New York 2014

I haven't really done anything especially cool or new since going to Peru, a year ago, and I feel like it's taking a toll on my blog. Due to some weird medical problems i haven't been able to leave town for extended periods of time, or take advantage of good weather due to inconveniently scheduled doctors appointments that i haven't been able to put off.

This past spring i went to New York City, just like i did last spring, for the same reasons. This time it was on very short notice and my friends didn't have time in their schedules to hang out. In fact, my hosts weren't even in the country the first 4 days i was in town. Since nobody was around and the weather was pretty crappy i went to a lot of museums. Take a look, there are a ton of pictures, and if you want to hear about doctor visits read the post. I like to keep this blog positive, but since this entire trip to New York was for dire reasons i'm going to write all about my problems here on this post in detail, and then move on.

The main reading hall of the New York Public Library is really cool. I don't understand why so many people were wearing blue that day.

The lobby is very sturdy looking. It would be fund to play with a super bouncy ball.

I've had some disappointing, bizarre medical problems with my hearing and balance for the last couple of years. The doctors up here in Alaska (where we have the most expensive medical care in the nation) have been enthusiastic about taking lots of my money and doing lots of tests but offering nothing in return, not even a diagnosis. I lost a significant amount of my high frequency hearing one night 4 years ago, with no explanation. It caused chronic tinnitus, which i was successfully treated for, and i learned to live with it.

Here is an obligatory photo of Grand Central Station.

Things were fine until January of 2013. At that point i suddenly lost another chunk of my hearing. I had been thinking all year what had happened, after several years of no problems at all, to cause this situation where i was losing hearing every month? I could narrow it down to two events. In November of 2012 i got some immunizations in preparation for my trip to Peru. I was given more immunizations by Dr. John Nolte than i needed because he said "it probably wouldn't hurt." I now know that if a doctor tells you "it probably won't hurt" it means he/she wants to make money off of you for something unnecessary that could hurt you.

As usual, i spent a lot of time in the subway system. There was a lot of construction going on this time, with lots of changing train schedules that were annoying, but i assume it's always under construction.

The immunizations caused my immune system to go crazy, and my arthritis, which had become nearly dormant, became more active than it had ever been in my life. My spine was on fire. I had to take a lot of a drug called meloxicam to manage the pain. On Christmas i got a bad virus and had a 104 fever for about 6 hours. It was a few days after the fever that things started going wrong with my hearing. I saw "The Hobbit" and everything was fine, then the next morning i had lost the bass.

My arthritis was so bad i had to see a rheumatologist. Anchorage only has two or three rheumatologists, so the waiting time to get into one can be months. The first one who treated me, a Dr. Tan, was one of the worst doctors i've ever seen. She was unable to recognize the side effects of her own prescription. As a result of taking too much meloxicam for too long my muscles seized up to the point that i could not walk properly, and i could not run at all. However, i did not know that. I simply woke up one day and was unable to walk correctly. I freaked out because i thought my spine had fused together, something that happens to people who have ankylosing spondilitis, which i'd been diagnosed with 16 years ago.

So, once again, i spent a rainy day in the Museum of Natural History. I think this time i've finally gotten a good grip on most of the worthless garbage that's in there. It only took 4 visits. Still, there's probably another 20% of the cultural exhibits left for me. Following are a bunch of phone pix.

I started my time in the dinosaur section. It's really fantastic and on my last visit i didn't get to that part of the museum until i was tired and out of time.

Dr. Tan told me to keep taking the medication and put me on a cancer drug that i had to inject like insulin. For my walking problem i spent a ton of money going to physical therapists, getting deep tissue massages, seeing spinal specialists, even getting a cat scan. After month of this an thousands of dollars, while having hearing attacks, i read that stiffening of the soft tissues is a possible side effect of meloxicam. Despite the instructions of Dr. Tan, i quit taking the drug. Then a miracle happened. Within 5 days i was able to walk normally again!

It was clear the doctors here in Anchorage didn't have anything useful to offer, so i went to New York to see some specialists. One doctor, another rheumatologist, thought it was possible i might have something rare called "autoimmune ear disease". It's a disorder that involves the immune system attacking the inner ear. It's not well understood, there is no cure for it, and it is progressive, often resulting in the complete loss of hearing. My symptoms, though, didn't entirely match up with the normal diagnosis of the disease.

I made my way through a herd of horses that spanned time.

An old flock of birds

The NY doctor recommended i get on a regular dose of Humira. In his office's experience Humira has helped stop the progression of the disease. Humira is extraordinarily expensive and has a long list of possible side effects. After talking to my ENT he disagreed with the other diagnosis and instead thought i might have meneirs disease. Once again, my symptoms didn't add up to the classical diagnosis, mainly in that i did not have episodes of vertigo. Instead of humira, which my ENT was reluctant to prescribe, we decided to try and treat the episodes of hearing loss with temporary high doses of a steroid called prednisone, which can save hearing when taken within 72 hours of a hearing loss event. The problem with this method soon emerged. Mainly, it was getting the ENT to believe that i had lost hearing i the first place.

