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How Chronic Illness Gave Me the Dream Life I Never Expected

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You know how you strive for the “dream” life? You look for that one person who is just right — someone you can spend your life with, buy a house with, have a family together. How you work so hard to build a career that utilizes the best of your talents? How you put in the extra hours because you know it will pay off in the long run? All to get to that point where everything starts coming together: wonderful husband, new home, great job, two beautiful children.  

I was making it in my little world. And then: that moment. My neurologist leaned forward in his chair and told us we should do the things we wanted to do with our little family. Before I wouldn’t be able to any more. I reeled. I felt like shaking my fist at fate itself. Screaming in its face. I had worked so hard to get my plans in order! So how was this possible? The neurologist had diagnosed me with a progressive neurological disorder. I inched my tired frame out of his consultation room, leaving my dreams on the floor where my feet had been. Ribboned shreds of how I thought my life would be.

And there was grief. Adjustment. Anger and denial and frustration and so many tears. There were struggles and hardships. Moving around in a body that seemed to crawl from one medical event to another. But slowly, as the years crept past, the sorrow settled deeper than tears. I noticed I could see out beyond my own situation. I had a new lens to look through. I was seeing the same world, but it looked completely different.

I realized how much I wanted to be here.

I understood the value of existence and drew deep on the drive to survive. I began to research. I battled my way through medical journals, one laborious sentence at a time. I made notes, I joined forums, I asked questions. I sought help. And when help didn’t come, I took a different avenue. I found different doctors. I searched and strived and struggled. Some days, all I could do was survive the symptoms. Other days, I could do more. Somehow, I kept pushing. And in a strange way, I kept planning. It’s just that my plans were different. My perspective was entirely new.

And then, one day this January, when my will was weakening and I felt like I would never feel well again, I finally embarked on a new treatment pathway. Others’ hopes were not high this would work, but mine were. And within days I was feeling light years away from how I felt pre-infusion. I began to believe that “progressive” might in fact become “chronic.” The shades of difference between those two descriptors have given me a new lease on life. I’ve been ill for six years. I’ve been struggling through every day for six years, gritting my teeth and willing myself forward. Fearing the future and fighting for an alternative prognosis. And now, seeing the contrast between myself pre- and post-treatment, reflecting on all I am learning about life, I can also see that this journey has had some surprising positives.

Someone asked me a question the other day that might seem preposterous to people living with serious illness:

“Can you think of any positives that have come out of having an invisible illness?”

My response came out fast: “Yes!” Yes I can! Here are some of the gifts my invisible illness has brought me:

I Found My Passion

I had to rethink my work to fit my condition, so I started writing again. I love writing! Since I started writing in May last year, I’ve blogged 178 posts. I’ve written 24 pieces for other publications. I’ve been so busy and it has been fulfilling. All that writing has me believing my lifelong dream of writing books is not ridiculous after all. I may never have discovered this if I was still focused on my previous career.

A Fast-Track to Personal Growth

My husband, myself and our children have faced big character-developing situations. For my kids, equal difficulties would have otherwise been encountered later in life. They actually have the advantage of dealing with big life stuff early — they have their parents alongside them to help them through it. They’ve learned a lot about compassion, independence, flexibility and courage. They have all of these qualities in spades. Would they have been able to develop these if life hadn’t given our family this challenge?

The Time Is Now

We have been forced into acting on our “bucket list” and as a result, we’ve made memories we treasure. We’re naturally conservative, risk-averse people. I know we would have been putting any extra money straight into the mortgage if I hadn’t gotten sick. Because of that neurologist’s advice, we’ve been busy seizing the day. Whenever we can travel, we do. If there is an opportunity for us to do something special as a family, no matter how I am feeling, we try to do it. And I am glad. Our photo albums are bulging with images that will remind our children, always, how much fun we’ve had together. It’s worth far more than all the money it ever cost.

Knowing What Really Matters

We don’t hold back from telling each other how much we love each other. And we don’t let arguments simmer. It’s not worth the drama, the trauma or the angst. Our hearts are less scarred. We nurture each other and listen to feelings. Solving problems between each other has become a feature of our family culture. That is a huge positive for all of us, and a really special gift we can all give each other. Open communication and an eye on the bigger picture. What really matters, after all?

Finding New Possibilities

Life is not what I planned for it to be, but I find it is better than I ever expected. It’s surprising what turns up. I am about to embark on a leadership program sponsored by the Be. Organization. Through my writing, I was identified as a voice for social change. My passion for writing about the issues that affect people with invisible illness has been recognized, and I am so excited about the year ahead. When I was first diagnosed, I never could have comprehended all the opportunities that would still exist for me. It feels like I never would have traveled this path without that diagnosis. And this path seems to be exactly what I am supposed to be doing. I plan to be a powerful voice for social change. I want to increase compassion in our world so people who are struggling can be understood, valued and find a way to contribute to the future.

