Friday, July 15, 2005

My2cents: Cause vs. Effect

I will give you my perspective and hopefully you will find it useful.

It took me a long time to differentiate between taking care of myself and trying to stop an undiagnosed pathogen from spreading (i.e., trying to save the world). Originally, I thought they were the same, but I have come to conclude that they really are two very different things.

One is cause, and the other effect.

For some time, I was chasing a diagnosis (cause). I was traveling all over the place. I was spending thousands of dollars on flights and out-of-network healthcare costs. Although all part of an amazing adventure, which would make a great book, I concluded it did not really do anything for me.  I realize that I probably know more of what I don't have than anybody on the planet, but diagnostically speaking I am in no better place than when I started out.  Don't get me wrong, if someone wants my blood, my doctors will happily ship it to them. I have had my blood shipped to multiple scientists and Rx companies. I have been contacted by scientists overseas to facilitate overnight worldwide shipments of my blood.  Facilitated by the United Nations, I have traveled out of the United States (twice now) and have met with folks that most people have only read about in textbooks. I have tested for microbes that my physicians had never even heard of before.

However, I needed to learn to differentiate between diagnosing the cause and treating the effect.

There is a big difference between meeting with a doctor for symptom control (effect) and working with a scientist to detect the underlying pathogen (cause). Although a few bad seeds definitely tainted my opinion towards the rest, I can truly say that my present day doctors rock! I do realize that I am blessed to live in Boston. I do realize that Boston is the medical research Mecca of the world. People travel from all over the world to meet with the doctors I see day-to-day. The Mayo clinic turned me away a couple months ago saying "if you can't get in Boston, you can't get it here." Generally speaking, I do realize that the researchers, universities and scientists in this city are second to none.

I concluded that my systemic illness (cause) has no relevance to me any longer. It doesn't matter how I got it. We are all just animals and that is what viruses do. I find no guilt or shame in it. People get sick all the time. People get cancer all the time. People live. People die. I am no different. I certainly can't be reliant on other guys to give me their medical files (although I have tried). Regardless, my body and my blood speak for themselves.

My systemic illness (cause) has no bearing on the care my physicians provide to me (effect). My doctors will continue to treat the effect of my undiagnosed pathogen, not the cause. Even if I did have a systemic diagnosis (cause), my clinical doctors have told me that they wouldn't treat me anyhow because it would be new to them too.

I am not convinced I would want to be on anti(retro)viral medications anyhow, as there is no proof that those meds really help. There is equally as much evidence that they're toxic and will kill you, as there is saying that they will increase your longevity. I have had an Rx company offer them to me. The CDC cautioned me, however, that opting into experimental treatments would alter the composition of my "med-naïve" blood ultimately interfering with the viral culturing process. Rather I am taking a holistic approach to healing that involves a lot of yoga, meditation, and Eastern remedies. My goal is to keep myself as healthy as possible, because I have zero control over any of it. Nobody does.

SO HERE'S MY2CENTS: If the test doesn't exist in your doctor's office and you are not in a medical research program, it really doesn't exist anywhere else. And even if you were systemically diagnosed and you are not in a medical research program, your doctors will not put you on treatment for it anyways. So, what difference does it make?

Get over the need for a systemic diagnosis, because being diagnosed will not make you feel any healthier or any sicker.  It will only label it.

By the Fall of 2003, I had dropped to a size 2 (over 20% weight loss, ~30lbs) in a 4-month timeframe. I started losing all my muscle mass {remember I was a triathlete}. I would get winded climbing a flight of stairs. My eyeglasses needed to be resized because they kept sliding off my face, even my cheeks started losing their fat; I took 4 links out of my watch. Apparently, my EX-doctors seemed to think that wasting syndrome is driven by anxiety. They would talk to me like I was a naive 16 year old: "ohhhhhhhhhhh, yooooooouuuu poooooooooor thiiiinnnnggg, did your boyfriend dump you?"  I looked anorexic / bulimic.  How one is supposed to just "get on with your life" when their legs are twitching and they wake in drenching night sweats @ 4AM is utterly beyond me.  It horrifies me that my EX-doctors, knowing the subject matter we are discussing, continued to tell me that I "should be out developing relationships with men."  Here I am telling them point-blank, flat-out, not-buts-about-it that I have an infectious disease, and they kept saying that I had "an irrational fear of diseases" and would shuffle me over to social services.  It made me realize that their ignorance is the perpetual problem.

I looked like a skeleton.

The lack of proper supplements and nutrients only exacerbated all my symptomatology (driven by my unknown viral illness). Everyone who knew me would stop me and ask if I were okay. Holding back the tears, many would say I could be a model. Albeit an extremely unhealthy way to lose weight, I was wildly excited to start buying clothing off the discount racks -- the items that no one else ever fits into. {Work with me here, I needed to find a silver lining about my undiagnosed idiopathic disorder}. I got tired of listening to my EX-doctors saying stupid things to me like: "Did you call your psychiatrist today? Let me call one for you." Very very reluctantly, I started seeing shrinks to prove to the doctors that I did not have a mental disorder.

GO BIG OR GO HOME: I got a psychotherapist AND a psychiatrist. My whole life revolves around fact, logic, sequence and order. It only takes ~5 minutes with me to know that I am a perfectly normal, logical, enjoyable individual that has a million better things to do than to concoct valid symptoms of an undiagnosed disease. I would go to their offices and rant for hours and hours on end about how eff'in stupid my EX-doctors were. I actually found it to be very therapeutic! :) If you are in my shoes, there is no doubt you are going through a great deal of emotional turmoil, as coming to terms with your mortality at such an early age is no easy task. While coming to terms with my deadly incurable disease that no test can detect, and because it can not be detected it can not be treated, I had to deal with my EX-doctors telling me that I has a psychiatric disorder. Don't get me wrong, it was my EX-doctors that were the primary root of my anxiety (And I quote: "This country does not care about you. The world does not care about you. Stop writing letters because nobody cares about you.");  How are these doctors allowed to practice medicine?  Don't they take an oath to 'first do no harm?'  Can you hardly believe that my deadly incurable disease was actually a secondary factor to dealing with their B/S?

