Mother's handbag with items to care for child

What’s it like to be done having children? You know what I’m talking about. You’ve had one or two, or even 10 children. What does it feel like to voluntarily say to your partner, “I believe we’ve hit the amount we wanted, let’s move on to the next part of our lives?” I myself, wasn’t given that voluntary option.

Hi, my name is Beverly, I’m 23 years old, and I am done having kids. Why so young? I’m 23 years old, and I have lupus.

Before we get in too deep, a little bit of background. I am the mother of the most wonderful and sweet 4 year old. He’s my partner in crime, my mini me, and my one true love in this world of chaos. He has my temper, and his father’s compassionate soul. He plays football, and he loves his dog. He is my only child. He will also be my last.

My pregnancy with this sweet little boy was one of the hardest things I have ever done. Most people talk about pregnancy like it was the most amazing thing they have ever experienced. I wish I could say that about my own. I was tired, but not just your average tired. I had what most people who struggle with lupus that’s called “fatigue.”

Nothing can prepare you for fatigue when you have a chronic illness. And nothing can prepare you for the amount of magnification this fatigue endures when you put added stress on your body, such as pregnancy. On top of fatigue, my body hurt. I was swollen. My son had a two vessel cord and a choroid plexus cyst on his brain at 16 weeks gestation. I saw multiple high risk doctors in addition to my regular OBGYN. I went into early labor at 34 weeks. And towards the end of my pregnancy, I dealt with high blood pressure, a precursor to preeclampsia.

The writer's young son and husband sitting together, eating food at a sports game.

Then came the day my son was born, with 11 hours of labor, and pure and raw exhaustion that I can’t even begin to describe. I was so incredibly thankful to have my husband and family by my side when he was born, and the days after. I can fully admit that, after he was born, I suffered greatly from postpartum depression. After talking with my doctor, I was put on anti-depressants, and the sun finally began to shine again.

Now, when I was pregnant with my son, I had two names picked out. One for a girl, and one for a boy. Obviously, we chose the boy name, and put the girl name on the back burner for our future child.

Recently, I’ve had a significant amount of problems with my body and my illness. These problems have lead my husband and I to reluctantly decide to no longer have any more kids. We didn’t come to this decision easily, and most of the time I feel like this decision wasn’t really made by me, but was made by lupus. Which is why when I hear, “Oh, he needs a brother and sister!” or, “You can’t have just one child, he’ll be spoiled,” my heart breaks, sometimes borderline shatters.

No one gives a shred of validity to my reasons for not wanting to have more. No one listens when I say that we didn’t choose to be done. My body chose. The most recent incident, being that someone very dear and close to me, found out she was having a girl. And she chose to use the name I had saved for our girl. When I heard this, I felt like my entire world fell apart. I’m not usually one to be “triggered,” but this pushed me over the edge. Not because she “stole” my name, but because I will never get to use that name, and it was just a harsh reminder of the decision I’ve been forced to make.

Don’t get me wrong, I love my son, and I have no problem raising him as an only child. I myself am and only child and I turned out alright. I’m just over the harsh reminders. And I’m over people being brash about me, a woman in her prime, not having another heir to my metaphorical throne. So the next time you see a women around my age, with just one child, I beg of you to hesitate asking her when she will have more children. There could be multiple reasons why she doesn’t have or won’t have another one. She could be battling fertility issues, she could be a single mom with no time for another one. Heck, she could even be struggling with the same illness that I have. Whatever her reason, it is none of your business. Just support her and the child she does have. Like me, that one child is her entire world, and she probably fought tooth and nail, day and night, to have what she does have.

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Thinkstock Image By: Mukhina1

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Many items of clothing you already own may offer some protection from the sun’s damaging ultraviolet (UV) rays. Basically, the tighter the weave, the greater the protection. The color makes a difference as well: Darker colors and bright colors tend to absorb more UV radiation than lighter colors.

You can also add protection to your existing clothing with special dyes and other laundry additives that help keep UV rays from penetrating the fabric.