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7 Things I Wish People Who Don’t Have Chronic Gastritis Understood

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I was diagnosed with acute gastritis in March 2014 and the doctor told me to stop eating acidic foods. I did that, and nothing was cured. I kept throwing up food I’d never digested, and throwing up blood no matter what I ate. Between March 2014 and April 2016, I have been to hospitals more times than I can count on both my hands. Doctors didn’t believe me, rolled their eyes and tested me using machines that cost too much money. This year, April 2016, I was diagnosed with chronic gastritis — that means for life.

The 7 things I wish people who don’t have what I have understood:

1. I am not skipping a meal to lose weight. I cannot eat lunch because my body gives me a choice between lunch or dinner. If I eat lunch, I cannot eat dinner and that is just how it needs to be in order for me to not get sick.

2. It is real. I am not making up anything. I am not over-complaining. I have spent hours and days not sleeping, so sick and in so much pain. There was nothing I could do.

3. I deal with depression due to the symptoms, the ignorance from the doctors and others, and the hospital bills.

4. It feels like a neverending domino effect. If my severe GERD gets triggered, the gastritis is triggered. If my IBS acts up and I am unable to go to the bathroom for longer than two weeks, which happens often, the gastritis is triggered.

5. The cause of gastritis isn’t clear. For all the possible causes of chronic gastritis, the only one that could even possibly be true in my case is stress. I am constantly anxious and overly stressed, and I am trying. It’s harder to keep it at bay than it seems.

6. Please understand what I can and cannot eat. It may seem strange, but I need to do what is best for my body, mind and my gastritis. Please accommodate and understand.

7. There’s no simple solution. After much searching and consulting doctors who weren’t helpful, I found a nutritionist who understood me, listened to me and gave me options. For me, aloe vera juice and boswellia (frankincense oil) are my lifesavers. These two remedies stopped the pain, sleeplessness, throwing up, and stomach bloatedness I battled with for two years in a week – and it has lasted over two months now.

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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My Illness Is the One Canceling Plans, Not Me

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To those who don’t understand my situation and the toll my chronic illness has on my life:

When I cancel plans I’m not being anti-social. I’m not avoiding going out because I don’t want to have fun. When I turn down an invitation for an event it’s not because I don’t want to be there. When I decline going shopping or to the mall, it’s because I don’t enjoy shopping. I would really love to have the energy to walk from store to store, but walking to and from the car alone exhausts me.  

Going anywhere away from home involves having to prepare and take all my own food with me and then answer everyone’s questions about why I’m not eating what everyone else is, what am I eating, do I want a drink, and many more that remind me how hard it is to live like this. None of these questions comfort me or make me feel better — they all remind me how badly I want to be able to consume solid food and eat and drink like everyone else. If I ever do go out, I’m not acting like a “goodie two shoes” by not drinking. My body is not strong enough and putting alcohol in it would only cause more harm and pain.  

It’s extremely hard to make plans and keep commitments because I never know how much pain I will feel on a given day. It is a daily battle with the pain. Some days it is more bearable and others it is so debilitating I can barely stand up.  The fatigue is overbearing. When I wake up and get a shower, do the dishes and make breakfast it feels like I ran a marathon.  

Please know and understand when I can’t make plans or attend an event, it’s not because I don’t want to. It’s because I can’t tell if I will lose the battle with the pain that day. When I cancel plans it means the pain is winning the battle the battle that day, not me. So when I’m given the reputation of the girl who never does anything, please remember that it is my illness and not me.

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To My Nurses, From Your 'Sick Kid' Patient

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To the nurses out there,

Thank you. Thank you for seeing me. Thank you for not treating me like the mannequin you practiced on for so long during your time in clinical. Thank you for treating me like the human I am while I’m laying in a hospital bed. Thank you for not treating me like another round or statistic — not that that’s all a doctor does, because they do so much more. But you connect with me. Thank you for being kind and gentle when you wake me up at 2 a.m. for my vitals, then again at 5:30 a.m. for my morning meds. Thank you for dropping what you’re doing, regardless of it be eating or decompressing, and running to my room when I call.

Thank you for talking to me in a way I can understand, and in a truthful way. None of the “This isn’t going to hurt” nonsense when you know it will. And also thank you to the nurses who remember my name and come by my room just to hang out and chat with me because you know I’m bored because I’m a 23 year old “kid” on an adult floor.

I will never forget my most recent hospital stay. I had a nurse who was 28, and during our conversation we realized we both just went to Nashville for a bachelorette party. We talked and talked about activities we both did while being there and the restaurants and bars we frequented. Beside the fact that I had an IV in my arm, you would think we were hanging out at a Starbucks the way we were conversing, not a hospital. Experiences like that will always stick out to me because they put you at ease.

I’m not here to give you advice, because I understand your profession is hard enough without others thinking they can do what you do, but I do have one tip: Just be present. Nothing will make a patient feel better or safer than being seen or felt or heard. It will make both of our jobs infinitely easier and better.

Thank you for treating me like a friend you’d meet outside a hospital, especially when we’re so close in age. Thank you for bestowing your knowledge upon me. And lastly, thank you for keeping me alive.

From,

All us sick kids out there

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Redefining What It Means to Be 'Successful' When You're Too Sick to Work Full Time

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“You are so lucky to work part-time! I wish I could work part-time,” my friend said to me after I explained that I was only working three days a week. I get this all the time. People think working part-time is such a privilege, giving you more time to do all the things you want to do, but I work three days a week and spend the other four recuperating my energy.

