woman leaning on a railing looking at a park

Living With Chronic Pain Doesn't Make Me 'Strong' – Just Disabled


“You’re so strong.”

I read that sentence over and over, but it’s not the first time I read it or hear it. Whenever I explain that I suffer from chronic pain, listing a few of the symptoms of fibromyalgia, it always ends up with someone saying, “You’re so strong” or “You are so brave,” but every single time it just feels wrong.

I know I am supposed to thank the person. I feel my face slightly going red, as I tilt it down and decide whether to say “thank you.” It is expected of me to say it, because if I answered, “No, I’m not,” they would just try to convince me that yes, indeed, I am. Because they don’t think they could ever live with chronic pain, in their eyes, I am so brave to even open my eyes each morning. And it is this concept that makes me upset, because living with chronic pain does not make me brave or strong. It just makes me disabled.

woman leaning on a railing looking at a park

It has been a year since the first time I answered, “I am disabled” to questions such as “What’s wrong with you?,” and each time, my face did not show shame or a desire to hide because of my disabled status and life. And as every person tried to devalue my disability, trying to convince me I was not simply because they could not see my disability, I wondered why – to them – disability was such an awful concept that they had to spend their entire time convincing me I was not. To them, a disabled life was not a worthy life, and categorizing me as disabled left me out, cornered me to the borders of society and worth.

As I look at myself in the mirror, I see many things. I see my red cheeks and my light smile, the chubbiness of my curves and my weak legs. In each of those characteristics, I see fibromyalgia and disability. I see and feel pain: but I don’t wonder any more when it will go away. Some days it feels like it can conquer me whole, other days it feels like an intrinsic part of my body I cannot detach from. But does it make me strong? Does it make brave to live my life as every other human being?

Every single molecule in my body screams “no.

 

Someone identifying me as brave and strong puts me in a different position from them. It takes me away from their same equal pane, and leaves me on the borders under a label that says “disabled.” And while I do categorize myself as disabled, I doubt whether my pride and society’s notion of disability overlap, or whether they are two completely different notions.

Telling me I am strong devalues my struggles. It makes my life not worthy, as if I am fighting for something I shouldn’t fight for, but my disabled being is beautiful. All the sacrifices I make to accommodate my disability are not something dreadful I am giving up on: they are just accommodations for me to live happily, just as happily as if I had a healthy, able body.

As much as I will never stop fighting for awareness for fibromyalgia and disability, trying to make understand able-bodied people the struggle chronic illness causes for so many lives, I will also not talk about my illness with shame. Fibromyalgia does not make me strong; it just makes me disabled and ill, and that is not something to feel shame for.

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A woman looks in the dark, towards the stars.

3 Things That Have Helped Me Understand and Improve My Fibro Flares


My flares come unexpectedly. This frustrated me at first (and I must admit it still does) because from the research I had done since my diagnosis (which is a dog on lot), I had a pretty clear idea that I would be able to pin point my flares and know when they are coming.

Boy, was I wrong. I struggled with this. I wondered, “Do I truly have fibromyalgia?” But then I took a step back, opened my dreary eyes, and realized I cannot be the only one this happens to.

I can only tell a flare is coming by the weather. Anything dealing with the elements always throws my ever-swinging pendulum of pain, fatigue, insomnia, and of course, the wonderful tumble down the stairs my way.

Other than the weather, it’s up in the air. I could be anywhere. The middle of class. The Museum of History, during an exhibit I had been waiting months to see – or when I haven’t even moved from the couch.

I cannot remember when I experienced my first flare. I just remember the screaming, crying, and pleading with God to help me. Flares can absolutely break you. They instill an even deeper never-ending cycle of depression and a merry-go-around of anxiety which only intensifies the pain, confusion, and utter heartbreak.

Being young, I’ve been pretty determined to try to go day to day doing as much as I can. My flares are becoming daily. The pain is constant – something I hate saying considering I know doctors look at like I’m making it up, just like when I say, “I hurt everywhere,” and they answer with some remark like, “Do your teeth hurt? What about your hair?” My answer is always yes, the sores in my mouth hurt my teeth, my skin, and the sensitivity that radiates from within causes my thick hair to hurt my whole head, neck, and back. So yes, doctors, my pain is constant – I hurt everywhere. My teeth. My hair. My fingernails that have ridges all over them from several deficiencies – yup, they hurt.

