Getting Home Before Midnight: Self-Care Planning With Chronic Illness

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June 7, 6:55 p.m.

I’m standing proud and tall dressed in my new “official school chorus” shirt, generously provided by the parent of one of my students. As I raise my iPhone to my ear to hear the starting pitch (yes, there really is an app for everything), I take a calming breath, ignore the sounds of the crowd and focus on the eager faces of the 53 young children in my chorus.

Tonight we are to sing the National Anthem for our local minor league baseball team and 400 people from our school community have come to cheer us on. With a bright smile to allay the fears of my young charges, I raise my arms and begin to conduct. They sing their hearts out, stand proud and I’m overcome with joy and honored to be given the gift of leading them. And just like that, it’s over. We run off the field as instructed (and because they are 9-11-year-olds they take the instruction to run very literally, leaving me chasing after them) and it’s time for me to assume the role of General. My chaperones jump into action with their clipboards I’ve prepared for them so we can assure all children are safely and orderly returned to the correct parent/guardian that dropped them in my care (they tend to frown when given one that looks similar but isn’t the right model).

Once all have been accounted for, and the last of the chaperones has been thanked, I can enter the game and join my family for a fun night out at the park. This of course means catching up with alums, parents, students and generally spending so much time enjoying myself talking and hugging and laughing that I forget to sit, eat and drink my water. (My husband jokes I don’t really need a seat since I never sit anyway). But nevertheless, I love these moments.

 

The “outside the classroom – OMG she’s human” moments are so crucial to developing relationships with your students and their families. I see sisters I taught from when they were 6 who are now accomplished young women, one about to go off to college. There’s the big brother of one of my current students, a former chorus student who discovered a love of singing in fifth grade who is now off at our next building and mom brings him by “just because he was dying to see you.” I could go on and on (and I tend to, just ask anyone) because these are my “kids.”

Finally, I make my way back to my seat, as my back and neck are screaming, only to find my husband and kids on their way to find me. He knows that, just like Cinderella, my time at the ball(game) is almost up and he needs to get me out before the magic is gone, the clock strikes midnight (OK, more like 9:00 p.m.) and the lupus takes over.

June 8, 6:55 p.m.

Slowly and gingerly, my husband helps me up the stairs. The swelling in my ankles and knees makes one flight feel like Mt. Everest. He has to help me undress and get ready for bed since I just don’t have the strength. I sat too long on the couch. I should have gone up when he told me to a half hour ago (he will love seeing he was right in print – OK, he can have this one). We make sure I have my doses of medication I take before bedtime, iPad, phone and anything else by my bedside. Things hurt and I’m mentally and physically done. My face is on fire from the maylar or “butterfly” rash currently spreading across my cheeks and nose, telltale signs of a lupus flare.

As I struggle to find a comfortable position to rest my weary body, my son comes in to read with me. This is one of the ways we’ve found to stay close as a family, despite the fact that on nights like this, my kids are tucking Mommy in. I know my daughter will be up in a bit and the three of us can have some nice snuggle time before their bedtime…if I can only keep my eyes open.

None of what’s happened tonight is a surprise. In fact, my husband and I planned for it when I set the date for this event back in September. As they say on the popular television show  “Once Upon a Time,” “Magic always comes with a price, deary.” Well, I may not live in Storybrook, the fictional town of the series, but I know that in the land of lupus, fibromyalgia and other chronic illnesses, a night out, fun event or even sometimes a trip to the food store (um…not so glamorous) can require hours to days of recovery.

We all know that as we age we remark that we can’t “bounce back” like we used to. When you live with chronic illness, forget bounce – think belly flop. We’re talking the kind you see at the neighborhood pool and everyone cringes in horror (yet video of it makes the finals of America’s Funniest Home Videos, go figure). The overwhelming fatigue can hit you like a ton of bricks stopping you in your tracks, the kind of fatigue that you’re still tired after you’ve woken up from 10 hours of sleep and need another nap.

