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.

Friday, April 22, 2011

"But there's one thing I know. The blues they send to meet me, won't defeat me." -BJ Thomas

Allow me to back up a little bit, because I didn't go from terrified to triumphant in 60 seconds. It took a couple of years and some monumental life changes.

"No children" would resonate in my mind almost daily. As well as, "who would really want to be with such a flawed, broken woman?" I had someone, but did he really want, let alone deserve, a life of limits and extraordinary challenges? To be an eternal caretaker? After all, even I wanted to run away from it all. My self worth as at an all time low, my personal stock market was crashing. Lupus was winning, but much to everyone's surprise, yet as promised, I gave it a swift kick in the nuts and turned my frown upside down...eventually.

Remember that boyfriend that was compassionate enough to help me off the toilet? And eventually out of the tub, down the stairs, into the car and into bed when I couldn't myself? He was a really good guy and still is. None of the news I received was enough to scare him away. He stood by me and did his best to assure me it would all be alright. He had been my other half since I was 15. But like I said, things were changing, I was changing. After much heartache, it didn't pan out for us...thank God. I'll explain.

After being in such a long, exclusive relationship that commenced at such a young age, the freedom of not being in one was a bit intoxicating. Not that I was sport dating, I wasn't, it was just a completely different way of life for me, that was exciting and seemingly limitless. I had no time to think about being sick. I was too busy having different adventures and for the first time in my life, living on my own. You might expect someone who was diagnosed with an often crippling chronic disease to be terrified to be alone. Not me. I was done being paralyzed by fear. This was the first of many challenges I presented to myself. If I could do this, I could do more. And I did. :)

Admittedly, I did get a bit cocky. Similar to a straight A high school student who goes wild in college the moment they get a little freedom, I got myself into a little bit of trouble. I was feeling so good, I started doubting I even had lupus and that whatever "it" was, was now long gone. I stopped taking medication, was staying out late, drinking too much, smoking a little bit and leaving the sunscreen home. Enter lupus with a humbling uppercut. Nothing too harsh, just a not so gentle, stiff and swollen reminder that it was still there and could bring me to my knees if it really wanted to. I needed to take a different approach, but all I knew was how to take a pill... or three. So that's how I went on for a little while. Taking the meds, acting more like a "good" girl and keeping my fingers crossed lupus lay dormant. It was unnerving, that feeling of being totally out of control and at the mercy of some THING. It was no way to live a "long and happy life" and I longed for some sort of enlightenment, a eureka! moment that would once again enable me to feel like I owned my body, because at this point I didn't. Then, I got a gift.

The day I met my husband is probably the most important day of my life. (And I'm not just saying that because I just spent way too much money on a pair of shoes) Craig introduced me to alternative medicine. Now, don't get all weird on me here, I'm not about to preach and tell anyone to throw out their prescriptions. I'm just a regular person, who kept an open mind and chose to venture down a road less traveled. Now, some might say I only went down that road because the "tour guide" was cute and I was smitten, but that is neither here nor there. ;)

Anyway, after learning I had lupus, Craig brought me a book on natural healing to look at. You've seen it I'm sure, a big bible type book filled with a blurb on every ailment you can think of that lists foods, herbs and supplements that are beneficial to said ailment. My immediate reaction, I will admit, was: "that's very sweet, but come on, this isn't a boo boo." Of course I never actually SAID this, but I was thinking it. Then he told me of his father's fight with prostate cancer and how he cured himself without conventional medications, but with a purely alternative approach and nutrition. It was an unbelievable story coming from a completely believable guy. My interest was definitely peaked, but I still didn't know him well enough to conclude if he and his family were, how shall I say, "crunchy" or if this could actually work for someone, let alone for me. By nature, my first instinct was always to be skeptical of all things, but I was crushing pretty hard on this (younger) guy and what do you know, my mind suddenly became WIDE OPEN. And this was my gift...not the book, not the new boyfriend, not even the inspirational story about someone beating the big C, it was the gift of an open mind. More than any prescription, homeopathic remedy or balanced diet, an open mind has been by far the key ingredient in my recipe for getting and staying healthy.