Broad-brimmed hats — with a brim at least three to four inches all the way around — and hats with a neck flap offer more protection than hats with smaller brims or caps with only a brim in front.

Clothing and hats made from special sun-protective fabrics are available at sporting-goods stores and from sun protective clothing companies online.

Although no federal agency regulates sun protective garments (the way the Food and Drug Administration regulates sunscreen), there are nationally recognized standards that manufacturers follow on a voluntary basis.

Clothing designed to be sun-protective will be labeled with a UPF (“ultraviolet protection factor”) number. The amount of UV radiation that can penetrate the garment is based on the fabric’s fiber content, weight, color, and construction. For example, a shirt with a UPF of 50 allows just 1/50th of the sun’s UV rays to reach your skin. For the most effective sun protection, look for clothing with a UPF of at least 30. But be aware that the UV protection greatly diminishes when the fabric becomes wet from sweating or swimming.

Take care to purchase the right size, especially elastic items such as leggings — overstretching the fabric will lower the UPF rating.

For better protection choose long-sleeve shirts, long pants, and full-length skirts (as well as broad-brim hats). These items, as well as full-coverage stylish swim clothing, are available at many sporting goods stores, as well as from online merchants.

Sun-protective scarves, wraps, and gloves are readily available in numerous colors and styles.

Sunglasses labeled as “UVA/UVB rating of 100 percent” will give the most protection to your eyelid skin. Choose a large, wraparound-style frame to cover the entire eye area — especially when you’re around water or sand, since a lot of the UV comes from reflected light.

This blog was originally published on Lupus Foundation of America.

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Thinkstock photo by levkr


As anyone whose life was struck with a sudden, debilitating and permanent illness can attest, there are several stages of coming to terms with life-altering implications of one’s disease. More often than not, its initial onset stirs a period of absolute confusion and a profound sense of aloneness. What is going on with my body? Why was I fine one day and flattened the next? Why is this persisting? When will the pain stop? Why is the world passing me by outside my window while all I can do is lay on the couch? Why doesn’t anyone understand what I’m going through?

 

For me, systemic lupus upended my busy life at the able-bodied age of 41. Having worked as a hairdresser for 17 years, I’d finally advanced my career to the point of owning and operating a successful hair salon in Philadelphia. One day I was working 11-hour days, on my feet. The next, I could not even stand up. A lot of people with lupus can relate to its onset hitting them like a Mac truck, but, when it happened to me, I didn’t know a lot of people with lupus. Not a one. In fact, like many lupus patients, I’d not even had a diagnosis for this awful mystery illness that was going on and on and on. And I was alone.

The day I went from standing to sitting is emblazoned in my mind. I’ll bet, if I ask my tens of thousands of online lupus friends if they, too, remember that time in their lives, how their whole world changed, or if doctors couldn’t solve the mystery of their illness, the majority of them would answer with a resounding “Yes! That totally happened to me!” We have so much in common. But this, I’ll get to later.

It was the day before Easter, 2010. A typical Saturday at the salon. Busy. Until that day, I’d never needed to sit down to cut hair, but for some reason I had to give in to our rolling black saddle style stool. Even as I sat, and crafted a perfect bob, I was uncharacteristically out of breath. Over the years, clients often asked me, “Don’t your hands get tired?” or “Doesn’t that hurt your back, bending over the shampoo bowl?” or “Wow, you must be exhausted standing on your feet all day.” It’s bizarre to think about now how all of my answers to these questions were a casual “No, my hands never hurt, my back is strong and I actually feel energized by working all day doing hair and socializing with you!” Of all the things that I lost after lupus – my career, my strong indefatigable body, some relationships – perhaps most devastating for me was the social part. Lupus left me with a loneliness that ached more profoundly than any that ever plagued my body. Thank God, then, for Facebook. But, I’ll get to that later.

