What Jigsaw Puzzles Teach Me About Life With Chronic Back Pain

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Imagine your life as a jigsaw puzzle…

The information on the puzzle box is incredibly limited. It does not tell you how many pieces are inside. The photo on the outside of the box is just blue sky, scattered with soft-focused clouds. As you look at the photo on the box, you mutter, “This is going to be so difficult to put together.” Every puzzle piece looks identical in color. The theory, in any time you put together a puzzle, is that the puzzle will look exactly like the photo on the outside of the box. Your hands steadily open the box of the puzzle-of-life and remove the lid to see the contents. Much to your surprise, there are pieces of varying colors and of strange images, not all blue sky as you assumed.

My strategy, in putting together a puzzle, is to search out and place all the straight edges and corners to build the framework first. The beautiful blue frame stares back at you with the promise of many days yet to come. Your logical brain knows that life isn’t always going to be blue skies, it is a certainty that there may be clouds, maybe even a storm or two. As you fill in the pieces, you uncover a piece with an image of children. That’s pretty cool – you’re not sure where they fit in, but it makes you smile. As you stir through the pieces, you discover an image of a lovely garden; again, you’re not sure where it fits, but it’s pleasing nonetheless.

As you stir through yet more pieces, turning them right side up, you find a heart. Not just any heart – this one is broken. Oh! If only you knew where it fit, you could possibly prevent it from breaking. The next piece turned over, a hospital bed. You can assume it must fit before the kids; after all, children are born in hospitals. But this piece is not even shaped like any of the other pieces. It is so random. You keep it within eye-line, always in sight, wondering when and where it fits.

You realize you have excruciating back pain, but you pass it off as having been sorting and searching for so long. Some hot packs and Advil will surely take care of it. There is a much bigger task at hand: making sense of this chaos. Hours and days blend together as you piece together the story of your life.

A little piece with a pill comes to sight, and another, and yet another. It seems as though the medications have multiplied and don’t resemble each other. You group them together and push them to the side. You’re surveying the pieces before you. Some are brightly colored and some have dark murky images. A gloomy image of two people sitting across from each other in what looks like an office setting. These people do not look happy. One person with their head in the hands, the other holds a clipboard and pen. Unsure of what this means, you begin a new section of puzzle pieces.

Another shadowy piece is a bottle of poison, or so you think. When you look closer at the label, it appears to have some biohazard-looking image on it. Is it a warning of something dangerous? Off to the side with the other dark pieces…

If only we were able to see all of the pieces of our life laid out in front of us. To see the timing and plan, the purpose of it all. Our sense of control would be so overwhelming, we would manage and manipulate the puzzle to fit our plan. Our way. Had I known that the piece with the broken heart would surface more times than I can count, I would have maybe withdrawn. Not allowed myself to love so ferociously. That would have been the worst – not the broken heart, but the lack of passion in my life.

There is no way to compartmentalize life. There is no way to neatly organize our darkness or create nice, neat edges. The dark image of the people facing off in an office could represent many facets of my life. I’m not exactly sure which piece is which. Perhaps it’s the conversation with a lawyer during my divorce. Perhaps it’s the conversation with a doctor that is just not listening to me or hearing the cry of my body. Perhaps it’s the conversation with a trusted friend that doesn’t understand or believe the abuse of my past. In any scenario, I’m was left feeling defeated and dark.

The dimness of a hospital bed, in this puzzle, served my parents, so many days and nights sitting around a hospital bed praying for better days. Cancer and disease are beasts we try to tame. Days into months of lingering illness and pain. Some never know the victory over the beast. Little did I know that in their death, I would learn about strength.

The “pill pieces” have been present most of my adult life. I’ve battled depression and anxiety to epic proportions. I’ve had seasons of quiet and seasons of mayhem. Those manic seasons come and go, but never completely disappear. It’s in those seasons I’ve craved peace. Sought it out and chased it. Peace is elusive. What you are certain will bring you peace may be the core of chaos. While it is imperative to seek peace, you must seek discernment and wisdom equally.