I have a lot of stories to tell you. They are of great successes and epic failures. Stories that span about 10 years now of trial and error in my personal quest to "one up" the unwanted tenant that resides inside me. Over these years I've learned you make no headway in a black and white world, the real answers lie in the often overlooked shades of gray. It's amazing how well opposing belief systems can work in tandem. I make no claim that I've "figured it out", only that I've figured it out for me. It does stand to reason though, since I am not an extraordinary person, that what works for me, may also work for someone else. And it is because of that reasoning that I'm letting complete strangers into my formerly clandestine life with lupus. If all this babble helps even one person, I'll never regret a single word.

So let me tell you about the first time I saw a homeopathic nutritionist...that was some weird sh*t. Effective, but the open mind REALLY came in handy. I will elaborate...next time.

Tuesday, April 12, 2011

Destination: Diagnosis

"Pray for lupus." - Dr. Repice

After it was established that I would jump through whatever hoops he told me to in order to get well, my first visit with Dr. Repice got much less tense, but no less intense. Not only did he ask me questions NOBODY had asked me before, he listened, really listened to what I had to say. It was amazing. I was in the office of a well respected rheumatologist with a flourishing fifteen year practice - AFTER hours -and never once felt rushed or like an inconvenience. Surely this was a dream... OR,  I was about to get some really shitty news, so God threw me a bone and gave me the best possible messenger. I wasn't dreaming.

About an hour into the exam and Q&A, the visit was winding down. I could feel that he was going to tell me something and it wasn't going to be good. The signs were there and they weren't subtle. "Are you stiff in the mornings?" Yes. (serious look as he makes a note) "Do you get headaches?" Yes. (heavy sigh as he makes a note) It went on and on and the "yes" answers outnumbered the "no" answers by a landslide. He finally put his pen down, took a deep breath and started walking around the room as if maybe movement would make the words come out gentler. He turned to me and said "we'll need to do lab work, but based on what you've told me and what I see, it's one of three things." Time seemed to stop somewhere between that statement and the next. My heart began pounding and I felt a little light headed. Here was the moment of truth. I remember half expecting one of those three things to be lyme disease. Oh, but it wasn't on THIS list. "Rheumatoid arthritis, multiple sclerosis or lupus. Pray for lupus." Whoa. 

How do I explain how that feels? To hear that no matter what is wrong with you, it's been confirmed that it will be awful. Normal people would like to have some kind of emotional support with them when hearing such news. I was glad I was alone. I needed to process this, come to terms with it, before I could burden anyone else with my nightmare and cause subsequent worry. If I had to describe how I felt at that moment in one word, it would probably be damaged. Yeah, that pretty much covers it.

Explaining that rheumatoid arthritis was degenerative to the joints and multiple sclerosis was very hard to manage, the doctor made a very good case for praying for lupus. So I did... and the prayer was answered. Funny how of all the things I prayed for in my 23 years as a Roman Catholic, THIS is the one that gets answered. Not the pony, not the treehouse, not the passing grade on my science regents exam. I get granted lupus.  Oh how "the luck of the Irish" is deeply rooted in sarcasm.

I'm so old now, that when this was happening the internet did not exist in my world. It was the sort of thing where ONE computer in huge NYC agency had it and AOL hadn't yet been launched. If you can imagine, I had to got to an actual library to get information. I dismissed the notion that I had anything else but lupus, because I didn't want either of the other two. There weren't many books on the subject and the ones I found scared the hell out of me. Informing anyone who read them that life as they knew it was over. How encouraging. I read an interesting chapter on the signs of lupus and learned about something called a butterfly rash. Being of all Irish decent, my skin is either white or red, no in between. So uneven skin tone was nothing I ever really took notice of.

That night, after washing the make up off my face, I looked closely in the mirror to see if I saw anything remotely resembling a butterfly shape across my nose and cheeks. What do you know... I had a little lupus on my face. There it was, the notorious brand mark, plain as (and spanning over) the nose on my face.  That my friends is the exact moment I knew, with absolute certainty I had lupus. Not lyme, not fybromyalgia, a nasty drug habit or clinical insanity. Dear Dr. Numbnuts, you're an asshole.