Every night I would cry myself to sleep, if I could sleep at all. I’d been released from a two-week near-death hospital stay to a second story apartment, where I’d slowly scooted up the staircase on my butt. My ailments had been the weirdest, mystifying, seemingly disconnected conglomerate of issues that the doctors, after having run every test under the sun, simply scratched their heads and sent me home. I’d been short of breath when I stood. My heart pounded when I walked a few feet. My lower rib cage felt like someone had lit a fire under it.

On the third day, when the doctors at the teaching hospital all stood around my bed and asked me to “draw on this human diagram where it hurts”, I’d drawn exactly that. A ring of flames around where my organs seemed to be pushing up into my ribs. They looked at me politely, trying not to belie their suspicion that I might just be making it up. My explanation that the quality of pain could best be described by the word “charbroiled” only added to the mounting disbelief I could see on their skeptical faces.

Despite feeling like I was on death’s door, my only tangibles were a wet cough that turned out to grow a type of psuedomonas pneumonia. Blood tests were relatively normal, except for extremely high monocytes and a positive ANA, which I was told was a “false positive” and, as for the monocytes, they just showed I’d had a “previous” mono in high school. The reason my organs felt bigger than their allotted torso space was just that. A CT scan showed my liver and spleen were enlarged.

Yet, despite the fact that my blood pressure shot up more than 70 points on a walk to the bathroom, where a pool of blood came gushing out when I sat on the toilet and I didn’t have my period, a white light had lifted me that night a few feet above my hospital bed, where I blissfully floated toward it, and my organs were too big for my body, they sent me home. Something was seriously, seriously wrong. But all the king’s horses and all the king’s men couldn’t… Wait! They found the answer! I thought. Right before they were to discharge me on the last day, a nice young man (one of the many interns or residents? I couldn’t tell which) came to the foot of my bed and announced:

“We found something wrong. Your spleen is enlarged. We can’t let you go.”

He scuttled away. Returning a half hour later, he says, “You are free to go home.”

“What?” I asked incredulously. I’d almost died the night before, a fact I withheld for fear of being sent to the psychiatric ward. The “charbroiled” ring of fire was bad enough for my credibility. I didn’t dare go into revealing the white light. An experience I’ve since found has happened to many of my lupus sisters and brothers.

“But I feel like something is terribly wrong. What about my spleen?”

“What do you mean?” he replied.

“You just told me my spleen was enlarged. What does that mean?”

He shrugged, “I don’t know. I don’t specialize in spleens.”

This, my friends, is what is wrong with modern medicine. Increasingly, med students are becoming so specialized that their tunnel vision precludes from seeing the bigger picture. More lupus patients would get diagnosed if more doctors could put two and two together.

Speaking of twos, this leads me to my point. It is now 2017. I have seven years under my belt of not only understanding the ins and outs of my own lupus, but I’ve had the great fortune to join Facebook support groups over the years. And what I’ve learned is profound.

Much of the literature one will find about lupus makes claim that “no two lupus patients are alike.” That each lupus patient is so incredibly “unique.” And, as the saying goes among the very limited medical and research community that couldn’t give two s**ts about the disease, “If you’ve met one person with lupus, you’ve met one person with lupus.”

I am here to claim that this oversimplification is simply not true. Not only is it wrong, but using language like this does a disservice to our lupus community and harms the very future of its research. What kind of scientist is going to go through all the trouble and money and time to do a study on one individual?

We are not unique. I know this because I know people with lupus. Unlike seven years ago, I know tens of thousands of people with lupus. By posting my own, and reading others’ questions about certain ailments or “co-morbidities” in our online support group, I discovered we have so much in common. From a psychological standpoint alone, we all endure similar stages of emotions and life disruptions that having a debilitating illness brings to the surface. We often lose our ability to do our jobs, participate in sports, attend family events, go out in the sun, even do simple household chores like cleaning or making dinner. With the “mystery” surrounding lupus in particular, we are often mistreated, misdiagnosed and misbelieved by doctors for years. Because of this, and because of our having to cancel plans when we are fatigued, family members and friends can become frustrated with us. Some of them even doubt our credibility. Like all “invisible illnesses” we even look fine. So why are we laying on the couch instead of going to a friend’s baby shower, or even doing the dishes?

