Thursday, March 02, 2006

Re-Opening Pandora's Box

In the Greek mythos, Pandora's box contained the darker sides of humanity and were unwittingly unleashed upon mankind, inducing incalculable suffering.

This is an interesting take on the drives and motivations of human nature, and may offer some glimpses into the Athenian search for virtue which so occupied the culture to have given rise to this and other tenets of early psychology. The investigation of this, however, is not what I'm writing about.

For me, I'm abusing the alliteration. This box represents for me all the ills and difficulties associated with medical malfunction, and the contemplation of one's demise.

Several years ago I was in phenomenal shape, and well appreciated the fact. I ran cross-country, walked or biked nearly everywhere I went within 10 miles, did hip-hop and break dancing, and even fairly acrobatic martial arts - all with excellent stamina.

Then, ever so slowly, that stamina began to decrease. I was exercising more, not less, and had made no appreciable changes in my diet or schedule. And yet - I found myself becoming weaker after exertion, and at times almost uncontrollably tired. Eventually chest pain began to set in, complete with radiance to the left arm, acute pinching sensations in the rib cage, and a nasty coincidence with slurred speech, pale complexion, and dilated pupils.

Really awful times, y'know?

This was in my late adolescent years, and so still at the behest of my Mother in all medical issues. The impression I have from the experience was that she was eager to see the matter done away with so as not to be inconvenienced. After a few visits to the family Dr. (a pediatrician - qualified generally, but a little over his head and a little too ready to listen to mi madre over his patient) I was finally granted a referral to someone who would perform a stress test.

Stationary bicycle test, lots of wires, and culminating with an arterial blood gas draw. However: I'll drop this guy under "quack." I was unable to speak due to the breathing hoses attached to my face, but at the first signs of strain he called the test done (when the intent is to be taken to a point of exhaustion), drew the blood and left the room. I made myself known to his assistant that I hadn't completed (once I could communicate in anything more than a vague gesture), but he also did nothing (though was a little surprised that I felt I was incomplete). Dr. Quack scanned the results of the lab work, and on the next week's follow up told me I was simply out of shape (having only scored into the 70th percentile on my exercise performance). The End. Additional complaints about chest and arm pain fell on deaf ears and that was the end - for him, and for my Mother.

The aforementioned family physician decided to call it some flavor of asthma and gave me a couple of inhalers - which were nice stimulants, but didn't provide any long term therapeutic benefit, and were discarded after a short number of months. My investigation continued, however, and I finally found an intersection of symptoms which came close to explaining my condition:

Pulmonary Hypertension.

Of course by this point I had already been swept under the rug, and the independent medical investigation of a teenager doesn't typically merit much credit by the professional community. Meanwhile, I became increasingly suspicious that this was actually the source of my woes, and looked more into its origins and prognosis.

At the age of 17 I had to come to terms with the fact that, were my investigation accurate, I would have at most 20 years left in a life I could expect to become more and more miserable as the disease progressively disabled me.

The requisite tests were not performed, I was still considered to be a melodramatic blob, and I had no effective and knowledgeable advocate as would be required to establish or rule out the possibility of the disorder. The following summer I moved from Seattle to Utah in order to pursue my independent technology consultancy (a way of getting an education on the cheap and funding my geek-toy habit), as well as renew some family ties. In doing the move, I left insurance behind.

Once in Utah I could only afford 1 more appointment - which, being a new start, left me trying to cram everything into the single visit. I got a chest X-Ray while I was at it, which was negative, and was told to try and encounter less stress (written off this time as acid reflux).

This first tale of despair is almost done.

2 years later I had a stable job, a supportive wife, and medical insurance. I decided to give it one last shot. This time I received a lung-function perfusion scan, a tread-mill test, lots of blood work, another stationary bike test, and an echocardiogram.

This revealed supernormal lung function (high capacity and excellent transmission), a normal heart (no right-side enlargement which would indicate advancing Pulmonary Hypertension), and the dreaded "maybe you're out of shape."

Was my research off? Was it all in my head? Or maybe it was just my lungs and some combination of asthma? Perhaps I had never been in that good of shape to begin with, but had thought I was - and was continually overexpecting my body to perform?

Family became too busy and I let the issue drop. Yes, all the symptoms were still present - but only when I took the time to exercise and rest in response to it. So instead I decided to no longer be an annoyance or burden based on something that might all be in my head, and I made the problem go away. I did this by structuring my life such that the discomfort was no longer manifest.

As a result, massive fatigue set in - but usually not pain. I became very nearly narcoleptic, and inside of 4 months gained ~40lbs - with no especial change in diet. But at that point let it lay, and ignored the rest.