Obviously lab work, along with meeting most of the lupus criteria, confirmed a diagnosis of SLE and antiphospholipid antibody syndrome-a blood clotting disorder. I was told this in person at my second visit with Dr. Repice,  along with a string of things I could no longer do. No birth control pills, no smoking, no stress, no sun, no junk food. I think they have more fun in a nunnery. I found myself asking "can I drink?" Which is absolutely hysterical, because I really didn't drink alcohol at all. His answer: "well, don't lock yourself in a closet with a bottle of Jack, but yeah, you can have a drink...(stern fatherly look) occasionally.

The toughest thing to hear that day and eventually relay to my family, was that I would likely not be able to have children. Getting pregnant wouldn't be the problem, staying pregnant would. The antiphospholipid antibody syndrome would probably make it impossible. I was now not only damaged, I was crushed. But don't be sad, I did have a beautiful baby girl almost 8 years ago. Of course it almost killed me, but then, isn't that the effect all children have on their parents at some point?

Dr. Repice left me that day with the notion that because it was caught early and I was getting proper treatment, I could live a long and happy life. Long maybe, but happy? I was not so sure. I left his office with a prescription for Plaquenil and one for Tolectin and immensely thankful that this chapter was coming to a close...and I lived to tell about it. I was now prepared to tell my parents with confidence that the news wasn't as bad as it could have been and would just regurgitate "a long and happy life". Though despite my best efforts I could not hold back the tears when I spoke of not having children and I regretted even mentioning it.

For the next couple of years I took my meds, had an occasional flare-nothing too serious, but something entirely different was happening to me. I was changing. An experience like this changes a person. I suppose I never really came to terms with what had transpired and ultimately,  I did NOT accept this. I had lupus, but lupus did not have me. I was going to fight tooth and nail to be normal and live the way I saw fit, not the way IT dictated.  My opponent now had a name, a face and somewhere, like all beasts do, it had a weak spot and I was going to kick it in the balls.

You can call this denial, because it was... in the beginning. But it worked for a long while and taught me the power of positive thinking. I learned that "whether you think you can or can't, you're right" (thanks Henry Ford). No longer was I the push over, the pleaser, the textbook middle child. I couldn't afford to be. This was a fight for my life, MY life...and what a bout it's been!

Sunday, April 10, 2011

Pain, Swelling and That Sort of Thing: Part 2

"This is not fibromyalgia." - Dr. Diala Jaber

I had about a 3 month reprieve after that first flare before the next one reared it's ugly face. Spring had come, I threw my sister a great bridal shower, I was back at work and all seemed right with my world, until...

About two weeks before the wedding, at which I was to be the Maid of Honor, I awoke with pain in my knee. The fear that gripped me when I rose out of bed and felt that unmistakeable swollen tightness can be likened to that moment in a horror film when you learn the psycho killer isn't dead after all. A wave of terror came over me that I'll never forget. Ready or not, I was back in the ring taking swings at a faceless, nameless, opponent that had no problem landing blows on me. I needed a trainer, my very own "Mick" but in a lab coat, not sweats, and with extensive knowledge on "unexplained pain".

Whatever this was that was happening to me, was different this time. It came and went from day to day and varied in intensity. At times my fingers and toes were so swollen they looked like sausages, but nothing else bothered me. Other days there were no visible signs but the joint pain was show stopping. Those were the days I dreaded most. Those "but you don't look sick" days, when I felt everyone suspected I was either lazy, a wimp or crazy. You can call me crazy but don't ever, ever call me a lazy wimp. My Dad didn't nickname me "Nails" because I liked a good mani/pedi. I'm a tough cookie, so it ate at my core that people might be seeing me in this light, as a weakling who probably just wanted a vacation. More stress, worse symptoms, time to see a different doctor.

I must have made and canceled three appointments before I actually went to see Dr. Jaber. I was NOT going into that office without at least one sausage finger, I wasn't! So, I kept pushing it off until payday came and I was a freakin' Italian feast. Everything was swollen and as odd as this may sound, I was thrilled. I gave her a brief summary of what had transpired recently, leaving out my last words to Numbnuts, but not the stinging words he left me with. She took one look at me and said "this is not fibromyalgia and this is not all in your head." If ever I wanted to kiss another woman on the mouth it was then, but I contained myself and asked "what is it?" Of course she couldn't possibly know right then, but she did have a very definite answer as to who I needed to see. Would you believe she referred me to Dr. Killpatient? No, I'm totally kidding! She referred me to Dr. Michael Repice. Having worked in a medical group for so many years I had heard his name and good things about him. Apparently so had many other people because it took 3 months to get an appointment. She offered up another rheumatologist, but I decided to wait and how glad I am that I did.