In your busyness of life, you learn to pass off the little moments of discomfort as nothing more than nuisance. The back pain that stops you in your tracks can be attributed to a zillion things. Your weight, poor posture, an occupation on your feet all day. Never would you assume that your back pain may be the root of a deeper, more invasive disease. Too busy to give it light, you pass it off as that: passing. When putting together the pieces of a puzzle within a puzzle, you discover you have an autoimmune disease, ankylosing spondylitis. It’s when you understand your “biohazard puzzle piece” is not a warning of danger ahead, it is the treatment for the disease that you (and multiple doctors) failed to see. It’s the victory and defeat. You now have a name for the disease, but the treatment is another chapter in illness that you wouldn’t wish upon an enemy.

But in this tabletop view of life, you can see that these dark puzzle pieces are but small segments of a much bigger picture. Yes, they are visible, but they are surrounded by light. Not always sunshine, but light that gives purpose and life. Your life is that: purposeful. Breathe in the moment of right now. Unburden yourself of the chaos and quest for having all of your pieces organized just right. Let go of the pain of a season of dark days. Look for the lessons learned in those moments. Yes, even the darkness has a lesson to be learned. Sometimes it’s as simple as learning to not do that again, or it’s as complex as finding the voice within to stand up for yourself or a loved one in their dark season.

No, sunshine and blue skies would be too boring for this girl. I will lean in and learn about love through the pain. Healing in the brokenness. Learn to slow down when my body tells me to. Life is to be lived, discovered anew. Throw the box away! Throw away the picture in your mind of how it should be. And, if life ever gets too blue sky, take a Sharpie and write cuss words across the pieces. Live life – out loud!

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Why I’m Giving Up the Illusion That I Have Control Over My Disease

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Since being diagnosed with ankylosing spondylitis (AS), an inflammatory arthritis that attacks my spinal and peripheral joints, I have spent the better part of two years trying with all my energy to control my disease. Once I heard my rheumatologist utter the words, “incurable autoimmune disease,” I shed a few tears right there on the exam table and, not taking a week or even a few days to grieve, I jumped straight into, “How can we control this? What medications are available and what are their success rates? What diet changes can I make? What does the research say about the drivers of autoimmunity? Will acupuncture help? Should I see a naturopathic doctor?”

I wasn’t going to accept a life of chronic pain, fatigue, and spinal deformity; I was going to find the capital A “Answer” to putting myself into remission, or even curing this thing. This disease was just a speed bump and I was all about getting over it and returning to my productive life. I wasn’t about to be taken down by it, not after having just survived multiple brain surgeries (that’s a story for another day; I have two brain conditions for which I spent a month in the hospital). Nope, no way, not happening! That was that. I threw myself into solutions. I had heard several stories online of people who had been diagnosed with rheumatoid arthritis or AS, or some other debilitating autoimmune condition, and they cured it with herbs or juicing or a macrobiotic diet — or even Shakeology (the older, wiser version of me would like to insert eye roll here). If they could do it, why couldn’t I?

After cutting out gluten, dairy, grains, legumes, nightshades and eggs — and taking a boatload of supplements — I was still largely unable to walk due to joint inflammation and severe pain three months later. I conceded to taking Humira, a black-box label drug in a class of medications called biologics, and it lowered my pain significantly for about a year, but not without side effects and infections. My agreement with myself was that I’d take the heavy duty and potentially dangerous immune suppressing Western drug, while committing myself wholly and completely to lowering my inflammation and healing my body naturally through the use of naturopathic and functional medicine. A logical plan, right? I would get to the root of this dis-ease and get past it.

Well, the best laid plans often go awry.

Here I am, two-and-a-half years later, having gone through numerous naturopathic and functional doctor appointments, countless functional medicine tests and protocols, green juicing, supplement plans that made use of the most cutting-edge research on autoimmunity (including vitamin D, fish oil, turmeric root supplements, medical-grade probiotics, and countless others), food sensitivity testing, extreme diet changes to remove inflammatory triggers such as gluten, dairy, and grains, the addition of tons of nutrient dense foods at almost every meal (organic, grass-fed meats, omega-3 rich wild caught fish, tons of green vegetables, bone broths, healthy fats), massage therapy and acupuncture, restorative yoga, and many, many more efforts toward healing.

What do I have to show for these efforts? Currently, not much more than being flat broke. I have still experienced debilitating flare-ups, and the most recent required a course of prednisone that led to mononucleosis, for the second time in my life. It’s almost unheard of to get mono twice, but I did, due to the immune-suppressing drug prednisone. What’s worse? Ever since March 2016 when I developed this infection, I have been debilitated with fatigue so severe that I spend most of the day on the couch or in bed — and I’ve had to stop working. We’re now looking at an additional diagnosis of chronic fatigue syndrome, and I’m in the appeal process for long-term disability benefits after being rejected twice. At 29 years old.

