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Why I Won’t Accept My Illness, but I’ll Accept the Battle

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I was once asked what I’ve learned from living with an incurable disease. I didn’t really
have a determinate answer, but I did say having chronic illness has given me a deeper compassion, one I can’t quite explain. Being a young woman in her mid-20s, most people think I’m in perfect health. However, on the outside, I look nothing like what my body has really felt like for the past three years.  

Swelling, joint pain, raw stiffness, throbbing muscles, needle-burning pain and fatigue
were just some of the things my body woke to one September morning in Colorado. My body was not my own; everything from my knees, shoulders, hips and hands were all in pain. I limped to my bathroom to brush my teeth, but my hand couldn’t hold the toothbrush.

I did the best I could that morning despite the overwhelming confusion and drove to work with just the palms of my hands to steer the wheel. After eight months of grueling doctor visits and pain that went unclarified, I was finally diagnosed with systemic lupus after my 23rd birthday. I’ve done everything from changing my diet, exercising, taking medicine — but nothing permanently takes away the flares of pain.

The word “accept” by definition means: 

A) To receive willingly.

B) To endure without protest or reaction.

I don’t accept lupus because that would mean enduring this disease without objection, which means no battle. No battle means I’m not fighting.

But I fight for normalcy despite pain. I fight for staying in a job I love despite the physical exertion it requires working with children on the autism spectrum. I fight telling my body every day that she doesn’t have to accept this disease, because isn’t that what we’re supposed to do when any kind of pain tries to become the boss in our own lives?

In the past three years, I’ve had my fair share taking extra pain pills in the mornings, canceling day plans and praying through sleepless nights. I know the forged feeling of putting a smile on your face in front of people when all you want to do is lie in fetal position in your warm sheets at home with heat pads. I know the feeling of adding layers of clothes to your body during the fall and winter because your body starts to flare — but it’s still your favorite time of year.

Maybe pain happens to people for greater purposes than we think. What if pain doesn’t have anything to do with what we put in our bodies, and it has more to do with something that can’t be seen but felt. Perhaps pain gives us a gift of something greater; a phone call to a family member we haven’t spoken to in a year or the courage to start something we’ve always wanted to. Maybe pain doesn’t leave because it’s supposed to keep teaching us something otherwise lost — something deeper, something that helps others and not ourselves. Pain is a bittersweet blessing in disguise in my life, and it constantly reminds me of others who are facing challenges.

I don’t know when this illness will go away or if a cure will ever be found. I don’t know how my pain will look like tomorrow or in the next week or month, but I do know how I can fight it.

I fight it by doing what I love, even if that’s altered in some way. I’ll keep teaching children and spinning them around in my arms on the days my hands and elbows haven’t given up. I’ll endure jogs on cold mornings when my knees aren’t swollen or my chest doesn’t ache. I’ll drive to a friend’s home to have coffee on the nights I’m not physically drained. And I’ll keep cutting my hair because Lord knows I can’t spend an hour every night brushing a horse’s mane. I’ll still lie on the autumn and winter ground, feeling the crunch of leaves beneath my feet or snow soak in my hair. I’ll keep giving and loving.

I’ll keep doing all these things because if I’m breathing, I’m counting my blessings. I
hope you do, too, dear friend.

Follow this journey on One Mountain at a Time.

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My Love-Hate Relationship With Steroids

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When I pictured being in my 20s I had a few expectations. I didn’t expect to have everything figured out, but I assumed that I would have a rough idea about where I wanted to be and, more than anything, I thought at least physically I would be healthy and in the prime of my life.

I wish I could say this is true.

I’ve never been one for taking medication. I have always hated the idea of putting unnecessary substances into my body, but lately, I’m without much of a choice. These days I take at least seven to nine different types of pills on a daily basis and, truthfully, have more prescriptions than I know what to do with.

Some tablets I take because I need to, in order to prevent my lupus from causing long-term, chronic damage. Others are to aid my body in healing and functioning normally. And, laughably, the rest are to prevent the first two from causing me any serious damage.

