one voice..............unheard

Today was.............unpleasant. I left for work today wondering how the day would unfold; professionally, emotionally, personally, physically. When I set foot out the door for the first time, I had no idea what lay ahead. The last few days had been re assuredly warm and unseasonably pleasant. What concerned me most was a less than stellar weather forecast. Not just because seasonal affective disorder had been unusually harsh for me over the last six months, but also because I've learned that drastic changes in the weather; be they good to bad or otherwise, seemed to play a direct role in what the doctor's are calling a Lupus-like illness. Changes in the weather affect a lot of people, but it seems at this point that drastic changes in weather patterns almost certainly mean a significant increase in pain.

A couple of years ago, I found myself in the doctor's office having a very difficult time getting over a particularly nasty cold. What made this situation unusual were some symptoms I began to present which didn't seem to be associated with your average garden variety cold. I have been experiencing joint pain throughout my body on and off for a few years. What made this instance unique was the fact that the pain was symmetrical throughout various joints of my body in addition to some swelling in both hands that left them nearly twice their normal size. After a brief examination, the doctor ordered some blood work and sent me on my way. A few short days later, I received a phone call from his office to schedule a follow-up regarding the test results. During the visit, the doctor commented on some of the findings using terminology I hadn't heard before. He mentioned some conflicting results involving my ANA titer and sed rate. A brief explanation revealed that these test results indicate the possibility of an autoimmune abnormality but his lack of expertise in this field prevented him from making a conclusive diagnosis. With that, he sent me to a rheumatologist.

After some extremely expensive tests ordered by this rheumatologist and a series of office calls, I was no closer to an explanation than I was when the symptoms first presented. He dismissed me saying that based on all the tests that had been done, he could not definitively indicate the presence of either RA (rheumatoid arthritis) or SLE (Systemic Lupus Erythematosus) but did add that there are probably thousands of variations of these illnesses out there and this may be one of them. Rather than continue investigating my problem further, he sent me back to my family doctor who would likely treat the symptoms. Having been dismissed by the rheumatologist, my family doctor now refers to my condition as arthritis. In my experience, an arthritis diagnosis is very similar to a virus diagnosis. In both cases, they are doctor-speak for, "I don't know what it is."

I've told my story to a number of family and friends and on numerous occasions they have encouraged me to get a second opinion. If circumstances were different, that is what I would have done. However, the out of pocket expense to get that second opinion is cost prohibitive. Because my initial visit to the rheumatologist took place before I had health insurance, it falls into the category of "pre-existing conditions". Even if my insurance company did cover aspects of a second opinion, the co-pays and non covered tests and/or procedures would still be out of reach for me. So, what are my options?

Some have told me to press the issue with my family doctor. I fear that since the main issue involves relief from the pain, I will be labeled simply as someone trying to get pain medication. Since I don't have a conclusive diagnosis, the non-narcotic medications that are used to effectively treat autoimmune diseases are off the table. Others have suggested that I explore programs like medicare. Our income disqualifies me from that kind of coverage. Others have suggested more non-traditional approaches such as acupuncture and hypnosis. Simply put, I am not fooled by snake-oil peddlers.

What I fear is a concern that affects hundreds of thousands of people who are in diagnostic limbo like myself. Pain can be and has been an extremely powerful motivating force. And those of us who find ourselves in this position will eventually reach the point where we will take whatever means necessary to escape the pain. None of which are safe, let alone effective. But to someone who sees little hope ahead, anything is better than nothing at all, no matter what the risk.

What Obama-care promises is more stream lined and effective care through vast databases of patient records. Although this initiative has at least the potential to succeed, doctors must first cast aside old treatment paradigms and utilize this modern technology to yield better treatment results. It is my hope that one of the first changes made involves pain management. At this stage in the game, doctors treat pain conservatively in light of the numerous cases of malpractice that are filed each year. In a large percentage of these cases, doctors are being sued when their patients misuse the drugs they are prescribed. Is there a solution to this drug problem? You bet there is. Kill all the lawyers. If people misuse the drugs they are prescribed, then they must face the consequences.