I’m not saying my healthy efforts were all for naught, or that I’ll be giving them up. While I continue to feel inflamed and stiff and largely unable to move these days, I shudder to think of how I’d feel if I weren’t eating well and taking supplements. Plus, I believe both functional and naturopathic medicine have a lot to offer when it comes to the chronic, progressive diseases that Western medicine just doesn’t fully understand and doesn’t know how to adequately treat.

However, what I am going to stop doing is expecting these efforts to control my disease or symptom activity totally. I have realized — what with all my free time lying in bed this entire year — that my exhaustive search to “get better” has been due, at least in part, to my unwillingness to accept that I have a disease for which there is not yet a cure. By keeping my focus solely on “getting past” AS, I was able to avoid the pain of having to accept this truth. I did everything right, I ran the gamut from Western medicine to Eastern medicine to functional medicine to integrative and back again, and here I am, typing this on my iPhone while lying flat on my bed because sitting upright is impossible today. And it’s not because I failed at anything. It’s because I have a complicated, painful disease that is unpredictable. Plus, I’ve found that the doctors who have really progressive ways of treating autoimmunity don’t accept insurance, so available finances will determine who I’m able to see and what I’m able to do; many a night has gone by where I’ve beat myself up for not making more money, not saving more in my early 20s, not being born into a different family, and on and on so I can afford this care. I’m letting go of this. It’s not my damn fault! And it’s not any sick person’s fault that the insurance and provider situation in America is heinous.

Living inside a body you cannot control is one of the most disorienting, disempowering, and terrifying experiences there is in life. No wonder I’ve been running from it. Not knowing until you wake up in the morning whether you’ll be able to check off even one of the items on your to-do list takes a tremendous amount of emotional strength to tolerate. But rather than trying to reject my illness and get on with my life, I’m practicing radical acceptance of reality. The control I’ve been seeking is an illusion. For me, drinking bone broth and taking some vitamins are not enough to control something as complex and multifaceted as my autoimmunity. And I am not a failure for not being able to control it through these means. This disease will always be there, and I will always need to manage it, and I cannot control that I have it any more than I can control the clouds rolling in.

And PS: anyone who doesn’t understand that doesn’t get the privilege of being in my life — can I get an Amen?

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

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What I Hope For in the New Year as a Person With Ankylosing Spondylitis

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It’s that time of the year when the festive melody of Christmas should soothe the mind and warm up the heart. But here I am, sans the cheer, recovering from a chronic back ache and nursing a state of mind that is only leading me into a pool of depression. A week’s holiday went under house arrest due to untold woes of inflammation. It may sound to be a state of ultimate rest — that’s what our body needs when you take a break from long working hours — but a holiday on a bed is the last thing on your mind as a way of relaxation. Well, I kept my chin up by telling myself, “Cheer up, Christmas is here and near!” Some holiday movies of the season and books did enliven the spirit that was otherwise doused with pain.

When you live with an autoimmune disorder like ankylosing spondylitis that leads to chronic pain and fatigue, a big risk you carry all the time is of unpredictability. I always keep myself prepared with what can strike and when, but sometimes the timing just hurts. And what do you do then? Pick yourself up, all by yourself, and look ahead. That’s what I have learned. Sometimes you just need to keep your mind cool and say, “So what if my holidays are spoiled? So what if I have unbearable pain, I need to get up and face the sun? Get the much needed warmth, taste the bitter sweet winter, wrap yourself with whatever energy you have and move on.” So here I am, looking forward to one of my favorite festivals, sipping my coffee, all geared up to form my New Year’s resolution. Today, as I sit through a calmer and lesser depressed mind, I realize life is only as tough as I see it, and only I can lead it to a better tomorrow.

