How a Snapchat Filter Helped Me Feel More ‘Normal’ on a Flare Day

I was reflecting on my chronic pain/illness today, as I often do during flare days.

I rolled out of bed this morning, and from the moment I had to struggle and brace myself with my cane just to stand up and get out of bed because my knees hurt so bad, I knew this day was not going to be a good one.

I changed and fed our daughter, and half-heartedly ate a bagel, not because I was hungry, but because I had to in order to take my medication.

Nothing sounded appetizing. Not even my favorite foods and drinks. I was eating solely for sustenance. Because I was supposed to.

I was still in my pajamas, and hadn’t even attempted to brush my hair.

My daughter dozed off in my lap, and I began to play on my phone. I opened up Snapchat for the first time in ages, and winced as the front camera opened, and I saw my haggard appearance. As always, I looked tired. So tired. And so sick.

I was rudely reminded, as I was every time I looked into the mirror, of the pounds I had packed on due to my gastrointestinal issues along with my inability to exercise without excruciating pain and subluxations.

“Just get some sun!” people would tell me. “If you go outside more, you’ll look and feel better!”

As if sun would somehow keep my joints from subluxing, or keep my food intolerance-related gastrointestinal issues at bay. As if going outside would suddenly take away my bouts of tachycardia and syncope.

I stared blankly at the screen. I had no idea why I thought taking a selfie was a good idea. I very rarely take them for this exact reason.

selfie of a woman wearing glasses

Then I started flipping through the filters. Maybe one of them would at least make me smile.

And you know what? They did.

I took selfie after selfie, trying my hardest not to giggle too loudly and wake up my daughter.

selfie of a woman with a flower crown filter from snapchat

As I flipped through the photos I took, I wondered if I should post any of them on Facebook.

Part of me wanted to. The other part of me scoffed at the idea, reminding myself of all the times I had seen the blistering condemnations of people who were “so extra” with their flower crowns, and rainbow vomit. Of the “vain, narcissistic attention-seekers.” The ones that people made fun of for “always taking a million selfies.”

And then I realized that I didn’t care what people thought. And I decided to post a photo or two for me. To remind me of the day when, even though I didn’t have the energy to actually put on makeup and brush my hair, at least it looked like I did.

To remind me of the time that I actually didn’t hate a picture of myself. The time I felt pretty. And to remind me that this is me. Flawed and broken, but still alive and fighting.

It’s OK if you think my flower crown is over the top. I do too. But it helped me feel more “normal” today. And that, to me, is well worth being a little bit extra.

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When People Hear About My Illnesses and Ask, ‘How Do You Do It?’

“How do you do it?” is one of the major questions I receive from people when they find out about all my health problems, as well as those who see me continuing to battle on a daily basis. I never really know how to give a simple answer to that question. I guess it is really difficult for someone who is healthy to understand how a sick person functions. They try to imagine how their life would be if they had the illnesses I have, but it is impossible for them to do so. I’ve had friends watch me go through so much in my nine year battle with chronic health problems. They have been there through the good and the bad bits, but the reality is that the majority of people do not stick around long enough to see that I am a person just like everyone else.

I have come across the people who try to be polite about it, but what most are really trying to say is they want nothing to do with you because your life brings too much drama due to being sick.

You then have the people who start of like the perfect person. They are supportive, caring, kind and listen to you when you are having ups and downs. After a while, though, this wears off and you almost see their true colors underneath. They talk about you behind your back to other people. They tell about how they think you’re “a drama queen,” how you “attention-seek,” and how “over-dramatic” you are. Some even go as far as to question whether or not you are ill when you say you are. These people do not intentionally set out to hurt you, but for the most part you end up getting hurt.

Nobody should have to lose someone important to them due to something out with their control. However, as the years have gone by, I’ve lost various people who at one point meant everything to me. I have come to think that losing people is a part of living life with a chronic illness.

It is not, however, always a negative situation. Through everything I have come to realize who should truly matter to me. The people who have stuck by me through everything, have never let chronic illness get in the way and have never let me down. They never judge me even though sometimes I give them every right to and they never think I am over-exaggerating or being dramatic when I am having a bad time. I have very few people in my life whom I can truly rely on through everything. I do not blame people for not being able to handle my health issues. After all, it is very out of the ordinary and not something you really want to deal with all the time.

So going back to my question of, “How do you do it?” I guess my answer is a simple one. I just have to do it. There is no easy solution or easy way to explain it, other than I have to get through things. I have endured over nine years of chronic health problems and I have had to come to terms with a lot of things. Some of them are things that no young adult should have to think about such as:

“When is my next hospital admission?”

