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.
I eased the door of my apartment open, the mad percussion of the downpour reaching full volume in my ears. I stood there for a moment, in the way we all do before heading into the storm; my hood tied tightly, my chest lifted from a deep, preparatory breath. I was steeling myself, eyeing the driest path, taking the time to fully accept that I was leaving my warm, cozy apartment for the wet and windy world outside. I scurried to my car, the fog creeping up my windshield as I plunked myself down into the driver’s seat. As I sat in my little puddle, I realized that I’ve been in the middle of that deep, preparatory breath for the last four years. I’m on the threshold… and apparently, I don’t want to get wet. I’m taking that as a sign that it’s time to get uncomfortable. It’s been a while since I’ve pushed my boundaries or tried something new, so I’ve just booked my first solo trip in 8 years (paid completely with points!) and have put in inquiries about an intriguing herbal medicine workshop here at home. As of late, my crafty, talented friends have inspired me to rediscover/find my inner crafter (if she exists). Who knows, I might try and dig out my old knitting needles, although I’m pretty sure the skills that earned me my knitting badge in Girl Guides have long since dried up! I guess you wouldn’t necessarily term those things as “uncomfortable,” but for me, the “discomfort zone” encompasses any experience outside of your “wheelhouse,” the very specific list of things you think you know and are good at (so you keep on doing them and nothing else). These experiences can be as small as trying a new type of food or taking a different route to work. It’s about bringing the newness and excitement of traveling and discovering a new place into your everyday life. I believe that those little discoveries ultimately lead to the broader answers we seek. And so, I’m ready to release my preparatory breath and make the mad dash into my discomfort zone. After all, it’s the only way to get to the warm and cozy place on the other side.
On a more sombre note, I realize that my rainy metaphor for reflection coincides with the devastating flooding that is happening in Alberta. I have fond memories of that province, especially living and hiking along the Bow River and surrounding area. My thoughts and love are with those who have been affected.
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.
Seven days from now, I will not achieve the wellness challenge I announced in my last post. Due to a schedule conflict, I switched to an earlier half-marathon event, condensing the slow and steady training I had carefully planned. When I reached 8 miles, my body started to give me messages: Headaches, nausea, increased fatigue, night sweats, and finally, a case of thrush. Four years ago, my first experience with thrush was due to a high dose of prednisone, a drug that’s been out of my system for a year and a half. Without steroids to blame, my decision not to run the half-marathon was immediate.
An oral yeast infection can be painful and unsightly, but compared to other lupus symptoms, it’s minor and manageable. So, why give up so quickly? There were other factors that were affecting my health besides running long distances, but the message was clear: “Stop. Slow down. This is not the time.”
Fortunately, I was able to cure my thrush naturally with an apple cider vinegar rinse (1 tablespoon of apple cider vinegar in one cup of water) and probiotics. I went easy on the running and with additional rest and nutrition, all the symptoms I was experiencing disappeared. I plan to do the 10 K next week instead, with the goal of running or walking it according to how I feel. I still want to run/walk a half-marathon one day and although I can’t say I completed this year’s wellness challenge, I feel I’ve passed an important test. When I told my brother about my decision, he said, “if this had been 4 – 6 years ago, you would have gone ahead and done it anyway. I’m proud of you.” So, this is where I am; a long ways off of that half marathon finish line, taking a nap on the side of the track. If that’s where I am, then it’s a good place to be.
On another note, you’ll notice I’ve been experimenting with a new look for the blog. Let me know what you think!
“Only those who will risk going too far can possibly find out how far one can go.” - T.S. Eliot
My first week of training for my first half-marathon looms before me and I can’t help but feel anxious. Can I really run that far? Are my joints strong enough to handle it? Am I? The 10 K I ran last June feels like someone else’s dream.
This fitness goal is not just about running in the same race as my Dad, although that in itself is a huge, meaningful motivator. To be honest, it’s not even about running. I’ve spent the last three years in an intense state of learning how to heal and listen to my body. I’m down to one prescription drug, but where am I at physically? Have I learned enough from my experiences, both in health and illness, to achieve this goal in a safe and healthy way? Do I have the wisdom to adjust or stop my training if can’t? I need to try. I need to know.