Everyone has different ways in which their own body lets them know “I’m shutting you down for repairs” and eventually you learn to listen to it or end up face-planting somewhere (not pleasant, been there, face-planted there, usually involves a ride in a truck with very loud sirens to the “white coat hotel”). So, don’t be as stubborn as I was – learn to listen to your body and realize that rest and recovery is an essential part of your self-care.

Going to bed at 7:00 p.m. is not my ideal (we didn’t even have dessert!) but tonight, this was always part of the self-care plan. We knew not to plan anything for this afternoon or evening as “the price” for last night’s fun was the flare and crash tonight. Hopefully, by getting the rest and recovery time my body needs, I can, if not “bounce,” maybe land a little more gracefully. Just in case, we’ve kept tomorrow’s itinerary after school light as well. These are the lessons learned after too many “belly flops” and way too many “I told you sos” from my husband, who somehow can always spot when it’s a “quarter to midnight” way before I can.

Do I regret going out last night because of the pain I’m in today? Not one bit. I refuse to let these diseases stop me from living the fullest life I can. I refuse to let these diseases rob me and my family of any more amazing memories. I refuse to let these diseases hold me back professionally. But most of all, I refuse to let these diseases rob me of today’s joy because I fear tomorrow’s pain. Today is all we are promised, tomorrow is never a given. Now if you’ll excuse me, there’s an adorable little girl who just climbed into bed with me who needs some cuddles.

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When Someone Referred to Me as the 'Lazy Mom in the Shade'

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It always seems the school year goes slow, then without any warning summer arrives.

I used to dread summer.

Summers are hard for our family. With severe photosensitivity because of my lupus, I have a short window of being able to be outside. Before 9:00 a.m. and after 6:00 p.m., otherwise I am useless for at least a day or two. I spent the summers watching my kids from the window or the shade of a tree. The kids knew I wouldn’t be joining them on the playground or in the pool.

 

Then there was the day, while I was sitting in the shade, when one comment broke me. The “lazy mom.” It was only one comment. My heart hurt. My kids were 4 and 2. I knew they were safe, they knew I was always in view. My kids never complained.

So, why did I let one comment bother me? In all honesty…it was what I thought. I hadn’t dealt with what parenting with lupus would look like.

As the kids got older they never questioned why we went to the park at night or had limited play dates outside. They didn’t know any different.

woman's feet in the shade with just her toes peeking out into the sun

Parenting with lupus will have its challenges. There will be events I miss. Lots of naps. Sudden stays with friends. Visits in the hospital. Dad will cook via take-out. Summer days spent binging on TV. Challenges are what we face every day and have strengthened our family. We wouldn’t have become the people we are without challenges. We have to take the good with the bad. And maybe we appreciate the good a little more.

I don’t dread the summer as I once did. I’ve become quite content to sit under my umbrella. Watching from the shade, I’ve slowly embraced my limitations. I will never be afraid to speak up and share what having lupus is like to someone who is quick to judge. But, most of all, I no longer believe I’m the “lazy mom.”

This post originally appeared on Normal for Us.

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When Do You Tell the Person You're Dating You Have a Chronic Illness?

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A few years back, shortly after my lupus diagnosis, I met this guy who was a friend of a friend. At the time I didn’t think much of it. You meet new people every day, right? We ended up in the same friend group a few times and that’s when we started to talk.

Now at the time I was extremely reserved about telling anyone about my illness, aside from family and close friends. But as time went on and our friendship grew, it was pretty obvious we had feelings for each other. And that’s when I kind of started to freak out. You see, when I was diagnosed I was pretty much under the assumption that no guy could want someone like me with such an unpredictable illness. I thought I’d be too much of a gamble for someone. I wanted to tell him but I felt I missed my window – like I should have told him when I first started getting to know him. Now I was at the point where I was afraid if I was right, and I was too much of a gamble, it would hurt too much to face that. I let these feelings plague me for way too long.

 

It was only months after realizing our personalities didn’t quite mesh and we were better as friends that I told him. And you know what? The world didn’t go up in flames! It was just him casually asking how I was, and I was actually completely honest and told him I had been sick as a result of lupus, and actually this person was pretty awesome about it. It opened the way for a good conversation about what lupus is and what it meant for me and my future.