I still see both my head doctors to this day, so I will always have someone (with credentials) that can vouch for my sanity. They will tell you I am one of the strongest women they have ever met. I remain extremely bitter, but am trying to channel my anger into making a difference because I truly do not want anybody to go through what I have been through in the past two years. Challenge me, because it will only make me stronger. I call it --> FUEL.

My plight is no different than running a triathlon. There is a point in all endurance races when your physical conditioning will only take you so far. You typically end up relying on mental abilities, adrenaline, and a whole lot of supporters cheering you on to get you to the finish line. You are not competing against anybody else--->You are competing with yourself. I have come to understand that my chronic illness is 90% mental. Do not let anything distract you from your goal. Purge any negativity and overcome all divergences. Never give up fighting for what you believe in. You can do anything that you set your mind to with determination, inspiration and perseverance.

To this day, I look fabulous on the exterior. How ironic. My body feels like it is battling itself from the inside out and I look great. If you knew me 2 years ago, you know that something is seriously different but probably could not pinpoint it to any one thing. But, for those who have just met me, they would be none-the-wiser that I am a pint-sized walking infectious disease unit. I sleep 12-14 hours per night. In my wake time, I focus on caloric intake. The excitement of guessing which body part is going to flip out next truly adds to the fascination of my idiopathic immune disorder. I put my head in-the-zone and I play mantras through the back of my mind (..."Headstrong to take on anyone"...).

My point in telling you all this is because what I learned is that food, sleep, and exercise (regardless of how tired you are) are medicine. I have since gained back about 10lbs and I have yet another whole new wardrobe to show for it. Also, I learned that family is not just about birthdays, Sunday dinners, and celebratory events. Life is a rollercoaster and they truly want to help. If you are going through what I am going through, please talk to your friends and family about it (hire 10 therapists if you need to).

My family and friends have provided me unconditional love and support. It has been truly profound to have scratched the surface of a support network to realize how rock solid it is. They accepted phone calls into the wee hours of the night and are always there to listen when I randomly show up on their doorsteps, sobbing. My family and friends have kept my life as normal as possible by continuing to schedule dinner and movie dates. They buy me inspirational books and lemon-themed knick-knacks. They started driving me to doctors' appointments (Believe me, your doctors take you much more serious when you show up with your mother, in tow). They picked up groceries for me and helped premake hearty meals, so I could focus on weight gain. They took walks and attended meditation/yoga classes with me. My family and friends kept me focused on moving forward, while making peace with my past. They helped me embrace my new life. As I watched my career coming to a screeching halt, they helped me focus on the fact that I had my own namesake charitable organization. They helped me understand that I am living with a chronic illness, not dying of one. They made me appreciate how truly blessed I am to have them in my life.

My family and friends brought in doctor friends who I could talk to casually. Through a lot of coaching, I learned to work with a flawed medical system. You can not change anybody else, you can only change yourself. DO NOT, I REPEAT, DO NOT UNDER ANY CIRCUMSTANCES talk to your doctors about other people's symptomatology and ailments. They do not care, and they are not trained to think outside the box. Scientists like theories (cause -- and clusters of sick people), not doctors (effect). Also, doctors do not like when you jump to the punch line before they have gotten there. Doctors may be well-researched in academic, applicational and clincal medicine, but not all doctors not are a smart as you and they certainly do not live in your body.

I learned that a doctor's job is not to diagnosis you. A doctor's job is to take care of you. While a diagnosis often helps them determine how to care for you, it is not their primary objective. Also, contrary to popular belief and insurance pressures, doctors love performing tests.

It's not my fault the healthcare system is broken...I tried to fix it, but no one seemed to cared. So, as the mantra goes: if you can't beat them --> join them.

I learned to play dumb. Tell them what is wrong and let them fix it. For example:

Me: My chest feels likes its being crushed. I get so winded and fatigued. My throat is clogged and my sinuses torturous.

Doctor: Let's order a lung cat scan and a barium swallow. I will write you a prescription for Nasonex. Let's follow-up in 2 weeks.

Also, if your doctor thinks he is GOD, fire him. If your doctor is not listening to you, fire him. If your doctor is not taking you seriously, fire him and get a new one. Remember you are the customer and if you do not fight for yourself nobody will. There are a lot of great doctors out there and it just takes some time to find the right ones. Remember only 1 in 10 of them graduated in the top 10% of their class.

Once I was able to differentiate between taking care of myself (effect) and trying to stop an undiagnosed infectious disease from spreading (cause), I find my plight far more fulfilling and far less frustrating. I look at it like this: When I contact a senator or congressman, I am a humanitarian. I am no longer fighting for my life. I am now fighting for theirs. I no longer need the help of the CDC or the NIH or the politicians. Rather, they need me. If they choose not to listen it does not matter to me, personally, because I will still be sick (effect) and my undiagnosed disease (cause) will still be in their blood supply.

I can only be happy with what I am able to accomplish as just one human being, who has set out to save the world. My life has more meaning and more purpose than I ever thought imaginable. Like Shackleton's Legendary Exploration, it truly has been an amazing journey.


P.S. - If you are part of a cluster, please consider reporting yourself to your public health department. I know that they still do not care about me, but if enough people choose to report themselves, public health officials will start to understand what a BIG, BIG problem we are sitting on. These people work for you (not vice versa).