Polyarthritic Geek: a Prologue

Big experiences in life are worth sharing, primarily for the benefit of the one who’s living them as it helps to elaborate and to put it in the right perspective quickly.

So this is what I am doing here, knowing that the diminutive size of the readership will be in keeps with a general desire to still consider this a personal experience, but its non-nullity will force me away from self-pity. Besides, there might be (and this is even less probable) someone in a similar condition, and these words might be of some help – at the end of the day, isn’t Experience one of the currencies of CGM ?

So, let me start at the beginning

PROLOGUE

I suffer from Polyarthritis since I was two. At that age, it is a rather uncommon affection, so it took doctors about 10 to 12 years to finally decide it was it; while they were settling the dispute, they were treating me for a wide variety of illnesses with similar symptoms: intense joint pain and inflammation, progressive and rapid deformation of joints, high fevers – all of this probably accompanied by such robust doses of wailing by the subject to make you realize why Spartans found easier to deal with such conditions by throwing the poor child off mount Taigetus.

For the scientific-minded among readers, PA works by eating away at that precious slicker-than-teflon membrane that coats your joints, called carthilago: when there is no more carthilago left, the joint grinds bare bone on bare bone which is both intensely painful and disfunctional.

By the age of fifteen my PA had substantially reached a stable phase: it had deprived me of the use of my wrists, had made my finger joints materially weaker but still working, ditto for feet and ankles and left me with a marked lower jaw ipoplasy: in other words, no chin.

Not bad for someone that used to be stuck in bed for whole months’ stretches as a child. As a result, I led a largely normal adolescency and youth: I played football, I skied, I went rock-climbing and bycicling, albeit usually with subpar results.

However, PA is an astute illness: it will throw your way a very attractive decoy, so it will continue to work elsewhere undisturbed. In my case it was first the knees, then the wrists. Wrists have always been a source of worry for me. Even after giving up a career of professional wrist-wrestler (kidding!) there are MANY activities where the lack of wrist force or dexterity becomes a real impediment: from opening bottles of mineral water, to lacing your shoes, to buttoning your shirt or knotting your tie, and I could go on forever.

The usual alarm bell my body throws off when it meets such a situation is localized bouts of impossible to ignore pain: you hit a bump when bycicling and pass out from wrist pain; luckily, it it is also very easy to deal with: episodes such as this spontaneaously subside in a few minutes, and any more chronical evening crises due to the many strains of the day can usually be fixed by nothing more sophisticated that generous doses of aspirin.

As a result I am a world expert at opening revolving doors with my elbows, or to spot always the lighter and more ergonomic trolley bags or backpacks, and any advertisement announcing how IBM shaved off another third of a pound from their latest Thinkpad is enough to attract my attention; miraculously typing is not one of the painful activities, while handwriting decidedly is, which may have been one of the reasons I took on computers early on.

Little I knew that all of my research and attention focused on wrists was allowing the little bastard to continues its disruptive work on the unassumed (and pain-free) area of the lower jaw, which it basically went on deforming by making it smaller and smaller. The work was rather done by not allowing the jawbone to grow with the rest of the face; age-induced relaxation of throat tissues doing the rest and condemning this condition to worsen over time.

I have always loved driving fast cars (how unusual for a boy !) and enjoyed my fair share of speeding tickets, temporary license revokings and a few accidents; but a couple of years ago, when I was driving to the airport to catch an early flight to Stuttgart I crashed blindly on the car ahead – luckily the speed was low because of traffic and nothing was damaged except miles of german metal, but the reason was not difficult to interpret: I had fallen sound asleep while driving. Now, many people now me for short sleeps, but that happened after a relatively peaceful fullnight and so threw off an alarm bell as big as a house and prompted a full sleep analysis session which immediately diagnosed me with OSAS, short for Obstructive Sleep Apnea Syndrome: when not enough oxygen reaches your brain, that smart organ wakes you up; this happens to everybody several times during the night without even consciously fully waking up, but in my case it turned out it was happening an average of 62 times PER HOUR.

I thought I slept, but I didn’t – and God only knew for how long this had been going on .

The organic reason was equally simple to diagnose: the progressive ungrowth of the lower jaw had diminished the gauge of my trachea from the average of 10 to 12 millimeters to about 3.5.

There are both an interim and a definitive solution to the problem: the interim one is a little pump (CPAP – continuous positive air pressure) that forces air down your throat and nose – you wear it at night and this ensures adequate oxygen supply, But due to its mechanical nature, after a few years it tears your throat apart and so it is mainly used for elder patients. The defintive one is to surgically reposition the lower jaw, a two-and-a-half hour affair whereby they cut the jaw bone in two points and insert little titanium plaques to extend it. This is all done internally, as it is the rage now, making healing much easier and faster.

In my case, this otherwise straightforward procedure was met by a stopgap problem due to the presence on an embedded wisdom tooth exactly where the bone had to be cut, which meant a further three months delay to allow the body to absorb the shock of the tooth removal (itself a rather messy and bloody affair) and bone reformation .

And so on a nice monday morning in may, the actual operation can begin.

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