No, I'm not dead

I'm still around. I just haven't had the energy to post anything extensive lately. Having my legs messed up (still) also messed up the rest of my life, and I'm thinking I've got a case of depression going on from having had this going on for so long. I'm definitely in a mental state that isn't good, witness the fact that I'm having a hard time mustering the energy and enthusiasm needed to do something about it.

I do go for a physical therapy evaluation in the afternoon. Hopefully I've got enough nerve function back that there's things they can recommend to help me get flexibility, strength and motion back in my feet and ankles. The warm, stable weather's doing wonders for my pain level, that helps a lot too.

Neurologist appointment again

On the 18th I've got another appointment with the neurologist, followed by another IVIg session. I've got to set up an appointment with my primary physician, too. The feet are improving, but the improvement means they hurt more. Now it's not the pins-and-needles neurological pain, more and more it's just plain bruised-and-battered physical pain. The pins-and-needles mostly comes from shifts in the weather making things act up.

I need to talk to the doc about 2 things mostly. One is the fact my feet and calves are just stiff. I'm starting to get movement even in the right foot, but everything's so stiff it's not funny. And my toes aren't bending right. I think I need to go back to the physical therapist to have them have a look and see what I can do about this. The other is my weight. Mostly I need to get my primary to stop harping about it. I know it's been going up, and I know it's higher than it should be. Low activity levels do that. I've got the eliptical, I'm working on increasing the workout time as much as my knees will allow, and I'm going to get some light dumbbells and a simple bench ordered soonish to help with the arms, sit-ups and such.

Neurologist results

Went to see the neurologist yesterday. The good news is it's not just my imagination, he's seeing tangible improvement in my feet over last time (before the start of the IVIg therapy). He's going to continue the therapy and have me come back in 3 months to see how we're progressing. I'm hoping the IVIg keeps things improving, because the next step up is immunosuppressant drugs and I really don't want to go there if I don't have to.

Things to look at: more PT, X-rays of my toes to see if they're really dislocated, massage, check on the spa and pool down at the Mission Valley YMCA (their pool's heated, nice when it's too cold for the one in the complex), weight bench and dumbbells to help with strength and exercise in general.

Sleeping, lack thereof

Gah. It's not that I can't sleep, it's just that these days I don't seem to want to. Partly it's just stress. Partly it's frustration with my legs. In large part it's fear.

It's coming up on the 1-year anniversary of my coming out of the induced coma. Though I wouldn't call it a coma, really. I was too aware of things. And I'm finding more and more nights involve flashbacks to that. Why would that make me afraid? Google the product "Dignicare". Warning: NSFW. In fact, probably not safe for your personal comfort in general. And that's not the worst of it. What, you thought just because you were in a coma that your body stopped processing and producing waste products? It doesn't, and hospitals have to have a way of dealing with that in patients with no voluntary motor control. And I remember all that going in and coming out. I... really would rather not, thank you very much, and especially not in extra-vivid Technicolor. Also replays of things like my hallucinations of being parked in an out-of-the-way area by a doctor who had no intentions of asking my consent for anything he wanted to do, nor any compunctions about lying to everyone to keep me isolated. It didn't happen, but that doesn't make the memory less disturbing. And memories of them taking the ventilator out of me, only to have to replace it because I was dying without it. That got mixed up with memories of some of my role-playing characters over the years, all rolled up into a scenario of me being turned into them to save my life. Another one involved my doing a motorcycle tour of the US as a busker at RenFaires, accompanying a couple patently lifted from some locals. That one gradually transformed into a high-tech VR-heavy world where I ended up as a sportscaster (mainly because I could keep track of lots of information streams at once and spot the anomalies, and ESPN was paying well). And then there was the Institute for Advanced Science and Research, which was a thinly-veiled copy of the UCSD hospital right down to people repeatedly asking me if I knew where I was and what date it was. Another part involved research into marine ecology and it's effects on the global economy. Don't ask me where that one came from, I'm not sure I want to know. Scratch that, I'm pretty sure I do not want to know.

If you've managed to stay with me this far, you can understand why having all this shoving it's way through my head on a regular basis, when I know it's all bogus but can't stop it, makes sleep a less than attractive prospect. But I need it anyway, I don't stay sane without it. I'll be happier when it's spring and the sun starts chasing the depression and mental instability away again.