In the last little while, I’ve been prepping meal plans for my 17-week training schedule. I want to focus on mainly vegan, protein rich dishes but will be eating fish, eggs, and some chicken, as well. I don’t feel knowledgeable enough to go entirely vegan while training, so I thought it would be safer not to make the attempt. Here are a couple of vegan dishes I’m thinking of including. If you have any super fuelling dishes you’d like the recommend, please send them my way!
When there’s an increase in stressful events, it’s easy to find yourself on the edge of a health neglect catastrophe. When I feel the threat of stress coming on and my energy dwindling, meal planning and grocery shopping fall to the wayside. For a quick nutritional fix with minimal prep, I usually turn to one of these easy options:
- Can of tuna or hummus or goat cheese with rice crackers
- Rice cake with almond butter and banana (or avocado)
- Miso soup (all you need is boiling water, miso paste, green onion, and tofu)
- Green smoothies (great for breakfast or with a light meal)
- Baked, whole sweet potato or sweet potato fries
- Boiled eggs or veggie and goat cheese omelettes
- Rice cooker recipes (throw brown rice, veggies, and seasoning into the rice cooker and voila!)
- Veggie pizza with goat cheese on a rice wrap
- Lots of fruits, veggies, seeds and nuts as sides or snacks (no prep required!)
I’ve been feasting on these fast foods quite a bit lately, slowly inching myself towards my cookbooks and grocery lists. As I leisurely complete that journey, I will leave you with a quote from my yin yoga instructor: “Discomfort allows for growth.” I suppose the challenge of finding and sustaining health is very much like holding an excruciatingly long yin yoga pose – you breathe, you modify, and you don’t give up.
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. :)
There are days when you need to get take-out. The fridge and the cupboards are bare, the store is closed, and you have no choice but to venture out for that vermicelli bowl down the street or the sushi two blocks away or even the veggie burger across the bridge. For me, the reality is that most times, my cupboards are full of beans, lentils, and brown rice, sweet potatoes and acorn squash sit in a wicker basket atop my toaster oven, and kale, spinach and tomatoes lie in wait in my fridge. That was the very case tonight as I sat glumly (and lazily) in my apartment, trying to convince myself that there was NOTHING to eat. I scanned my “healthy” take-out options online, trying to ignore the inner voice asking, “these are basic recipes… why the heck aren’t I just making this myself?” Tonight, my will power won out and I was able to find take-out within by creating a simple rice noodle dish with garlic, onion, sweet peppers, shrimp, almond chilli sauce and crushed, raw cashews on top. My schedule and family events as of late have upped my restaurant food intake quite a bit, so hopefully tonight’s success will carry me through to a more balanced week in the kitchen!
We all have things that we automatically do when we are sick or feeling low, a kind of “wellness emergency kit” full of tools like your favourite CD, a hot compress, that favourite pair of pyjamas, or the classic, homemade bowl of soup. What do you prescribe when you’re forced to nurse yourself?
Here are some of the tools in my wellness emergency kit:
Hot showers: A quick, hot shower loosens up my body and soothes any inflammation I am feeling. Afterwards, I feel fresh and more ready to deal with the physical pain and stress I am experiencing.
Naps: Napping has always been an integral part of how I manage lupus. I always try napping first before taking any additional pain medication like tylenol. Although, I always say that I have “sleeps” rather than naps. It’s nearly impossible for me to nap less than two hours!
A steaming cup of decaffeinated tea: My top and most frequent choices are ginger, peppermint, lemon balm, and indian spice.
Steamed plantains: For as long as I can remember, my mom has cooked plantains for our family, mostly in the pan fried form with a sprinkle of brown sugar. When I was experimenting with nutrition and trying to cut out sugar, she encouraged me to steam them. They are healthy, naturally sweet, warm, filling, and my ultimate comfort food when I’m feeling sick and secretly wanting someone to take care of me. It’s as if my mom is in the kitchen making them for me!
Watching an episode of The Daily Show: I tend to watch Jon Stewart online (I don’t have a TV) at the end of a long day or when I am feeling sick because I know I’m guaranteed a laugh out loud moment. No matter what has happened or how I am feeling, ending the day with laughter puts things in perspective.