This is where connecting with others going through the same thing can be a lifesaver. Over years of participating in Facebook lupus support groups, we find that not only are we not alone in these circumstances, but that medically we are a lot alike.

This is important. Instead of focusing on our differences, only fostering the shroud of “mystery” perplexing not only doctors who treat lupus patients, but doctors who fail to diagnose a disease that actually presents with very telltale signs, we need to look for commonalities. Diagnosis would come more swiftly. Research would seem more appealing. Lupus would not be such a mystery if doctors would just recognize some of the common signs.

If only doctors knew which signs to look for.

Here are a few I’ve compiled from my own experiences and talking to people with lupus which could be crucial for doctors and researchers alike:

– 90 percent of us are women between the ages of 15 to 44 at onset. I know. I know. This is a no-brainer. But why is there not more research about how hormones affect, maybe even cause, lupus? The fact that it happens to young women also misleads doctors to shrug it off. 
“You are too young to be this sick,” they observe. “Plus you look very healthy. I wouldn’t worry about it.”

– Lupus does strike men. Doctors need to know this, because often this is one of the most undiagnosed factions of our community.

– Of the lupus patients who are women, many of us find our disease tends to flare around our menstrual cycle. Again. Hormones? Research?

– Butterfly rash. People with SLE may not get a raised, clearly defined butterfly rash, but a slight flush. Like we applied blush poorly in the dark. My mom kept asking the doctors, “Why does my daughter look like she’s sunburned? She doesn’t normally have red skin.” The more rosy my cheeks, the sicker I got. But doctors just looked at my flushed cheeks and saw a healthy glow. More doctors need to recognize that this could be a sign of lupus.

This is like Family Feud! A game we used to play late at night in one of our Facebook groups to add levity and distractions for those struggling with insomnia. Yet another thing many of us have found we have in common.

100 people’s survey, top 10 answers on the board. Survey says:

– Blood pressure issues. From my personal “surveys” I’d say around 70 percent of people with lupus either have high blood pressure, low blood pressure or wildly fluctuating blood pressure. I personally was diagnosed with postural orthostatic tachycardia syndrome (POTS), after being not believed for a few years. But not many doctors are willing to admit to its correlation to lupus. Yet I have met thousands of folks with lupus who have the latter or some variation of the former. What is the connection between lupus and blood pressure?

– Cardiovascular issues. This goes with blood pressure, but also includes vasculitis, phlebitis, tachycardia, Raynaud’s and the biggest one, pericarditis. How does lupus affect the veins? The circulatory system? The heart? If you are a person with lupus reading this and have been affected, raise your hands! I can guarantee there are a lot of hands going up right now. We desperately need studies on lupus and the cardiovascular system. Low platelets? Antiphospholipid syndrome?

– Infections. Many people with lupus get infections. Infections are one of the leading causes of death for people with lupus. Literature will even say this. Yet why, when so many people with lupus die from heart attacks, kidney failure or infection, do we still say, “Each lupus patient is so vastly different from the next.” ?

I almost died from infections. Lung infections. Another commonality, while we’re at it. Lungs. Lupus causes pleuritis, scarring and other lung complications. Not to mention recurring pneumonias. Which goes with infections.

Before I knew a soul with lupus, I thought I was so unique. I always got repeated pneumonias. Then, after its onset, I got more complex, hard-to-treat infections whose names I can’t pronounce. Like psuedomonas aeruginosa or stenotrophomonas maltophilia or the worst, aspergillosis. I thought I was alone in this. In fact, I didn’t even know if it was related to lupus. Is it? We need a study.

My “studies” of talking with other people who have lupus indicate that it is.

Here is an example of how I stumbled upon my “research” which led me to conclude we were medically more alike than different.

Facebook Post:

“Hey guys, just checking in. I’m struggling in the hospital right now with a rare pneumonia. I’m asking for prayers.”

Paraphrased comments:

“Oh sorry to hear. Sending prayers and gentle hugs.”

Praying hands emoji.