While I hate having to take so many pills, I’ve accepted the fact that I truthfully only have two options. Unfortunately, unless I wish to crawl back into that deep, dark place where I found myself at the end of May — this is the lesser of my two evils.

Of all the medications I take, there’s only one that I have grown to simultaneously both love and hate: prednisolone.

Prednisolone is a steroid commonly prescribed for inflammation, and while it is often given to those with a range of chronic illnesses, it’s not rare for someone to be prescribed small doses for short periods of time by their GP, to treat more minor ailments.

I am obligated to love this stupid medication, as I know I wouldn’t be anywhere close to getting better without it. In truth, I have to admit that had it not been for prednisolone I might have chronic damage to my kidneys right now and that, in the bigger picture, it’s definitely saved my life.

But as grateful as I am to it, I can’t help but hate it just as equally. It’s very hard for doctors to treat my lupus, as there’s not very much known about it and a lot of the time they can only treat the symptoms. I give massive amounts of credit to the renal team that diagnosed and is treating me — these people may not be specialists in lupus or chronic illness, but they’ve been truly amazing in easing me into everything.

The only thing I wish they did differently? Warn me about some of the side effects of prednisolone that I might experience.

I could’ve done with knowing that sleeplessness, rapid mood swings, excess hair loss, weight gain, and “moonface” were just some of the long list of possible side effects of this drug — and they also could’ve mentioned that it tastes pretty foul!

The first couple months I was on 50 milligrams of prednisolone and didn’t sleep more than six hours a night. My body was physically exhausted, and even with heavy duty sleeping tablets I just couldn’t sleep — which definitely didn’t help my mood swings.

And I really wish they had told me to expect moonface.

Moonface is when extra fat builds up on the sides of your face, giving you a much more rounded facial shape — it’s a fairly common side effect of prednisolone, especially when prescribed in high doses for extended periods.

In the scheme of things, to most people, the prospect of having a more rounded face may not seem all that bad. However, at a time when I’m desperately trying to hold on to any small part of myself that I’m even remotely familiar with, not being able to even recognize my own face in the mirror has shattered me many times!

Although it’s vain, moonface has taken it’s toll on my mental health and self-esteem — some days, even for a few moments, I need to pretend that I’m OK and not sick — and any time I catch a glimpse of myself in anything even remotely reflective, it’s a constant and visible reminder that I’m not completely healthy.

Identity is something I’ve been struggling with recently.

I want you to ask yourself, if everything you’d ever known had been turned upside-down — how would you define yourself, who would you be?

I have very little control over anything these days, with one exception: my hair.

I haven’t cut my hair since I was 16 and I’d never had a concrete reason for why I’ve let it get so long — up until now. I don’t have control over the “wolf rash” or my photosensitive skin, my ever-fluctuating weight or my facial shape, but I can control the length of my hair.

It’s tiny and it’s trivial, but for me it’s something I can identify with and — at least until I can look in the mirror and recognize the person smiling back at me — it’s a win, and it’s my win!

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.

This post originally appeared in Kristiana Page’s column “The Girl Who Cried Wolf” on Lupus News Today.

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Why We Need to Bring Our Chronic Illnesses Into Conversation

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“I didn’t know you had lupus,” friends say when I tell them I have a chronic autoimmune condition.

I know you didn’t know I have lupus. You didn’t know because I just told you and plus, I don’t look like I have a chronic autoimmune condition.

When asked about lupus, I might give the stock medical answer: lupus is a condition that causes one’s immune system to work against healthy tissue in a person’s body. The symptoms range from mild to severe (though I usually brush over the severe symptoms because one, I haven’t had any of them [thank the Lord] and two, it just worries people).

Have you ever been in this spot before? Chronic illness is one of those bombshell topics of conversation. It lands in the middle and no one is sure what to do with it. It can explode into being too intimate, which can leave you feeling embarrassed, or highly clinical, which can leave you feeling like both a doctor and a patient. Sometimes, it’s just a dud. You mention what it’s generally like to live with chronic illness and then change the topic.

However, I’m interested in bringing chronic illness into conversations. Because a conversation about chronic illness is not just about the illness itself — it’s a much deeper and more intimate conversation on limitations. And we all have those, right?

