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Hello Darkness, my old friend

We start with stars in our eyes.
We start believing that we belong,
But every sun doesn't rise,

And no one tells you where you went wrong.
-"Waving Through A Window" Evan Hansen

I've always had a complicated relationship with depression. There's always been a part of me that has never been sure it really exists. I mean, I'm sure it exists for other people and as a condition in and of itself, but I've really known myself if I'm actually clinically depressed or simply a ruminative whiner in my own head. It was always the demons in my own head and the SSRI (Selective Serotonin Reuptake Inhibitor) craze of the 90's that got me interested in Psychology and Psychopharmacology in the first place. My motto has always been to never trust a Psychology major. I think all of those people must be broken in some way and they're drawn to the study of other broken people, not to learn or even to heal, but to figure out what's wrong with themselves. I've never gotten a definitive answer either. I remember taking tests like the Beck Depression Inventory, but what good is self report when you know you're probably smart enough to lie to yourself? When you grade your own paper, it's pretty hard to get an objective answer.

Regardless of whether it was real or not, I spent a good chunk of my teen and 20's displaying a lot of the internal symptoms of clinical depression. Of course, if you think about it, I probably had a lot of things to be depressed about. The issues with grad school certainly made nothing easy and at the time all the chronic pain issues were starting to kick in. Add all of that together and a depressed mood and suicidal ideation doesn't seem like all that unusual an experience. This went on for years and I dealt with it as best I could without ever seeking any help or intervention. And in the end, I guess it wasn't necessary. Even though the surgeries and the pain and the other issues were endless, I never seemed to fall back in the pit once I had climbed out. There were ups and downs but eventuially I entered a point in my life where depression wasn't status quo. There wasn't any good external reason for it and I chalked it up at the time to an unexpected fringe benefit from acceptance. The buddhists believe that all suffering comes from desire. We suffer when our desires are thwarted, either those things we want or things we want to avoid. If that's the case than the answer is to expect nothing and accept everything as it comes and for years my life felt like a sort of endless groundhog day.

Perhaps it's a point of irony that things have seldom been better than they are right now. With the exception of the kidney issues, I'm probably in better physical condition now than at any point since college. It's sometimes hard to remember just how much better I am right now compared to the days when I was forced to pop opiates like candy and even then being unable to sit or walk more than 50 feet without needing to lean up against something. I have a mobility I haven't had in years and add to it the weight loss I never would have believed I could achieve. All of that should be a net positive but I've somehow stumbled my way back into the pit of depression again. Thoughts of putting a bullet in my head occupy my thoughts and other dark ruminations I can't seem to let go. There's simply an emptiness inside and it pulls at me. I don't think there's actually any imminent danger I'd end up doing something about it and maybe it'll pass like it came, without rhyme or reason. Till then, I don't think there's anything to do but ride out the storm and see if there's something on the other side.


The new, new normal

Don't get your hopes up, don't let your guard down.


Got a call from the nephrologist a little bit ago. It seems the potassium has gone up a couple tenths of a point to 5.6 or 5.7 and she wants to try a new medication to try to bring it down. The far worse news is that the creatinine has also shot up. 2 months ago the reading was 3.09 and had been looking relatively stable. I had been hoping that it would stay that way and I could count on a slow rise of .1 every few months. The reading this time around was 3.3 which means that it's now advancing at 3 times the rate it had been previously. I guess there's no way to tell for sure if this will stay constant, but I don't think it's a good sign to be breaking new ground in these sort of numbers.I guess if I really think about it, it was probably foolish to have let myself be lulled into a sense of normalcy. There's still a chance, abeit a small one, that this test was some sort of outlier. I think that's generally unlikely though.

It also throws my hopeful timetable of 3 years out the window. The name of the game has always been stall and delay, hoping to put off kidney failure for as long as possible. Even then the previous calculation was unlikely to beat the average wait time of 5-7 years, but at least it moved things into the realm of possibility. The new current estimate would be around 12 months before kidney function drops enough to push me into kidney failure, less than 15% kidney function remaining. That's not a good milestone to pass, but it won't be until kidney function drops to around 6% that the poisons will accumulate to a point they become toxic. I can't seem to find any information about whether kidney function decline is linear or if it increases exponentially as less function remains. I might be putting my eggs into a basket with a hole in the bottom.

In the end, there's nothing to be done about it. What will be, will be.

All of my LJ entries used to automatically become Notes on facebook.  Several years ago that changed and the linking was no longer automatic. I  never really spent much time looking into what replaced it but it seems  there is a way you can link the two accounts. I gave it a whirl just  now and I'm not sure what's going to happen. It had a toggle to import  LJ entries into Facebook, but considering I have thousands of entries  I'm a little concerned it might just dump everything onto my newsfeed in  one giant spammy mess. I guess I'm using this as a test to see if maybe  it'll just automatically port over anything new. In case anyone is  reading this and was just flooded by a crapton of posts, whoops, my bad.

