LupusChick’s Spotlight On series began about 3 years ago. We highlight men and women who are dealing with a wide range of illnesses, and we felt it was important to tell individual stories because of how different each story is. Our hope is you connect to one (or more) stories! This Spotlight On story was completed by LC writer, Maria Mongiardo and edited by LC Founder, Marisa.
Stefannie had been dealing with mild Lupus symptoms for years, but the party really got started when her daughter had to be delivered by an emergency C-section. Afterwards, her lungs, skin, surgery wounds, joints, even the pericardial sac around her heart filled with fluid. She spent a total of two weeks in the hospital, then another two months in outpatient recovery and wound care. A few weeks later she tested positive for tuberculosis. Nobody in her family had tuberculosis – and it seemed to be a strange diagnosis in her and everyone else’s mind. Fast forward through two years of aches, pains, bizarre weight fluctuations, and inexplicable migraines, Stefannie finally gets a diagnosis for systemic Lupus. Today, Stefannie runs her own Facebook page called The Chronic Curmudgeon. The page is currently an outlet for her to make snarky lupus memes, but she hopes to grow it into a resource for advice.
Had you heard of Lupus before getting diagnosed? Does anyone else in your family have it?
I am the first and only person in my family to have Lupus. Before my diagnosis, Lupus was just a throwaway punch line on “House.” The suggestion that always gets pulled out of the diagnosis grab-bag to be grumpily shot down so the team of attractive doctors can focus on solving the real problem. Do you know how many “It is never Lupus” jokes I have heard since being diagnosed? ALL OF THEM, that is how many. I had certainly never taken it seriously as a real disease, let alone considered for a second that it might happen to me.
Hearing my rheumatologist say “Systemic Lupus” was the first time I had ever heard the words spoken in a real life context. And she was saying them to me, about me. I had no context for it. It felt made-up. Like being told, “I am sorry, but you have a case of the Skiddlybop Hoop-a-floops.” The what, now?
What thoughts were running through your mind when you were diagnosed?
Honestly? I laughed. While maybe crying a little. But not in a sad way; it was definitely a sunshine-through-raindrops scenario. I was just so damn relieved. Later, I would get scared. I would freak out about my kids, they were so little and suddenly here was this disease that could take me away from them. I would wrestle with the guilt of saddling my husband with a life he had not signed up for when he married me six years earlier. I would shake my fist at the stars and curse the fates and wail and gnash my teeth.
But all of that would come later.
Because in that moment, finally, after literally years of feeling like I had a bajillion different things wrong with me, things that hurt and confused and wrecked me, someone could tell me that all of those things were actually just one thing. It was a big thing, a bad thing, a complicated thing. But it had a NAME. And a monster I can name is a monster I can fight.
How do you explain Lupus to family members, friends, and even your daughter?
I keep it really simple. It has been my experience that, unless someone is in my immediate support network, they do not actually want to hear the nitty gritty details of how Lupus works. Fair weather friends, uncles who I only see at holidays, coworkers (back when I had those),etc., they don’t need deep insight into my life with this disease. So I have cultivated a few quick sound bite answers:
“My immune system attacks me, instead of germs.”
“It is like having the flu, to varying degrees, all day every day.”
“Basically, I am allergic to the sun.”
“I have a set amount of energy each day. Once I spend it, it is gone.”
“Chronic means it is never going away.”
“No idea how I got it. Might be genetic, might not.”
“No, it is not contagious.”
“No, there’s no cure.”
For the people in the trenches with me, though, I hold nothing back. I am asking them to help support me with this wacky disease, so I will answer any question they have got and explain everything a dozen different ways until we are all on the same page. This means that my close friends and immediate family know way more about the inner workings of my body than any of us are really comfortable with, but it is absolutely worth it when my Lupus flares up and everyone just knows what to do. My kids get the same level of information. I just package it differently for them. Everything is matter-of-fact and simplified, though never sugarcoated. They know that Mommy gets too tired to do things, and she cannot go out in the sun, and that sometimes she gets really bad headaches, and that Mommy needs a nap every day so play quietly during Rest Time. If you were to ask them, they could give you a basic explanation of how the good guys in a person’s body that protect them from germs do not work right in their Mommy.
What I will never, not ever, do is show them that Lupus is scary. No kid needs that kind of worry in their life. It helps that they were young enough when I was diagnosed that they don’t remember life when Mommy was not sick. Which doesn’t break my heart into a million tiny pieces, not at all.
How do you stay positive while living with Lupus?
I do not. Let me ‘splain. I am not an optimist by nature. On my good days, I am a realist at best. On my bad days, downright cynical. When your default setting is “Somewhat Cranky,” maintaining a positive attitude is actually a constant, exhausting effort.
And I am tired enough, as it is.
So I do what all Lupus patients learn how to do – I budget my energy. I have moments of positivity. Bursts of hope and can-do attitude. Days of productiveness and good cheer. And in between, I rest. My introversion kicks in, and I take a nap, or practice my Kung Fu, or huddle around my laptop making snarky memes, or bake irresponsible amounts of cookies while binge-watching ‘The West Wing’ for the umpteenth time, whatever I need to do to let my attitude idle at Unpleasant without bothering anyone else. That is what recharges my batteries so I can happily jump back into the fight again. There is a lot of pressure on Lupus patients to stay positive. Not just from healthy people who do not want to see the actual toll that having a chronic illness takes, but from folks who are legitimately concerned for our welfare. And I totally get why. The truth is that depression is a very real pit into which we can easily fall. I have a history of depression, myself, and there are days when I feel the edge of that pit under my toes. Staying positive is vital to our survival. However, that positivity does not look the same on all of us. We each have to find our own path to it. There are patients who find peace in their faith, or comfort in the kindness of others, or whatever else works, and I’m happy for them. Having Lupus sucks. In order for me to be positive, I have got to be able to be surly about that suckage.
