My Story

This is a really long entry, but I think it’s worth the read so that you have an idea of where I’m coming from.

 

My Struggle

 

I turned 40 this year and I’ve really started to reflect on life.  I think 40 is the age most people stop to think about where they’ve been and where they’re going.  For me, it was a short thought process.  I know where I’m going with my life and I know where I’ve been.  But if I really stop to think about it, if I really stop to think about what in my life was most important/monumental/life-altering, there’s one thing that I can say truly shaped me into the health crusader I am today. 

 

 

The short story is that when I was 25, at the age when I thought I was invincible (i.e. cute, skinny, recent graduate with a job, car, etc), I received the biggest wake up call of my life.  My health, which up until that point had been good took a downward spiral and threatened to take control of my life, if not my life itself.  It took me quite by surprise.  There were no warning sign,  no flashing lights, and no time to prepare.  I remember waking up day after day thinking “something isn’t quite right.”

 

My symptoms spanned every major specialty you can think of:  gynecological, autoimmune, dermatology, gastrointestinal, and the list goes on.  I wasn’t sure if waking up at 2am each morning soaking wet with sweat was better or worse than the hives that itched so much I wanted to tear my skin off.  Eating became a chore because I wasn’t sure what my body would or would not react to.  My menstrual cycle was all over the board, sometimes not even bothering to show up at all.  Perhaps most uncomfortable of all was my skin.  It was so dry and thick that doctors later had trouble getting through to my veins to draw blood.  What annoyed me the most was that I shed like crazy into massive piles in my bed and clothes.   Believe it or not, these are just a handful of symptoms that rocked my world on a daily basis.

 

Dr. Do Nothing

Like most people, I figured I’d see the specialist that dealt with the symptoms I was experiencing, right?  So, all I needed to do was open up my employer’s healthplan booklet and select a doctor, right?  WRONG.  To add to my misery, my employer at the time didn’t offer PPO coverage; we had, you got it, an HMO. 

 

I remember sitting in the office of my primary care physician, crying while explaining my symptoms.  He took me by the hand and told me that he knew I was very ill, but there was nothing he could do.  You see, his hands were tied because in an HMO patients that are seriously ill have to jump through quite a few hoops to get any type of treatment.

 

Determined not to be defeated, I found another job that offered PPO insurance and kissed my then current employer goodbye.  This time, I opened the health plan booklet and starting setting appointments with a string of specialists.  I saw every type of doctor imaginable, including a dermatologist, internist, endocrinologist, a MD with a holistic approach, a chiropractor, gastrointerologist, an immunologist, and a doctor of Chinese medicine (whew!).  One of them even looked me straight in the eye after I listed my many symptoms, slowly closed his folder, told me I needed to see someone else and asked me to leave.  You would’ve thought I had the plague!

 

Aside from feeling like one doctor just passed me to another, I remember thinking that none of them had a clue.  They consoled me and made me think I was getting something out of the visit and then they’d shoo me out the door.  Some of them ran test after test, only to tell me that I was as healthy as a horse.  Funny, not one of them could look me in the eye while telling that lie.

 

Others argued me down when they came to a conclusion that I didn’t agree with due to my lifestyle.  I remember getting a colonoscopy and the doctor telling me that he knew I was abusing laxatives because my colon was so black throughout.  Imagine his disappointment when I told him that I’d never taken a laxative in my adult life (my mom used to give us prune juice on occasion when we were kids).  He seemed more interested in proving me wrong than digging deeper to find the real problem.  Most doctors won’t treat something they can’t diagnose.  The problem is that most give up when they can’t readily diagnose a problem.  Or, they give it some nebulous title like Chronic Fatigue Syndrome….there’s something quite useless about labeling someone as always being tired when that’s what they came to see you for in the first place???? 

 

I wasted countless hours and spent thousands out of my own pocket to see one Dr. Do Nothing after another.    It still brings tears to my eyes when I think about the countless hours, days, weeks, months, and years of discomfort I experienced during that time.  The doctors couldn’t help so I felt as though my hands were tied.  I mean, what could I do?  I’m not a doctor.

 

So, I suffered.  I suffered silently and did my best to live a normal life.  I let the symptoms and whatever illness I had control my life while I tried to hide it from others. I wore long sleeves in the heat of the summer to hide my skin.  I wore jackets, turtlenecks and long johns at the same time to hide the fact that I was freezing in an office that was approximately 70 degrees.  I ate lunch alone so that no one could see that my diet had been relegated to baked fish and steamed vegetables day after day.  I smiled and politely said no whenever anyone offered me anything to eat.  I excused myself from family gatherings early because I just couldn’t keep it together.  I went home day after day, curled up on the couch and waited for sleep to come.  I hoped that each day would be better than the last.