Those three months waiting were riddled with angst. I was miserable all of the time, more so when I was showing no symptoms. I wanted to be an absolute mess when this guy saw me and the truth was, most days I looked and felt fine. I can't imagine wishing for a flare now, but at the time it made perfect sense. I couldn't face another rejection. I was obsessed with making myself sick as appointment day drew near. As it turned out, I was quite successful.

How long to you think is reasonable to wait in a doctor's office for an appointment? One hour? Two? How about four? Yup, four hours. Two and a half of which were with a waiting room full of the same people. Nobody ever went in. They didn't call anyone's name and no new patients came in after me. I started to wonder if this was some kind of new group therapy thing that I wasn't aware of. The kind where we all go in the room together and talk about what ails us like they do in AA. Whatever, I was up for anything I just NEEDED to see this man...today. Then the unthinkable happened. They started telling people they needed to reschedule their appointments. My heart sank to my swollen feet. I was the last person left in the waiting room and his assistant approached me saying exactly the same phrase she had to everyone before: "Dr. Repice is very sorry, he's with a patient right now that is going to require much more of his time than he thought. We'll have to reschedule you."

For a woman who's claim to fame is being "tough as nails" and "no wimp", I broke down like a little girl who dropped her ice cream cone. I begged, I pleaded, I showed my swollen appendages to his assistant and offered to wait until midnight if I had to. With that beautiful no-nonsense face that I've grown to love so much, she thought for a moment and said "wait here." Trying to pull myself together and preparing to be told to go home, I couldn't help but laugh at myself for those theatrics. How embarrassing. But whatever, it worked! "You'll have to wait, but he will see you next."

"Next" came an hour and a half later and the good doctor everyone raved about, walked into the exam room like a lunatic. He slammed the door, threw down my new chart and looked me over. What the hell? He looked at my hands and face, stopped and looked in my eyes. The first words he ever spoke to me were these: "I can help you, but you have to let me help you. If you aren't going to trust that I know how to help you, and won't follow my advice, you've wasted your time waiting for me." So choked up with mixed emotions, all I could say was "please help me." Again with the tears, what a wuss...

I would find out later that one of his patients was refusing to follow his advice and was going to die. He felt he could save her if she would just listen and he spent all that time with her trying to convince her of this. Now THIS man was a doctor...MY doctor. :)

Thursday, April 7, 2011

Pain, Swelling and That Sort of Thing: Part 1

"It's probably carpal tunnel." - Me, age 23

Lupus was never even on my radar for what was wrong with me. Why would it be? I had maybe heard the name once in passing and all I knew was, you didn't want it. So when I started having wrist pain, I was sure it was carpal tunnel. Until the pain went further up my arm, then I was sure I had tennis elbow...the immaculate conception of tennis elbow because I didn't play tennis. Once the pain stretched up to my shoulder though, I stopped making predictions, saw a doctor and that's when the real guessing game began.

QUESTION: How many times can you test a person for lyme disease before you concede that is not what they have? ANSWER: 4. In hindsight, the first doctor I saw, we'll call him Dr. Numbnuts, a general practitioner whom I really should have asked to produce a medical license, was a moron. You must understand, all through high school and college I worked for doctors and had such a respect for and trust in them. At this time in my life though, I had moved away from home, away from MY doctors and was taking my chances on some quack in Queens, NY. He ordered blood work, x-rays, put me on various pain medications, all to no avail. When he didn't know what else to do with me, and lyme wasn't working out for him,  he referred me to a rheumatologist at North Shore LIJ, a very reputable hospital on Long Island. We'll call him Dr. Killpatient. I thought, wow, I am finally going to get some answers. Very excited to see a REAL doctor, I showed up at his office with very high hopes on a beautiful day and strangely, but happily, feeling a little better. Unfortunately for me, Dr. Killpatient, dressed in standard golf attire, was late for an outing or something and spent maybe a total of 6 minutes discussing my issues. He deduced, barely even examining me, that I had fibromyalgia brought on by the stress of knowing my mother was going through breast cancer. "Try and relax. Oh and keeping taking the pain pills your doctor gave you." As he's ushering me out of his office (and his life) I ask, "what is fybromyalgia?" His answer..."unexplained pain." End of visit.

