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How Brain Fog Affects My Creativity

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I seriously have a problem. Ask my husband; it’s a thing. I can’t stop coming up with ideas. Like, my brain officially doesn’t shut off… ever. Even when my body is completely worn out and I can’t concentrate on what to do next, I am coming up with an idea on how someone could help someone that is having the problem I am having.

I used to think of my creativity and ingenuity as two of my strengths; two traits I was very proud of. Traits that I knew made me different from most people that I know. Being the idea person made it easier for me to teach, to entrepreneur, to mom, but now… honestly, it’s kind of depressing. To give those of you that are curious just a little bit of insight, I’ll try to explain.

Among whatever else is going on in this body full of questions, I live with fibromyalgia and Hashimoto’s -both culprits of what we spoonies call, brain fog. The Mayo Clinic defines brain fog as, “The inability to focus, pay attention and concentrate on mental tasks.” With that said, it’s not all the time. I mean, I can focus sometimes. Some days are better than others, but if I am completely honest with myself, I rarely have a day where I feel like I can remain completely focused.

So, how does brain fog affect my creativity and ingenuity? Well, I just can’t follow through like I used to.

For a small example, over 10 years ago, I had an idea in September that the high school marketing class that I was teaching should create some sort of Halloween activity for our community that could somehow benefit our Distributive Education Clubs of America (DECA) chapter, maybe a non-profit, and even kids and families.

Guess what? We not only held our first trunk-or-treat a month and a half later, within seven years we were raising a few thousand dollars, helping out a variety of small businesses and non-profits, and offering a safe place to trick or treat to thousands of area kids. Done.

On a bigger scale, I used to work for an amazing nationwide school photography company that was looking for a way to get more involved with the schools and parents that they serve. Among a variety of very cool programs that we implemented, I specifically remember being able to come up with the idea of a variety of low-cost contests that involved thousands of schools and parents and also gave back to hundreds of students and teachers. I believe those contests are not only still active, but have gotten better each year. Done again.

Today, I’d have a list of 29 different ideas and that’s about it.

Let me first make it clear that neither of the above examples happened without really awesome students and colleagues. Yet, I can proudly say that I not only loved being able to come up with a cool idea, share it with people, create a vision, come up with a plan, and assign all the tasks that I didn’t take on myself. I was damn good at managing all aspects of several projects at a time, and celebrating success after success both privately and publicly. Man, I miss those days so much.

And, when I attended a Mayo Clinic class on fibromyalgia a couple of years ago, I learned that a large percentage of us that live with the disease are over-achievers that were once at the top of our game. Which means, I know I’m not alone in this struggle. There are a lot of us that have said “farewell to focus,” let alone completely lost our identity, our ability to be successful the only way we knew how.

Ideas popping into my head at all hours of the day and night used to be exciting to me because I knew I could pick just about any one of them and make them work if I set out to. I was one hell of a project manager. It’s interesting that I still know every piece of the puzzle, every step it takes to put an idea into action, but since my first symptoms a few years ago, I haven’t been able to follow through with much of anything. So that I wouldn’t let anyone down, let alone embarrass myself, I left a job that I loved, and was pretty darn good at when I was first hired.

To help soothe my crushed ego, my oh-so-patient-and-loving husband supported me in following an entrepreneurial dream of mine to purchase a sports marketing franchise that does awesome work, but I couldn’t do it either. Admittedly, it may not have been a cake walk without my friend, fibro, but I just couldn’t get organized. Every single day, I sat spinning my wheels… coming up with brilliant ideas that I couldn’t seem to figure out how to implement. So, I gave up on that, too.

I guess I felt compelled to write on this topic for a couple of reasons:

1. I know that there are others out there that are feeling the same way I do, and I’d love to hear your story. Or, if nothing else, to let you know that you aren’t alone.

2. I have just recently accepted that this loss of identity is one of the biggest causes of my sadness and withdrawal. I am hoping that by writing about it I can move forward and come up with new ways to define success for myself. There I go again.