“What side effects could this medication give me?”

“Could this condition prove fatal?”

Others are limitations which have become apparent over the years. Things such as:

“I cannot pass my exams this year.”

“I am struggling to walk up the stairs without gasping for breath.”

“I cannot eat that because it may contain nuts.”

Sometimes it does seem like a never-ending struggle that never gets any easier, but there are many positives I have come across regarding my battle.

I feel I am more motivated than I would have been had I not gotten ill. I was so much more determined to pass my exams and to get into university when I started to struggle with my health than when I was healthy. I never let anything get in the way of my education. It did not matter that I had to repeat my last year of school or attend a seven week long summer school whilst most other people my age were out partying and galavanting away on holiday somewhere nice. I achieved something that so many thought I would not – I got to university.

A nine photo collage of the writer showing different pictures during her time being ill.

 

Although it was more short-lived than I’d initially expected, I still gained a lot of great experiences and life skills from my time spent at university. After an initial first year and failing to complete my yearly exams due to my health and hospital admissions, I made the decision to repeat my first year in the hopes of passing the year. Unfortunately, after a second attempt at first year I was still struggling a great deal, and again hadn’t managed to complete the exams. It was then I made the heartbreaking decision to withdraw from my full-time university course I’d worked excessively hard to get into. I felt like a complete failure and like I’d let myself down so much

A short while later, I came across “The Open University.” It’s a university which provides part-time courses via distance learning. (Most or all of the learning is done via textbooks and/or online aids). I decided to apply for a part-time study course and have been a distance learning part-time student since. Although it was really hard having to accept withdrawing from full-time education, it’s also been somewhat of a blessing in disguise as distance learning has proved to work a lot better for me. I feel much more motivated and now have the ability to catch up any work I may have missed. Yes, it has proved no easy task, and yes, I still have moments where it seems like I just want to give up – but I feel more determined than I have ever been. I want to do well and pass my university degree.

I live for today. Before my health issues truly started, despite being young, I tended to dwell upon the past a lot. I would focus on the bad things that had happened and often wondered if things would get better. Now things are so different. I think about the past, but it is no longer the bane of my life. I live each day at a time. Today could be horrible and I could struggle through, but the reality that so many do not realize is that tomorrow could be so much better – it could be the happiest day of your life. I think about the things that my future may hold, but for the most part, I have hope for tomorrow. I always try to smile everyday, even if I am at the lowest of the low points and feeling like giving up. I think about the positive things in life such as my friends, my boyfriend, my family and the things I have to look forward to. These all help me get through the dark times.

In a lot of ways I am grateful for my health problems. They have caused so much pain, anguish and hurt in my life, as well as those around me. However, they have also brought hope. They have made me value the little things in life such as getting up in the morning, putting on clothes, cooking for myself – as well as the big things in life, such as finishing high school and moving out for the first time.

Like anyone I cannot predict the future. I do not know what will happen tomorrow, let alone in years to come. What I do know is I will continue to be forever grateful for those people who make my life even that little bit easier. The people who make me smile when I’m at my lowest point, who bring light at the darkest of moments and who just generally make life a better place to be. Life should not be about having lots of money or having the best job. It should be about being the best person you truly can be, as well as surrounding yourself with people who bring out the best in you.

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What It Felt Like to Bring My Child Home From the NICU After Birth

A year ago today, we headed home after being in the hospital for six days after our son, Theo was born. The nurse walked us to the door and then we had to wait for my husband, Turner. I remember another couple coming out with their new baby, and I asked her birthday and they said two days ago — code for “we weren’t in the NICU.” They seemed tired and honestly, not that happy.

I remember looking over at Theo and thinking we know perspective in a way most parents don’t learn in the first days, or maybe ever. We experienced what might be the hardest start to parenthood and Earth-hood (for Theo) that’s possible.

I felt the full throttle of emotions, but I remember trying to soak in the feeling of relief and pride. That was my first lesson in mothering Theo, as much as my mind traveled when I looked at this other family and what they “had.” When I did that, I lost the feeling, a feeling we had earned and had hoped for. I let it slip away by not fully seeing my baby and my story.

Waiting in that lobby and the first drive home both evoke similar emotions to much of my experience this year as a parent. When I think Theo isn’t listening, doesn’t know me, or doesn’t understand, he gives me some sign that he absolutely does.

He shows me time and time again at his own pace, in his own way, and with his own manual that he is right there.

