My life has become a revolving door of doctor visits, blood draws, IV infusions, trial treatments, big pills, little pills, immune-suppressant treatments, and sleeping my ass off. Why? Because I have a fairly unknown disease called Lupus. Fortunately for me, other than inflammation of my lungs, I have not had true organ (heart, kidney, liver, lungs) involvement. Unfortunately for me, my skin, my entire digestive system from top to bottom, and my joints have become my opponent. I am currently in a Harry Potter chess game of sorts that I will ultimately lose. Lupus called check-mate long ago, merely allowing me to move my pawns around as if protecting my Rook means my King still has a chance.
When I am not dealing with all of that, I am a single mom of two teen boys. I find myself watching them as I did when they were young, discovering the giant world within their tiny backyard. I am always gracious for their devotion to me, and yet keenly aware of their own suffering. The torment of that which is Lupus, touches everyone that touches me.
It is here that I feel I should mention just a few fun facts about Lupus to get those that don’t know what it is, up to speed. According to the Lupus foundation of America, “Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years.”
Web MD lists the more common symptoms of Lupus as:
- Achy joints (arthralgia)
- Unexplained fever (more than 100 F)
- Swollen joints (arthritis)
- Prolonged or extreme fatigue
- Skin rash
- Ankle swelling and fluid accumulation
- Pain in the chest when breathing deeply (pleurisy)
- A butterfly-shaped rash across the cheeks and nose
- Hair loss
- Sensitivity to the sun and/or other light
- Mouth or nose sores
- Pale or purple fingers or toes from cold or stress (Raynaud’s phenomenon)
- Blood Involvement
- Major Organ Involvement
The symptoms get more severe depending on how bad your lupus is, but new medications are currently in trial phases and some have already reached the general population. From anti-malarial drugs to more invasive treatments such as chemo, those with Lupus are hopeful for these new trials of drugs specifically designed to treat lupus. The more people that are made aware of what this disease actually is, the more that can be done for those of us that suffer from it.
Having my fate so dramatically altered while I was working 14 hour days, 6 days a week, was gut wrenching. I LOVED being a career woman in the music industry. Even calling it a career would be an understatement. I was born into the music industry, having a father in an unknown band during the 80’s heyday in Los Angeles. So my career wasn’t just a career, it was my everything. I was breaking glass ceilings and this job, this career, was my prospect for a better world. I may not have been able to fix my broken, divorced family of three but dammit my boys and I would live well. It afforded them a lifestyle that I couldn’t have dreamed of as a child. It afforded me my own luxury typically lost on those from the mid-west, a longing to see the world over.
Fully aware of the changes in my heart and mind since my Lupus diagnosis, recognizing my hunger to escape my life. Constantly aware of my own limitations. Yet, still anxiously awaiting an adventure that would wake me up from the dream that has become my reality. Oh, I know I am running and to be honest I can’t run fast enough. From what my life has become and the memories of what it used to be. From my boys, now teens, who battle me and dote on me almost simultaneously. But most importantly, from my Lupus.
My dreams, when not plagued with insomnia, are still filled with all of the magical adventures that I’ve already been on, and the places still yet to be seen. My eagerness to travel has not once been abated since hearing those words “You have lupus.” Quite the opposite occurred actually, as not only was I confronted with this ill-fated disability but my own impending mortality. I realized I had less time to see the wonderful things out there just waiting to be seen. Being positive and happy by nature, does not remove reality from one’s mind. And once the mind allows for sorrow, so too eventually goes the way of the heart.
While my body may be broken, I realize the key to happiness for me is the mystery of the cities that my eyes have not yet seen. My saving grace, that will stay with me until my last dying breath, is my thirst for seeing the world. New cities, new cultures, new flavors and smells. I am playing a life and death game of chess but that doesn’t stop me from enjoying the moves. What I mean is, sometimes it really IS about the journey, and not the destination or the winning of the game. I know it sounds cheesy, but for someone like me, it’s all we have. Winning is being able to move around the whole board before the Queen takes my King. I may be Disabled, but I am a traveler nonetheless. Welcome to my journey.