I’m definitely not hear to give advice, because I am always in search of it. But, I figure that here’s my chance to try to spread some positivity amidst the negativity. If you can relate to these disappointments, then know this – you are still in there. You’re still in that pain-forsaken body! You are! And, I’m still in here! We’re not exactly who we used to be, but our soul remains, even if it’s hanging on by a thread. And, I hope you will join me in trying to figure out how to make the best of the cards we’ve been dealt.

Honestly, except for a handful of shitty diseases and my mama dying way too young, I couldn’t ask for a better life. I’ve been blessed with an awesome family, a beautiful home, wonderful friends, and so many experiences and gifts that I could’ve never dreamt of, and for all of those, I am so grateful.

As of today, I’ve accepted that I may never again be able to do everything as well as I once could. More than likely, I’ll not ever capitalize on the ideas that cross my mind. And, for now, I have postponed the idea of writing realistic fiction novels, creating a motorcycle weather app, and becoming a world-renowned female entrepreneur marketing consultant. For now, I’ll probably just keep coming up with ideas, write some of them down, share some of them with whomever will listen, start researching some of them, and even begin implementing one once in awhile. But, more often than not, I’ll forget most of them… I wish there was a switch to turn off. An idea generator switch.

Better yet, a fibromyalgia switch. Now, that’s an idea.

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Thinkstock Image By: DeepGreen

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What It's Like Working When You Have Fibromyalgia

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You may find yourself asking, “I have fibromyalgia, can I work?”

There is no simple answer to this. Like most chronic illnesses, it depends on how you feel and how the condition affects you. However, I have found ways to manage my fibromyalgia while at work.

I’ve been struggling with fibromyalgia since 2013 but I was only diagnosed late 2016. My arthritis contributed to the late diagnosis as rheumatologists overlooked any symptoms of fibromyalgia – and to be honest, so did I. Once I received my diagnosis and researched the condition, I could relate to all these symptoms: widespread pain, stiffness, fatigue, poor sleep quality, cognitive problems, headaches, irritable bowel, dizziness and depression and anxiety.

Over the past five years, I’ve been working as an employment specialist for a mental health charity and my fibromyalgia rears its ugly head daily while I work. From the minute I wake up, I feel like I haven’t slept a wink after a restless night of sleep. I push myself to get up, get showered, dressed and to get ready for the day ahead. It sounds like I don’t want to go to work when I say that, but I do. I enjoy my job and find it rewarding, so that gives me the push to go. I plan and organize my day and make sure I have micro breaks to stretch my legs, get some air or even just to switch off from it all for a few minutes.

The fibro fog always pays a visit and I write to-do lists, which keeps me on track – apart from the days when I forget what goes on the list! The pain is always there no matter what I’m doing and the micro breaks keep me moving and stops me from seizing up.

I can have this overwhelming wave of feeling hopeless and experience low moods. The anxiety can kick in, taking over my mind and sending me into a downward spiral. At my worst, my depression and anxiety took over and I found it difficult to manage work. It took me a long time to understand that I was burning my body out, focussing completely on work and spending weekends recovering. Last year, I spoke with my employer and took the decision to reduce my hours to part-time and dropped one day per week. At first, I felt a little defeated that I had to reduce my hours but it turned out to be one of the best decisions I made.

Having a Wednesday off breaks my week up perfectly and gives me time to rest and recover both mentally and physically. It’s my rest day and there is not expectation for me to do anything else. I need that day. I’ve started to identify triggers that will case flares: stress, alcohol (not when I working), physically pushing myself to do tasks and cold environments. It’s been a slow process and sometimes I can’t avoid flares and must take the time off work.

The most important thing I would say is listen to your body. You know what you can and can’t do, so don’t push it. Disclose your condition to your employer, take micro breaks, write to-do lists, do part-time hours, identify triggers and have that rest day.

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28 Unexpected Coping Techniques That Help People Manage Fibromyalgia

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When you’re battling the pain, fatigue or brain fog of fibromyalgia, there’s not always an easy solution for relieving the symptoms. Although some may find relief from certain medications, there is certainly no one “cure-all.” Often those with fibromyalgia must go through much trial and error to find methods that alleviate or at least distract from the symptoms.