“Awe. I know how you feel. I get pneumonia a lot.”

“Me too! Upper respiratory infections all the time. Sorry you are in the hospital. That sucks. Been there. Prayers up.”

Purple heart emoji.

“Ugh. I really feel your pain. I get lung infections three or four times a year. No fun. Stay strong Sistah!”

Praying hand emoji. Purple heart emoji.

“I hope the doctors are treating you right! I just got out of the hospital last week! XO”

OK, OK, so this isn’t exactly scientific. And I can hear the medical community powers that be scoffing, “Well. We’ve found it very hard to study lupus patients, because they don’t have the same presentation as the next person.”

I’ll concede. We may not be exactly alike. But let’s look at concentric circles:

I may have lung involvement, neuropathy, Raynaud’s, POTS, phlebitis, hearing loss, photosensitivity, frequent infections, fatigue, joint pain, lupus “fog” and menstrual flares, while my fellow lupus warrior in Nebraska may present with kidney involvement, photosensitivity, blood pressure problems, low platelets, neuropathy, fatigue, joint pain and hair loss.

My friend in Maryland has antiphospholipid syndrome, sun tolerance, hair loss, lupus “fog,” history of stroke, POTS, menstrual flares, fatigue and joint pain.

Another friend in California has kidney involvement, sun tolerance, hair loss, low platelets, frequent infections, Raynaud’s, menstrual flares, fatigue and joint pain.

Yet another friend in Louisiana has lung involvement, frequent infections, low blood pressure, photosensitivity, hearing loss, neuropathy, lupus “fog,” menstrual flares, fatigue and joint pain.

My friend in Illinois struggles with CNS involvement, pericarditis, hair loss, photosensitivity, Raynaud’s, vasculitis, lupus “fog,” neuropathy, menstrual flares, fatigue and joint pain.

See any commonalities? I would venture to say that there is not a single person with lupus who does not present with at least three of the above listed ailments. We shouldn’t even call them ailments. We should call them “common signs and symptoms” of lupus.

It’s crucial for us to re-think the language we use to define lupus. It is not possible for each of the 1.5 million Americans and potentially five million people worldwide with lupus to have a completely unique disease from the next. Perpetuating this myth not only isolates lupus patients themselves, but allows doctors to miss telltale signs. Signs that should be taught in medical school. I can tell you a huge thing us lupies have in common is that we will often meet nurses or doctors who don’t know anything at all about lupus. Not learning about it in medical or nursing school is a travesty.

And for the outstanding organizations and advocates who work tirelessly to lobby funding for research, they, too, need all the tools they can get to convince a researcher why a study on lupus and the cardiovascular system, or lupus and the lungs, or lupus and low immunoglobulins, or lupus and hormones would be worth their while.

As an advocate myself, I came back from death’s door. And that is why I fight. I fight for others. My fellow butterfly sisters and brothers. The person who is alone in the hospital. Alone with their weird set of ailments, made only more alienated by nurses and doctors just not getting it.

I have many wishes as a lupus advocate. Many changes, and advancements, and studies, and medicines, and a cure to be found. Those all take action and lot of resources. But let’s start with something that is free and only takes the typing of fingers on a keyboard or the words out of our mouths.

“Though each lupus patient may have her or his own combination of issues, all of those presentations ultimately overlap with another’s.”

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Thinkstock photo via Krimzoya.


I was diagnosed with lupus in September 2011. I’m coming up on six years. I thought I had this thing somewhat under control. You know…the ups and downs and chronic pain I’ve learned to deal with…I knew what to expect and what flares entailed. I knew my life wasn’t where I wanted it but I was on my way to get it there. I’ve worked tirelessly to make sure I take all of my medication, I stretch, I work out or walk as much as possible, I am trying to eat better and most of all I have a positive attitude which I think is incredibly important.

So what happened to me last week sort of shook me back to an all too familiar reality.

Toto, we’re definitely not in Kansas anymore.

Maybe I’ve been living in Oz. And that’s very hard for me to say right now because I thought I had this figured out! Maybe not physically, but mentally at least. Reality check…Glinda sent me home,  things are black and white again and last week all of the color was drained from my life.