State of the psyche

I know nothing and my heart aches.
-Fernando Pessoa

Things have generally been relatively stable in my life the past couple months. Everything has settled down and I've generally come to accept the new normal. Now that the slew of doctors appointments and tests and everything else is over, there's nothing left but the long wait. There's something else that hasn't gone away though and its the hollowness I still feel inside. I know with my luck that ache in my chest will probably turn out to be some new and heinous medical snafu, but I think it's more existential pain than anything physical. I feel more lost and lonely than I have at any point in years. Maybe it was all the turmoil over the kidney situation that scoured all the barriers away, and in the aftermath the scar tissue hasn't yet had a chance to regrow. All I know is I feel it, the ache inside, and if there are tools to fix it, it's not something I have at hand. I've always felt a sort of emotional fragility, but it's something you can try to paper over with defenses and bluster. Sometimes you even forget it's there, but then the ground suddenly moves beneath your feet and everything trembles. I can't help but wonder sometimes if I was just put together wrong. I feel like I'm missing some piece, some vital key that other people seem to have. Maybe everyone feels this way, but if so, I really don't understand how they all manage to carry on so well.

So enough with the melancholy and drivel. Ruminating never fixed anything.

On the plus side, the diet seems to have continued apace. Things have slowed down quite a bit but I still feel progress is being made. I had gotten down as low as 246 or so while practically starving myself down in Orlando and there was the fairly predicatble rebound upon getting back home. Since then, I've managed to creep back down and I've crossed the 246 barrier again in a slow and steady manner. I hope that I'll be able to cross the next barrier within a month or so but I'm already in uncharted territory. The sad and humbling fact is that for all of this effort, it'll still be 20 pounds until I'm just considered 'Overweight' according to the BMI. And I guess that is the goal, as laughable as it seems. 20 pounds till I can cross out of Obese and become simply Overweight. Damning someone with faint praise indeed.

I think what I really need is to reach out more to people. It's not a skill I've ever had and I feel like a blind person fumbling with numb fingers. I've looked around for meetups or other events, but nothing seems to fit. Maybe I just need to find a new hobby of some sort.

A chasm deep and vast

I realize that I live on the bubble of insanity. I feel the weight of human suffering, loneliness and despair on me all the time. It's not getting easier; if anything, it's always right on the edge of my skin.
-Erwin McManus

I read something recently that suggested that lonliness is an evolutionary adaptation creatures like humans who live in packs and form societies. The idea being that it's very hard for a solitary human to survive on their own. While a bear or a tiger can do very well on their romping through the forests or savannah, it's a bit harder for creatures without sheer physical attributes who rely more on knowledge, technology, and group efforts. Like most everything in evolution, it always comes down to the carrot or the stick. Either your behavior is sculpted toward certain activities that are pleasurable or you are taught to avoid those that bring pain. That's what loneliness is in the end. It's an emotional pain to keep us connected to one another. It's what keeps us from wandering off into the wilderness, setting off on our own where generations of evolution have shown that survival is much more dicey than if we stayed with the group. No doubt that those who felt a more profound sense of loneliness would be more likely to stay with others and that probably helped them to survive and pass down the trait to their offspring.

While this might have been evolutionary advantageous in general, it's clear that many of these systems can short circuit and actually cause problems. Consider physical pain which is there to let us know about damage to the body and to encourage us to avoid that sort of damage. That works all fine and dandy in most cases, and we'd all probably be in quite a bit of trouble if we lacked any ability to feel pain, but when the system breaks it can do more harm than good. If someone suffers from chronic pain for which there is no cure and no surcease, then all the pain does is bring pointless suffering.

Maybe it's all this technology. It feels like we're more connected to one another than we've ever been and yet all it seems to do is make the loneliness feel that much more stark and unbearable. Perhaps there were once social constructs and skills that every child learned to help them cope, but if so I fear it's a lesson that I failed to learn somewhere along the way. It's almost certainly too late now to figure out whether it was a quirk of genetics or environment, and in the end, what does it even matter? The cause is immaterial when you're left staring at the broken pieces in front of you with no ability to put anything back together.

Have you ever thought about what your life would be like if you could go back in time and change something pivotal? Would you even be you anymore if you did? If the you that was was changed to be smarter, or richer, or prettier, or more loved, or more accepted....the you of today would hardly be the same person. Is that simply another form of self-annihilation? Maybe it's just as well.

Which would make you feel more terrible? To know that in all the multiverses of your life, this current incarnation of you is the best that any other you has managed to achieve or that in every other reality things were better? I guess that it really doesn't matter in the end. What is, is, and it's all we'll ever know.


Loss the weight, the less to hate

You sometimes think you want to disappear but all you really want is to be found.
-Kid Cudi

So it looks like I hit another milestone in this whole weight loss endeavor. I stepped onto the scale today and I saw 259.0 staring back at me. I think I mentioned before that I don't think I'd ever been under 270 before, at least not in the past 25 years, so this is really uncharted territory. I guess the odd thing about it all is that it's not really getting harder as it goes, just slower. I'm sure the depression is helping out with things, but I just don't have much of an appetite really. I almost feel like that entire part of me is just locked away and hibernating somewhere. It might actually take less effort to just stop eating altogether, but I'm trying to make sure that I get some caloric intake so I don't get a repeat of that situation where fasting for 8 days sent my cholesterol up to over 400 and likely accelerated the kidney damage. That said, I feel like someone told to toss meat scrapes to a rabid wolverine each time I eat something, never sure if this time it'll wake up and go for your throat. There's probably a very good reason they don't tell heroin users to just inject a little heroin each day.