To help those struggling to find relief, we asked our Mighty community to share some of the unexpected coping techniques they use to manage their fibromyalgia. Maybe some of the following can help get you through your own difficult flare days.

Here’s what the community shared with us:

1. “Hot bubble bath. I guess it’s unexpected for me because of my heat intolerance. The bubbles feel amazing and don’t bug my skin which I expected because everything seems to. It’s now the best part of my day.”

2. “Coloring helps take my mind off the pain as does painting. However, some days I can’t get my hands to do as they should, so those days I watch TV. Especially if I have brain fog, that way I’m not reading the same thing over and over and not getting it.”

3. “I would play apps on my phone, like memory games or rhythm games to help me try and drown out the noise of my pain.”

4. “An extra jacket in case I get cold and a tank top in case I get hot are in the back seat always. I also have three different blankets in case my skin hurts or I get too cold or hot.”

5. “Honestly, Pilates and going to the gym have been great for my pain. It’s really helped strengthen my joints and muscles. I feel so much better since I started going.”

6. “I write short stories, turning it all into something funny, adding a twist of humor to my pain.”

7. “Ordering my groceries to be delivered. I can place the order in the middle of the night if that’s when I’m awake. It’s easier with brain fog to go through my list and not miss things when I can just search the item. And of course the added help of not having to walk, carry bags and have that much stimulus overload.”

8. “[I] watch so many YouTube videos. Sooo many. It makes the day go by pretty quickly.”

9. “Cuddling with my cat. She love to sit on my lap and just purr while getting her face scratched.”

10. “I drink a lot of hot tea and eat a lot of buttered toast and watch a lot of Masterpiece Theatre. For me, it’s about the ritual of it. I had no idea, when I first got sick, how comforting simple routines would be. So much of my life feels out of my control right now. Making tea and toast gives me a little consistency.”

 

11. “I sing my heart out. If I’m sad, I sing sad songs. I sing my emotions!”

12. “TV and music are my two go-tos! Music keeps me motivated to get through life’s daily tasks and TV numbs me from the reality of the pain by allowing me to slip into another world for a small while.”

13. “Marijuana in many different forms has helped me to manage the pain better and to function daily.”

14. “I read. When I read I can ignore the pain I feel everywhere.”

15. “Nature! Ten to 20 minutes of gardening in my bare feet and with bare hands and smelling the compost-enriched soil (absorbing those wonderful microbes that induce good mood). Sitting along our creek and listening to the water burble over the rocks. Sitting on the deck and listening to all the birds singing in our woods. On a beautiful blue sky day, just sitting there enjoying the blueness. Slowly walking through a greenhouse and smelling, touching, and dreaming of more flowerbeds.”

16. “I do yoga to help my muscles and joints.”

17. “I play video games to help keep my brain busy and distracted. It helps me not think about the pain as much.”

18. “When I swim I meet my old body again. It’s great – either sea or pool. It’s amazing for my body and my soul.”

19. “Many [people with] fibro deal with sensory overload, where sound, light and touch is just too much. I’m sensitive to sound. When I get like that, instead of constantly asking my family to quiet down, I picked up some noise dampening ear plugs to use. I carry them with me everywhere.”

20. “Heat packs that stick to your clothes for pain relief on the go.”

21. “A shorter hair cut I can air dry, so my arms don’t get tired with blow drying.”

22. “Putting a blanket/pillow between my knees when sleeping on my side… relieves the tender bone areas.”

23. “Because of brain fog and a certain amount of anxiety about leaving the house, I get flustered and forget things, which has sometimes resulted in situations where I feel worse. So I pre-pack a little zip bag with things I need for going out. I know it’s got everything in it so I can grab that and go. At the moment it has spare pain meds, sunglasses, earplugs, snacks (usually nuts), charged battery bank and charger, handkerchief (for crying, or to hold up if there is a strong smell), spare makeup, headphones, little notebook and pencil. I grab that, make sure I have my phone, and I’m all good to go.”