I had a vacation planned. And by vacation, I mean staying in a camper by the beach with my boyfriend’s family which is about 45 minutes from my house. That’s a vacation for me and I am completely OK with that…and I was so excited! We were bringing our dog and it was going to be a relaxing week of BBQs, bonfires, good music and great company. The first two days were exactly that.

walking a dog near the beach

deer walking in the woods

I love the beach. I grew up with it down the road from me. I went to camp there every summer and it’s always been my happy place. Since being diagnosed with lupus, I was still able to tolerate the sun until recently.

beach at sunset

The past few years, I noticed feeling more drained and my skin would feel burnt after a brief time in the sun. So I acclimated. I invested in hats, sunscreen, a swim shirt, sunglasses and always played it safe. I asked my doctor about photosensitivity and she suggested dipping my toes in the water per se, to see how I’d do. So I figured hey, I’m on vacation having a great time…let’s see how this goes.

I set up camp at the beach on day two. I had a tent over me, an umbrella next to the tent, SPF 30 all over, a hat, sunglasses and I was in heaven.

woman lying in the shade wearing a hat and sunglasses dog lying in the shade on the beach

I took a brief walk up to the bathroom and the warmth on my skin and sand between my toes felt amazing. I told myself this is the time…I’m testing it out. So I laid out a towel and for about 10 minutes soaked up the sun. And I enjoyed every second of it.

I started to feel tired and we were all getting hungry so we headed back to the camper. The rest of the night I felt a bit off, but I figured it was a big day for me so I just hydrated more than usual, wore my compression socks and relaxed all night.

Then morning came.

I opened my eyes and I knew right away it was going to be a bad day. I didn’t mind staying in the camper because it feels like a house! I slept most of the morning and then my boyfriend and I left because he had an appointment that night.

That’s when I realized I definitely wasn’t in Oz anymore.

There were no longer beautiful colors and lions and tigers and bears and witches and all the fun that comes along with life. There was black and white…more black because I could barely open my eyes.

I was in a major lupus flare. Now, I’ve flared for months at a time…but this hit me like a ton of bricks, literally. I felt as if someone hit every joint in my body, and my head, with a hammer. I couldn’t move. I couldn’t think. I couldn’t cry. All I could do is lay there and hope it would pass.

I called my doctor and surprisingly she wasn’t sold that the flare was from the sun. I had received my Benlysta infusion earlier in the week and didn’t handle it as well as usual, so there were other possible causes. I tried not to think of them because trying to figure out why a flare comes on sometimes is like Sisyphean labor. My rheumatologist told me to dive into my stash of Prednisone and if this was an autoimmune response, that would help before it got out of control.

Now, I’ve been tracking my steps with a Fitbit to show my doctor progress and also to not push myself. One of these flare days I had 477 steps.

fitbit tracker showing 477 steps

477. How is that even possible? I only got up to go to the bathroom. I tried to sit on the couch to have dinner but couldn’t think straight. I was having trouble forming sentences and finding words. I knocked over a full glass of water not once but twice. I couldn’t walk straight. I’m not looking for pity…I just want people to understand that lupus isn’t just being tired and achy. It can be terrifying.

My doctor had also told me that if I was dizzy, my joints were swollen or if I had a fever of 101 to go to the hospital. OK…my joints were swollen, I was dizzy and my fever was 100.1. I told myself I’d go to the hospital if it got worse. And it never got worse…but it didn’t get better. For about five days there was no change.

On the fifth day I called the on call doctor who told me to up the Prednisone for a longer period of time. I did and coincidentally that day I started to feel a tiny bit better. Luckily it just got better from there. Today writing this, I’m still exhausted and achy, but that’s my norm.

I thought I knew lupus. I thought I had accepted my diagnosis. For some reason this flare got me thinking a lot about the stages of grief…which I thought I went through already. In 1969, a psychiatrist by the name of Elisabeth Kübler-Ross wrote a book, “On Death and Dying.” Inspired by working with terminally ill patients, she was the first to write about the five stages of grief.