But if we worry too much about what he isn’t, how our path stands up against others, or look at it all from the wrong angle, we won’t find him. We won’t see Theo.

I go back to that moment and treasure it, even with its heartache and even in the times it feels like a fight to find the peace with it. I feel the wind coming in with the windows down riding alongside Theo in the backseat. As we neared home, I felt the heartache again — the worry, the confusion. Just like so many times this year, even in really beautiful moments. It’s fleeting, these feelings of gratitude, hope, and pride. They can be easily overshadowed by the magnitude of everything else.

So, I’m remembering this day, this drive, this simple moment where for the first time, we were a family of three driving home and just being together.

Theo, the author's son sleeping in a carseat with a stuffed animal

(Happy Birthday Theodore Lewis Stusick Binkley. Thank you for stretching our minds, filling our hearts, and for being a little human who takes marching to the beat of his own drum to the next level. We love you.)

Follow this journey on Instagram at Theo’s Village

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How, When and Why I Sometimes Take Risks With Chronic Illness

I’m sitting on the couch trying to patiently wait as antibiotics fight off the strep infection my immune system is incapable of handling. There is nothing left on Netflix to tickle my interest. I am so bored.

To alleviate the boredom, I reach for my phone to check out social media and see what’s going on in the lives of family and friends. Mistake. My neighbors have posted pictures of their fun in Vegas. Great. Now I’m bored and jealous. Wonderful combination.

I’m not just jealous of my neighbors. Nope. My daughter is out on a hike with her friends enjoying the sunshine and working on her photography skills. My husband is in another state for a job he loves and making plans to see our grandchild without me. (Raspberry!)

You might be thinking that I shouldn’t be jealous of him and his job. I get to sit on the couch and relax. Except, after this strep infection passes, I still hardly get off the couch or get out of bed. The most activity I get on your average day is a gentle walk. On a good day I can make dinner too.

You see, I’m also jealous of average people who can do things without having to weigh all the risks and benefits like going to the beach without worrying about the sun, or spending a couple hours at the mall shopping without wondering if they’ll have the energy to get ready for bed later. Thanks to chronic illnesses and chronic pain, I can’t do anything without very careful consideration. And I mean anything.

But sometimes life demands living. Sometimes risk assessments must be pushed aside and something else must be experienced. But this must be planned very carefully.

For example, last fall for my birthday my husband and my daughter decided that for the sake of my emotional well-being I needed a day off from being sick. We all planned carefully for my carefree day. I went out without a hat. I took the time to feel the sun on my face. After a gentle massage at a spa, my husband took me to a nice restaurant on the coast. We were there on the patio for hours. We ordered what we wanted from the menu and had alcoholic drinks. We had dessert.

photos of a man and woman sitting at a table overlooking the ocean

Those things are risky? Yes. The sun easily triggers flares for me. Alcoholic beverages cause me intestinal problems and are a no-no because of my meds and already scarred liver thanks to lupus. Being out for hours can mean being in bed for days. For my birthday, I was throwing caution to the wind.

However, we prepared. We planned what meds I would and would not take that day for safety and to alleviate pain. We planned extra sleep the night before and extra quiet days following. We made sure food in the days leading up to my birthday and after were extra gentle on my system. Making and carrying out such plans are a nuisance. So what did I gain?

I gained a day where I truly felt alive. A simple day for most is an amazing experience for me. I sat there on that patio overlooking the ocean, observing a bee investigating the flowers before me, feeling the sun set to my right, enjoying the company of my love to my left, and knowing every sight, every sound, every smell, and every taste was more vibrant to me than most of the other people there.

That’s living…

When was the last time the world around you was vibrant? Was it in Vegas? Was it at the beach? Was it in a garden? What risks did you take to experience it? Was it worth it?

I’m still sitting here on the couch waiting for this strep to pass. I’m not bored and I’m not jealous. I’m grateful for past days and days to come.

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Letting My ‘Mask’ Slip to Show People the Real Me, Chronic Illness and All

Yesterday I shared a Facebook memory. It was a picture of myself from a year previous. A picture of “A Bad Day.” Around that time I was quite heavily into my makeup art so I would often share pictures of my makeup, pictures of myself looking very shiny and put together. However, those were the only pictures I would share when in reality they only accounted for a brief snapshot of who I was as a person. In order to get that perfect selfie I would often take in excess of one hundred pictures, looking for that one great shot where I was happy with how I looked. Then I’d put that picture through an editing process until I was totally comfortable with it, comfortable enough to show my face to the world.

Some may ask, “why do that?”