So what’s my resolution for the upcoming New Year? While people will plan for a new home, a child, a new job, vacations and celebrations, I just hope and wish that I have enough energy and endurance to run my life. Yeah, that’s the resolution. The pledge to gain more strength, fight the fatigue, emerge more supple and mentally stronger with a dollop of motivation to feel good about myself. Now that sounds like the perfect New Year resolution in the condition I am in. I’ve realized that when you live life with a chronic disorder, what you most need is the motivation to overcome the fear of the unseen. Because it is this fear that holds you back. It makes you imagine an untoward future causing more and more mental agony. It’s so important to take one day at a time. It’s imperative to take up every challenge the disease poses to you and put your heart in fighting it. You need the angel within you to strengthen your determination to overcome your woes.

Disorders like ankylosing spondylitis are not localized. It doesn’t just affect a part of my body. It tends to be systemic, affecting overall well-being and state of mind. It can instill fear, a sense of loss and disability; it can make me anti-social and dull my usual cheerful self. But it is still just a medical disorder. And my well-being is still in my hands. So while the town is painted red and green and I feel lonely within – I still know there’s a lot to look forward to. There’s a lot of joy of Christmas that is yet to come my way. I have put together a short list of what I want to do to make the next year better and am sure, dear readers, you may relate to some of these:

1. Strive to be fit and strong.

2. Shed the extra pounds and cleanse my body of toxins.

3. Make workouts a way of life – walk, dance, take up a sport I can bear, etc.

4. Discover peace of mind and try not to lose it

5. Make new friends and nurture old bonds of relationships, and most importantly…

6. Look at ankylosing spondylitis as a companion for life, know it better and forge a pact of kindness with it!

Believe me, I already feel good when I think of these resolutions. I know they are tough considering I barely have any energy to make so much a part of my life. But I am looking forward to drawing energy from fellow people. To reconnecting with a lost self, reading more, writing more, volunteering, spending time with loved ones and above all being kind to myself. There’s now a greater desire to go back to life’s motto – I will not let anything stop me.

Merry Christmas and a Happy New Year.

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The Lies I Tell About How I'm Really Feeling

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First of all, I’m not fond of lying.

At all.

Yet, I have become the greatest liar. I do it when I don’t even think about it. I lie to make others feel better. I lie to make conversation easier. I lie to save time. I lie because I know that the other person isn’t really listening.

My greatest falsehoods are: “Oh I’m fine,” “I’ve got it,” “I don’t need anyone else,” “Today isn’t so bad,” “Nah, I’m not crying,” “I’m just tired.”

I am beyond exhausted. I stay up because I’m in so much pain from ankylosing spondylitis that I can’t sleep at times. And, no one can handle it. I hardly can. I don’t want to burden others with the truth. My truth.

Every single morning… I’m hit with a ton of bricks that this wasn’t just a bad dream. I’m not sure what’s worse — the pain, the flu-like feeling, the constant costochondritis (inflammation of the ribcage), the depression, exhaustion, or the grieving of my old life. It’s not in remission. It won’t be.

It’s 1:30 a.m, and I’m awake. In pain. It’s Christmas time. My favorite time of the year. The lights from our tree are glowing as I type my confession.

There’s still a hint of magic in the air for me. My girls are excited and looking forward to the magic of Christmas. The twinkle in their eyes is enough to hold on, as painful to my arthritic hands as it may be. They are my excuse to keep on with my verbal fabrications.

I’ll say, “I’m fine” as a war is being fought in my body. The war my body has waged on itself. Fusing my bones together.

I’ll fight to lie another day.

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Why I No Longer Divide My Life Into 'Before' and 'After' Ankylosing Spondylitis

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When I was diagnosed with ankylosing spondylitis (AS), I felt like my life was divided into Before AS and After AS. Even in its infancy, After AS was denser and more disparate than anything light and whole that precipitated it. I lived in excruciating physical pain. I battled chronic fatigue and fickle vision. To move was to navigate quicksand with bags of concrete strapped to swollen limbs. My eyes, once green with silver halos, flamed furious in too-bright sunlight. Anterior uveitis, close cousin of ankylosing spondylitis, veiled my world in frosted glass.

After AS was heavy, nonsensical, and steeped in shadow. After AS broke my body and nearly broke my spirit. The disease loomed and stung without apology. It screamed chaos into the hollow of my defeat.

I gave myself a pep talk before crawling out of a bed left unmade. I chose between a hot shower to loosen stubborn joints and a loaded dishwasher because I calculated the energy necessary for blueberry waffles, a clothed toddler, and our drive to daycare. Then the harder work began: earning a living while my disease flared. I was the breadwinner. A diagnosis didn’t change the expectation that I would provide.

