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The Invaluable Lessons I've Learned From Living With Lupus

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Having a chronic illness and living with chronic pain can make a person lose touch with the simple, beautiful things in life. Trust me, I know from my own, personal experience. I’ve been living with chronic illness and pain for 10 years and I can liken it only to being on a constant roller coaster ride that has no end and no beginning. Sure, a roller coaster can be fun if you ride it once and then get off, but with chronic illness, the ride never stops and you just keep riding the same ride, over and over and over again. The result of this wild, unpredictable ride is a distorted perception of reality, bringing feelings of confusion, frustration, isolation and utter and complete turmoil.

It has been a little over a year since I was finally diagnosed, or shall I say, since a doctor finally found the name for the never-ending coaster, and that name is lupus – more specifically, SLE, which stands for systemic lupus erythematosus. Lupus is often referred to as “the great imitator” because it mimics so many other diseases and health issues, thus making it a very elusive and evasive disease to diagnose. But after a 10-year search for the name of this never-ending coaster, I finally had it. The search was finally over, or so I naively thought, and now I could just simply follow the plan set before me for treatment and get my life back. I wouldn’t normally describe myself as someone who has a “Polly Anna”-type view of the world, but the feelings of euphoria that ensued after finally finding out the name of my illness are somewhat indescribable. With great confidence, my doctor told me that from here on out, the rest would be positive. My search was over and now he and his team were going to help me feel better and get my life back.

It kind of makes me chuckle a little bit looking back because little did I know, I was about to embark on the next leg of this roller coaster ride, with its own new set of twists, turns, loops and surprises. There is no end and no beginning to battling a chronic illness. It is a never-ending cycle of adjusting, tweaking and fine tuning. Even with a name, the ride continues.

The ride is still exhausting, excruciating and painstakingly repetitive in nature as we search for the right combination of treatments to help me live the best possible life that I can. Just like you would never want to get on a roller coaster that has not had any recent maintenance, you have to constantly treat your chronic illness like a machine that needs routine service, maintenance and never-ending checkups. Adjustments have to be made often. Lots of labs have to be drawn to make sure you are on track and that no new problems are arising. And then there are the medicines; although they are a necessary evil, they wreak great havoc on your body and throw it into yet another realm of twists and turns that you never see coming. Over time I’ve come to realize that treatment options are limited and also cause an onslaught of side effects that almost match the cruelty of the disease itself.

A year later, knowing why my life has literally been a roller coaster ride has been a gift and a disappointment all in one. For nine long years I searched for answers. For nine years I was poked and prodded, put through test after test, sent to specialist after specialist and received no real news. To finally know has made it legitimate. It has validated every poke and prod, every tear, every pain, every missed opportunity and outing. The battle continues from day to day. I work full-time. I come home exhausted. I do my best to be a mom and wife to my two most precious and greatest gifts, my husband and my son. And almost daily, I feel like I am failing them miserably. Always grouchy and on edge. Always tired and in pain. A short fuse, a loud mouth quick to bark and bite because I hurt so bad and feel so hopeless.

Although chronic pain and illness have cost me a great deal of joy, I have to believe there is a purpose for this pain, a purpose for my struggling, a purpose for all I’ve sacrificed, like valuable time with my family, outings with friends and the countless times I’ve had to back out of things at the last minute due to feeling so awful all the time. There has to be a better way. This can’t be all that life has for me. There has to be more to life than the endless struggling, pain, isolation, frustration, lack of direction and lack of relief from it all.

Do you believe in signs? Moments of divine intervention? Or as my son likes to call them, God winks. I do, and several months ago, my son and I were driving on our way back home from an afternoon outing when all of a sudden, I noticed a group of birds take flight right alongside my car. It was almost like they were following me, in synch with the movement and direction of the vehicle. They were in a perfect formation, like only birds can do. Suddenly, it was as if time slowed down, the ride became a pleasant one and my eyes opened wide for the first time in a very long time. In that moment, I realized how beautiful life really is.

It sounds silly as I sit here and recount this moment in time, but it was a very poignant moment for me. A simple flight of birds flying in formation reminded me of the power of slowing down to see all the beauty that surrounds us in the world. Taking the time to really slow down, get off the ride and see the stunning and wondrous views that surround us in life will literally take your breath away.

Like when I slow down and look at my beautiful son, my heart skips a beat. The unique, talented, smart, kind and compassionate human being he is astounds me. He’s 11, soon to be 12, and time is just flying by. He’s my only son, a true gift, a miracle. Born 10 weeks early after a very complicated pregnancy, to say the least, he truly is a miracle and the best miracle I’ve ever received. Being sick has forced me to slow down and to see what a miracle he truly is.

And then there’s my husband, my rock, the one who never leaves my side when I need him, the one who never doubts that things will improve and get better for me. He means everything to me. He saved me from myself and taught me what it means to be loved unconditionally. The gift of unconditional love he has given to me is one I hope every person receives because there is no value that can be placed on that type of love.

Being sick has taught me how blessed I am to be alive and has heightened my awareness to the many blessings in my life. I’m ashamed to admit I used to take many of these blessings for granted, but I’m so thankful that my eyes are fully open now to see how blessed I truly am.

My faith means everything to me and learning to lean on it has become my lifeline. Family squabbles that seemed as though they could never be settled matter no more to me. I want to be at peace with everyone, especially my family and friends. Life is short and not a single one of us gets to know when our ticket is up.

I have learned that forgiveness is the most beautiful gift of all and it must happen now, before it is too late. Learning to accept my flaws and the flaws of others and instead focus on the good that we each have to offer is perhaps the greatest gift of all. There are lessons to be learned and people to reach through this path of pain and I will find purpose in the midst of it all.

drawing of a flower with text 'With every ounce of pain, suffering, and so much life, love, and happiness, so today's pain will be tomorrow's gain'

So I am setting my sights on all the blessings being ill has brought to light and I am thankful that I have the chance to change my perspective and not miss out on all the good in my life. I am thankful that I have a chance to right my wrongs, to love and be loved, to forgive and be forgiven. That, my friends, is a very beautiful thing, just like a rainbow after a thunderstorm, or a giant smile after riding the coaster of a lifetime.

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Thinkstock photo via heyengel.

Originally published: May 4, 2017
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