But I am used to it. So does it even hurt anymore? Am I immune to my pain? Sometimes I even wonder – am I just making this up in my head? It can’t be. My physically swollen joints, the bags under my eyes, and the bruises from tripping and falling due to my legs giving out from pain prove otherwise.

My condition is invisible but my feelings are pretty noticeable. The side effects, aftermath, and my response to this horrible illness are the furthest things from invisible. I can’t hide my pain – and I try. Boy, do I try.

However, this horrible illness allows you to begin a relationship with yourself that you did not even fathom before your diagnosis.

I learn, utilize, and find ways to help me through flares. A lot of it is trial and error. A lot of it is a shot in the dark, but it’s a shot I’m willing to take if it hits the target.

Here are a few things that I have discovered over the past year that help with my understanding, accepting, and improving my flares.

1. Rest

Tossing and turning in the middle of the night because your lower back feels like bees are stinging it can make you feel a little overwhelmed. You’re exhausted – emotionally, physically, and mentally. Yet, you can not achieve a night of REM sleep due to the pain you are experiencing. You begin to wonder, ‘Hmm. Could I live without my left leg? What about my left arm? Heck maybe even my right. I can learn to write with my left.” Then you think of fantom pain – wondering if it will ever go away, even in the after life.

Then there is the guilt. Ah, the guilt. You want to experience fun, joy, and memory making with your family and friends, so you push yourself to do things your body is telling you not to do. But lately, my pain has set in so heavily, it outweighs the guilt. I spend my days recuperating from the treacherous journey out to my car or the shower that I stood in for 20 minutes, debating whether or not to wash my hair because I did not want to hold my hands up that high for so long. I knew I would pay for it.

But this rest and relaxation is vital to make sure you are  a functioning human being. Do not get down on yourself because you need to rest up longer than others. For me, I always think, “Iit takes me a lot longer to do a lot of things than other people. I might as well rest longer as well.”

2. Routine

Just go ahead and forget about the word “routine” all together. Sure, it’s nice to think of a perfect fibro-free world where your day is filled with familiar events. However, this is nearly impossible with fibromyalgia. My day is different every day depending on my pain. The only the routine I am accustomed to is the routine of my chronic pain. It’s ironic: chronic and routine are actually synonyms. I would take a busy routine over chronic pain any day of the week. Any. Day.

3. Making Changes

I know what you might be thinking, “You have had enough change in your life. Chronic Fatigue, pain, swollen joints, mouth sores – so much change.” But as humans, it is in our nature is adapt. The days of lugging a huge purse or briefcase are more than likely over. I have found that back packs help by balancing the contents of your bag. These little changes add up, they help.

I have learned, when you are in chronic pain, you are willing to try anything. Creams that make you break out in hives, heating pads, essential oils, acupuncture, exercise – basically anything. Anything is worth a shot. Do not give up, do not let fibro win. We are humans, we have feelings, we have defense mechanisms, we have strength. Fibromyalgia is a condition, misunderstood and completely naïve to the fact that the people it picks on – will keep on keepin’ on. Tough times don’t last, but tough people do.

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Person filling out disability form.

When I Got 'the Letter' About My Social Security Disability Application


The letter I never thought I would be waiting for at 53 years old had finally arrived. It wasn’t the type of letter I waited on with the excitement and nervousness of a would-be college student. But this letter would determine my entire existence. For this was the official letter from the government offices known as the Social Security Disability Administration. This letter contained the decision on the evidence I had spent weeks and months working on and submitting to justify my disability caused by, number one, fibromyalgia, and then eventually, osteoarthritis, chronic venous insufficiency, neuropathy, paresthesia, chronic neck and shoulder pain, carpal tunnel syndrome, PTSD, depression, anxiety, chronic fatigue Syndrome, IBS, and sleep apnea.