Totally disillusioned and physically upset, I sat in my car for a long while and thought about what he had said. Fibromyalgia? Maybe. Unexplained pain? Obviously. Stressed about my Mom? Of course, only I learned about my Mom's breast cancer after I was experiencing these symptoms. He's wrong, this "specialist" is wrong and if I thought I was scared before, I was mistaken. Suddenly, I was no longer feeling a little better. Crap.

From there things worsened. Pain, fatigue and swelling was affecting all of my joints all of the time. It was no longer safe for me to go to work in Manhattan, I was a definite target and moved painfully slow. If I sat still for any length of time (maybe a minute), it was excruciating to try and get moving again.  Not to mention what was going on in my head. Knowing that my parents were going through their own hell, I assured them I was feeling better so they wouldn't worry. I'm such a middle child.

Meanwhile, you know what is so NOT sexy? Calling your boyfriend to the bathroom to help you get off the toilet...because you can't. Trust me when I say, I gave everything I had to get up myself...I just couldn't. Following that humiliating experience, I made a desperate phone call to Dr. Numbnuts pleading with him to give me some sort of stronger medication to make this all tolerable. He told me to come in to his office in the morning. Ugh, that meant I had to actually get there and despite having a car, I couldn't manage the stick shift or turn my head at this point. I called a cab and headed out to what would be a very defining moment in my life.

Picture with me if you will...a young girl, just out of college, who put herself through school by working and going to school full time. A girl who was always the designated driver, who rarely drank, smoked a few cigarettes here and there but always said NO to drugs. This eternal "good" girl is terrified that she is dying and is inevitably going to have to tell her parents this news.  She is looking for some compassion, some saving grace from her doctor, if even just to hear "I'm admitting you to the hospital"...but no...this girl heard the following, in a thick... Russian... accent: "I can find nothing wrong with you. I think you just want the drugs. If that is not the case, maybe this is all in your head."

Remember all that respect I had for doctors? In an instant it was gone. To say I was blindsided by those "professional findings" would be like saying a gunshot felt like a wet willie. I had just been verbally abused. I felt embarrassed, ashamed and horrified. Stunned, I sat speechless for a good 15 seconds trying to form into words what every fiber of my being was telling me to say, but grace and poise was begging me not to. Finally, like soda bursting out of a can you didn't know was shaken, I looked Numbnuts in the eyes and with tears welling in mine, said "Fuck you." Without another word spoken by either of us, I hobbled off the table, out of the office, onto the sidewalk and had a breakdown right there on Queens Blvd. I'm not one to cry, but my limit had been reached. A nice old woman stopped, rubbed my arm telling me it would be alright and helped me get a cab. In true NY fashion, the cab driver asked me to produce proof I could pay for the cab ride first, not trusting this wasn't an act to get a free ride. Holy hell, right? Very quickly that sadness and fear turned to rage and disbelief. I was pissed and I'll admit, irrational. Probably a good thing I couldn't move very well or I might be typing this from jail. My Irish was up as they say, and I was determined to live long enough to find out what I had and tell this bastard what a poor excuse for a physician he was. And I did just that, a few years later. Incidentally, I didn't tip that cab driver either.

Looking back I have to laugh (it's what I do), this was my first experience with mind over matter. Only I didn't know it at the time. As the days went on I started feeling better without doing anything differently, except in my thinking. My focus shifted from worry to survival, which was powered by revenge. When the symptoms began to dissipate, I thought for a fleeting moment "Oh. My. God. It was all in my head!" How mortifying that would have been and yet wonderful if it was all fabricated from stress. But it was not all in my head, I was simply coming out of a flare and a few months later the same symptoms returned just before my sister's wedding and I returned home...where they bred doctors who knew what the hell they were doing.