 

My Discovery

 

My father is one of those people that has a serious thirst for knowledge.  I mean, he loves learning about anything and everything.  I think a bit of that rubbed off on me. 

 

One day, I decided I was tired of being alone.  I knew there had to be other people out there like me.  So, I started surfing the net.  I found all types of message boards with people who were asking for help for their symptoms.  I started interacting with some of them and getting ideas on how to mitigate my symptoms.

 

It made me feel alive.  I went from lying on the couch to sitting in front of the computer trying to make sense of what was going on in my life.  Reading the troubling stories of others who were undiagnosable and appeared to have visited the same Dr. Do Nothings kept me going.  It was a relief to know that I wasn’t the only one out there suffering.  I guess you could say that I found a sense of community.  Most encouraging were those who’d learned what lifestyle changes to make in order to have some semblance of a life. If they could do it, so could I.  

 

Becoming a Health Detective

 

I began to see patterns in my symptoms.  I drew diagrams and made notes that helped me understand what was going on in my body.    What amazed me most is that my symptoms appeared to come from nowhere.  I’d been healthy throughout my life and now all of a sudden I was allergic to most foods, dogs and dander (which is everywhere).   How could that be??

 

That very question added fuel to my quest for knowledge.  I began to see doctors as a means of getting test results and discarded those that gave me what I felt were meaningless clues to what was going on.  Sure, I could’ve started allergy shots for my food allergies or some type of steroid to mitigate my skin problems, but I decided early on that this wasn’t acceptable.  I wanted to know more about why my body was suddenly betraying me and I wasn’t interested in treating the symptoms.  Nope, I wanted to take out the root cause.  Period.

 

In the meantime, I researched and found ways to mitigate my symptoms through diet and exercise.  It felt good to sleep through the night or to take a shower and not have to worry about breaking out in hives and uncontrollable itching.  I found ways to make myself comfortable without sacrificing my goal of eradicating the root cause.

 

Taking Control!!!

 

My notes grew to binders and binders grew to boxes.  I organized everything. There were symptoms, tests, doctors visits and supplement documentation  to put in order.  My journals were extremely detailed and contained the who, what, where, when and why of all my symptoms.  

 

I strongly believed that if I could mitigate my symptoms then surely I could find a doctor that could help me find the source So, what started out as a quest for knowledge on how to deal with my symptoms, became a quest to find someone that could help me get rid of the cause altogether.  .

 

I was in control and no one had more to gain or lose than I did.  I began to interview doctors (or their staff) to find out if they practiced in a way that would benefit me.  If someone didn’t measure up, there was no reason for me to continue to see him or her.  I decided who I was going to work and who I was just using to get more valuable tests.  It wasn’t enough to check licensing boards (that does help, though).  Heck, doctors could graduate at the bottom of their class and still become doctors. I had to go deeper.

 

It was a long haul, but well worth the effort.  I finally stumbled upon a MD who had an eastern and environmental flair.  He was also they type who wasn’t afraid to ask why and look at things from different angles.  Our first session lasted for hours and he didn’t seem in a rush to push me out the door.  During our follow up appointment, he went through all of my tests in detail and gave me what he believed to be the root cause of my problems:  mercury poisoning, the result of deteriorated/imperfect dental work.

 

At first, it was hard to believe, but I’d already learned enough to know that his tests were accurate and that he wasn’t just speculating.  So, I started treatments and the results were astounding.  My life returned to normal and I was able to socialize with friends and family once again.

 

My doctor worked very close with me for about a year and a half.  Once the mercury was under control, we started addressing those health issues that the mercury could possibly have caused, such  as my thyroid.  Working with him over the years has been like peeling an onion.  We started with one challenge and then moved on to the next. The ordeal has not ended, but I do have my life back.

 

I wonder sometimes: what if I hadn’t started my internet research, what if I hadn’t finally stumbled upon Dr. Do Something, what if I was still just coping every day? My life is back, but it’s not perfect, but then whose is? My thoughts turn to rage upon occasion: why didn’t all those Dr. Do Nothings even refer me somewhere or to someone, why did I have to suffer so, why did I even have mercury in my mouth to begin with? Then I catch myself and count my blessings…. how many others are still out there searching, the undiagnosable trying vainly to explain their suffering to yet another Dr.Do Nothing? How can I share, how can my experiences help others?

 

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