Fuzzy socks and fuzzy blankets: Making sure I’m warm is always a top priority when I’m feeling sick. My sock drawer is overflowing with thick and fuzzy socks and I have several blankets in my apartment aside from those on my bed. I’ve also been known to sit in front of my little heater, as well!
Candles: Creating a peaceful, quiet atmosphere when I am dealing with pain (physical or otherwise) is important to me. Softening the lighting in a room calms and helps me focus on getting through the sensations I’m feeling.
An epic fantasy novel: In the past, escaping into a really good novel has really helped me in the recovery process. Recently, I’ve fallen in love with fantasy authors like Guy Gavriel Kay and George R. R. Martin, but any great piece of writing will do the trick. The short opportunities to let go of my story/present moment and lose myself in someone else’s helped ensure that I wasn’t swallowed up by the fear, stress, and pressure that come with the recovery process. I found that when I did come back to my story, I felt less overwhelmed and more ready to face my circumstances and move forward.
A little help from my friends: When I am feeling really sick, I tend to want to be alone, but I’ve tried to teach myself that it’s okay to call a friend or take a quick drive to be with family. It’s hard to ask for help and not feel dependent or incompetent, but it’s important to remind yourself that sometimes the healing is in the company you keep.
It’s official: I’m addicted to oatmeal. It’s quick, it’s easy, it’s healthy (lowers cholesterol, boosts the immune system, has special anti-oxidants for heart protection, stabilizes blood sugar, lowers risk of diabetes, prevents breast cancer), and there’s nothing more comforting during those dark, colder months when you’re up before the sun. I have to admit, I was never an oatmeal fan. I’d buy an assorted box of oatmeal packets, intent on reaping the health benefits, but they’d collect dust in my cupboards. It was either too bland or too sugary. I couldn’t find the happy medium, so I gave up all together. This past summer, while on vacation for my cousin’s wedding, I was forced to make peace with oatmeal as we hotel hopped on our post-wedding family road trip. The free breakfasts that came with our stay were always gluten packed and/or sugary items, leaving only oatmeal and fruit as my options. Most had “build your own oatmeal” stations, which inspired me to make my own quick, easy, and superfood infused oatmeal packets. No time in the morning? I bring the pre-mixed ingredients with me. No kettle where I’m going? I pre-boil the water and put it in my tea thermos to add later (and bring a tea bag to use with the remaining hot water, as well!).
There are some really amazing oatmeal recipes that take a little extra time on the stove like this peanut butter oatmeal recipe from “ohsheglows” that I’ve enjoyed on leisurely Sunday mornings, but if you are looking for something quick and satisfying with an added superfood punch, check out my simple mix:
1/2 cup gluten-free oats (I use wheat-free “Only Oats” brand)
1 teaspoon cinnamon
1 teaspoon ground flax
1 teaspoon chia seed
Handful of dried fruit of choice (raisins, cranberries, blueberries, etc.)
Add 1 cup of boiling water, mix, and voila! A healthy, gluten-free, sugar-free, protein and fibre packed bowl of oatmeal. The chia seed is not only a nutritious addition, but also thickens the oatmeal, which I enjoy. By putting the dried fruit in with the hot water, the hydration makes them plump and juicy. The dried fruit provides just the right amount of sweetness, but if you feel you need an extra dose, a drizzle of honey or maple syrup should do the trick. Some of my favourite toppings are: slivered almonds, sunflower seeds, pumpkin seeds, and fresh fruit. Unless you enjoy a salty kick to your oatmeal, try to stick to the healthier choice of raw/unsalted seeds and nuts. A splash of almond milk is also a great option and provides an extra nutritional boost.
I’m almost through my 2nd large bag of gluten-free oats this month. I can’t seem to start my day without it!
