If you've read my story, you probably realize there are a lot of details about my symptoms, conditions, experiences, doctor visits, treatments, timing, medical history, etc. You might wonder how I can remember all of this information, or at least how I keep it all straight. Also, since one of the most important things I've done for myself is make correlations -- e.g., correlations between my various symptoms, or between changes in those symptoms, or between a treatment and its effects -- you can appreciate how important it has been to have a good historical record. This is especially true because many of the "eureka" moments where I make links and associations come long after the events occurred. So, what information do I have to rely on?
Well, luckily, I'm pretty good at documentation. Here's what I work with:
(1) A daily medical journal going back four years. I started this when things were looking really bleak, shortly after my leg/groin/back pain started and my eyes and stomach were "flipped out". Basically, it was a coping mechanism. Things were changing so fast (for the worst) and in such an unpredictable fashion that I knew I needed to write it all down, or I would forget what happened and when. While I often thought I could just remember when something significant happened, especially at the time it happened, I quickly learned that this was simply not the case, and what is fresh in memory one week may fade fairly quickly in another few weeks. So, perhaps not surprisingly, the journal has been the single biggest help in deciphering what has happened to me, and in finding ways to get better. I think so many of the things that happened to me would simply be lost forever if I hadn't memorialized them. I try to record any noticeable change in my symptoms: energy level, mental state, sleep problems, eating habits, pain levels, etc. A side benefit of doing this is that it has made me extremely aware of how I'm feeling at any given moment, which has helped me to experiment with different treatments. Also, when I first started keeping this journal, at a time when it didn't seem like there was any hope and new problems seemed to be cropping up everyday, the journal proved to be extremely therapeutic. I guess it was a way of legitimizing everything that happened to me, to sum it all up for each day and see it as a process that, even if it couldn't be controlled or predicted yet, could at least be recorded.
(2) Medical records and test results. These records, which I obtained from nearly every one of my doctors, have proven extremely valuable in seeing what was going on with my health, and when. They are particularly useful and interesting because a third-party (the doctor) wrote up not only my symptoms and story (as they framed it by asking specific questions), but also their thoughts on what I was experiencing and/or differential diagnoses. The lab test results show changes in blood chemistry, diagnostic results for scans, and outcomes of important tests like the discogram, etc.
(3) Write-ups from my doctor visits. Much like my realization that if I didn't record my daily health changes, the information would be lost forever, I also realized that the extensive information I obtained from my doctor visits needed to be recorded. I saw a lot of doctors, a lot of times (as I noted in the "about" section, my total medical expenses exceeded $100k), and I was constantly getting new results from tests, new strategies for treatment, new thoughts on what might be wrong with me. Also, to determine what questions I should ask at my next visit with a particular doctor, I needed to understand the information that had been exchanged at the previous visit and see where holes existed, what factors had changed since that time, etc. Again, right after a visit, you just sort of assume you'll remember the important points of that visit, but when you're dealing with such a complex medical picture as my own, this simply isn't possible. Thus, while it was a huge pain-in-the-butt, after every important doctor visit I would force myself to sit down and type up a summary of what had transpired. In the end, I was so thankful that I forced myself to do this! Because I could type a lot more for these occasional "write-ups" than I could write day-to-day in my medical journal, these write-ups are great snapshots into what I was experiencing at various points in my progression. Plus, I have a great record of what my doctors told me, asked me, and recommended, at almost all of my appointments. These write-ups have proven to be invaluable.
(4) Medical insurance summaries. An important part of understanding the timing of when I was being treated, and for what, is documentation of every single doctor's appointment, diagnostic test, and therapeutic treatment that I have had. Not to mention, when you deal with as many health providers as I have, you'd better follow insurance payments to those providers, because there are going to be mistakes -- a lot of them. I can't even estimate how many hours I've spent, as patiently as possible, trying to sort out billing and payment errors -- often two, three, or four times over the same issue. I certainly sympathize with anyone receiving medical care in this country, because you've got to know how to play the game, or it will bite you. Anyway, I have good spreadsheet data and insurance paperwork on all medical treatment I received, when, and for what (as well as the payments I made). I have just under 350 medical entries for the past four years, substantially decreasing in quantity over the years (thankfully), many of which I paid for completely out-of-pocket because insurance would not cover the charges. In other words, I have paid a not-insignificant portion of that $100k in medical costs.
(5) Prescription drug records. Given all of the drug therapies I've tried, it has been very important to be able to see what I tried and when. I have found one of the easiest ways to keep an historical record of the drug therapies is from the prescribing information you get from the pharmacy with a prescription -- e.g., the "For Your Information, Questions? Ask Your Pharmacist" flyer. It usually lists the drug, the date, the directions, and the basic prescribing information. It is a great way to memorialize prescription drug history, and a good source of information about those drugs.
(6) Miscellaneous observations. I type up lists of particular changes or things I've noticed. For example, I created lists such as "Things That Have Gone Wrong Since the Start of the Illness", "Things Improved Since Start of First Chelation (DMSA)", "Improvements Since DMPS", at the time these events occurred. This is an easy way to see quick summaries of symptom changes.
(7) Research. While I haven't worked for nearly two years, I have spent every day thinking about my health, designing therapeutic experiments, postulating various theories, monitoring other friends' results with chelation, keeping close tabs on my own symptoms, and, perhaps most of all, researching. I've read books, articles, scientific papers, websites, etc. I keep files full of these documents. The Internet, in particular, has been very helpful as there is a lot of information (way, way too much information) available on these issues. Also, databases like the U.S. National Library of Medicine's "PubMed" database, a searchable, free database that includes abstracts from scientific papers in over 4,800 journals published in the United States and more than 70 other countries (primarily from 1966 to the present), have been invaluable. How amazing it is that we have access today to such a wealth of information that really fulfills one of the key missions of science -- to be widely disseminated so as to be a building block for additional scientific advances. I feel very fortunate to be alive at this point in history. In any event, one of the most important sources of information to me by far has been other peoples' experiences, although there are not that many good sources of this information. This was really one of the only ways I could check to see if symptoms or effects I was experiencing from a treatment were consistent with what others had experienced. Recognizing the importance of this information really was the genesis of the MercuryLife project.