It has been 5 more years, and in that time I have learned how to manage most of the fatigue (and the accompanying sleep disorder, which was diagnosed some time later at the urging of concerned colleagues - it having had more impact on work than home). I have continued to gain weight, and moved from a svelte (almost Elven) 145lbs to 220lbs - mostly not muscle gain. But the worst of it has stayed nice and quiet.

Until last week.

I finally had taken most of the week off from extra work in the evenings, had taken some occasional naps to help with the fatigue, and prepared for my regular weekend meditation.

One of the dominant themes of that meditation is to be able to rest effectively, so that whatever interrupted or ineffective rest I do manage is more productive. Usually there are some behavioral issues that have arisen during the previous week of stress and speed that make my brain frantic and unable to disengage from a whirlwind of concern.

This time my mind was at rest to begin with, so the self-hypnotic session didn't have much clearing out to do - but did point very clearly to an biological issue: a pinching pain in my chest I had been unaware of. Which I had made myself unaware of. My subconscious instructed me to turn that awareness back on.

Now, it's all back. I'm not as tired, and am able to manage it more effectively because of this awareness - I know when to take brief meditation, what the palpitations and pain will mean for my patterns of comfort and awareness, and can handle and respond to them. But I realize that much of my fatigue from the last several years has been as a result of burying all of this so as not to trouble anyone.

And now, more than ever, I'm finding the same intersection with Pulmonary Hypertension symptoms.

Am I nuts? A hypochondriac?

It's entirely possible. I've always considered myself some kind of exception to the rule, and not necessarily in good ways - a large portion of my adolescent development was spent defining my individuality in terms of how I was different, and a departure from the trend/norm/orthodox expectation; and I was willing to take that to extremes to make my point.

So much so, that once during 7th grade I had missed the announcement that some of the class periods that day were going to be shuffled around - and so when I showed up to my 2nd period class and found it inhabited by the 4th period students, it was a serious possibility in my mind that I had somehow A) blacked out and/or not experienced the intervening time, or B) encountered some kind of wrinkle or warp in the space-time fabric that resulted in my having failed to pass through the previous few hours. Yes, I was overboard.

Now I have to acknowledge the persistent part of me which firmly declares that I do indeed know what it would feel like to be normal - and that this ain't it. I still might be nuts. I'm not going to attempt a firm diagnosis without the assistance of a physician, but I have one on the line and am going to wrestle this to the ground one way or another. I've given up nearly every physical activity I found rewarding and allowed this silence to rule my life in destructive ways.

I'm going to get to the bottom of it one way or another - I am reopening the !$#@ box.

Rough draft - will be reviewing and editing later. - PLT 2006-03-02 16:27


Rick said...

All VERY familiar symptoms. After being mis-diagnosed with a myriad of ailments (including GAD, Clinical Depression, and Bi-Polar Disorder), and after spending tens of thousands of dollars with cardiologists, internal specialists, and neurologists, I finally found the answer. A simple spinal x-ray (this never showed up in the MRIs) disclosed and occult spina bifida. Many of the symptoms were explained by this condition, and the remainder were a direct result of how this condition affected my spinal alignment. The most immediate concern was my heart condition. Turns out my heart, and various other internal organs, were failing because they were being compressed. Chiropractic treatment resulted in a 1.5 inch height gain, and complete r4eversal of those negative symptoms. I doubt that describes your situation (alhtough it is genetic), but I didn't find the problem (the doctors all decided it was in my head - even when I reached the point of using a wheelchair) until I left the box way behind. Seek creative solutions.

Anonymous said...

i say keep at it, but open your mind to some other unexplored diagnoses. Have you looked into costochondritis? How about Tietze syndrome? Here is some info on both.

I have a friend who has complaints similar to yours, and she was recently formally diagnosed with costochondritis. Nothing much to do about it, but at least it's good to know it's not fatal.

I'd say, if you've had heart enlargement and other symptoms of pulmonary hyperplasia (super-functional lungs, for example) ruled out already, then don't over-focus on that diagnosis, but seek other explanations besides "it's all in your head." I just don't want to see you thinking that you'll be dead in 12 years when you won't be. That's no good.

Of course, it IS possible that it's all "just" stress-related. I know I internalize my stress in my stomach, so that when I start to get really stressed out, I have symptoms just like those of ulcers, but doctors have never found any actual ulcers! Yet I get ulcer-like attacks so bad that I've been hospitalized briefly for them in the past! It took a LOT of work at various methods of stress management, but I was eventually able to make them go away just by monitoring my stress level and living with a conscious mind to over-stressing (and avoiding it). So people can and do have severe, "mysterious" medical conditions that are stress-caused, even if we don't THINK that we're really *that* stressed.

Anyway, check into costochondritis, because what you describe sounds just like what my friend describes.

Good luck with it - I'm sure once you finally track down the diagnosis, you'll feel better just for knowing that what you're feeling has a name.