24. “Disposable dishes and utensils. I just do not have the energy to cook, much less clean dishes. I make myself feel better by only getting recyclable and disposing of them in our apartment complex’s recycle bin.”

25. “I write computer code, or some other activity that makes my mind hyper-focus.”

26. “Monthly float sessions in my local floatation center. Something about the perfectly body temperature water, the heavy concentration of Epsom salts, the darkness and the calm really eases my symptoms and stress. I get amazing sleep for the whole week after.”

27. “Wearing loose clothing like sundresses or soft joggers, especially on bad pain days. Tight pants like dress pants and jeans might look cute but most days it’s just too painful to go there. I’ve learned it just depends on the day and I have to be open to trying new types of clothes I might not have worn before.”

28. “Reminding myself of my past accomplishments which then motivate me to push onward.”

What techniques do you use to help manage your fibromyalgia? Share in the comments below!

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4 Things I've Learned in the Midst of the Chaos of Fibromyalgia

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​I think we can all agree that fibromyalgia and anything associated with it sucks. However, it isn’t all bad, and like any situation it isn’t simply black or white, there’s a lot of gray areas. One thing I have learned through it is to appreciate the small victories and moments of relief. I also learned who I am amidst the chaos:

1. Fibro didn’t take away my dreams. It made me get more creative to find new ways to achieve my goals. I write from home and keep my eyes open to new opportunities. I work on my novel while managing my health.

2. Fibro didn’t make me unlovable. It showed me who deserves my time. When people inevitably left me due to my perceived limitations, it opened my eyes to those who remained beside me. It hurt of course to watch people walk away but I’m glad they did. My time is valuable and when I invest it? I want it well spent.

3. Fibro didn’t take my humor. It made me laugh at myself more and appreciate every time I smile. When I stumble on my words, though very frustrating at times, I try to laugh about it. I can’t help my fibro fog or my irritable bowel syndrome making my gassy, etc. I can help, however, the way I cope with these things.

4. Fibro changed me. I adapted to it so I could become more than my fibro. It’s so hard to remember these things sometimes. But I do my best.

I’m proud of all of us. Those of us who are in flares and persisting even when it feels too hard, and those of us who are having a good day. Every one battling an illness. Keep persisting.

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The Trouble With Having Medical Conditions That Won't Go Away

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I want to start off by making one thing perfectly clear – I am incredibly thankful that I do not have a terminal illness. I am in no way making light of the tragedy of those living with a very clear expiration date. Struggling is not a competition, and that’s not what this is about. OK, now that we are clear, let’s begin.

Just a couple of months ago I passed the 10th anniversary of my diagnosis with fibromyalgia (FMS), and am in my 29th year of Ehlers-Danlos syndrome (EDS), plus a nice lifelong side order of anxiety and depression. I mentioned a few posts back that, according to a chart that my doctor gave me years ago, the pain of fibromyalgia ranks squarely in-between cracking a molar, and childbirth. And it’s constant. Every moment of every day. There are days that it’s reduced, and days that it’s more severe, but it’s always there.  Paresthesia shooting down my arms and legs. My skin burning. A deep aching that I can’t even begin to explain. The feeling of sand and acid in my joints. Boiling water in my veins.

There are cognitive difficulties that cause memory and recall problems, which, when you are in school, or seeing clients, or just trying to function and/or not sound like a complete fool, can be really debilitating. For me, this is a problem. I value my intellect above most things. I’ve spent thousands and thousands of dollars on education, that at some moments just doesn’t seem to be in my brain any more. I’ve spent years building a holistic medical practice, which is a field that already struggles for credibility, constantly having to prove the science behind my therapies. To try and explain a concept, or quote a research study, and just not be able to remember what I’m talking about, or where a study was conducted, or the correct percentages quoted therein, or to mean to say “magnesium” and somehow say “sodium” seriously discredits my work. It’s overwhelmingly frustrating. As a scientist, as an entrepreneur, as a person.