What have I learned from this? It’s not good to hide things like this that are such a part of who you are and affect your everyday life. I had built it up to be such a huge thing in my mind when it didn’t have to be! Had he reacted how I was afraid he would react, then I would have gotten over it and known for sure it was for the better. But sometimes people will surprise you.

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Thinkstock photo via ArthurHidden.

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To ER or Not to ER: That Is the Question When You Live With Chronic Illness

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Life with chronic illness means inevitable trips to the ER. We all hate it, loathe it, most will do anything to avoid it, but it’s a necessary evil. I’ve joked before that we can have an arm half falling off and will still play “Let’s Make a Deal” with our doctor, saying, “Are you sure I really have to go? Can’t I just take something in my arsenal of medicines?” In the end, you bundle up in the car (many of us have “to go” bags at the ready filled with everything we need – more about that later) and make the trip to our local ER, resigned that whatever we had planned for the day is now shot as this is never an “in and out” visit.

For me, living with lupus, fibromyalgia, asthma, hemiplegic migraines and a host of other “party favors” that have come along, I have been warned to “report any new, odd or troubling symptoms immediately” to my doctors. I’ll be honest folks; if I reported every new, odd or troubling thing my body did on a daily basis, I would never leave the hospital. Life in the Land of Lupus is never dull, so you learn to only notice the really big things.

Pain is constant, pain is chronic, pain is always there. Sometimes it’s worse, sometimes it’s better, but on average I live at about a “4” on the one-to-10 scale and I get used to it. If it spikes to a nine (I never call a “10”) I take something and deal, but if it’s in a “troublesome place,” a.k.a. chest or head, then I play the “Pains of the Past” game. Is this a familiar pain? Stabbing, throbbing, slicing, dull, radiating, constant or intermittent? If so, what did I do in the past? Repeat as necessary. If this is new, go directly to your local ER, do not pass go, do not collect $200 (but be ready to pay the copay as many now collect at the visit) and be ready to answer the above questions – over and over and over again.

 

Sadly, by this time, as a “frequent flier,” you are probably known at the ER already and some of the staff may even greet you as you come in (remember the greeting “NORM” as he walked into the “Cheers” bar – there are times in my fantasy life I feel like that at the pharmacy, ER, doctors’ offices, etc…). By this time, the ER is no longer an “exciting” experience for anyone involved.

In fact, because my children are young and need their dad, often they just drop me at the curb and I do this alone. It’s not ideal, but you do what you have to and I refuse to expose my kids to any more of the ugliness that is life with chronic illness. It has robbed them of too much of their precious childhood, so we try to make this as routine as possible. Does it truly suck to go through this alone most times? Yes. Having an advocate by your side makes all the difference in the hospital and having to be the patient and fight for yourself is not easy (that’s a whole other topic) but it’s reality for many of us who have kids, so you make do and put on your big girl panties (clean, always – remember what Mom always said about going to the hospital!) and soldier on.

Remember that “to go” bag I mentioned? Here’s where it comes in really handy. Life with chronic illness means a lot of time in waiting room. They call them waiting rooms for a reason! My handy-dandy list of items to have on hand:

1. Up-to-date list of medications! Most crucial. Every “professional patient” knows that trying to list all of your meds with dosages (over and over again) is exhausting and tough enough on a good day but when you are in a medical crisis it can truly save your life. Also include any medication allergies!

2. Up-to-date list of all medical conditions. Handy tip – there is an emergency button on iPhones that anyone can unlock without your passcode where you can load the crucial information.

3. List of doctors and their phone numbers. No doubt, like me, the “D”s in your phone are a “who’s who” of doctors and specialists. (My friends all know – need a doctor, ask Amanda! I’ve fired more doctors than most will see in a lifetime!) This is especially important when you have a “complex” medical history. That’s their favorite term for me: “medically complex.” Most ER docs will have little, if any experience dealing with your disease(s) and hopefully will consult your doctors.