I’ve had my mental health issues called into question before as a result of my podium dancing and my excessive selfies. How could I possibly have anxiety if I put myself out there like that? It’s a simple question but it doesn’t have a simple answer. Before my health got bad I could put myself up on stage and dance in front of hundreds of people. I was up on a pedestal and not actually mingling with the masses. I got to dance and do something I loved without having to really talk to people that much. Once I was up there the individual people who terrified me so much just became a faceless crowd. They weren’t there to see me, I was just there to help create an atmosphere, to get people moving.

And I loved it.

But in between sets when I had to actually deal with the general public I was an anxious mess. The same goes for my makeup looks and selfies. I have always taken pride in my creativity and my makeup is a part of that. The selfies weren’t showing me… they were showing my art. It just happened to be on my face. It was a mask. A mask that allowed me to feel comfortable showing my face in public. But that isn’t reality. It wasn’t “me.”

One day I decided I wanted to show people what was behind that mask. I became aware that I looked at the gloriously beautiful faces of my friends in the makeup world and thought, “they always have it together, look how fantastic they look!” and I judged myself harshly. But some of those people also deal with chronic illness, just like I do, so they must have those “bad days” just like I do. Why do I judge myself so negatively? People probably see my painstakingly created selfies and think, “she always has it together, look how fantastic she looks!” just like I do when I see the profiles of others.

So I decided to let my mask slip for once and show people the real me. This is the face of chronic pain, fatigue and mental health problems. This is the face of depression. This is the face of fibromyalgia. This is the face of a human being who is barely holding on.

side by side photos of a woman. in the left photo she's wrapped in a blanket with her hair up and no makeup. in the right photo she is wearing a lot of makeup

I wanted people to see the reality behind the selfies. I’m not ashamed of who I am. Sometimes I feel like I should be, but then I realize I’m only human. I’m no different from anybody else. Everyone who puts themselves out there on social media only puts out the version of themselves they want everyone to see.

Always remember that.

You can look at someone’s Instagram or Facebook profile and see their perfect pictures, their smiling families and their food and homes that look like they’re straight out of a magazine… but that is not their whole reality. That is reality with a filter or Photoshop. That is reality through rose-tinted glasses. That is the one picture taken from the hundred or so that have been sifted through, scrutinized, edited and then posted when the person is finally happy with it.

So next time you see someone’s awesome selfies and judge yourself unfairly, remember my face behind the mask. More importantly, next time you are one of those people having a bad day, remember that I’ve been there and I understand. A bad day is just that. A bad day. It is not forever, and it is not all that you are. We are made up of our good days, our bad days, those perfect pictures and the 99 that didn’t make it. People are complex and beautiful and ugly and tired… and that’s OK.

You are more than that. You are enough. You are human and you’re allowed a bad day. You’re allowed to not be perfect. You’re allowed to feel like a mess. Be kind to yourself and let yourself be flawed.

And above all else remember this… I’ve got you, and you will be OK.

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Steve Harvey Defends Wife Marjorie Harvey for Using R-Word in Instagram Video

On Saturday, March 31, Marjorie Harvey, Steve Harvey’s wife, posted an Instagram video of the two preparing beets to juice. Marjorie starts the video, which has over 400,000 views, by stating that Steve thinks she’s “retarded” because she can’t cut beets properly.

Too early in the morning for this! ???? I just want to make some fresh juice

A post shared by Marjorie Harvey (@marjorie_harvey) on

Fans immediately commented on the video, criticizing her use of the R-word, a derogatory slur typically aimed at people with intellectual disabilities. People often use it to negatively describe a situation or another person (disabled or not).

Steve jumped to his wife’s defense in the comments of the video. He asked what people were “trippin bout.” He then asked, “it’s a word ain’t it?” This implies the fact that a word’s existence makes it OK to use, despite it insulting other marginalized groups of people.

“As a mom to a beautiful daughter with Down Syndrome, I find it highly offensive that, one, the word was used and, two, that you, Steve Harvey, would defend her,” one Instagram user commented. “Why is it acceptable for that word to be used, but not acceptable for other words to be used? People with disabilities are people and deserve to be defended and respected. Shameful…why not apologize, learn from it, and move on!? Completely disrespectful and disgusting!”

Harvey said his wife was talking about herself and not someone’s baby, which was supposed to make it OK.

Steve Harvey's response to Marjorie Harvey's Instagram Post

Some fans also defended the couple and said people who had a problem with it should just unfollow the page. Some said the word was used in their home and not in public, so it was OK.