EDS, for me, in addition to a thousand other things, means my joints dislocate really easily. I usually can pop them back in place and move on, but not always. And it’s super painful. It means I have to use mobility aids (KT Tape, a cane, braces) sometimes to function, which leads to a whole lot of exacerbated depression, anxiety, and generally doubting myself, as well as judgment and ridicule from the public at large.

Fortunately, this provides me with great educational opportunities. But, sometimes, I don’t want to educate and advocate, I just want to get a cup of coffee and be left alone.

While EDS is degenerative, FMS technically is not. However, as the body ages and health declines, pain becomes more debilitating. So while not technically degenerative, you could probably fool a lot of laypeople. My doctors tell me that I will probably be using a wheelchair full-time by the time I’m 40. I don’t know if they’re right or wrong, I’m just shy of 30 and fluctuating between walking with a cane and going trail running. I take good care of my body and try to practice good self-care, so time shall tell. Either way, some day my mobility will most likely be taken away from me.

But at least I’m not dying, right? Absolutely! I have a whole lifetime ahead of me of learning new things, trying new foods, meeting interesting people, and having new experiences. But it also means I have, working off the average lifespan for someone like me, as reported by the Social Security Administration, 57 more years of daily, ever-worsening pain. Fifty-seven years of losing my independence, my mental faculties. Of forgetting everything. Of having my hips and knees and shoulders forcibly relocated. Of being to exhausted to function. Of having to carefully monitor what I eat, how I sleep, how much activity I participate in. But at least I’m not dying.

It’s funny though. Working hard, pushing through excruciating discomfort, struggling to function, but not having a terminal illness is a weird situation to be in. Especially if you try and stay positive, be happy with the life you have. People don’t take you seriously. Like you’re not really sick. Like you don’t really struggle. Like it’s all in your head, or you’re blowing it out of proportion.

If you use your mobility aid, people stare, make rude remarks. If you don’t use your aids, people point out that you’re “all better.” If you have to cancel a social engagement or activity, you risk losing your relationships. If you’re me, and you work 90 plus hours a week, every person in your life will suggest that you just need to slow down, reduce your stress, relax, and everything will be fine.

Three things on that point. One, things might be slightly better physically, but it’s not a fix. Two, are you offering to run my businesses or pay my bills for me? And three, who on earth are you to judge my life and my healthcare? (See the entry on “#AncientAbledProverbs” for more on this.)

I honestly don’t know how long I will live. I don’t know if my conditions will cause some surprise problem, or if I’ll be in a car accident, or mugged in New London. Or maybe, some day, I’ll make my last independent choice to turn off the pain. Maybe I’ll live to be 100! Who knows?

But here’s what I do, confidently know. Terminal diagnosis or not, we all are living with an expiration date. We’re all living with our own sorts of struggles. We all have things to overcome and a set time to do so in. So I’m doing all the things I possibly can, while I can. I’m living large, taking no shit, kicking ass and taking names! I’m being bold and trying new things, meeting interesting people, learning as much as I possibly can, working hard, pushing myself, eating delicious food, drinking good bourbon, jumping out of planes (well, soon), traveling, basically whatever the fuck I want. Because who knows?

Basically, a non-terminal but still life-altering diagnosis may be the worst thing that has happened to me, but it’s also kind of the best. I’m mousey. I’m awkward and a little shy. I do better with books and lab equipment than with people. While politically liberal, I have a natural tendency to live conservatively, not spending lavishly or doing anything too out there. I people-please, at the expense of my own well-being. But no more.

I’m talking to interesting new people. I’m writing a letter to the person I admire the most. I’m actively checking things off my list. Next month I’m completing my motorcycle safety training so I can get licensed, so I can get a motorcycle. In the spring, after I graduate, I’m getting my pilots license. I’m being more liberal an less apologetic for cutting toxic people out of my life. On days I don’t have to use my cane, I’m training for a 5K. I’m making travel plans. Because life is incredibly short, and our ability to fully enjoy it is even shorter. Yes, I’m still a workaholic who pours all her time into her businesses, but it’s because I want to, because I love to!