4. Tablet/iPod (iPad, Kindle, etc…) – something you can use to read, entertain yourself, contact social media, connect to the outside world and distract yourself from the chaos around you. Ear phones are also key to drown out the noise and calm yourself when needed. Most hospitals have free wifi so if you have Netflix, Hulu or other services it’s a good time to binge on a fun, distracting show. Love to read? Great time to dive into a new series. That’s the nice part of the electronic component – finish your book at 3:00 a.m. while you’re waiting for the results of the CT scan? Go online and download the next one in no time. I swear, what did our chronically ill ancestors do? Poor souls forced to read the one book they came in with? How did they survive?

5. Your phone. You may be like me and not let anyone know when you’re at the ER or you may post it to your Facebook page – everyone has different ways of dealing with their chronic illness and no one way is right. For me, I don’t like to worry anyone until I have to. As one doctor said to me, “With you it’s either life-threatening or nothing – just a part of everything else – we can’t play around.” Um…OK?! So I can’t sound the panic alarm every time something goes wrong. I can’t do that to the people in my life nor do I need that amount of drama around me.

Usually I let a very few core people in on a “need to know” basis. They are my #squad, my village, my lupus support group – the people on whom I can, and do lean for my support in times of crisis. The people who don’t tell you how upset you being in this position makes them feel. They are the people who are there to listen to your fears and pain and listen, really listen, without judgment or preaching. They are the people in your life you know you can count on in good times and bad. Family isn’t always blood and I am blessed to have some incredible people in my life who are there for me and my husband and children day in and day out. But I digress. This is yet another topic for another post. So, bring your phone so you can keep in touch with those who need to know what’s going on.

6. Your chargers. With many electronics comes much battery. I even stick an extra battery charger in the bag just in case. My husband once got a seriously cool charger that has three different prongs for three different kinds of devices at a conference. I totally stole that sucker from him and love it for its versatility. (Maybe I should look into becoming a spokesperson for some of these companies – I could totally nail that. “Spending a lot of time in waiting rooms? Don’t let a dead iPhone battery hold you back. Try the new Super Battery 2000!”)

7. Magazine, sudoku or something non-electronic to read/do. Sometimes electronics do die and/or the light can bother your eyes.

8. Comfort items. Lip balm, eye drops, bottle of water, coloring book, soft blanket, anything that brings a little comfort to you in this very uncomfortable situation.

9. Patience and your sense of humor. My lupus support group and I like to joke about an ER bingo game of “common sights in your local ER,” such as a patient wandering the halls with the back of their gown open, giving everyone a “show,” or a patient screaming, “Help me, help me! Nurse, nurse!” at the top of their lungs nonstop. I’d love to hear yours in the comments!

The ER can be a few hours or sadly a day or two depending on how backed up things are. The gurney is ridiculously uncomfortable and things are understaffed and the staff is overworked. Complicated cases, like mine, take time and resources, two things that are in low supply in the ER. There’s often nothing “open and shut” and the doctors and nurses often know less about our diseases than we do. I’ve done more lupus awareness educating in the ER than in a month of lupus awareness posts. Occasionally, I’ve gotten a sympathetic nurse who has a friend or family member with lupus who understands and I don’t have to explain and that’s a blessing. Other than that, it’s a whole lot of “Wow, you’ve been through so much!” (tell me something I don’t know) and “You’ve got such a great attitude about things.”

Here’s my take on surviving the ER when you are a “professional patient.” You have no choice but to have a great attitude. Patients who are nasty and belligerent do not get better care. Because I’m usually on my own, I have to be my own advocate and willing to stand up for myself and my rights while being pleasant and polite. This is a hard line to walk, as you need to be strong yet sweet. You are the “good cop” and “bad cop” in one while lying in pain on the stretcher. You’re scared, alone and must keep your wits about you. Getting all emotional and unhinged will not help. You need that “calm place” to go, a way to distance and distract, that sense of off-kilter humor to keep you in a good mental place. At least that’s how I survive. So if the next time you’re in the ER and you hear someone shout “Bingo!” and giggle from the cubicle next to you, poke a head in and see if it’s me and say “hello.”

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Thinkstock photo via ddea.

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How My Face Changed Over 3 Years While on Steroids for Lupus

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This is a comparison of my face from 2015, 2016 and 2017, all from around the same time of the year:

In other words, pre-diagnosis of lupus, when I was on about 40 mg of Prednisolone and nowadays when I’m on 10 mg.

