"I get knocked down, but I get up again..." -ChumbawambaJust yesterday, on the heels of learning of the passing of a Facebook friend due to lupus nephritis, someone asked me "do people still die from lupus?" Momentarily dumfounded and maybe a little insulted (is that the word?) I sadly replied "every day". Alarmingly, this is not the first time someone has asked me this question. It occurred to me that maybe I am doing more harm than good, sharing with anyone who will listen, that despite having lupus, I am thankfully healthy. That perhaps I may be depreciating the gut wrenching pain and anguish that so many people struggle with daily from symptoms that can't be seen. Giving fuel to the "but you don't look sick" fire, that I myself have been burned with. That thought stung. Stings.
My intention is and always has been, to give hope, to be a beacon of light inside someone's darkness. To share the knowledge I've gained, my dreadful experiences, as an offer of consolation, to let you know that yes, I've been down this road of pain and despair and that I can relate. I CAN relate. (In that, you will have to trust that I have not yet shared the worst experiences of my life. I'm just not ready.) Yet I KNOW, firsthand, lupus can be beaten into submission. Can it be cured? Who knows, the question is moot. I don't presume to say I'm "cured". Attention Nick Cannon: you really should retract that statement. I'm absolutely fine with successfully living with this once unruly, but now stellar, tenant. For once, I let my ego take a leave, not needing the label "cured" to feel successful and empowered. Hoping it lasts forever...believing it will.
To all who are misinformed, make no mistake, people die from lupus. It nearly took me...twice. Like cancer, it is a force to be reckoned with, yet it gets a fraction of the publicity and when celebrities make claims that their doctors have cured them, it really doesn't help our cause at all. While we know much more today about how the disease affects us, and diagnosis is a much less arduous task, we still aren't any closer to knowing what makes it tick. It's a chameleon that changes on a dime from individual to individual, from day to day. Do not underestimate it. I believe I've made it obvious that I have done so in the past, a few times...it didn't work out so well. It was not until I granted lupus respect, that I was able to prevail. Let me be clear...you don't just get the upper hand and keep it. It's a tough road to attain and a constant battle to maintain your ground. I work very hard at keeping myself well and I understand the game could change on a moment's notice. If it does, well, lupus better be wearing a protective athletic supporter.
How did I get to this place...You've probably heard the phrase "God helps those who help themselves." I'm not sure about God, but I have faith in me and results I can see. I've learned if you work hard, you get rewarded. If you practice, you improve. If you diet and exercise, you look and feel better. So in terms of managing lupus all these same rules apply. I am my own advocate. I work hard at exploring and researching my options. I practice being positive, reducing stress and eliminating variables around me that are unhealthy. I maintain a healthy diet and exercise regularly. I help myself and I work very hard at it. And I take medication if I need it. So when a person asks me "do people still die of lupus" how can I not feel that my fellow sufferers are being neglected, and that my own long personal struggle and triumph is devalued? The point is, my health has not been handed to me nor am I well because I have a "mild case", nor has the disease been eradicated by astounding advances in medicine. People suffer daily. I've suffered. Lupus is a bitch and there is no cure. These are the facts. Lupus is like cancer's ugly stepsister, present, but getting only crumbs of attention.Why is that?
This is not the post I intended to share next, but in light of yesterday's conversation, I needed to come here and before all of you, hash out how I felt about the gross misconception I just might be promoting, and decide if I should continue writing...
Am I the lucky exception to the rule? Do I have some higher ranking guardian Angel? Or, am I an honest to goodness success story, one where both conventional and unconventional treatments work in tandem to heal and where dedication to wellness is not an option? YES, that's it.
Because I believe this to be true, I will continue to share my story (ready or not). And let's be real, there is an Olympian soccer player right now, just won the gold, who has lupus. I think if she's speaking out and successfully living her life to the fullest, much more publicly, I can write my little blog. Free from worry that I am possibly being viewed as some anomaly falsely spreading the word that lupus is not life threatening. I know all too well that it is.
Let me leave you with this...For an unexceptional person, this marriage of natural healing and "western" medicine has yielded EXCEPTIONAL results, so why not for someone, anyone, everyone else? Humbly and sadly I realize there are people suffering that may be in stages of this disease where nothing can be done short of a miracle. Fortunately, I did not begin my journey at such a point. The earlier you start making changes, the better. So with that knowledge, consider what I have to say and open your own mind to the possibilities. Work hard, explore, be positive, practice...help yourself, the best you can. Try. Nothing truly negative can come from actions that are wholly positive. Results will vary, but any change for the better, no matter how small, is for the greater good. I read a statement yesterday that said "Whatever you eat, you are either fighting disease or feeding it." Yup. Why-oh-why can't lupus cower at chocolate, cheeseburgers and piña coladas?
Next time, lets have more fun and talk about emergency hospital admissions! Woo hoo!