I don’t feel “lucky” to work part-time. I work part-time because I am too sick to work full time. I don’t even know if I will be able to continue working part time because I am so sick. It is stressful to work and manage my symptoms at the same time. Every day that I work, I am in pain, dizzy, feverish, fatigued, nauseated, uncomfortable in my own skin. I take so much medicine to mask the symptoms. I love my work, helping traumatized youth, but there are days I feel like I cannot go on.

I never thought I would be in this position. I had a timeline. Go to grad school, get my social work degree, land a good paying job as a medical social worker, and by the age of 29 get my license in social work to start my own private practice. I got accepted into graduate school and was working hard to make my dreams come true. But my timeline has been dramatically altered since becoming ill. I wish I could work 40 hours a week at a good-paying job, but the reality is I struggle so much just to work three days. Usually when I explain why I work part-time, the conversation changes and I get pitying looks. Initially they think I must be “successful” to be able to choose to work part-time, but then they realize I work part-time out of necessity, not out of desire.

When I graduated, I was incredibly ill but believed and hoped I would get better soon. I thought I could manage my dream job as a psychiatric medical social worker while managing my illness. Truth is, in our society, our work is so tied to our identities and ideas about success. So I kept going even though I was sick. My family told me to keep going, keep working, be successful. But I had to give up that dream job, and then I had to give up the next job because I couldn’t manage it either, and then I had to change course and start working part time. I never imagined my life like this. When I had to leave those positions, I felt weak and defeated. I felt unsuccessful.

But truthfully, there were so many times I knew that I should not have been working as much as I was but I kept pushing myself, wanting so much to to stay on my timeline and achieve my goals. I believe now that pushing myself made my illness much worse because I did not give myself time to recover.

Even when you are sick, you are expected to be a productive member of society. But when you are sick, you cannot simply produce, and there are days you cannot get out of bed because you are physically unable to. It was a hard lesson for me to learn, but health comes first. When you are sick you need to take care of yourself and you need to give your body time to recover. If not, your body continues to break down. I learned that sometimes “work” means taking care of yourself. In all honesty, taking care of a sick body is hard work. I had to go through hell to realize that I had to put my health first and take care of the only body I will ever have.

When people think I am lucky to work part time, they really have no idea my desire to be healthy and working full time. But on my days off, I am not out doing fun, relaxing activities. I am resting, going to the doctor and managing my symptoms in order to have energy for the following week.

I have mourned her, the person I once was and the person I could have been. But I have not lost hope. Illness stopped my life on the path I was on, but I am charting new territory and carving another path. It took a long time to accept my limitations due to illness. Even longer for my family to accept this new reality. People knew me as a vibrant, healthy, successful woman and I wanted so much to hold on to that image, but I am working on redefining what it means to be successful and on living a happy, fruitful life even with chronic illness. It is possible to be successful and be sick you just have to redefine what success means. Right now, it means taking care of myself and sharing my story. What can be more important than focusing on my health?

This illness does not define me; it has only made me stronger and more resilient. I have created a new timeline that reflects my circumstances, and have new goals and new ambitions and I never, ever stop dreaming. Part-time, full-time or no time, I am successful because I define what success is for myself.

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When Your Illness Makes You Feel Like a Liar for Answering 'How Are You?' With 'I'm Great'

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“How are you doing?”

We’ve all been asked this question a plethora of times at various instances in life, be it by an inquiring co-worker, family member, stranger or significant other. More than anyone would like to admit, we’ve all also fabricated an “I’m doing great!” paired with a forced smile when the truth is less than savory.

The truth is, with or without a chronic illness, living is a difficult process for everyone. It’s like a maze — there are hindersome obstacles everywhere, and figuring out how to navigate those obstacles and come out alive can be infuriating. When you have a chronic illness it’s like navigating that maze in a suit that renders “normal” skills useless. So when someone asks how you’re doing, you may just want to scowl and shake a fist. You may want them to know what it feels like to be constantly in pain, having tests done, having a bedroom pharmacy and seeing doctors like it’s cool. You may want them to experience the heartache that followed when friends and significant others jumped ship. That’s until you realize that while the illnesses certainly aren’t empowering, the “survival spirit” that ignites while dealing with them, is.

You are beating the odds and continuing to navigate that maze of life. While it’s painful, you’re handling this. You’ve handled everything else — the uncertainty, the pain, the diagnoses, the narrowing of friends and relationships — through trial and error.  There will be new doctors, new medications, new friends and new beaus. Most importantly, there will be opportunities even your chronic illness can’t take away. There will be moments of wisdom, empathy and breakdowns.

The next time someone asks and you feel false in telling them you’re doing great, I have a secret for you. While you may not be doing great, you’re alive, and that means there’s a fighting chance. Try to ignore the nagging negative voice. As Robert Frost once said, “I can sum up life in three words – it goes on.” I encourage you to find something that makes you happy and fight for it. Give it all you’ve got, use that “sick spirit” and go for it. You’ve made it through the maze this far!

Image via Thinkstock.

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