I like looking at the contrast between non-moon face, utter moon face and nearly gone moon face to remind myself that it wasn’t permanent.

I used to think I wasn’t very vain or fixated with my physical appearance. Then I realized it was because I’ve always been more or less comfortable with the way I looked, and when that was taken away from me by Prednisolone my self-esteem just crashed. It’s silly to be so preoccupied with how my face looked different – but being unable to recognize myself in photos was a shock, and when you’re only 22 and you feel like you’ve already lived your best looking days, it can feel like a huge loss.

 

Chronic illness can take away a lot of things – self-esteem, carefree days, quality of life, as well as your health. It can also change things such as your physical appearance, way of life and even goals and ambitions. The impact isn’t just on your body in terms of organs or symptoms, but it has an impact on how you see life and yourself through a different lens. Even when you appear normal to others. And not being able to recognize your own face or feeling like it’s a face that isn’t yours adds to this. Your sense of personal identity changes.

So I increased my use of make-up, got extra layers in my hair, avoided contact lenses so my glasses could frame my face, felt silly getting dressed up feeling like I shouldn’t have bothered, avoided guys so I didn’t fall into the f***boy trap when I was feeling low, admired how my more confident friends could just expect guys to like them and only took selfies with filters. When one random classmate once told me how beautiful he thought I was, I nearly cried. Then I got angry with myself for how grateful I was to hear that from a random classmate, when it should be me telling myself that. I also had to deal with being unable to fit into some clothes and losing what little muscle mass I had.

Anyone on it can tell you – Prednisolone is a bitch.

I didn’t have any sudden revelation or overwhelming acceptance of who I am, sad to say. But hey, maybe this can just be a friendly reminder to myself and anyone else struggling with Prednisolone that it may not be permanent. And all those frustrating feelings you have, the times you want to cry – or have cried – we’ve all been there. There is a huge community of people who understand completely.

It’s hard for anyone when we live in a world that is image obsessed. But it helps to remember that your personality will always be awesome because you’re a fighter, a listener and a sympathizer.

This post originally appeared on Inside a Mind.

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Doctors Need to Be More Open to Looking for Zebras When They Hear Hooves

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Oh joy! Another odd, strange, bizarre symptom to add to the collection has reared its ugly head. You know what I needed was another “thing” for my battalion of doctors to test for. Something that “doesn’t make sense,” “doesn’t follow conventional rules” – we who live with autoimmune diseases like lupus are so used to this it’s like an old friend. We live in the world of the unknown.

There is an old adage in medical school that tells doctors when they hear hooves to look for horses – not zebras; in other words, look for the most common, not the exotic. Unfortunately,we lupies tend to live in the Sahara with the zebras and doctors who aren’t willing to look past the hoofprints of the horses are frustrating and exhausting for us. In my early years, I lived in the uncertain world of pre-diagnosis, a miserable 15 years of test after test, a parade of doctors, some more willing to embrace the exotic and others unwilling or unable to remove the blinders that only horses existed. I can’t even get into the damage those doctors did to my self-esteem and my health (that’s a whole other post!). Just know I am forever grateful for the amazing, brilliant, compassionate team I have assembled now.

Even with my amazing team of doctors, the thought of dealing with another “party favor” from either the lupus or fibromyalgia or Hashimoto’s thyroiditis or diabetes or any of the host of medications ingested to treat the symptoms of all of these (and the medications taken for the complications caused by these medications!) is daunting. I’ve already done the “do I really need to report this?” debate as all of us with chronic illness learn to do. I swear, most of us could have a limb falling off and we’d do a pro/con list about going to the ER. Then you do the “which doctor do I report this to?” question, which is never easy. Sometimes it’s easy and clearly easy to trace back to a new medicine or organ system (involves breathing? call the pulmonologist!). Other times it involves multiple systems or defies logic and there’s no clear cut answer.