All through the year of 2012 i was losing bits of hearing, but every time i went to the ENT they wanted me to take another hearing test. If they didn't think the test added up with what i was saying they would do nothing. Eventually i found out that the typical hearing test you get at an audiologist has a error of margin of up to 25 decibels. TWENTY FIVE! That's like the difference between wearing ear plugs or not wearing ear plugs. It also only measures your ability to hear at about 10 reference points across the entire spectrum of human hearing, and if that's not bad enough they don't measure below 120hz. In other words, the test is extremely primitive and next to useless if you have experienced a 5 or 10 decibel loss at a specific frequency.

One of the things i like most about the AMNH are the fantastic dioramas in the mamals section. I didn't appreciate how well done they are until i saw some places i've actually been in real life, and suddenly realized they are very accurate in terms of the landscape and perspective. That made me assume the ones that are in places i haven't been must also be very accurate depictions.

This is one of the best ones but it's in a side hall. I think i've stood in this exact spot, and it looks just like this. Can you tell where the model ends and the painting begins?

And now for something completely different. This was a part of an ornate Chinese wedding "carriage", or whatever those things are that people instead of horses carry you around in.

Something else has been happening to me as well. During the summer of 2012 i started having weird bouts of dizziness out of the blue. For almost a year it was just for part of a day, maybe once in a few weeks, but gradually it increased in frequency. By the following summer it was 2-3 days a week, until by Halloween i was dizzy as often as i was not. By the end of the year i was almost always dizzy. The doctors responded with the typical American health care methodology of giving the patient drugs to treat the symptoms with absolutely no advice on how to address the underlying problem. What i did try was a no salt diet for a month. That was ineffective (but it did recalibrate my taste buds so that normal American food was WAY too salty).

In January of this year, 2014, i lost a large chunk of my low frequency, bass hearing. It is very disturbing to loss bass, because you can feel the soundwaves, so the idea of not being able to hear it is inconceivable. For example, in the days following the loss i could hear cars with super bass stereos vibrating like crazy, but i could not hear the bass. In NY i could feel the vibration of the subway shaking the floor, but i could not hear the subway train, as i could last year. The prednisone brought back some of the bass, but not all of it. I had to wait too long to get the prednisone. Another failure of the medical system.

I went to the New Museum, which at the time had mostly uninteresting stuff. They did have a lot of works by the Polish artist Pawel Althamer. The one above was a model of a flat with the back of it removed so you could look inside.

At this point i had one of those moments when you don't know an artists work until you suddenly see something you have definitely appreciated, long ago, and never knew it was the same person. This is a set from a stop motion animation i saw as a young teen. Unfortunately i was distracted by a guard before i took a picture of what the film was. Darn.

The coolest new museum i visited was the Museum of the Moving Image, where, among all kinds of other things, they had part of the model of the Tyrel Building from the movie Blade Runner.

The Tyrel Building with some effects put on to try and make it look more like the movie.

The fourth floor of the museum was an exhibition by the incredible artist Jim Campbell. This picture is an ultra low resolution screen showing imagery of home movies. Each black square is a light emitting diode which acts as an individual pixel. The lights are facing away from the view, shining on the wall behind them. The "screen" is something like 20 feet wide an 10 feet high. At this distance it just looks like relaxing shifting tones of grey blobs. When viewed from a great distance though, your brain eventually creates an image out of it.

This one is another array of LED's pulsing seemingly randomly. In this one there is a piece of sanded glass/epoxy leaned up against the lights. The top is nearly touching so it looks like lights. The bottom though, when seen in motion, looks like water flowing clouds. I highly recommend you explore more of Jim Campbell here

This was a mechanical wolf from a silly movie in the late 80's/early 90's.

The snack room.

The building is pretty neat and reminds me a bit of the Seattle Public Library on the inside. This was a weird stairway that was kind like origami.

I thought the dizziness might be related to the hearing loss, so at the beginning of December 2013, I sent all my medical records for review to the House Clinic in L.A. where they were reviewed by a Dr. Slatery. My entire experience with Dr. Slatery and the House Clinic was a major waste of money and, more importantly, critical time. It took 8 weeks for my records to even get looked at (after i paid $50 to ship them overnight), and Dr. Slatery only spoke to me once, for a few minutes, after which he would not return any phone calls. If the review had taken place on a decent time schedule, like it should have, i would have been able to save myself from losing that bass hearing. That hearing loss was a direct result of the irresponsibility of the people who work there.

I spent a lot of time walking on rainy streets.

As of this writing i have been on Humira for nearly three months, the longest period of time they say it might take to start working. So far i have noticed i am getting colds more often, and they last several days longer but i have not noticed any other side effects. As far as hearing loss just three days ago i seemed to have gotten an new tone of tinnitus, which could indicated the death of some hair cells, but otherwise it seems stabilized. Time will tell. I cannot decide if the dizziness is better. In general i am tempted to say it has improved a little bit. But, i have been having attacks for the last two weeks, so that gives me pause.