“But, that is so awkward and really vulnerable and too personal! Do people really want to know why I sleep 10 hours and still don’t feel energized? How could telling someone why I can’t walk long distances be beneficial to a conversation?”

I hear you. The last thing any of us want is people’s pity. What we want is their understanding. Understanding comes through conversation. Understanding can change the climate for people with chronic illness.

I know that living with a chronic illness is a journey: the way I talk about my lupus is not the way you might be ready to talk about your illness — that is OK. Wherever you are, take a moment to consider the power your story can have in a conversation.

1. Invite questions.

None of us are medical experts, but we’ve had enough doctor’s appointments to know what’s up. Often, people hold back on questions or change the topic because they don’t know if questions will offend you. Most people are curious or, in my case, haven’t heard of a person who lives with lupus that is under 30. When I tell people I am 110 percent comfortable with talking about it, they relax a little and ask questions.

2. Share the parts of your story that are personal for you.

By this, I mean share the parts of your story where you might have experiences or revelations. For me, I shared the story of how I went from doing physical therapy for my hips to recreationally swimming to eventually doing a 4K mud run. I have a friend who is a track and field athlete dealing with a recurring injury. By sharing my own journey, I helped her realized that she could appreciate how much she is improving rather than dwell on how much she used to be able to do. Stories are powerful!

3. Be a voice for those who are less able-bodied.

I talked to a woman once who had an amputated limb, and instead of viewing her disability as a barrier, she saw it as an advocacy tool to lobby for better construction and campus planning of the university where she worked. Living with lupus has shown me how I can offer my perspective to those who don’t understand what it is like to live and move differently in the world. When we share our stories of aches, joint pain, medication woes, sleeping woes and small victories, we are giving another side of a picture that often focuses on encouraging people to do more. We are a voice that says, “Hey, some of us need to slow down, and that is OK.” Not everyone can lend this perspective, but that person to do it could be you! Yay, advocacy!

4. Share coping strategies.

I remember talking to another friend who had a chronic illness and we were describing our pain levels and what we would do to alleviate it. It was honestly a really fun conversation. We discovered we had different metaphors for our pain (baseball bat bruise and wailing siren) and our coping strategies were different: warm towels vs. a foam roller. These discussions don’t even have to be with a person who has a chronic illness. I’ve learned stretches from a retired gymnast friend, breathing techniques from a friend who manages anxiety and basic mindfulness strategies about monitoring my energy from my mom.

Whether you follow the suggestions above or use your own strategies, know that your chronic condition is not something to be afraid of in conversation. The illness is a part of us and can eventually be worth sharing as a point of view or wider conversation starter about how we care for ourselves and understand our limits. Do you have a way you talk about your condition in conversation? Comment below!

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Why I Worry About Anything and Everything Now That I Have Lupus

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I’ve always been an overthinker. There’s rarely a time when there isn’t something racing through my head. But it used to be different. It was a lot more carefree and a little less serious than it is in my present. Now I don’t just overthink, I also overworry. And it’s never-ending and constant.

I worry about anything and everything now that I have lupus.

I worry about how I managed to end up with this chronic illness that I get to call mine. I worry how it’s going to affect my future and how it’s constantly working to hurt me any way it can.

I think about the years ahead and plead with a higher power that I’ll always be strong enough to be who I know myself to be. Right now, I’m committed to my fighting spirit and to keeping who I am and what lupus is as separate as I can, but I’m scared it won’t always be possible as time goes on.

I worry that, like the metaphorical grain of sand in a pearl oyster, lupus will continue to work over time, irritating me internally until it finally gets what it wants from me.

I worry about all the medication I take and how they’re affecting me right now and what the consequences of all these prescription drugs might have in the long run.

I worry about the steroids I’ve been on for nearly six months and how they’ve altered parts of my body and if these changes are only temporary or something I’ll live with forever.

Every day I look at myself in the mirror and see two sides of myself. Small parts of my own body and face that I know are truly mine, and the parts that have fallen victim to the combination of prescription drugs I take.