At this present moment, my city is celebrating Nuit Blanche, an annual all night arts festival. There are free parties and exhibits at museums and art galleries, public art, short films shown on street corners, even a “bike crawl” to each event… but I’m not there, I’m here at home. I’m feeling the effects of an incredibly busy month with little down time and in the last week, little energy to cook and eat as healthy as I do regularly. I’m not feeling sick, but I’m tired, craving a quiet space and the permission to be slow. I want to be out there tonight, but my Lupus “spidey” sense is tingling. I can feel that I am nearing my “danger zone,” still far away enough to feel fine, but I’ve crossed that line enough to know that one night out (or in) can make all the difference. On one hand, I feel happy that I’m finally sensing my limits intuitively, that I have cultivated a list of preventative measures that has, so far, kept serious Lupus symptoms at bay, but even after 11 years of saying no, it never gets easier to miss out. I try to remember that in my situation, the real freedom is not living without restriction, it’s in the choices that ensure I have a say in the quality of my life. So, as I continue to learn the illusive, magic formula of life balance, I feel content enjoying my quiet and restful night at home. And really, there’s nothing like a cup of tea and a book in bed… and there’s always another night on the town.
During brunch with my parents the other day, I ordered buckwheat crepes and fruit, a far cry from my custard filled and syrup drenched breakfast favourites of the past. The buckwheat crepes were boring, unsatisfying, and considering how I felt afterwards, most likely contained gluten despite it’s name. This morning, I decided to try my hand at a homemade, protein-packed, vegan, gluten-free alternative: Hempseed pancakes (Choosing Raw) with almond butter and fresh strawberry, chia seed jam (Thrive).
The hempseed pancake recipe was simple and didn’t require any strange, gluten-free baking additives like xanthum gum, which I appreciated. The batter came out quite thick, so I added more almond milk than listed. You have to be careful not to make the pancakes too large or too thin, since they are fragile and prone to crumbling when flipping. The pancakes themselves are pretty dense, so be careful of making them too thick. I was barely able to eat two small pancakes before feeling full! I only made half the recipe, yet I found myself with a good amount of batter left, so I popped it into the freezer for another day. In the end though, it’s all about the toppings. I wasn’t feeling like anything too sweet this morning, so I opted for a PB & J version of almond butter and a no-cook, sugar-free, fresh strawberry chia seed jam to add extra nutrients.
Chia seeds (of “chia pet” fame) were used as an endurance food by Aztecs and Mayans to increase energy levels while hunting. Due to the nature of these seeds, they absorb water very easily (9-10 times of their weight), therefore, resulting in prolonged hydration and retention of electrolytes, which is one of the reasons why endurance runners tend to use these seeds. They are extremely nutritious, containing around 22% of protein, 35% of healthy fats (Omega 3, Omega 6), 25% of dietary fiber and contain plenty of minerals and vitamins (calcium, potassium, and iron). They are said to provide relief from arthritis and diabetes (by absorbing sugar), decrease blood pressure, help with acid reflux, and improve the general cardiac health. They can be put in smoothies, as salad toppers, as well as a variety of other uses. Click here for a great article on the benefits of chia.
That being said, a mountain of fruit & maple syrup, or a nutella & banana inspired version would be delicious, as well!
Happy Sunday, everyone!
An elderly couple used to live down the street from my childhood home, infamous for distributing freshly baked cookies to the neighbourhood kids. I’d jump rope for them as they looked out their window and clapped, or more often, I’d scoop up a handful of dandelions, ring their doorbell, and flash my best smile. The milky juices that seeped from the stems were a messy consequence, but I figured sticky hands were better than ones without a cookie in it! I would have never imagined that the bouquet of dandelions I used to procure a tasty treat would now be on my dinner plate.
After a surprise find of organic dandelion greens at the grocery store, I decided to whip up another Thrive recipe: Dandelion Salad with Sun-Dried Tomatoes and Lentil Dressing. Dandelion greens are high in vitamins A, B complex, C and D, and minerals including iron, potassium, magnesium, calcium and zinc. The list of health benefits are long: Ideal for detoxification, balancing PH levels, a natural diuretic (helps with UTI’s, lowers blood pressure as a result), helps to cure acne, nourishes your blood, etc. Their bitter taste can be offset by mixing with other greens or by adding onions when cooking. And for all you green drink enthusiasts, they can also be added to smoothies. The salad I made was half baby greens/half dandelion, so I didn’t notice any bitterness, especially with the addition of the thick, delicious dressing. I’ve been enjoying the salad for last two days and will definitely make it again in the future! Here’s a few pics, including my very first raw dessert!