My symptoms all started at the very young age of 28. I felt as if I were an extremely overweight 80-year-old woman, unable to walk and in a wheelchair or bed. Finally, after five long years of testing and research, I was diagnosed with fibromyalgia. I was relieved I finally had a diagnosis, but now I had to learn about it and how to cope. I also opted for gastric bypass surgery in 2003, thinking this would surely help my health and everything would be great. I did lose over 200 pounds, but over the years I developed more and more illnesses. With each diagnosis, I just kept going, determined to fight them with every part of my being. I would research and read on how to cope with each one, and I slowly began stocking my own personal pharmacy with each prescription the doctors gave me. It had to be this way because I had my children to raise and bills to pay. There was no option, and it was working, or so I thought.

At 46, osteoarthritis began taking its toll on my body and my knees were replaced with plastic and metal. My thumb joints were replaced with metal and rubber bands that could hold a 300-pound. person. I was turning into the Bionic Woman! I still rose above, beating all the expectations of physical therapy, bound and determined to not let these illnesses kill me. I was beating the odds, had gone from 371 pounds down to 165 pounds, and was taking my medications and doing what I was supposed to, thinking “I got this.”

But the years passed and with each year I grew older, more and more illnesses were diagnosed and I felt my fight begin to fade. The pain was overtaking my ability to work full-time, go places and do all the fun family things. The pain was ruling my world as it dictated what I could do and how far I could go. Everything revolved around the pain. I couldn’t escape it, even with my personal pharmacy; it was winning and I didn’t know how to fight it anymore.

I finally had to come to the realization I couldn’t work anymore. At 53, I had to bring myself to realize that my fight was over, my body was taking over because my brain was failing at providing the fight I needed to go on. The kids were adults now and I wanted to save what mobility I had left for my grandkids. If I continued to push and push my body at work, I could end up in a nursing home. So, after long bouts of depression, anxiety, stress, frustration and feelings of failure, I made the decision to apply for disability. And so began a new fight, the fight of proving I truly am disabled.

I spent hours and hours over weeks and months researching everything I could find about filing for disability. What to do, what not to do, what documents to send, what documents not to send, you name it, I read it. After assembling a 3” binder with all my medical information, I submitted it with my application and waited for the outcome.

Six months later, the letter was now in my hands waiting for me to read the outcome of my entire existence. My existence because if the outcome was not good, I would not have an income of any kind, and how was I going to live? I gave up everything as I knew it. This one letter held all the stress, anxiety, depression, and failures that I dealt with before applying. This one letter held my acceptance of the fact I was disabled. Would they agree? Would they see how hard I fought over the years to continue with my life as I knew it? Would they know how hard it was for me to do this? Would this letter be my ultimate failure in life?

This “would be” fearful disabled person, slowly opened the envelope, slowly unfolded it and began to read these words “fully favorable.” They agreed! I allowed myself to decompress by letting out a huge scream, followed by tears of joy. I was officially a disabled human being on this earth for however many years I have left. All my hard work I did to file had paid off!

I now had an overwhelming sense of a new fight coming through. Yes, I am still going to have to live with the chronic pain the haunts me daily, and the fear of more diagnosed illnesses as I age, but I now have a renewed strength to make the best of what I do have. To be thankful I now have the extra time to spend with my grandkids. To visit them with a reserved source of energy that is no longer spent on working. To give them and my other loved ones 100 percent of me.

Yes, I am a disabled human being, but I am not dead. And I realized it’s not a failure to admit you can no longer continue as you once did when you have a chronic illness or illnesses in my case. It’s a matter of deciding which fight you want to use your strength on and which fight you will win in the end. As for the letter, I never thought I would be waiting for at 53? I approve!

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Sketch of woman with flowers in her hair, and surrounding her

I Know I Now Have Fibromyalgia, but I Am Still Me


Hi guys,

I just wanted to drop you a line and just have a quick chat with you. I wanted to remind you of and to bring up a few things that I find difficult to say in person. I’m sorry I haven’t been able to say these before, but I need to get them off my chest.

So many of my online friends with fibromyalgia seem to have families and friends who do the opposite of what you’re doing right now. They get looks of confusion when they have a good day and then crash the next. There’s a mentality of, “You can’t really be sick then,” that appears, and I can see why it’s causing them so much heartbreak. But do you realize that wrapping me in cotton wool does the same thing? I’m not a delicate porcelain doll who needs protection because I’ve added fibro to my list of health conditions. I’m still me. My part-time wheelchair use, my aches and pains, my fibro fog, they’re just another part of day to day life.

