Friday, February 28, 2014

Progress ? Er ... movement ??

Making some moves, or ... Something's Gotta' Give.

I did some research.  I talked to the second opinion GI guy.  I talked to my two *wonderful and brilliant* MD friends -- neither of whom is a Gastroenterologist.

One is totally in my camp: we're not going where we should be, as quickly as we should be.

The other is saying ... in essence ... what Dr. Hu is saying: biopsies HAVE risks, and ... may or may NOT tell us anything.

Medical tie-breakers have LONG been my purview ... and I'm exceptionally tired of it ;-)

I'm going to have the biopsy.  Scheduling it.  Learning a BIT about pathology, in the hopes of talking with the procedure doc about .... best practices to maximize the chances of getting a useful sample.

Learning a bit about pathology to figure out the likelihood that even a useful sample will give us *material* information.  I think it's very likely, though you have to couple it with what you DO know -- labs, symptoms, time-course, etc. -- to come up with a solid diagnosis.

It's art, not science, but based on a CHUNK of good science, and LOTS of data.

Sometimes -- more often than we should know -- that's medicine, Folks.

There are an AMAZING number of things that this COULD be ... that biopsy + clinical data WILL tell us, and some of them ... are either very bad, DO require treatment/management, CAN recur, or ... all of the above.

Yeah.  I need this answer.

I've also been evaluating the wisdom of the drug "re-challenge:" starting back on the meds, one by one, to see if and when one of them blows you up.

Can't do it. 

Won't do it.

Wayyyyy to risk-averse, right now.

Which pretty well shoots dead the former goal: get to Boston, and try to survive another six week fitting marathon to get back into my scleral lenses.

So I reached out to an old acquaintance -- an eye doc who's started using laser scanning to feed a CAD/CAM lens fabrication and fitting process.  Could you fit me better ?  Faster ?  With fewer trial pairs and less pain ??

Maybe.  He says maybe.

Sending HIM more data.

I don't think I could DO the 6+ week thing again.  Could I do 2-3 weeks ???

Maybe.  I say maybe.  Only one way to find out.

For those keeping score at home ... here's the view from the Gulag:

1) Get scleral lenses;

2) Get best possible prescription for glasses to wear OVER the scleral lenses.  Even if the sclerals DO give me 20/20 vision ... I need the glasses to stabliize my alignment, prevent double vision, and lessen the load (fatigue) on my eyes.

This turns into near-vision AND distance vision prescriptions.  No bifocals for me.  Eyes can't take them.  Opticians can't make them.  Not for me.

This piece ... will take weeks ... and LOTS of measuring, averaging, throwing darts, hours on end of hashing this thing out with my favorite ophthalmologist.

Would have to get a hotel, and live near his office.  Couldn't drive;

3) If we can come up with the prescriptions .... figure out who the best opticians (glasses-MAKERS) are, and START with them.

- distance glasses
- near glasses
- 'outdoors' glasses that wrap tightly to seal off wind, dust, prevent tear evaporation, etc.
- maybe swim goggles

One pair first.  Get them made TO the prescription ... evaluate the prescription ... tweak if necessary (back to the last doc) ... re-make if necessary.

Wash.  Rinse.  Repeat.  Get ONE good pair of glasses.

Move down the list to the other pairs of glasses.

4) Figure out where that leaves me in terms of ability to live -- how resistant I am to sunlight, humidity, heating/air conditioning, wind, etc.

5) Figure out what my *capacity* is -- combination of (4), above, and what kind of VISION I wound up with:  Can I .... ski ?  Bike ?  Motorcycle ?  Drive ?  Snowshoe ??  Run ?  Woodwork ??

If everything went smoothly, I figure I could knock all of this out in under two years ;-)

But ... first ....

As any of you who know me would know ... I've always eaten well, gotten lots of exercise, and taken pretty good care of myself.

Since this all started, though (Christmas Day), I now have high blood pressure, high cholesterol, high triglycerides, and ... get winded walking up a flight of stairs.  The furuncles (staph infections) don't seem to go away, either.

Basically, after I figure out what this is/was ... I actually have to start by figuring out if this OTHER stuff is going to go away on its own, or ... if there are other -- more pedestrian -- medical challenges that need to be dealt with.

Meanwhile ... there's no putting down roots.  Did that before.  Got the SHIT kicked out of me, and the world knocked out from under me.  Just ... keep ... living in month-to-month hotels with kitchenettes, and evaluating possible cities/regions for livability.

Or become an alcoholic and serious recreational drug user, and wait for it all to just go away.

No decisions, yet ;-)

Ciao for now ... from ... have you figured out why we call it the "Gulag," yet ?? ;-)

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