I worry about my self-esteem and self-image.

I can see the weight I’ve gained thanks to the steroids and anti-rejection medication, and it’s giving my resilience a workout. Too often I have to remind myself that my self-image is sometimes distorted and the way I look is perfectly healthy.

I worry about the fact that my autoimmune disease makes me more susceptible to bouts of both depression and anxiety, and I worry how this part of my life right now is the worst time for my mental health to be negatively influenced.

I worry about my photosensitive skin and how doing the things I love and spending so much time outside might work against me. But on the flip side, I worry if I give in by staying in, I’m letting it rule my life.

Most of all, I worry that even though I’ve taken a stand against lupus in the external world to keep myself independent and free of it wherever possible, right now worry has taken up residence in my mind. And I can’t see myself shaking it anytime in the near future.

This post originally appeared in Kristiana Page’s column “The Girl Who Cried Wolf” on Lupus News Today.

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To My 5-Year-Old Self Who Hasn't Been Diagnosed With Lupus Yet

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Dear 5-year-old Kristiana,

I don’t know how to tell you this, but turning 21 isn’t going to be quite what we expected. Your life is not going to be a fairytale. You’re going to face some really hard times from which no one can save you.

You’re going to learn that what everyone says is true — life can be really unfair. But even more than that you’re going to realize just how strong you are, and how nothing and no one can or will ever take that from you.

You’re a fighter. Ever since the day you were born six weeks premature, you always have been; don’t you ever lose this trait. There will come a time when this fighting spirit will be the most invaluable thing you have and the only thing that stops your world from turning inside out.

Continue to work hard in school and throw yourself into anything and everything you’re passionate about. We accomplish so much and, despite the odds, this will never change. No matter what stage of life we are in it will always be a point of pride.

Don’t be afraid to fall and to fail. I promise you will always make it out the other side and you will always be better off because of it.

I know you’re a happy kid, but whenever you can, smile more, laugh more and take every moment not for what it could be, but for what it is. Celebrate the days you spend outside in the sun and appreciate that you live a life so free and void of limits.

No matter how you feel in any one moment, please know there are so many people who care about you and love you. One day, when you need it most, you’ll realize just how many there are.

You’ll understand that no matter how strong you are internally, it’s not a sign of weakness to lean on those around you from time to time. You’re not superhuman and no one will ask you to be – you can’t do this alone.

Look at your family and cherish them for everything they are to you and everything they will be. In 2016, those four will see you at your very worst, only to stand by your side and keep you together when you feel like you can’t do it yourself.

How I wish I could protect you and stop you from having to go through all of this.

Part of me feels as if I failed, like I could’ve done something, anything, to shield us from this outcome. But deep down I know there was nothing I could’ve done, and I’m not at fault.

I won’t lie to you; there will be times of darkness, times when the very sky feels like it’s falling and times when even tears can’t adequately convey your feelings.

But you will learn so much, and become so much more than you’ll ever know. And one day you will leave this world the exact same way you came into it — fighting.

My sweet, it honestly breaks my heart and I don’t know how to tell you this, but you’ve got a wolf following you. While he may be only your shadow at present, don’t be fooled by his patience. He’s been chosen for you, and when the time comes he’ll make sure you’re never the same.

This post originally appeared in Kristiana Page’s column “The Girl Who Cried Wolf” on Lupus News Today.

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Why Caretakers Like My Husband Are Heroes in My Book

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We sat next to each other in that solemn office while my hands nervously moved about. He glanced at me and smiled as if to say, “It’s going to be OK.”

We knew it was bad.

But we were in no way prepared for the news we got.

I was to start chemotherapy.

At 14 weeks pregnant.

I watched his face as tears drenched my shirt. How could this be happening? This was not part of the plan. I had already served my time as a sick person, or so I thought.

We had been told one-third of patients go into remission during pregnancy, one-third stay the same and one-third get worse. We were naively hopeful that things would quiet down for me. Perhaps this was our chance, if we were ever going to take one, for me to get better.

Even for a little while.

