Constant P Revelation

When I think of all the medications I’ve taken over the last 15 years, I imagine every pill and IV drip stacked on top of each other, row upon row of every colour and size like gleaming, sterile fingers rising higher with every dose. I like to speculate that it would fill a small room, one that I could peer into, then say to my body with mixed awe and concern, “damn, girl, you took ALL THAT and you’re still here?”

I don’t actually think there would be enough to fill a room, but it feels like that sometimes.  I’m sure my liver would agree.

Plaquenil, my ever “Constant P,” was the first medication prescribed to me in 2001, and if I’ve done my math correctly, I’ve taken approximately 10, 950 doses. Also called hydroxychloroquine, this anti-malarial is used in lupus patients for long-term care. According to Molly’s Fund:

Anti-malarials are a sort of “lupus life insurance,” a disease modifier that  decreases pain and swelling, and prevents joint damage and disability. Studies have shown that patients on anti-malarials live longer than those who are not.

Some of the side effects are also lupus symptoms, so I’ve never been 100% sure if I’ve had any.  A few months ago, I noticed the pigmentation of some of my toe/ finger nails had changed. A nail bed would have one or two long, black, vertical lines.

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I looked it up and was disturbed to discover that this type of nail discolouration can be an indicator of skin cancer. I went to the walk-in immediately, and was referred to a dermatologist. To my relief, she concluded that I have longitudinal melonychia, which can be physiologic due to darker skin, or due to prolonged use of Plaquenil. She explained that my lines were light black and did not run into the skin, and therefore, not a sign of cancer. If the lines are solid black and continue into the skin, then there is reason for concern. Since I have darker skin, I’m not entirely sure if the pigmentation was due to Plaquenil, but I knew I had to spread the word that it could be in others. So, to all you long-term “Constant P” users, keep an eye on your fingers and toes! Plaquenil induced longitudinal melonychia is harmless, but it’s good to be aware of medication induced changes to your body. It’s definitely something you should bring up to your rheumatologist at your next appointment and if you think it may be cancer related, visit your GP right away.

And lastly, if you haven’t checked them out already, here are two of my articles now available for viewing on the New Life Outlook – Lupus site. I have an article due next week on pain management options, so I’m excited to share that with you soon!

  1. How to Combat Morning Lupus Stiffness – Combating morning lupus stiffness is a proactive battle that happens throughout the day, not just in the morning. Take these steps to fight stiffness today.
  2. Staying Positive with Lupus – It’s normal to be frustrated with your condition, but staying positive with lupus is important for both our mental and physical health.

 

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.

 

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?

 

New Recruits to E’s Mission to Remission

If you keep doing what you’re doing, you’ll keep getting what you’re getting:  It’s the whispered reminder that seems to be a permanent fixture in my post-flare life.  Change is the name of the game and the decision to work half-time was just the beginning. Next up?  Changing up the faces on the health professional side of my “Mission to Remission Team.”  This morning, I got on the phone and made appointments over the next couple of weeks to check out the life warrior potential of some new recruits:

A new G.P.:  I like my present doctor, but for years I have been trying to find a good, female doctor who is accepting patients.  Not only is this one taking patients and comes highly recommended by one of my keepers, it’s also minutes away from my work!

A naturopath: It’s a combination I never thought I would find, a naturopath who has experience working with clients with lupus, but lives with it as well. This discovery happened through the simple sharing of my story with a new friend who knew the naturopath personally.  Oh, and did I mention that her office is walking distance from my apartment?  Can it get any better than this?

A new ophthalmologist: I have to get eye tests from an ophthalmologist every 6 months because of my prolonged use of plaquenil.  I have disliked the “eye-side manner” of my current specialist, but never took the initiative to try to find another one.  Thankfully, one of my keepers is an optometrist, who is referring me to an ophthalmologist she knows personally.  I cancelled my upcoming appointment with my old specialist today!

I am feeling really excited to meet new people who could be part of helping me cultivate a lifestyle of wellness.  And just so you know, my Mission to Remission Team already has some permanent heavy hitters that I don’t plan on replacing anytime soon:

My amazing rheumatologist and rheumatology nurse

My personal pharmacist: My sister!

My personal optometrist: One of my oldest and dearest friends!

My certified massage therapist who I’ve been seeing for over 6 years

My financial advisor

My support system of keepers (you know who you are)

My blog family (you!)