Popularly known to deal with death or really any other loss or tough time in life, the stages are denial, anger, bargaining, depression and acceptance.

But again…I thought I had accepted this!

I remember denial and anger. I know I’ve bargained and battled depression. But I also know I advocate and do everything I can to fight this disease, which I thought was accepting it. I talk freely about it to whoever wants to know (and even to some people who don’t, haha). That’s one of my coping mechanisms…spreading awareness. A friend told me that the more people know about an illness and someone going through it, the more they care. Then they will talk about it more as well and help raise awareness. That’s why I fundraise every year for the Lupus Foundation of America.

This flare made me question a lot of things. I thought I had this stupid disease somewhat under control. I thought I knew what to expect with a flare. I knew it could get worse, but didn’t expect what I felt. After doing a lot of research on flares, I started researching Kübler-Ross’s ideas (yes, I’m a data and research nerd). Although I have a tremendous amount of faith, if there’s research on something, I’ll 100 percent believe it. So while reading, I realized that these stages of grief don’t have to be linear. Maybe I did accept my illness but then backtracked during this flare because it was the worst one I’ve had yet. I felt myself have moments of spiraling, like Dorothy in the tornado, never knowing when this would end. That sounds like depression to me. I also kept praying to God that I would feel just a bit better for my boyfriend’s birthday which was the Fourth of July (that sounds a lot like bargaining, huh?).

I also grieved. I knew deep down this would pass…but this was another reminder that as well as I’ve been doing, lupus unfortunately is still there. It’s a part of me just as much as anything else in me. It’s sneaky and can hide sometimes but then shows its ugly face. And I’m sorry lupus, but you’re hideous.

selfie of a woman lying on her couch and wearing glasses

So I won’t stop fundraising. I won’t give up hope. I won’t stop praying. But I also will probably cycle through these stages of grief again. I may know the inevitable, that a flare will happen again, but in the meantime I can brush myself off, get up and survive.

Kansas was pretty great for Dorothy in the end, even though it was black and white. And surrounding myself with people who love and care for me through the good and bad…I’m OK with that.

Follow this journey on Nicole’s blog.

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I’m smiley, optimistic and happy-go-lucky; it’s the way I’ve always been. I take everything in my stride, which is not to say I don’t get knocked down. But no matter how many times or how hard I go down, I always get back up with a smile on my face.

Since being diagnosed with lupus, many people have referred to my outlook as a “good attitude.” Although it often makes me proud, it also implies that those who aren’t so positive about their situation display “bad” attitudes – and I can’t bring myself to agree.

 

Living with a chronic illness is an entirely different kind of beast. It’s such a cliché to say that you can’t possibly understand something until you experience it for yourself, but in the case of being chronically ill, I truly believe that. When you’re healthy, it’s easy to categorize the sick. But without knowing their struggles and what they go through on a weekly, daily or even hourly basis, you have no right to judge.

It’s easy to look at me and say I exude a positive attitude, but the truth is that what I go through every day is not nearly half as bad as what most of the lupus population may endure. While my perspective has definitely helped, the fact is I’m also undoubtedly lucky when it comes to lupus.

In my worst moments, you’ll see no ounce of positivity, no trace of a smile and little fight in me. And for some people, those types of moments don’t come only once in a blue moon, but every single day.

My choice is to remain positive, to take a new perspective each and every time lupus flips my world around, and to roll with the punches – because that works for me. But if I were debilitated by both lupus fatigue and insomnia, aching in all my joints and riddled with headaches every day, could you blame me for lacking an optimistic outlook?

For many, it’s not that they live without a “good” attitude, but that they’re just tired. Tired of fighting off an invisible monster that craves nothing more than to beat them when they’re already down. Tired of explaining, defining and trying to educate others about an illness they don’t know much about themselves. They are exhausted over feeling robbed of the moments of happiness, normalcy and ease we expect from life.

