tender around some joints, perhaps in part because of my low white blood cell count, although I can’t be entirely sure. What I can say is that I’m feeling content to go with the flow and deal with what happens as it comes. The lupus in my body is just doing what it does and it’s not my place to judge that as good or bad. It is what it is.

Curry, Cauliflower, Cranberries & The Golden Rule

It’s the first really cold night of the season and I’m keeping myself warm with an oven full of curried cauliflower with cranberries.  Who knew that particular C-combination would be sooo delicious?  I popped it in the oven late tonight to pack for Monday’s lunch and it’s been a challenge to hold back from eating it all! Check out Choosing Raw’s super easy recipe here.

The change in weather and the upcoming Christmas season have unleashed the hacking and flu-ridden, bone chilling, Raynaud’s inducing temperatures, and tempting seasonal goodies and drinks (the kinds that are more likely to encourage Lupus than keep it at bay). I need to be careful, especially with my white blood cell count dipping back down to 1.5. This time around, my rheumatologist seems unconcerned, so much so that there’s been no talk of increasing my meds. I’m pleased with this of course, but it has left me very confused.  Why so laid back the second time and so panicked the first? I’m not sure how concerned I should be, if at all!  I will email my rheumatology nurse this week, but in the meantime, I’ll follow what I’ve learned is the golden rule when it comes to these matters: When in doubt, REST.

So, a peaceful rest to you, my friends, and a happy, cozy week ahead.  :)

The Proof is in the Prednisone

 

While perusing my blood test records, I made a huge discovery.  One year ago, I was back on prednisone in an attempt to increase my low white blood cell count. After a few weeks, my WBC was up to 2.8, so my rheumatologist insisted that I keep taking a low dose to continue to stabilize.  It was then that I started a gradual plan to wean myself off prednisone with my naturopath, paired with a renewed focus on food as medicine.  A year later (this past June), after 8 months of being off prednisone, my WBC was 2.8, the same as it was when I was taking it a year ago!  This was it, the huge breakthrough I’ve been working towards for past three years, the first real results of all my wellness experimentation!  For the first two years, it was nearly impossible to understand what was happening with my body because of all the different drugs I was taking.  Was Lupus acting up or was it a side effect from one of the drugs? Were the drugs making me feel better or was it because of the lifestyle changes I was making? Now, I finally have some concrete evidence that my body does not need prednisone to keep Lupus at bay.  The proof is in the prednisone, or in this case, the lack there of!

And what better way to celebrate this invigorating discovery than enjoying a yummy Asian noodle bowl inspired by a Thrive recipe, an outdoor run, and a nutrient-packed post-run snack?

Cucumber, collard greens, cilantro, & cashews over brown rice noodles & Asian peanut sauce. Yum!

 

Post-run snack: Almond butter & avocado on a rice cake… who knew it could taste so good?