Moral of the story, find what lights your fire, rings your chimes, makes you feel like your life is exciting and worth living, and do those things! Every single one of them. Move outside your comfort zone. Talk to people, but only invest in good folks who are up to cool shit. Plan for the future, by all means, but don’t forget to live in the now. I certainly am!

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “HOME” to 741-741. Head here for a list of crisis centers around the world.

Follow this journey on Work Shark.

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How a Sports Massage Helped Relieve My Back Pain From Fibromyalgia

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Editor’s note: The following is based on an individual’s experience and shouldn’t be taken as medical advice. Please consult your doctor before beginning any new treatments.

I don’t know about you, but one thing I really struggle with is back pain. No matter how active I am, how much rest I get or how careful I am, I still end up needing my partner to work on some painful knots at least once a week. Sadly, he isn’t a massage therapist, but he does the best he can, and it usually helps get me through to my next Pilates class. But sometimes it’s not enough, and I’m left in agony.

 

I’ve been having a particularly bad time recently – a variety of things have been stressing me out, and my back is making that stress known. Nobody told me how hard it can be to deal with a chronic illness, as well as everyday stress on top. I also struggle with bruxism, and have a brace I wear at night to stop grinding my teeth to dust, but I still feel the effects in my neck and jaw. During stressful times, I have to physically stop myself from clenching my jaw throughout the day. I carry a lot of tension in my upper back and shoulders, and although Pilates helps, I still end up in pain most of the time.

I’ve been looking for a massage therapist in my area, but finding one that’s also experienced in dealing with chronic pain conditions has proven to be difficult. So, I decided to call up my physiotherapist and book a sports massage. Despite the misleading name, a sports massage is actually for anyone and everyone. It’s very much a deep tissue massage, and can be great for people who participate in sports and exercise to prevent and treat injury, but it’s also good for anyone who struggles with pain, and needs to release tight muscles.

For those of us with fibromyalgia, massage is actually recommended, but the intensity is a very individual thing. When I was seeing my physiotherapist regularly, she often released knots in my back, and performed myofascial release on my neck and shoulders. While these helped, I could also be quite sore for a few days afterwards. Unfortunately, if you have deep, chronic pain, especially in your back, a massage isn’t necessarily going to be an hour to unwind with some scented candles. It might be painful, it might leave you sore, but it can really help.

I booked an appointment for a Saturday morning. After a long week of work, sitting at a desk for eight hours a day, I felt like my back was in a metal brace. The massage therapist, Christina, showed me into the room and asked me to briefly explain why I was there. When I said, “I have fibromyalgia,” she said, “Ah,” and I didn’t need to say any more. Then she gave me some privacy while I stripped my t-shirt and bra off, covered myself with a towel, and laid face-down on the bed.

I felt twinges of pain as she worked her way down my back. She identified every knot – there were four on my left side, two on my right – and set to getting rid of them. I knew from my previous experiences to speak up if something was hurting too much – the goal isn’t to barely be able to walk out of the appointment, it’s to release the tension and knots that have been bothering you. Sometimes the pain was a bit too much to bear, but it only took a sharp intake of breath for Christina to ease off a bit.

Despite the pain, I actually found the experience to be quite relaxing. We made a bit of small talk, but mostly she worked in silence, and I didn’t want to interrupt. I was quite happy just lying there quietly. Taking half an hour out of your busy week can be a really positive thing, and I was surprised at how chilled out I felt. Before I knew it, the appointment was over, and, although I felt sore, my back also felt freer than it had for a long time.

Strangely, I felt extremely tired afterwards. I went home and slept until the early afternoon, and woke feeling refreshed, my back almost pain-free. I suppose it’s natural for such a rigorous massage to take its toll on you, and, it being a Saturday, I had the luxury of spending the day in bed. I’d highly recommend a sports massage for those with fibromyalgia. It can work wonders on those tight muscle knots that plague us. It can be painful – as we know, during a flare, even the lightest touch can hurt – but if you feel like you can cope with it, it can work wonders.

For those local to Hertfordshire, I went to Barnes Physiotherapy in Hertford and can strongly recommend them.

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Thinkstock photo via David De Lossy.

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