EMG/NCS results

I was in for an EMG (electromyography) test and nerve conduction study today. Preliminary results are mixed. Good news: in my left leg the nerves are talking to the muscles and the muscles are reacting, and while the right leg's not showing reaction there's no sign it's got any more neurological problems than the left. Bad news: the muscle reaction's weak (and practically non-existent in the right leg) and there's little strength and no stamina in the muscles. That isn't really uncommon, but it means recovery's going to be slow. All I can do is work on trying to move my feet around, get the muscles to start moving so they can build strength, and wait it out.

Guillain–Barré syndrome

Guillain–Barré syndrome. The neurologist keeps mentioning this. I really don't need that crap, and it doesn't seem to fit well with my symptoms, so I hope this isn't what's wrong with my feet. But I'm supposed to schedule an EMG test once the insurance clears it, the neurologist wants to make sure the EMG and NCS tests they did in the hospital didn't miss it (they might've been too early to catch it).

Test results

Last week I had the comprehensive blood/urine workup that my doctor ordered done. I just got the results back. Vitamin D deficiency, mild high triglycerides and borderline anemia. Joy. The triglycerides aren't a major concern since all the other cholesterol numbers are OK, but other two need some work. Part of the vitamin D deficiency is probably because I haven't been out in the sun nearly as much as I ought to be, and I think the iron deficiency is because I've been slacking off on the multivitamin supplements I normally take. That may also explain the lethargy, come to think of it. I may need to add an iron supplement to my list too.

Doctor's visit

Visited my primary care physician today for the first time. Went well. I'm off the Pepcid and Lopressor, they were just carry-overs from the hospital who give them to prevent problems while you're there. I'm also tapering off the Neurontin, cutting the dose in half every 7 days over the next 4 weeks. Hopefully I won't need it anymore.

I'm also scheduled for a bunch of lab tests and a visit to a neurologist to check on the nerve weirdness in my feet. I'm hoping this won't turn up anything bad.

Why we need health care reform

I got my bill from UCSD. This isn't the full treatment, it's just the bill from the hospital. It doesn't include any of the doctors, and it doesn't include any of the rehab at Sharp.

Total billed: roughly $348,000
Negotiated price with my HMO: $250,000

This for just a case of pneumonia run wild. If you don't have insurance, how are you ever going to pay that bill? All you can do is declare bankruptcy and leave the hospital holding the bag. This is why we need to do something about how health care is handled.

Oh, and for those who scream about how much it'd cost, let me ask you this: how much does not covering everyone cost? Do you really think that if we don't cover them they won't get sick and won't use the emergency room? No, they're going to incur those bills anyway, they'll just leave the hospital holding the bag, and the hospital will raise their prices until the people who can pay are paying enough to cover it.

Oh, my cost? I pay $250, the insurance covers everything else.

Major health disaster: killer pneumonia

Back on November 22nd I posted about my bout of flu. Well, it turned out to be a bit more major than that.

On the 23rd, I had Dean take me to the ER because of the fever. They gave me azithromycin and sent me home. On the 25th, I ended up calling 911 for an ambulance because I couldn't walk 10 feet without being out of breath and I was running a 103.something fever (104 is the point where it starts being physically dangerous). The last thing I remember is the ambulance wanting to take me to Scripps Mercy because it was closer and me insisting I had to go to UCSD Hillcrest because they were in my insurance network and my primary care physician was there, and UCSD finally saying they could take me. The next thing coherent I remember is slowly coming out of the drug-induced hallucinations on December 23rd. Yes, that really is a gap of a month.

According to others, UCSD admitted me to the ER and immediately sent me up to the ICU. The ER nurse says I was coherent and seemed OK except for the shortness of breath. 3 hours later I wasn't breathing and they were putting a ventilator tube down my throat. I was in bad enough shape that the doctors weren't giving odds on my surviving even 12 hours. Obviously they were wrong, but I definitely burned another life there. From there I spent the next 4 weeks in an induced coma and on paralytic drugs to stop me from fighting the ventilator tube, with only one break where they tried to take the ventilator tube out and had to put it right back in. The immediate cause was runaway pneumonia, but they never did figure out what was causing it. They knew it wasn't bacterial or fungal, all the cultures were coming back clean, so all they could do was throw every antiviral in the book at me and hope something stuck. I had by all accounts about 15 IVs in me most of the time. The hallucinations from this period are something I hope never to repeat.