Yes, there are days when I find getting out of bed to be difficult. But there were days like that before diagnosis. I might be a little slower on my feet (or wheels) than I used to be, and I may tire quickly, but I still love the same things I loved before. I still have the same sense of humor. I still write, I still crack up at my favorite comedies, get way too invested in books and dramas, and I still love nothing more than playing with my rodents. I just have to do things at a different pace.

There are days when I almost feel like my old self again. The pre-fibro me who could ignore the pain and the niggling of my body and be the life and soul of the party.. Hours later, I may retreat behind my outer shell to recuperate, but that’s always been me. It just happens that it’s for a different reason, and that it may take me a while longer to come out of the shell.

I really appreciate that you want to help me. In fact, I love it that you do. I know that when you come to me with a suggestion on what I should do to reduce my pain levels, you have my best interests at heart. But if I say, “Thank you, but that’s not a route I’m willing to take,” there’s often a reason. Gabapentin has side effects that probably won’t mix well with my post traumatic stress disorder, for example. I don’t want to try Oramorph because I don’t want to risk opiate addiction. I have the genetic predisposition to addiction, and I know that codeine doesn’t do anything for the pain but, instead, makes me extremely loopy. I know the path I want to take with my medications, but I’m waiting to see my specialist so we can discuss it. So please, don’t take it the wrong way when I tell you that your suggestion isn’t right for me.

And lastly, please don’t tell me that I’m overdoing it if you see me walking. I don’t need my wheelchair 24/7. I can go without it at times. Admittedly, it’s not very often, and I often can’t go without it for long. Although, I’m hoping once I’ve gotten on the med regime I’m hoping to get on, that might change. But there are times when I can, and it feels so good to be free of it and to use my legs, with or without my stick. Even if it’s only for a few moments or once in a blue moon. I know how to pace myself. I know that if I’m going to walk, I need to sit at regular intervals and take breaks. I also know that I shouldn’t do it when on my own. I’ve been using a stick longer than I’ve had my fibro diagnosis. In fact, I’ve been using crutches or a stick on and off since the age of 12. And for six of those years, I was still a dancer.

I love you guys. I know you have my best interests at heart, just as I want only the best for you. Things really aren’t that different now. I’ve accepted that I’m probably never going to be back in full-time work, but I’m still me. I’m still going to pace myself. I’m still going to be stubborn and try and find a way to beat the odds. When you’ve been doing it your whole life it’s second nature to you. And let’s face it, could you really see me doing anything else? And I’m still determined that I’ll find a way to be out of that chair rather than become more reliant on it. It may not happen, but I won’t give up. And if I do get on my preferred choice of meds, I’ll keep you all informed as to how it’s going.

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sign on window for 21st birthday party

The Difference 5 Years of Illness Can Make on Friendships


When I was 16, I had a birthday party. All my family was there, all my cousins, aunties and uncles that I hadn’t seen in ages. All my friends were there (bar a few that couldn’t make it through work, illness or other commitments) and everyone came together to party. There were no worries about this party.

This month I turned 21 and I had a birthday party. But this time only one group of my family turned up — my auntie on my mum’s side and my four cousins. The rest said they were coming, but never showed. Mum invited loads of her friends and almost all turned up. All my friends were invited, pretty much the same guest list as my 16th party… but this time, six friends turned up. That was all. I had invited over 100 people… and six turned up. I had my boyfriend, one of my best friends, two close friends and two friends I haven’t spoken to in years but are still good friends.

Not quite the turnout I expected. None of the people I went to school with and I still call my best friends were there. None of the friends I’ve made since leaving school and sixth form. None of the friends I used to hang out with in summer down the park. No previous work friends. Just six friends. Six friends I am so grateful for and happy they turned up, more than they will ever realize.

Don’t get me wrong, all the people that Mum invited were my friends, too, and some of them were practically family. I really appreciated them being there. But it was a kick in the guts when none of the people I was missing so much and was so excited to see again bothered to turn up. Especially when they said they’d be there. I understand some had genuine reasons, they had work, they were ill, they had other commitments, but they let me know and I understood. But others didn’t turn up for other reasons.

