June 21, 2010

Some thoughts on health

"May you live in interesting times," goes the old Chinese curse. It should be noted that this phrase's earliest appearance is in a 1950 sci-fi story. The Cold War was definitely an interesting time.

This post is not about yesterday's run, nor is it about tomorrow's. This post doesn't cover the mechanics of running, the psychology of exercise, or have any sweeping complex of metaphorical chutes and ladders expressing deep thoughts on life. This is just a few thoughts on health - mine, my family's, my friends'.

Tonight I attended Broadway Bares 20, a fundraising event started by Broadway Cares/Equity Fights AIDS, which came into being for a very specific purpose and has since expanded its scope and mission to become an outreach program that helps over 400 smaller programs, somewhat like the United Way. It has not lost its focus, but in this decade where AIDS is now, largely, a manageable illness (given access to good healthcare and medicine!), BC/EFA has enlarged its embrace to tackle more problems.

And right now, RENT is on the TV. Deplorably, it suffers from its transition from stage to screen, even though the cast and the music is exactly the same. More importantly, it also suffers from the passage of time. It was written, remember, in 1994, a time before most of the drugs, a time when people were still dropping like flies. We'd only just figured out how AIDS was and was not transmitted, in fact. And Broadway Bares had been around for just four years. RENT has become a snapshot of an interesting time. Since then, we have made so much progress.

So what of it? Well, I see strange entanglements with many diseases; CF among them, of course. We, as a nation, have made so much progress in the last twenty years medically! CF is now talked of, in murmured conversations among older patients and some doctors, as a chronic but manageable illness. We don't yet say non-terminal, but...

Twenty years ago, the CF gene had just been found, giving rise to a lot of hopes for cures (which I won't comment on that topic right now). I was 18 and in my first year of college. My lung function was just over 100% and I had yet to experience a hospitalization (aside from the one when I was 4 before diagnosis) or a course of IV antibiotics. My few inhaled medications were purely maintenance. Pulmozyme, the Vest, aztreonam, and compounded TOBI did not exist. The grand CF drug pipeline did not exist. We have made so much progress.

It is hard though. The struggle against these permanent illnesses, the ones which will kill us, is never over, no matter how manageable they become. I can't really speak to the fight people w/ AIDS have to fight, though I imagine it is similar to the fight against any other terminal illness.

On a personal note, my health concerns came to the forefront recently - well, moreso than usual. I had been worried this trip overseas, being my first significant trip with diabetes, would result in out-of-control blood sugars or a massive lung infection (because of course I don't travel with the Vest). I was afraid that, as a litmus test, it would show that travel was not a good idea for me anymore. However, it was generally to the contrary. For the record, my lungs felt great the whole time and my cough was minimal. I didn't get out of breath moving road boxes or anything like that. My blood sugars remained in the low end of normal very steadily. All of my health problems receded.

Except for one. This new thing, this joint point, which is still not quite gone and which I know little about. This popped up the second day in Israel and made the entire trip one long miserable slog. I hate to say that because, sans joint pain, the trip was a wild success for me and I had a good time. I can travel with CF and I can travel with diabetes. No problem. But where did this joint paint come from and what the hell is it exactly??

My fear is that it is a new facet to my overall health picture. I know we all get a few problems as we get older, but I'm nowhere near old enough for something like this! To say the picture of my health has become interesting is to put it mildly.

And then there's my family. Mom on tomoxifin, dad on prednisone. They did nothing to deserve their health problems; like the rest of us, I suppose. But I don't know that so much progress has been made on the fronts they need as has been made with CF and AIDS. It seems unfair somehow. We've made so much progress...but not enough. On any front.

June 7, 2010


The below was written earlier than this posting and I have much to add since then and before, but don't have the time at the moment to go into a long, long blog post. I'll try to play catchup in a couple nights and split it up over several posts.

Jerusalem, Saturday June 5, 2010

Since last Monday, I have been suffering the effects of some as-yet undiagnosed affliction, which feels very much like what rheumatoid arthritis must feel like; or perhaps the flu but without the fever, chills, or cough. In fact, other than this persistent, awful pain in my joints, I feel great. My CF is under control, I've been doing the inhalation therapies, and my diabetes is also under good control. In fact, I use less insulin with the food here than back in the States.

So why do I feel like I've been beaten with all over with a steel pipe and left to die?

After enduring our first entire tour stop with this pain, I had had enough. Yesterday, just as lighting supervisor Laura Bickford was beginning focus, I went to a local hospital. Actually, not a full-blown hospital, more like an acute-care ward that is for stuff less urgent than an E.R., but for stuff which needs attention within a day, i.e. for shorter time frames than when you make appointments for stuff. Our translator, Machal, called it a "pre-hospital". (I will have to look more into these; sounds like something America could and should use.)

