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I’d already been struggling with skin issues before ending up in the hospital with shingles.

Now it’s gotten much harder.

So, I’m dealing with diarrhea having gone on for nearly two weeks. I haven’t been able to slow it down well enough and I’m barely eating. Even on warmer days I’m covered up with a blanket because I’m not generating enough heat myself on the meager calories I can get in. Worse yet, high-calorie things like ice cream I haven’t gotten in me simply because lactose has created gas, which has exacerbated the diarrhea.

Now, my back muscles are getting stronger, which is good. I’ve been able to walk more without the walker. But, I’m fighting with muscle cramps about every other time I get up. On top of that, I’ve developed multiple sores on my back, which are not healing, partly, I think, because of some damage in the hospital, but now more because I’m simply malnourished. I don’t know how much longer I can go on like this. I’m losing weight at a ridiculous rate. I’m effectively emaciated.

I also have a sore at the crease between my buttock and my thigh on my right leg. No bandage ever seems to stay there. It hurts at odd times during the day. The combination of all these things can result in my sitting at a pain level of two to four, and then spiking to about an eight. (This is on a scale to ten.) It’s horrific.

So, I was looking around on Slashdot and came across an article mentioning some new discoveries related to the flu. The linked article in the Examiner basically pointed out that the flu interrupts the immune system in some ways.

Being that I have a weakened immune system due to immunosuppressive drugs, one thing stood out from the article: the interruption of the immune system allows infections to thrive. There were no conclusions made in the article, but my own treatment, should I get the flu, became very obvious to me.

If I get the flu, it becomes important to take a blood culture right away and see if any bacteria start to grow. If it is obvious that I have an infection before we know what it is, I will need to go on a broad spectrum antibiotic. Otherwise, I will need antibiotics for whatever is found from the culture.

For anyone else out there with a similar problem in the immune system, I highly recommend discussing this possibility with their doctors (we all have more than one). If they agree, make sure it gets put in the charts and into the electronic system as standing orders. The last thing you want is for symptoms to appear and something to occur rapidly and then have ER docs not have a clue what to do.

Ok, so this new swine flu sounds pretty nasty. Now, granted, we’re not looking at many people dying and there haven’t been too many cases yet. It seems like the hardest hit people are those with the least access to medical care.

Unfortunately, those who say we shouldn’t panic are right, but they also come across as being rather blasé. What we need is to realise that we have an economy and health care system that really isn’t ready for this. We’ve seen the problems of a crush to emergency rooms in New York, possibly because people without health insurance cannot simply go see their physician. And the way our economy is set up, we often don’t have sick leave for people. The number of sick days allocated at most jobs will not suffice to keep people at home when they are sick.

I understand that people are contagious for quite a while with influenza before they become symptomatic. But in a culture where people lose significant money for not coming in when they have a cold, we tend to expand how long people are exposing others to disease.

The sad fact is how much this really lowers productivity in the economy as a whole. If we encouraged the sick to stay home, paying them for sick days with a doctor’s note, providing universal health care so that they all can get that doctor’s note, we’d be far more productive.

And for some of us who have crippled immune systems, well, this stuff is scary. I cannot easily find work in a world where working in an office may kill me because of the worries about disease.

It’s time to post an update on my health situation. It’s been over three months since Renée and I got back from our honeymoon, and the arrival home had resulted in an immediate transfer to the hospital to take care of pneumonia. So, what’s changed?

Well, the GVHD managed to get worse since then. The attack on the skin has managed to spread. The places not affected are my palms, the soles of my feet, my genitals, and my head. I would like to to not spread any further or into any other organs. The evidence of GVHD is also pretty prominent in my mouth. I cannot eat real Mexican food now, and I can only manage maybe a quarter of the menu at Taco Bell.

Going to visit my oncologist was an interesting experience as he hadn’t expected me to have the GVHD expand as quickly as it did. Moreover, the overall body pain was not something he’d really seen before. So, once again, I’m an oddball case. Yeah!

I’ve been going to dermatology for PUVA treatments. Basically they put me in a box with UV lights, administering UV-A radiation. I feel like a rotisserie chicken in there, but it is having some effect, at least as far as making my skin grow faster. This is an intended effect, as the GVHD affected skin is scaly, dry, and thick.

The bad news is that on top of the overall skin pain, peeling has started to occur, which is also painful. I’ve managed to get a rather large sore on my back now from where the old skin peeled and the new skin is pretty raw. It hurts constantly.

Given that I’m going to school full-time, I cannot be on OxyContin or Dilaudid all the time. OxyContin was particularly bad, as it gives me headaches long after the analgesic effect has worn off. So, now I get to be on methadone. Whee!!! It has a much longer half-life than the others, so in getting started there has been a worry about toxic buildup. So, we’re constantly looking for side effects. It takes away a fair amount of pain.

Meanwhile, I’ve been moved to sleeping in a recliner. It’s far easier to get water to drink and take pills without a lot of movement. When the analgesic effects have worn down, movement is a quick source of pain (with stretching and contracting of the skin). That has brought other issues as to how many hours of sleep I get, which has made diagnosing side effect of the methadone tough.

To top off the fun and games, I manage to contract some kind of cold, too. So I get to cough and blow my nose and feel nauseous. Yeah!

Did I mention I have a paper to write?

Fortunately, I have fabulous professors who understand that it is hard to write when you can’t think clearly due to pain and nausea. I’m trying to get the paper done, bit by bit, but it has been tough. I may end up dictating large portions. But one of my professors who has been have a rough time as of late said he felt humbled by my situation and he doesn’t feel like he has many problems at all, in comparison. Well, that’s good. I wonder sometimes if that’s the point of my life, to make people feel better about theirs. Oh well.

Anyway, I hope to have that paper in on the stuff that is blatantly obvious to me, like I’ve some kind of idiot savant. I get asymmetrical warfare and diplomacy and ethics all too well. But then again, I didn’t internalise Clausewitz. Going back to Sun-Tzu makes a lot more sense.

Hope everyone else is doing well.

So, today was another exercise in futility. Currently, based on what I was told from Social Security, I’m waiting on over $3000 in back payments. I have not been paid anything yet.

The problem lies in the payment processing center. No matter if I talk to the national customer service line or if I talk to the local office, no one can really tell me what’s going on. Why? Because everything regarding the payment is held in a central payment center, from which there is no real feedback. Someone is apparently working on the situation, but then again, they’ve been doing so for about a month now. Now, anyone who has worked with a computer system understands that accepting a task does not mean you’re actually working on it. You may be working on it, or you may be mastering your sudoku skills. I don’t know which and without any real oversight, neither does anyone else.

So, another message has been sent to try to get them to do something. I’ve wasted so many hours on this that it is ridiculous.

Now, we need to have these local offices. Why aren’t we decentralising all this other crap and providing better promotion capabilities by allowing the local office people to work on these things? With great data networks and better phone systems, we could have the local offices handling most of the issues with social security. That means the salaries for people working at Social Security would affect more of the nation, rather than building up the economies of Philadelphia and Baltimore, where the cost of living is already ridiculous.

We need a rethink on big government. What else could we easily fix with better distribution? How many billions of dollars could we save?