Here’s the thing. In those five years since my 16th birthday party, I got diagnosed with two chronic illnesses — fibromyalgia and eosinophilic esophagitis. I’ve also been diagnosed with irritable bowel syndrome, anxiety and depression in that time and am currently battling them all. In those five years, I got kicked out of sixth form for “not being ill enough to warrant this amount of time off” as I was fighting for a diagnosis and struggling to get through the days. I’ve had four jobs and had to leave each and every one because of my conditions. I also lost most of my friends.

During all this time, my friends have been going to uni, learning to drive, moving out and generally moving on with their lives how they should be. How I should have been, too. I should have been by there side doing exactly the same things, yet out of those things, I’ve only accomplished the driving one.

Don’t get me wrong, I am proud of that and driving has made my life so much easier in terms of being able to go out and pretend to be normal. But I had kind of planned to do a whole lot more by my 21st birthday. I’d had this whole idea of how my life was going to be and although I didn’t have a specific plan of what career I wanted or what car or what uni degree I was going to do, I knew I wanted to do it. I wanted to move out and start ticking off those boxes. Those basic “I am an adult” boxes. I was so eager to become an adult and start living my life that I didn’t notice at first my life crashing me.

But the fatigue got worse, the pain got worse, the brain fog got worse. I stopped going out as much and slowly fell behind. All my friends were going out drinking on the weekends and I couldn’t go. If I did go, I was on orange juice and to them that became boring. I couldn’t stay out all night as I was too tired and in too much pain, and that became boring. I couldn’t dress up every weekend in platform heels and a skimpy dress as the heels hurt too much after too long and I would have to take them off or face not being able to walk from the pain in my legs. I couldn’t dress up in the fancy clothes as the hurt my body after a while, no matter how soft the material, and it made my skin itch and feel bruised where it touched me. I couldn’t go out all dressed up with only a clutch bag, as I had to bring my medication with me at all times “just in case” as my conditions were too unpredictable.

I feel like I became a burden to them on a night out, although I was the “designated driver” of the night. I couldn’t dance all evening like they could and had to go sit down after a while because of the blinding pain or I wouldn’t be able to drive later. That meant I had to be “checked on” every now and again between tracks and as caring as they were, I knew they didn’t want to have to deal with that. I couldn’t play the drinking games like they could and down the shots or try new alcoholic mixes and that became boring. Who wants to play a drinking game when one player can’t drink? Who wants to go out dancing with someone who has to sit down after too long and bring a massive handbag full of medication, spare shoes and clothes “just in case?”

So soon I began to stop being invited out as much, or only to “casual meetups” where we only went out for coffee or went for one or two drinks before having a quiet night in. But I knew they were all still going out. I’d see all the Snapchats and the Instagram photos of the many nights out and that’s all they’d talk about when I saw them and the “You should have been there!” comments despite not ever being invited to go out with them anymore. I lost contact with so many people, purely because I was never invited out anymore and I never got to see them. They stopped telling me when they’d be back from uni and stop telling me when they were free to meet. They got fed up of me canceling last minute do because I was too ill or having to leave early because of it. So they moved on without me.

I’m not angry at them… well, maybe a little bit. I’m angry that I can’t do any of the things I used to and because of that, I don’t get to see my friends anymore or just don’t have any friends anymore. I’m angry that just because I’m ill and can’t do certain things, I was too “boring” to hang out with. I’m angry that no one made any efforts to check I was OK after a while as it’s “just the usual illness again, she’ll be fine” or “She didn’t look that ill the other day, she must be faking.” I’m angry that I can never have the life I wanted and can never be the same light hearted, easy going friend I was before. For some people, that meant goodbye.

 

I’m angry that just because I got ill, I lost friends. As if it wasn’t bad enough that I’d lost everything I thought I knew and my entire life plans, I ended up losing the people I turned to for help. Losing friends because of my illnesses was never a blow I expected and it’s one of the ones that hit the hardest. I’m jealous that they get to walk away from my illness and I never can. I jealous that they get to live a normal life and tick all those adult boxes, while I sit in bed, unable to move, writing this. This is the most productive thing I’ve done all day and it’s taken me hours to write! I’m jealous and I’m angry and I’m bitter about it.

