Woman looking pensive while looking out of the window

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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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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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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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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“You are so brave…” 

I just sat there staring at the message from one of my old co-workers, who had asked me how I was doing that day. My mind raced and I was in no way able to respond to this statement, meant to comfort me, during one of the darkest times in my life. 

I had five months earlier gone into a full flare from a degenerative form of arthritis known as ankylosing spondylitis, or commonly known as AS. I also was unaware of several conditions that had been plaguing me for years, being misdiagnosed for years due to my gender, my age, and my tolerance for pain. Ankylosing spondylitis was one of the main culprits, keeping me feeling off, almost regularly — it was as if I had the flu, without actually having the flu, tired, unable to concentrate, constantly in pain and often limping and forcing myself to work, take care of my home and try to carry on as if nothing were happening. I knew in my heart it was more than sacral joint disorder which I had been diagnosed with, without further investigation by doctors, who said, “You’re young, you have an amazing outlook, you’ll get better, we’ll fix you.” I knew better but I wanted to run away from the idea that my body was going through something that would basically turn my world upside down, and it did. 

In late February I had been putting away food at work and bent over and heard a popping noise — my sacral joint had come out of place. This is common for me. I pushed through the work day, went home and announced that I needed to relax. I lay on the floor in hopes of feeling better, but everything hurt — my ribs, spine, hips and sacral area were fed up, and they were going on strike. Giving in and realizing I had overdone it, I attempted to get up and felt an excruciating pain run through my hips. I couldn’t stand, I felt panic, anger, fear, and most of all ashamed. Here I am on the floor and I need help standing, walking, I even needed help adjusting myself on the couch. I could see in my boyfriend’s face this look of total helplessness; he by nature is a protector and provider, and he didn’t know what to do to make the pain stop.

After months of seeking out doctors, I was formally diagnosed by a rheumatologist, who informed me it was not just ankylosing spondylitis. I was shocked to learn I have Ehlers-Danlos syndrome, a disorder that affects the joints due to my body not producing enough collagen, spondylolisthesis, degenerative disc disease and it is suspected that I also have fibromyalgia

For several months I waited to feel better, irritable from pain and steroids, and stressed about how my little family saw me. I was so depressed and anxious that my troubles started leaking out onto social media.  

People were telling me of fad diets, supplements that had the magic cure-all, and I was told that if I just cheered up I would probably feel better. I was so annoyed, hurt, angry and above all clueless as to how no one understood. At that moment I realized, I have invisible illnesses, and I had been fighting and pushing myself for so long it had made it become difficult for everyone around me to realize the severity of my situation.  

I wanted to take a new approach and turn my feelings of grief, grief over the body that had ultimately betrayed me and turn it into compassion, to being compassionate with myself, my co-workers, doctors, and even people who would see me in public and ask about why I walked funny. The simple fact is these people don’t understand, and meeting confusion or ignorance towards invisible conditions with anger only leads to more confusion and ignorance. 

I wanted to show strength and I wanted to be mindfully present for my children. I felt like they were getting the short end of the stick with a mom who at the time was extremely limited. I was struggling really hard with steroids, I wasn’t myself and my body was hating the steroids, but my day had come. I was approved for Enbrel and I had received my first month’s supply. I was elated. I took my injection and was hopeful. 

Later that evening I rolled over and felt that familiar agonizing pain set in. I was screaming, the screams left my body and I no longer felt human. After being scared and impatient I dragged my body through my house, down the stairs and into my car, put my car on cruise control and made a trip to the ER. Laying in bed, uncomfortable, desperate and scared, my mind kept racing back to that message — all I could think about was that word, “brave.”

For many of us with chronic conditions, the last thing we feel is brave. This is not about condemning others for trying to bring comfort to those who are struggling. When I think of someone who is brave I think of a police officer, a fireman, or any person who makes a choice and risks their overall well-being for others. I didn’t choose this, it chose me. These conditions are a lifetime, and they can rob you of what you thought you knew about yourself. I wish I felt brave, but the truth is some days living feels like a chore.