Anyway, there was an American-Israeli doctor there, Dr. Fred Carroll, from Philadelphia. He looked at me and also one of our company members who had sprained her ankled while teaching a class. Dr. Carroll couldn't make a diagnosis, but could rule out a bunch of things from the mostly-normal urinalysis and CBC panel. He put my fears of a parasite to rest, so what is going on is probably a bacterial infection of the connective tissues, I think. He prescribed a different anti-inflammatory, Etodolac, which our guide/translator recognizes and says is good for the chronic pains.

Now, I wish it were as simple as just going to get this filled and be done with it, but I guess things are never that simple. First of all, Dr. Carroll is concerned about one of the CBC results, an elevated creatinine level. He wants me to check in with my doctor before using the prescription. Problem is, my PCP, Dr. Horowitz, probably doesn't have any previous creatinine levels to compare to. Dr. DiMango does, I believe, and I've sent her an email and left a voice message. Unfortunately, my internet connection here is spotty, so I don't know yet if DiMango has answered.

That partly doesn't matter because by the time I'd gotten back to the theatre, helped finish focus, and asked about finding a pharmacy to get the scrip filled - they were all closed for Sabbath. Fucking great. Our host at the theatre, a technical director named Madai, graciously offered to try filling it at an Arabic pharmacy on his way to work Saturday morning, so I gave the scrip to him. I hope he is successful and that I can start on the Etodolac today, because my current pharmacological method of coping is 800mg of ibuprofen every 5-6 hrs, which surely will not be good for the kidneys. Come to think of it, that may be why my creatinine level is up!

I note that the admissions chart shows my pulse at 74 bp, temperature at 36.7C/98.1F, O2 sat 95% and BP 126/86.

Part of the problem with this pain is that I cannot exercise. Even walking is somewhat difficult, stairs much harder. Last night, with a little time off and with the rest of the crew doing their own thing (and probably not wanting to drag along the dead weight I represent right now), I walked through the Old City to the Western Wall. The Old City itself is beautiful, amazing, and frightening. It would be easy to get lost. It was, however, very clean; and I was surprised to find that it is still "just" a city - it is not government property, but mostly private and people live, shop, and go to school and work there just like anywhere else. It must be amazing for these privileged few to be able to settle in at night in a 500 year old (or 5000, I don't know) within pissing distance of the world's holiest of sites and relax to a nice evening of Seinfeld on the tube. Bizarre.

I should have expected to find the Western Wall more easily than I did, though I enjoyed meandering through the Christian and Armenian quarters as I wandered slowly downhill. It took me a while to cotton to the fact that I should just follow the orthodox jews that mostly seemed to be progressing in one direction. This was just after sunset, but not quite night, and so more and more people were streaming downwards toward one area. I began to hear fireworks and the sound of a large, jubilant crowd of people. Finally, I came around a corner, down some steps, past a very large Menorah (built and readied for the Third Temple whenever that happens) and beheld the Western Wall plaza - filled from corner to corner with a mass of Israelis celebrating the Sabbath. Towards the Western Wall itself, crowds of young girls and soldiers gave way to a black crush of uniformly dressed orthodox jews, many of them rabbis, no doubt. Here and there a more adventurous young man was pressed in among the black coats to pray at the wall.

Studying the situation, it became clear that there was a section of the Wall reserved for women and that among the men's section, most of it was for the more consistently faithful. However, there were parts where layfolk came and went on a circulating basis, to leave their prayers and give thanks to God.

I had my own prayers to leave. I'd written them on some paper in the hotel. I came down the last steps toward the guarded entrance to the plaza, where there are metal detectors. I found this somewhat odd, as easily half of the soldiers in the plaza and even some civilians were carrying rifles - nasty-looking modern weapons of war that mean business and convey the message that modern Judaism isn't going to take shit from everybody else anymore.

Entering through security, I was challenged by one of the guards. "Where are you from?" This was not a friendly query. "Brooklyn" I answered. It seemed to pass his test. Perhaps non-Jews are not allowed in the area? I didn't see anybody identifiably non-Jewish, though there were a few, like me, who were not well-equipped with their yarmulkes.

But this I could remedy - and must before approaching the Western Wall. They have cardboard yarmulkes ready, which I availed myself of, then entered the crush near the Wall.

I am unprepared, given my poor Jewish education, to say the proper prayers. Maybe that is not critical. I slowly moved through the crowed and when the opportunity came to touch the Wall, I did so, said a prayer the best I knew how, left my paper in the wall, and left.

The Sabbath really is a special time in Israel and especially Jerusalem. Best not to mess with it. I hope the presence of so many old men can whatever necessary mojo is needed to boost my written prayers to the ears of God. And no, none of them were for myself.