Wednesday, April 6, 2011

Dear Lupus: You don't have to go home, but you can't stay here.

­I think I’ve earned the right to joke about lupus, about dealing with Lupus, about lupus medications, treatments and basically all things associated with lupus. Why do I think this? Well, as you may have guessed, I have lupus. Systemic Lupus Erythematosus to be exact and one serious bout with lupus nephritis. Since 1995 my life has been altered in a way I never would have chosen, but then again, I wouldn’t necessarily change it if I could either.

Without going into lengthy detail, I’ve been stiff, swollen, tired, nauseous, poked, prodded, injected, rejected, dizzy, hospitalized, traumatized, broken hearted, depressed, suppressed, frustrated, weak, overweight, forgetful and full of roid rage. These coupled with enduring multiple kidney biopsies, pericarditis, pleurisy, chemotherapy and a doctor who thought it was “all in my head”, in my opinion gives me the green light to make light, of what can be at times, a very dark existence.

While it’s never been in my nature to wallow in self-pity, I will admit I’ve asked the heavens more than once “why is this happening to me?”.  Not in any melodramatic fashion, just a simple question with no real answer, simple or otherwise. At various times, usually the more serious times in my medical history, I would revisit this question. One time after mulling it over for a while, I came to the conclusion that of all my mother’s four children, I am the only one who could handle the by products that come with lupus with any shred of dignity. Those bullies (read: loving siblings) that tied me up in the basement, used me as a gopher for their every whim, teased me, made false claims against me and never let me lose sight of my “middle child” status, actually prepared me for the sucker punch life had in store. They toughened me up and to quote my oldest sister and worst offender, “built character” and for that, and many other reasons, I love those wimps.

However, when I realized that the “My Siblings are Sissies” theory was really just suppressed childhood anger, I began to wonder again. It became more of a search for a scientific reason than for any spiritual one. Would all my years of drinking diet soda with aspertame do me in? Was it because I got that really bad sunburn every summer?  Too much tuna?  Was my hometown on Long Island a lupus black hole? Who knows why and does it even really matter? Truthfully, it depended on the day. 

After many years and "seasoning" in the art of managing lupus, believe it or not, I did come to terms with an acceptable answer to "Why Me?" about 4 years ago and there was no science behind it. I'll get to that later though...

Before I delve into the most personal nooks and crannies of my life with you through blog posts, allow me to introduce who I've become over these last 15 years. I'm a wife, a mother, a full time graphic designer, a part time entrepreneur and most importantly, as confirmed at my last check-up, HEALTHY. I love my family, they crack me up. My father is the funniest person I know.  I love to laugh, but am often too serious and can keep a secret like nobody's business. My diet is mostly vegetarian, but I'm not a nut about it and fear not, I don't preach. I eat right (most of the time) and exercise (most of the time). I have no time to be sick, I'm very busy planning my next adventure. So there you have it...that's me. 

I have no real plan for these blog posts, they will be in no particular order nor will they appear on a particular day. The first few will likely be about my LONG road to a diagnosis. I can't promise you'll laugh or cry or even be inspired. All I can promise is that they will be honest, detailed and probably riddled with sarcasm and my own special formula for humor...which I hope you find palatable. If you have lupus or know someone who does, I will bet you'll be able to relate to me on some level. That's all I hope for really, for someone to be able to relate. Fifteen years ago, I had no idea what lupus was. Not many people did. I was young, terrified, felt branded and broken. Books I read advised me to mourn life as I knew it and start a new, less active, less stressful one with few hopes and fewer dreams. It seemed at the time I was being encouraged to surrender to this beast, take the lashings when they came and be thankful if I lived through the pain. $#@* THAT! I could not and would not relate to this mentality and subsequent course for my life. So I felt very alone despite a great support system. Unlike cancer or parkinson's there was no lupus hero to look to for inspiration and affirmation that it will be alright.  Oh how I wanted one then.

Call it genetics, stubbornness or denial, but I found a very different way to deal (read: fight) with lupus that works exceptionally well for me. I hope you can relate. 

If you got this far...wow... thanks for reading!