But I’m learning to cope and it’s taking me a while. That is OK. I refuse to feel bad about it anymore. I refuse to feel embarrassed by my illness and embarrassed that I’m still learning to come to terms with my illnesses and how to cope. I refuse to feel embarrassed about my party — I still had a good night, I still celebrated, but it was bittersweet. But I refuse to feel embarrassed because I’m lonely and only six friends showed up. I refuse to be embarrassed that some people couldn’t handle my illnesses and left. Because in the end, I know where I stand. I’m the ill one and I’m a different person because of it. As hard as it is, in these five years my life has completely changed and not everyone stuck by me. But that’s OK. It sucks, but it’s OK.

To those friends who still try, still text and still make an effort where they can, thank you. It means more than you can ever imagine. Yes, you’re busy and don’t text every day, but I know if I need you, you’re there. I’m not “too boring” for you. I’m not “too much negativity” for you. I’m not angry at you for living your life and “leaving me behind,” because when you can be, you’re still my friend and that means everything.

To those who left, I’m not even sorry. I will never apologize for being ill. This is not the life I would have chosen for myself but it’s the life I have now. If you can’t handle that, that’s fine but next time, please admit it. I’d understand. Unfortunately, I’m now used to it.

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The Medical Community Needs to Have a Better Understanding of Fibromyalgia


It took five long years of seeing many doctors, with a million different diagnoses and tests, to finally have a diagnosis of fibromyalgia. The mental anguish I went through was astounding and very draining. Most doctors ignored my symptoms and treated me like I was exaggerating or making them up. “Just take a Tylenol.” “Exercise more.” “Get some rest.” “There is nothing I can do for you,” etc.

In October 2013, I had horrible pain in my neck, arms and shoulders. I called my primary and he said, “Take a Tylenol.” I told him this pain was worse than before. Needless to say, the Tylenol did nothing. I called back and was told the only available appointment was in three weeks.

A week later, the pain was worse and I started to have trouble walking. My muscles felt like they were being pulled and tight. I could only take baby steps and I felt so weak, completely exhausted – like the wind had been knocked out of me. I went to the ER. They panicked and assumed it was a stroke. I said it was on both sides, but no one listened.

After a slew of tests for the heart, brain, back, blood, etc., everything was normal. They kept me overnight for observation. I tried walking around the corridor of my floor, but it was so painful and difficult. I just laid there, terrified of what could be wrong with me. What if I got worse?Why were there no answers? I felt trapped within my own body.

The next morning, after a night of tossing and turning and barely getting any sleep, my primary said, “It’s probably peripheral neuropathy.” Probably? “I am going to prescribe Lyrica in high doses and see if that helps.”

 

I followed up with a neurologist who also ran a battery of his own tests: EMG, physical (head to toe), etc. He ordered a brain MRI, because he suspected multiple sclerosis and wanted to rule it out. More terror, fear and rampant thoughts. I could not sleep or eat. The fear was consuming me.

Two weeks later, I went back to see the neurologist and he said it was not MS, but fibromyalgia. I had never heard of it, but I remember sighing a huge sigh of relief that there was finally a diagnosis and hopefully a treatment plan. The doctor did not know a lot about fibromyalgia, except to say the best thing for it was exercise. I thought to myself, how does one exercise feeling like this?

I started seeing a rheumatologist and he was pretty much the same – “There is not much I can do except send you for physical therapy and prescribe Neurontin because the Lyrica made you sick.”

We go through so much mental anguish, fear, uncertainty, etc. just living with this day to day, and the medical community seems to be so uninformed. I myself had never heard of fibromyalgia. “There is nothing I can do” is the most common response.

I advocate for the millions of us who struggle with the disease. I am now a committee member of the Fibromyalgia Care Society of America and we are holding a walk on June 3rd at Branch Brook Park in Newark, NJ.

FCSA is currently working with leading medical colleges and
teaching hospitals throughout the country to develop the standards of care model and offer elite multidisciplinary care to those living with fibromyalgia. We also have a virtual page for folks who would like to contribute to help us obtain a Center of Excellence for the care and treatment of fibromyalgia.

Inform yourselves, research, read books, don’t be afraid to ask questions. Reach out to the millions who have fibromyalgia. You are not alone.

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Thinkstock photo via Archv.

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