Understanding the Unknown: What Lupus Means To Me
For those of us with Lupus, it is a very definite, consuming and frustrating disease. For those of you who love someone with Lupus, it too can be a very frustrating disease. And as hard as it is for you to try and understand what Lupus is and how it wreaks havoc on our lives, please also try and remember how those of us who LIVE IT must feel.
Please know, we don’t fault you for not knowing what we are going through. Even the medical community is at a loss, and they are the “experts.” We simply love you, for loving us.
What Lupus Means.
Living with Lupus and being the mommy of two beautiful boys means that the pain, fatigue, fear, and absolute frustration can’t control your life. Even when it is excruciatingly painful to help them put on their shoes; play hide-and-seek; or hug them – you are still mommy…and magic. Therefore, you are not able to say “not right now, mommy is sick and tired,” of being sick and tired.
It means that our family and friends will never understand what it’s like to have our bones, joints, and muscles hurt so bad that the weight of our own body on itself is pure misery. It means that nothing is ever “normal” or “simple” when it comes to an illness. Often times it isn’t even explainable, much less treatable. Headaches can last for weeks, a cough can turn into pneumonia in a matter of hours. The healthy bacteria that resides in your body can cause mouth ulcerations so painful that it leaves you speechless; and your muscles can become so inflamed that it causes permanent damage to your nerves.
It means that while people think you are just being lazy, you will never be able to make them fully realize that your body is spending ALL of its ENERGY attacking itself every moment of every day, so it has nothing left to give in order to do simple everyday things. Things such as wasting what precious fragile energy you do have trying to explain and defend yourself and your disease to another idiot who simply does not have the compassion or capabilities of ever understanding it.
It means that while the symptoms of Lupus can be vague. However, there is nothing vague about the fear we live with EVERYDAY that today may be the day when our kidneys fail. Or when our brain swells. Or our eyesight deteriorates. Or when we can’t walk because our joints just won’t bend. Or when our heart beats its last. Sound morbid? Not to a lupus survivor. To us, it’s the sound of accepting our unforgiving disease.
It means that when your sons are sick and they need hugs and love from mommy in order to feel better, that is EXACTLY what you give them…with utter disregard for your own health. Then you put on your big girl britches and accept the consequences of these actions and getting sick yourself while not knowing how bad this time will be…or how many doctor visits/hospital stays/prescriptions it will take to regain your “health.” But you wouldn’t waste a single opportunity to lessen the hurt and pain of your sick child in their time of need because you damn well know that there may be a time when you are no longer around in order to be there for them.
It means that you will never be a shampoo model for Pantene – losing clumps of hair isn’t exactly “in” for this season! You can also forget about being a suntan model. In order to prevent a serious flare, you avoid the sun and become so pale that you make milk look tan. It means that sometimes you have to find the sick humor in being this sick because if you don’t, it will also begin to detioriate your very soul.
It means taking medications in order to “LIVE” with Lupus that are as equally toxic and devastating as the disease itself. You must really be desperate in order to willingly take medications whose warnings include: “may cause liver failure”; “may leave you susceptible to fatal, opportunistic infections”; “may cause irreparable eye damage.”
These pills aren’t even including our reliable arch nemesis, steroids. It means having to take these wicked little things in order to get the inflammation-of-the-month under control while knowing that they are causing such extreme bone loss that you wake up one morning with a broken ankle that requires reconstructive surgery. Let me repeat – You.Broke.It.By.Sleeping. And you continue to put these devastating pills into your mouth, voluntarily, because you know that if you don’t, you are putting something far more precious at risk. Your life.
But Lupus also means that you will be pushed to limits – mentally, physically,emotionally, and spiritually – that you never imagined are possible. And you continue to push these limits with your head held high and your middle finger held higher because you refuse to let Lupus win. You have Lupus; but Lupus does not have you.
It means that each moment that is pain or illness free is a victory. It means that you will learn to appreciate the small things in life in ways that healthy individuals can’t begin to comprehend. Such as being able to work all day, go home to play with your children, do housework, and still have enough energy to smile your adorably angry smile and tell Lupus that it can Kiss. Your. Ass. That, my friends, is a major victory.
Lupus. I am a Victor, not a Victim.
Article written by guest writer, Brandy Peacock
Brandy is Lupus survivor and advocate, cleverly disguised as a Beautiful Disaster from Edinburg, Texas. She is inspired by everyone who is silently battling their own illnesses – the “invisible” ones, the chronic ones, the incurable ones, the unknown ones, the misunderstood ones, and the terminal ones. She is most proud of her role as Mommy to her two young sons and hopes that one day they will also be able to call her “Hero.”
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