We never imagined that, for us, starting a family would entail discussions regarding the risks and benefits of chemotherapy.

We had little option but to concede.

We drove our heavy hearts home that afternoon. I glanced in his direction, noting the worry behind his eyes. He tried his best to hide it.

But he never really could.

Some time passed, and again I watched his face as we received news of avascular necrosis, a condition leading to the death of the bones in my hips. I watched as he helped me into my wheelchair, and I studied his face as he carried me up the stairs.

I secretly waited for him to get angry. Angry with me. To wish he were somewhere else, anywhere else. Maybe even with someone else. But the anger never came.

Again, I watched him as I was placed on high dose prednisone, leading to a devastating 40-pound weight gain. I waited, secretly bracing myself for an inadvertent comment here or there. Or perhaps a subtle look of disapproval, confirming my own secret feelings of guilt and shame. But the looks and comments never came.

A few months passed, and I glanced to the foot of my hospital bed, noting his furrowed brow as he looked in my direction. The past few days hadn’t gone well, and deep concern was written all over his face. I had endured a hip replacement, but there were complications. The anesthesia didn’t take, and my pain was severe. More, my legs were now two different lengths, requiring an additional surgery for revision.

All we could think was, “At 33 years old, how did we get here?”

I exhaled deeply, bracing myself for movement, as I needed to use the bathroom. I watched as he quickly moved about the room in an attempt to help me sit up and make my way out of bed. My pain was returning again, and my muscles clenched in agony. Tears of frustration soaked my cheeks as I struggled to sit up in bed.

I looked up to see him swallow hard, holding back tears of his own. I knew he wanted to be strong. Strong for me and my daughter. Anything to make things OK for his girls.

But his eyes. His eyes told a different story. They were the eyes of a broken man. They were eyes filled with sadness. And dark circles that had come to stay. They were eyes that spoke of weariness and sorrow, having been beaten down one too many times by the unrelenting and cruel storms of chronic disease.

But he would never tell.

No, instead he persisted. Persisted in faith. And persisted in care.

It has been said, “Love is not what you say, it is what you do.” He had proven this to be true time and time again in caring for us despite his own exhaustion and desire to just rest.

There were dishes to be cleaned and laundry to be put away, and he had worked all day. It saddened me as I watched the exhaustion take over his body, knowing he was the one getting up with our 3-year-old daughter so I could rest. He knew without rest, I would flare. And so, he insisted without hesitation that he would be the one to get up early with our girl. Not only that, but at bedtime he would be the one to put her down again, so I could rest to somehow help alleviate some of my pain.

But it was too much. Too much for one person, and I knew it. But what choice did we have?

Even still, after all of his sacrifice, I am the one to receive flowers and cards in the mail. I am the one to receive visits in the hospital. And I am the one to receive countless emails and text messages with prayers and good thoughts for healing.

As thankful as I am for the love I have received (and truly, I am!), I can’t help but ask, not only as a patient but also as a wife, a mother, a nurse and a friend, “Who is left to care for the caretaker?” Who takes care of the person who cares for everyone but himself? Who supports the one who takes on more than he should, the one who shoulders more than he should, all in the name of love? Who cares for that person? Because as brave as we all are, and as much as we all face (and we face a lot), it is the
caretakers like him that are, in my opinion, the real and often unsung heroes in the story.

They are the ones who dress those of us who can’t dress ourselves. They are the ones who feed their loved one, standing by them each meal. They are there for every new health crisis and every bump in the road. They are there for every ugly moment and every bitter tear. Their love doesn’t waver. They aren’t looking for an easy way out.

These rare, beautiful people are the heroes in my book.

Mother Teresa said, “I have found the paradox that if I give until it hurts, there can be no more hurt, only love.”

These people aren’t seeking attention for the amount they sacrificially give. And they aren’t posting their good deeds on social media for the world to see. No, their work is often done in private with little to no thanks.

And still, they give.

Bryan Butvidas said, “Love is selflessly giving your breath away to allow someone else to breathe.”

And so, today and every day I am thankful for the one I have standing beside me, who has on more than one occasion given me his breath so that I could breathe.

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