There is no hero’s parade, no medal given for surviving another day. 

There’s just time, time to reflect, time to attempt to heal, time to grieve, and time to hopefully forgive yourself enough to realize that you may not feel brave, but you are strong. 

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It’s weird, the things you think about while you’re sitting on the floor of your bathroom. Yes, I also understand it is strange for me to be sitting on the floor of my bathroom. More about that in a moment, I need to back this story up a bit…

Many months ago, I hadn’t been feeling well. I had this bizarre-o rash on my face, fatigue that would not be tamed and a general “not well” feeling. I landed in the heart hospital with horrific chest pain, three days hooked up to all kinds of beeping things. The diagnosis? Acid reflux. I knew it was malarkey, and I went to my follow-up appointment with a plan to argue the diagnosis. My fatigue was brushed off as part of my depression. Um, no. Well yes, I battle depression, and no, this wasn’t it. But what was it?

I begged for more lab work, anything for more answers. I was a pest with a purpose; I’d wear them down until they directed me to someone else. Which they did. One visit with a rheumatologist, and we set sail for an answer. I prayed for any answer! I ultimately got an answer: ankylosing spondylitis. Yeah, I hadn’t heard of it either. As I researched the autoimmune disease, the more it seemed to fit. As often happens in autoimmune disease patients, if you have one, you have multiple. I was also diagnosed with fibromyalgia. It all seems to make the other issues of my medical past connect. Vitamin B12 & D deficiency, chronic kidney disease. Sheesh, quite the laundry list.

Meanwhile, back on my bathroom floor…

As I sit here, I’ve been on three different medications over as many months. Insurance got to make the decisions as to what I must “try” before the current medication. So, here I sit, the day after my first dosage. Nausea, fatigue, the battle between wanting to wretch or take a nap. Typically, I’d be stressing about the dust bunnies behind the potty, thinking about how the walls need to be wiped down or how I really never liked this shower curtain. But today, as I sit here, I feel defective, coupled with the guilt of feeling this way. I’m not battling a life-ending disease today. I’m fighting against being disabled. But that’s exactly how I feel.

As I first mentioned, it’s weird the things you think about while you’re sitting on the floor of your bathroom. I’m thinking about my lack of ability vs. disability. In this moment, for now, I’m not really able to drive to the pharmacy to get the recommended vaccine (before starting the next phase of my treatment). It’s only a temporary setback.

Imagine driving around your supermarket/pharmacy and seeing a vehicle pull into the handicapped spot. You expect to see someone get out with a walker or the ramp lowering for their wheelchair. That’s being disabled, right? Well yeah, it is right. But it isn’t the only right; disability comes in many shapes and sizes. Sure, we’ve all judged the overweight person on a scooter. “If they weren’t overweight they wouldn’t need that thing,” right? Fess up! We’ve all thought it. When we see someone step out of a vehicle on their own volition, we also think, “They don’t look handicapped.” I’m as guilty as the next guy. And as I sit on my bathroom floor, it’s as if I’ve been dropped on my butt for my way of thinking.

We are so quick to be the judge and jury of someone else’s conditions. We minimize the needs of other’s to maximize our own. I am the first to acknowledge there are others who are struggling far worse than me. Yes, I am fortunate, I know that. However, by minimizing our weakness, we also minimize the level of understanding for those around us. I have to be truthful with what I’m struggling with so others understand.

My (our) truth is necessary so we may recognize the truth in others. My truth: there are going to be days I have to pull-in, lay down and honor my body. It is also my truth to share with others, so you know the truth. Yes, I’d love to attend your special event! The truth of the matter: I may not have the energy that day. I may be struggling with excruciating pain. I may be concerned about the fact I will have no immune system to fight against a simple bug. Please understand.

The next time you circle the parking lot at Target and spot someone pulling into a disabled parking spot, remember those of us with invisible illnesses. Those of us who “look fine,” even though we are not. The next time you see someone cruising the grocery store aisles in their scooter, ask if there is something you can reach for them. Reach out, reach up. Reach down… you may just have to help a gal off the bathroom floor!

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