Whenever my After AS body slowed my progress, my spirit cried out and asked a question that never serves me well: why me? I watched a mother jog behind a red stroller, and I wallowed. Unable to reconcile a life lived at warp speed with my new reality, I prayed for my grief to roll away.

But in the bleakest season of my disease, when I thought AS reigned supreme, Grace was as much my reality as pain, fatigue, and their wicked dance. Glimpses of the Before AS me (pain- and fatigue-free) were woven into my narrative. I breathed and did. I was slow and tentative, but I was enough: more precious than gold and Skittles to a child whose greatest need, love, was met in plenty. In the worst of my worst, my best was good enough for my son.

One morning my best consisted of dry Cheerios because, in a pain-induced “brain fog,” I forgot to buy milk the day before. My son didn’t lament his organic, overpriced milk. He cared about love blown into backyard bubbles the same evening. We chased those bubbles until a gold sun dipped into pink and indigo. “Amazing!” he exclaimed. “So amazing!” Playing with my child of wonder when my bones howled was amazing.

Today I realize that my tendency to divide my life into halves, into before and after illness without acknowledgment of the reprieves Grace bestows, is symptomatic of post-diagnosis pessimism. AS, known for its rudely unannounced twists and turns, had morphed the optimist in me into a pessimist.

And frankly it’s hard to shuck fear: fear of the unknown, fear of what new pain might riddle my body next. Pessimism and fear crave the deep dark; they work in tandem to extinguish light and smother hope.

I will never shuck fear for good. I’m optimistic about the likelihood of remaining in my current remission, but I catch myself fearing the future. I catch myself being human. I cope with fear as I tried to cope in the thick of my AS symptoms: by recovering Grace moments that hold me.

I revisit a portrait of my ginger son planting popsicle sticks in our garden. (Convinced that the sun’s gaze grew anything, he intended to plant pianos next.) I recall blue-green waves crashing against an Irish coastline that lulled me when I was younger. I memorize the precise shapes of these moments, and the experiences become my heart’s touchstones: reminders of a life defined by Grace rather than AS.

I accept that Grace moments lie behind and in front of me. Maybe my current remission will be permanent. Maybe it won’t, and that’s OK because struggle and joy can co-exist.

My choice to view my life and circumstances on a continuum, with Grace as much a constant as pain, fatigue, pessimism, or fear, may seem naïve and simplistic — especially on days when worry crushes optimism, and I must untangle myself from why me? thinking.

I’m committed to the daily surrender necessary to press forward into Grace, into holy, moment-by-moment reprieves from my disease’s unruliness and the pessimism it fosters in me. AS shapes me, but it doesn’t define me.

Before AS and After AS no longer reside in my way of thinking. Today there is only me, and I’m enough. Life with AS is still life. It hums.

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Getting Through the Holidays While Balancing an Autoimmune Disease

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The holidays are among us. There are so many of us who are thinking, “How am I going to do it?” It’s usually financially, or emotionally.

But, think for a minute, about physically. That’s always added to our plates. It’s kind of like when you’re at your grandmother’s for Thanksgiving and you have made a huge plate of your favorite food. Then, you turn around… and notice you forgot a roll. Well, of course, you put the roll on top. And it teeters, and moves around, it’s become a balancing act to save that roll from the floor.

You are the roll, if you’re living with ankylosing spondylitis, or any other autoimmune disease.

I, literally, don’t know how I’m going to do it, at times. I rest between household chores. I always put the kids’ needs, even if it’s basic needs, first. Then, my little misfit zoo of animals. I tend to put myself last, as many of us do. Teetering as if I were that extra roll on the top of our favorite food at a holiday dinner.

As the holidays approach, I’ve had to make a very important decision. I can’t remove “the roll” from my life. It’s there. It’s not going anywhere.

And, chances are, not everyone will see you struggling. Some will turn your ” I can’t” into ” I won’t,” and you have to expect that.

Shop online. Wash your hair! (That’s specifically for me.) Make lists. Ask for help. Set boundaries. Don’t overdo it. Ask for help, again. Plan. Savor every bit of beauty that you can. Take naps. Talk about it. Say “I can’t.”

Plan. Plan. Plan.

Be mighty.

You don’t think you’re mighty? You got up out of bed today. That’s pretty mighty.

Happy early holidays,

Angila

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