Tuesday, August 21, 2012

Miss Conception?

"I get knocked down, but I get up again..." -Chumbawamba

Just 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 piƱa coladas?

Next time, lets have more fun and talk about emergency hospital admissions! Woo hoo!







Tuesday, August 7, 2012

"Strange brew...killin' what's inside of you." -Eric Clapton

When you think of homeopathy, what comes to mind first? Scam? Hogwash? Snake Oil? Worth a shot?  All of the above? Me too. I had absolutely no idea what to expect at my first appointment with Dr. Fred Tinari of Holbrook, NY. I was skeptical (no surprise there) but also hopeful and open to trying a new approach. I wanted this to work, I really did, and I now believe THAT is exactly why it did work so well.

I didn't know this at the time, but I have come to realize, that you must plan to wait for a good doctor for at least an hour before they see you. If you arrive at an appointment and they take you in right away, run. So yes, I waited and waited to be seen in a waiting room full of reflexology and reiki literature. Getting my "learn on" about all things unconventional with my future husband by my side, his eyes filled with high hopes. Admittedly, I sarcastically thought  "ooooooh kaaaaaaay", I can't help myself. I have to see to believe.

The most unexpected part of the visit was the doctor himself. Envisioning a tall, thin, pasty & pale, granola munching half-a-quack, quiet the opposite entered the room. Short, well fed, Italian father of a lot of kids with jokes to spare. Immediately I was comfortable with and trusted him. Make me laugh and I'm on the hook. It also helped that I knew someone who had great success following his regimen. And the clincher...he told me NOT to stop taking my meds. That was shocking. I guess because I naturally associated unconventional with radical. My mistake. Funny thing is, I did stop my meds. (Disclaimer: I do not suggest anyone/everyone stop taking their medications) I stopped because, well, how would I know what was working if I was practicing both? If I was going to do this thing, really do it, I resigned myself to committing to it wholly for 3 months and take it from there. My burning desire for PROOF could have really put me in harms way. It was irresponsible, I admit it and I am fortunate things turned out the way they did...but back to the visit.

It was odd, I ain't gonna lie and I often glanced over at the handsome face who brought me to this strange place, as a reminder that I now possessed a wide open mind. ;) There was a lot of testing going on, but testing like I'd never experienced before. The good doctor was checking for impedance against various substances. Impedance, with regard to homeopathy (as I understand it) is a sort of electrical activity that occurs in response to certain variables. Basically, I would hold a vial that contained say, wheat gluten. I would hold the vial in my right hand and lean it against my chest. With my left arm extended out in front of me, the doctor would ask me to "lift up" while he provided resistance. If I had no trouble lifting my arm, the contents of the vial were a non issue. If I had trouble, it was an issue. It was simple, non threatening and quite interesting. I could feel the weakness come over me when I held certain vials which was alarmingly wondrous. How I felt during that visit can be best described by assimilating it to the moment when Dorothy Gale steps out of her black and white farm house into the technicolor world of Munchkinland. The instance of realization that there were possibilities out there, that I never even knew of, let alone considered, that could help me get an edge over lupus-in a healthy natural way, was a magical moment for me.  A door was opened.

The toughest information I would learn that day is that I had a severe sensitivity to wheat gluten. Going "gluten free" back in the late 90's was no easy task. Luckily my parent's combined DNA provided me with a solid resolve and amazing will power. I would need it. In addition, we found there were many vitamins and minerals I was lacking and was put on a course of dairy free, gluten free and supplements. Soy cheese was no delight either back then. Gross. And the prices were outrageous! How do you put a price on your health though? I bit the bullet and went full steam ahead. Resolving to do this thing hard core for at least three months. No cheating, no meds, faithfully taking the supplements and believing down to the depths of my soul, this was going to work. Screw you naysayers, I'm on a mission!

For three years I stayed this course. Eventually becoming a vegetarian to boot. I think that's when I stopped getting dinner invitations. ;)  Though my family was very supportive and always, ALWAYS had "Kath's food" on hand. These three years were amazing for me in many ways. I was living life, gaining confidence, growing up, taking control and making decisions without regard for anyone but me. As you know, a foreign concept to my former self. I eloped for heaven's sake! In Vegas no less! Maybe those books were right after all. I SHOULD mourn my former life, because this one is SO MUCH BETTER. F U lupus, you will not bring this chick down, no way. In fact, maybe I should THANK you. :P

So pumped, so restored, so confident so...cocky. A quote comes to mind:
"Before you attempt to beat the odds, be sure you could survive the odds beating you.”

What transpired after the three symptom and medication free "Golden Years", as I call them, was a humbling, frightening dose of reality. The aforementioned odds I was fiercely trying to beat, still had quite a bit of fight left in them too. Pleurisy, pericarditis and joint pain...oh my. We're not in Symptom Free Land anymore Toto.