What do you hope for the future?
I hope for a cure. And I hope that cure does not come with a bushel of wackadoodle side effects like every other Lupus treatment. Can you imagine? “We have cured your Lupus! Of course, now your hair is made of spaghetti and all of your sneezes are flammable. We recommend carrying a fire extinguisher. Best of luck!” Honestly, I would settle for a new treatment that we do not have to borrow from the oncology world, or that does not run the risk of collapsing our kidneys or popping our livers or making our brains literally leak out of our ears. So I guess I hope for that, too. I hope to live long enough to hold the grandbabies that my nine-year-old son keeps telling me he will have, and the grand-tiger-cubs that my baby girl insists she will bring home from her job as a zoologist. I hope I get to be there for them for as long as they need me, and then a little longer.
What advice would you give to other moms out there?
Giving advice to other moms on the Internet…that is some risky territory. No mom likes to be told she is doing it wrong, so I am not going to. I will just mention a few things that have helped me and my family, and leave it at that.
Get A Lockbox For Your Meds: My pill collection is extensive and insane, and half the stuff I take would kill a healthy bull moose in the wrong dose. If my kids or pets ever got ahold of them? Ugh. Just no. I have had the conversation with my kids about never taking other people’s medicine and not messing with random pills encountered out in the wild, but I needed a much more tangible level of security. So I went out to ye olde Walmart and bought one of those combination lock cash boxes. It fits all of my many pill bottles, only my husband and I know the combo, and bam! I can sleep at night.
Take Care Of Yourself: I know we hear that a lot, so much that the words lose all meaning and start to sound all womp-wompy like Charlie Brown’s teacher, but I mean it. As a mom, I tend to give and do and manage for everyone else, but as a Lupus patient I only have a finite amount of energy each day. So then I burn myself out for my family and have nothing left for me. And that’s where the seeds of resentment take root. I love my little darlings more than I love cupcakes, but if I do not give them an extra hour of screen time so I can take a nap, or a hot bath, or drink a cup of coffee in peace, I am going to resent the hell outta them. And that is no way to live.
Be Honest With Your Kids: Well, as honest as you think they can handle, anyway. My kids are elementary school age, so they are old enough to know I am sick but not really old enough to wrassle with the long-term implications of my illness. So I tell them about my symptoms and limitations. My kids are really good at finding playgrounds with lots of shade so that I can hang out with them, and they’re pretty cool about being quiet during nap time. They do not know that my Lupus could suddenly decide to attack my vital organs, or that my medications could cause pretty serious complications in the next decade or so. I just don’t tell them about those things. Not yet, anyway. Because I cannot think of any heavier burden for a little kid to carry than a bag full of Mommy-related what-ifs. Of course, I would rather shelter them from all of this mess. But Lupus doesn’t really give me that option. This disease is all up in my business, so it is also all up in theirs. So I tell them, and hope that, if nothing else, I will at least raise a couple of people who have some empathy and understanding of other folks’ disabilities.
What has Lupus taught you in life?
How to say no (easy), and how to ask for help (hard, so hard, I would rather poke out my own eyeballs). How to advocate for myself, especially with doctors. I have the luxury of basic health insurance, so I can afford to vet my healthcare providers. I ask questions, get clarification on medical jargon, and express my preferences for my care along with a willingness to discuss options. And if the doctor gets condescending or shuts me down in any way, then I walk the hell out. If they are not willing to work with the person living inside the body, how can they be trusted to help fix the body? On the other hand, if I trust a doctor then I am all in, let’s go, pop the hood on this body and let’s get to work.
I have also learned some things that surprised me. Like the fine art of preparation. Before I do anything, I have to weigh it against my condition. How medicated am I? Do I have the energy for that? If I do thing A, will I have to postpone things B through D? Every day has to be planned around naptime – between noon and 1:00pm every day, if I do not find a horizontal surface then vertigo and gravity will find one for me – which is a fine way to live, if you are a toddler. For adults with adult responsibilities, it gets complicated. And then there is the environmental factor to consider. Healthy people look outside and just see outside. I look outside, and I see an obstacle course. Cold winds to numb my fingers and chilly puddles to freeze my feet. Errant curbs, and hills, and rocky patches, to tweak aching knees and hips. Pools of sunshine are HOT LAVA and if I step in them I DIE. I have gotten pretty quick at calculating my routes, and I carry a huge bag full of everything I might need to get through the world. The bag! Lupus has taught me to carry a big damn bag. It is got everything from an umbrella, to painkillers, to chemical handwarmers. I never know what I will need in a day, so I just carry all of it. Recently, I added single-use toothbrushes and a phone charger, so now my purse can double as a hospital go-bag. Because I just never know. Basically, if you need to move a small army, give me a call. I have learned a thing or two about complex logistics. Lupus has also taught me a lot about my limits. Specifically, that they are not where I thought they would be. I’ve learned that the limit of what I can accomplish in a day is so close that I can feel it looming from the moment I wake up, while the limit of what I can endure is so far away that I can’t hope to see it beyond the horizon. I may have to take a nap every few hours, but I have no fear of pain. When you live with pain all day every day, it loses its ability to scare. My body has been through surgeries and chemicals and needles, has eaten itself alive and built itself back up, will do it all over and over again, and I am still here. Still sane. Still sassy. Still fighting. Before Lupus, I never would have thought myself capable of that. Now, I cannot imagine surviving any other way.
Is there anything you hope someone understands from reading your story?
That being sick does not mean you stop being human. I am flawed and cranky and weird. There is no right way or wrong way to be chronically ill. We are all just trying to survive as best we can. Might as well help each other out while we are at it.
What is your Lupus story? Let us know in the comments.
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