 

Sometimes your doctors will give you a “flowchart” of whom to call. Other times they play “pass the patient” and bounce you back and forth. This time I spent time on the phone with nurses, receptionists and various doctors’ personnel (have I mentioned yet how important it is to be on a first name basis with these people?) from two different doctors’ offices only to be sent to my primary care doctor who immediately said I should have been at the specialist’s office. She’s an amazing, brilliant clinician who always has my back and gets as frustrated as I do when this happens. And this happens – a lot. Until you find the right specialists who aren’t afraid to ask the tough questions, look a little deeper than the surface and spend more than the 15 minutes the computer has squeezed you in for, you end up feeling like a tennis ball, passed back and forth from doctor to doctor. (Incidentally, my favorite quote from my primary care doctor is: “Amanda, I dream of the day you come in with strep throat or a sinus infection – just something easy I can fix for you!” I love this lady! No matter how hard and murky things get, she keeps fighting for me.)

I once had a neurologist who was great with my migraines but once things progressed into the more murky world of autoimmune territory he wasn’t the right fit anymore as he wasn’t willing/able to look past the simple answer, even when it didn’t fit. When I called with horrible pins and needles and shooting pains in my feet and up my legs he insisted I didn’t need to see him – I needed a dermatologist, as this was clearly a rash. Um… Looking down, I clearly saw no rash; however, a visit to my rheumatologist confirmed it looked like we were now dealing with neuropathy, a neurological complication from lupus and other autoimmune diseases. Once I finally convinced this neurologist to see me and he saw no rash (um, hello, vision is not one of my issues here?), he reluctantly agreed this was neuropathy (tell me something I didn’t know already). Needless to say, this was my last appointment with him.

As I go into the unknown tomorrow, here are a few things I’ve learned (some the really hard way!) over 30 years of dealing with the weird, strange and odd world of symptoms that don’t make sense.

1. Go in with no expectations. I used to go in expecting the doctor to have all of the answers, only to be anywhere from upset to devastated to find out further testing/another doctor/”wait and see” was going to be the answer. When you go in with no expectations, you can’t be upset as you don’t get your hopes up – you just go in and listen.

2. Do not Google your symptoms, no matter how tempted you may be. No matter how benign it may be, you may end up being convinced you have weeks to live. Before you start making your will and planning on finally telling off your boss, remember that if you ever want any reliable information about your disease, look for ending extensions like .edu, .org or .gov (best advice from my beloved rheumy). Anyone can write and publish under .com (just look – they are publishing my words!) Personally, I like the Mayo Clinic, the National Institute of Health and, for lupus, the Lupus Foundation of America.

3. Write down everything you need to report, including a timeline of this newest problem. In the heat of the moment, you are apt to forget something and don’t want to waste valuable time fumbling with your phone calendar to figure out exactly when things started. This is especially important for those of us impacted by lupus/fibromyalgia fog, when there are times we are lucky if we can remember our name, let alone specifically what day or in what order things happened.

4. Keep calm and know this too shall pass and more will come. Yes, life in the land of lupus is never dull. You can’t get all excited and panic every time something odd or weird pops up. Seriously, you won’t make it through the first few years of strangeness if you ring the alarm bell every time your body does something bizarre. I’ve developed a kind of odd, detached, fascinating, narrating-a-wilderness-documentary-special approach to my own body. (“Look, the lupie is showing her bold red markings across the cheeks and nose. The blazing hot to the touch rash is common amongst her kind and marks her as a member of her tribe. Was it the brief walk from her place of employment to her car and the exposure to the bright day sun that caused this today? Perhaps the lupie should not have stopped to exchange pleasantries with her coworker, a non-lupie, who did not have the same UV concerns. Stay tuned to see if this will produce a full-blown flare or blow over by the morning.”)

As for me, I go into tomorrow’s appointments knowing it’s just the latest chapter in this saga that is “Life With Lupus.” There are no easy answers when it comes to dealing with chronic illness, especially autoimmune illnesses like lupus. But it won’t stop me and my team of intrepid doctors from continuing to look. And I’m forever grateful for those doctors who know that while not all hoofbeats are horses, we lupies are sometimes zebras, ostriches, meerkats and half the cast of “The Lion King.”

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Thinkstock photo via LAByrne.

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