“Now we have to watch what we say in our own homes,” an Instagram user commented. “This lady was speaking about herself to her husband. I think people are needing something to talk about. If you didn’t like what she said stop following her.”

Others said the Instagram post made it no longer private, so the point that it was in their home was null, and even though Marjorie used the word to describe herself, it was still insulting.

“I see that a lot of people have supported you and said that there’s nothing wrong with what you said,” an Instagram user commented. “Unfortunately, that’s not true. There are people like me, my family, my daughter who has Down syndrome, who are all hurt by the implication you made. By using the R word in that way, it infers that people with cognitive disabilities are less than or dumb. Please consider taking the time to either personally or publicly reconsider using a word that hurts so many. I’m not saying that was your intent, but when know better, we should do better…right?”

The medical term “mental retardation” was first used in 1914, according to Merriam-Webster. It was originally used to describe those with intellectual disabilities. The term was eventually replaced with “intellectual disability” because people began using “retarded” as a slur to insult and describe people as less than those without an intellectual disability.

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What I Learned After Going From ‘Supermom’ to ‘Super Sick Mom’

Shortly after I became a mama for the first time in September 1999, it quickly became obvious that I was going to be “that mom.” That mom who kept a spotless house, cooked a big meal every night and still spent quality time with her family. When my sons were 3 and 5, I worked full-time, went to school part-time and had a husband who worked 12-16 hour shifts. However, we still made all sports practices and games, completed all homework, ate a big meal every night and had a neat and tidy home. I packed lunches every day and they contained homemade cakes and cookies, not processed stuff. By all outward appearances I was supermom.

However, as my kids approached upper elementary school, I noticed that it was harder for me to do everything I’d always done. I was slipping, buying processed snacks and having hot dogs for supper. Another year or two passed and the feelings of exhaustion were accompanied by pain. I hurt everywhere. Additionally, I had a kind of fatigue like I’d never felt. Of course, I went on with my routine and didn’t dare let anyone know how I was really feeling. How could supermom be sick and tired?

One night, when I thought my husband was asleep, I buried my face in my pillow and had the ugly cry. The cry that leaves you gasping for air, coughing and looking like you’ve been hunting crystal skulls with Indiana Jones. But my husband wasn’t asleep; he heard every second of me trying to cry away the pain and exhaustion that followed me day after day. I told him about everything: the fatigue, the pain, the days showering felt like I was being pelted by glass shards and the nights when every inch of my body that touched the sheets hurt.

Two days later I was in a doctor’s office being tested for every disease, disorder and syndrome known to man. About two weeks later the diagnosis was in: fibromyalgia. “It can be treated, but not cured,” said the doctor. “Our goal will be to get your pain level to a four on a scale of one to 10 but most of my patients don’t get much lower than a six.”

Six?!?!? So basically just hurt every day and there’s nothing they can do? Walk around feeling like I’m trudging through quicksand or wet concrete and keep that smile on. You might get to a pain level of six one day?! I was frustrated, dejected and heartbroken. What was I supposed to do? I had children to take care of, ballgames to attend, a full-time job, church responsibilities and certainly not time for chronic illness!

“I can do a lot of stuff,” my husband said. “And the kids are old enough to help out. You have to realize you can’t do everything by yourself. Let us help.” I couldn’t even speak; as tears slowly filled my eyes, finally overflowing onto my cheeks all I could think of is what a “loser” mom I’d be, unable to perform all of my duties.

For more than a year, I pushed myself and my body, determined not to become the “lazy” mom, the “loser” mom – or even the “normal” mom. Eventually it all caught up with me and I collapsed at work. I was mentally, physically and emotionally drained. For two days, I stayed in bed and my family took care of me. And guess what? It was OK. They actually enjoyed the opportunity to do things for me after my years of doing things for them. (OK, maybe enjoyed is a bit of a stretch… but they definitely didn’t mind.)

mother smiling with her two sons

That was the beginning of my revelation that being a mom didn’t mean I had to do everything, or even almost everything. Our family was like a community and, depending on how each of us felt, we all did our parts. I also learned that if the kids wanted to watch a movie and I hadn’t swept the floor, it was OK. Being in pain so much of the time really helped me enjoy every second of quality time I could get.

Looking back, I don’t regret being Supermom those years. Certainly that isn’t what caused my illness. I think every stage of life is meant to teach us something. My Supermom years taught me that I was strong and could do whatever needed to be done.

My chronic years are teaching me that it’s OK to take help – or even ask for it – when it’s needed.

Full Source: disableddatingclub.com