When you are a “glass half-full” person, it’s so easy to wonder why someone else only sees what they’re missing. But think about how you’d feel if something stole half of something important from you, and you were given something you’d have to live with the rest of your life.

There is no manual to being chronically ill. And when you’re affected by something even medicine can’t tell you much about, you never know what’s coming for you.

I don’t see my attitude as good or bad, it is just my personal method of coping. For me, being almost painfully positive is my way of dealing with the cold, hard fact that my body is self-destructive and there’s no way of fixing it. It’s a hard pill to swallow, but a smile from ear to ear is what has proven to work for me.

If someone else’s method is to take it on the chin without a smile, to just keep their head down while putting one foot in front of the other, there is nothing any better or worse about their way of getting by.

It shouldn’t be a comparison of one person to another, as we each have an individual path to walk and we trip over different bumps in the road. The sheer fact that we keep on keeping on in the face of adversity, regardless of the approach, is a feat in itself – and one well worth being proud of.

This post originally appeared in Kristiana Page’s column “The Girl Who Cried Wolf” on Lupus News Today.

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Thinkstock photo via DeepGreen.


At the crossroads of a tough decision we often find ourselves in need of a little guidance. It’s generally pictured as a heated debate between an angel on one shoulder and a devil on the other as they hope to win the argument for the indecisive human. Too often I find myself in these situations – but it’s not a devil that sits atop my left shoulder, it’s a little black wolf.

For the rest of my life I’ll continuously struggle to make the right decisions. When you’ve lived without health complications, adjusting to a chronic illness can be a huge challenge. And while it has undeniably gotten easier over time, there are still plenty of situations where I’m forced to choose between what I want and what’s good for me.

 

Life with lupus is rarely ever black and white, and unfortunately it seems this will be an ongoing occurrence. It’s not about choosing the perfect option, as there rarely is one, but choosing the best that’s offered.

Lupus is without a doubt my metaphorical kryptonite. Being Australian, my love for long days in the ocean, basking in the harsh Aussie sun, followed by a salt-riddled meal of fish and chips and a few drinks with friends borders on a cultural cliché. While this is exactly what I love most about my culture, it’s also exactly what I’m warned to avoid most because of my illness.

The little angel on my right shoulder often gets her way. She’s got my best interests at heart and I know that regardless of how frustrated I get, she has such an irritating way of being right – and I can trust her.

However, I’m so easily swayed by that little black wolf. His voice is so loud and clear, egging me on to do all the things I know I shouldn’t: Stay in the sun longer, eat the salty chips, sleep in, skip your lecture – it won’t matter! The worst part is how easily I’m persuaded, and in too many instances it’s not necessarily that he’s cunning, but that I want to listen to him.

Listening to the wolf is easy. He’s carefree and fun. He doesn’t care about the consequences, but heeding his advice always comes at a cost: waking up even more tired than usual and feeling drained of energy from overexposure to the sun. It’s not the wolf that’s forced to help me pick up the pieces of myself, but my angel.

I knew she was right, she always is. And we both knew I’d eventually come around to pushing my pride aside and admitting my wrongdoing. But she doesn’t gloat over my bad decision-making, as ultimately it’s not a bad choice I was chasing, but a lost feeling of normalcy.

My hardest choices are the ones where I’m forced to choose between what I once thought was a given in my life, and what now lies in front of me. I fall into the wolf’s hands not because I seek decisions that can potentially harm my health, but as I’m pining for a reality that no longer belongs to me.

There will never be a time where I don’t have the wolf pointing out all the options I could’ve, should’ve, would’ve had without lupus, and what my life could’ve been if I was “normal” like everyone else.

But then I turn to my right, look at my angel and know there’s not a day that goes by that I’m not a better person because of what lupus has forced me to overcome. That the “normal” version of myself I mourn was not half the person I am today. Although she had so much more freedom in life, her normalcy is exactly what stopped her from being extraordinary in every way.

This post originally appeared in Kristiana Page’s column “The Girl Who Cried Wolf” on Lupus News Today.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Andrew_Rybalko.

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