When they finally managed to get me off the ventilator near Christmas, I amazed them by being able to talk clearly 5 minutes after the tube came out. In a whisper, sure, but normally people just aren't talking at all at this point. From there I quickly went to Sharp Rehabilitation for inpatient physical therapy. My muscles were atrophied so bad I couldn't hold a spoon, and my nerves were just as bad. I had almost no control over my legs, and pins-and-needles from the waist down. It finally took 800mg of neurontin every 6 hours to control the nerve hypersensitivity. But once PT started I amazed the therapists by how fast I recovered function. Within the first 2 weeks I'd gotten my upper body completely back and most of my lower body. The only thing I was lacking was from the ankles down.

They discharged me from Sharp on 1/18. I'm currently in a hotel waiting on my new apartment to become available (should be on 2/10). My old apartment just wasn't feasible long-term, the stairs are too steep and the bathroom's too small and not arranged well, so I had to find a more modern one. I start outpatient PT at UCSD Hillcrest Monday. Hopefully I'll make good progress there. I'm already seeing some progress. I can push down decently with my feet, and I can feel the muscles moving when I try to pull up even if the feet don't move. On Wednesday I began to be able to wiggle my toes, something I hadn't been able to do. I take these as signs the nerves are knitting slowly but surely.

So, if you've been wondering where I was, that's the story.

I joined the purple-bar club and all I got was this drafty hospital gown.

Recovering

I'm slowly recovering. What I'm eating is staying down now, that's making a world of difference. The fever flashes seem to be fading. I think I'm going to stay out from work Monday, though, to make sure I don't spread this junk and to give me a bit more time to feel healthy.

Down sick

Being sick sucks. Wednesday afternoon I started feeling a bit off, tender joints and the like. By night it'd gotten serious. Thursday I was running a fever of 100.5 most of the day, peaking over 102 a couple of times. Today the fever broke around noon, but I'm feeling like I was run over by an entire freeway worth of traffic. Eating is a major chore, and I'm spending more time in bed than not. Bleh. Hopefully I'll be feeling better by tomorrow.

Falling over

Bleh. Went for a nap last evening, planned for a half-hour or so just to refresh myself. Woke up at 2:30am long enough to use the bathroom, then crashed again until the alarm went off. I hate that.

On pain

"Pain exists for a reason. It's how your body, and your mind, tell you that something's not right. Ignore it at your peril. If there doesn't seem to be a reason for it, perhaps you're not looking hard enough. Or perhaps not in the right place. You won't find a physical cause for a non-physical problem, nor will you find the physical cause if you keep insisting it's all in the head."

My father went through idiots who wouldn't follow that advice after his accident. His right arm was numb, painful and showing all the signs of nerve damage. All the tests they ran confirmed nerve damage. But since none of the X-rays showed any physical cause for the damage, the doctors kept insisting there couldn't be any nerve damage. Until finally Mom brow-beat the insurance into getting an opinion from the surgeon who all the other doctors named as the guy they wanted if they had to have work done on their necks. He looked at everything and said "OK, all the tests show there's damage, if we can't see the cause from the X-rays we'll just have to open it up and poke around and see what the X-rays aren't showing.". And when he opened my father's neck up, there was a nice loud clatter as a vertebrae fell out in about 3 pieces, to which the surgeon commented "Well, that's the problem right there.". No sign on the X-rays, but the insurance couldn't argue with the bits of vertebrae on the desk. And Mom made a point of rubbing the noses of all those other doctors in the photos of the shattered vertebrae that they refused to look for.

Peanut salmonella outbreak, new discovery

http://www3.signonsandiego.com/stories/2009/jan/30/med-salmonella-outbreak-013009/?zIndex=45349

There's a new development in the salmonella-contaminated peanut-product case. Apparently the FDA caught a (badly) contaminated shipment from Peanut Corp. coming back into the country after having been rejected abroad. They refused to allow the shipment back in and ordered it destroyed. They didn't order any inspection of the plant that was the source of the shipment, and didn't do any testing of their own despite having heartburn over the company's in-house testing methods. And apparently the company had a history of problems being found during inspections.

Methinks that, given the new administration and their lack of abject worship of the glory of corporate ultra-capitalism, there's going to be a few changes in FDA policies and procedures going forward. Increased inspections and decreased taking companies at their word, at the very least.