All in all, I think my body is adjusting a lot faster to all of this than my mind is. If I tell myself to really listen, it seems to be content. We truly eat more out of habit than hunger, or at least I do, and it's those patterns and habits that will always be a problem. Always a need to have more, to fill a hole which never seems to reach the top.

It's funny really. One of the things I find myself doing whenever I'm lying in bed on my back or my side is I trace my ribs with my fingers. I mean, I always knew I had ribs but they were under a multitude of layers of fat. It's not like you can see them even now, but I can feel them as I run my fingers along them. It feels like a ridiculous sort of thing to do but it always fills me with a sense of wonder. Does that little nub that juts out at the bottom of your sternum have a name? I always feel like I should name him as he and the ribs connected to him become more prominent over time. Maybe that's just the sense of lonliness talking.

Anyway, things seem to be moving along. I know that at any point this could all still implode under its own weight and pressure and go sliding downhill once more but at the moment things seem good. It would be another 32 pounds or thereabouts before I got to a point where the BMI chart would simply label me as overweight so it certainly seems a bit early for any real celebration.

No extra credit on these tests

Life is just a slow march towards death.

Got my blood test results today from the PCP. Overall, I guess the results are nothing to complain about. My creatinine went up slightly to 3.06 from 2.97 at the end of December, which itself was up from 2.84 a couple weeks before that. I don't know what the sensitivity for these sort of tests really is so it's hard to tell just how significant an increase all of this is. If it's a true increase rather than statistical noise, I can start to project just how long I have until the kidneys fail completely. At this rate it would average out to around a .1 increase per month and I would have around 15 months until GFR hits 15. Honestly, it'll probably take a few more months of test results to get any idea of the actual trendline but there's still some hope that maybe I can toe this line for a while longer.

My current calculated GFR is 24, which is basically an estimate of the percent of kidney function I have left. I had dipped to as low as 17 at one point back in October, so I guess I should feel happy for the reprieve but it's down from that high of 30 in mid december. 15 is the point where some people start having to go on dialysis. For most, it depends upon how sensitive you are to the poisons that begin to accumulate in your blood. There are all sorts of side effects that start cropping up after a while. Other people try to hold out as long as they can without dialysis but when you get down into the mid single digits, death from uremia starts to loom.

While the rest of my blood test results were generally positive....hemoglobin was around 11, meaning I'm only mildly anemic, total cholesteral was in the 150's though the LDL was a bit high, A1C is still 5.6 so I'm just on this side of normal for diabetes rather than borderline, etc I did get one new crappy surprise. Because this kidney thing is the gift that keeps on giving, my uric acid numbers are way up. Normally, people have elevated uric acid numbers when they consume a lot of meat, especially organ meat. It's what ends up leading to gout, a painful condition were uric acid crystals form in the tissue and I hear it sucks. Well, it looks like uric acid is another thing that my kidneys are no longer doing the job in getting rid of. It also seems that it's one of those things that diet is unlikely to fix. All of the drugs that you would normally use to treat an elevated uric acid level are the same ones that would end up doing more harm to the kidneys so once again, I'm in in the fun position of being screwed coming and going. I guess there aren't any problems yet, but it's nice to know that I'll probably have untreatable gout to look forward to in my future.

Sometimes I really don't get the point of all of this. All of this scrambling about to try to stick one more finger in the dike, to keep ahead of the rising water which will just drown you in the end anyway. Why even bother? In the end, we all fall down....
The only real things in life is the unexpected things. Everything else is just an illusion.
-Watkin Tudor Jones

Frankly, I could use a little less reality then since all the unexpected things in my life tend to be crappy. Everything had sort of slid into a new normalcy lately. All the tests had been performed and I was just pretty much waiting for the transplant center to do their thing and they were taking their sweet time about it. I had switched over from Our Lady of Lourdes to St Barnabas because the later was closer locationwise and they also do way more transplants every year. The downside is, well, they also do way more transplants in a year. It's a much larger program and whereas the people with Lourdes would follow up with me regularly, Barnabas is sort of like a black hole as far as communication and information goes. I hadn't heard from them for almost two months. They did finally give me a ring today and it rocked the boat a bit.

So, remember that cardiac stress test from a couple months ago that came back abnormal? I was a bit concerned at first, as I'm sure anyone would be told that there was disrupted blood flow to their heart and it likely indicated heart damage. My cardiologist pretty much waved it off though. He looked at my other test results and said it could simply mean the stomach or some other organ had obstructed the view and it was nothing to worry about. Since he was so blase about it, I figured it was nothing to worry about. Well, Barnabus said today that even with the cardiologist's clearance, their standard procedure at this point with that sort of stress test result and any prior history of diabetes would be to do a coronary angiography. They would inject a dye and basically visualize the blood flow through the entire heart and see exactly where any blockages or damage was. However, this dye, because of my compromised kidney function, would likely immediately send me into dialysis. That would clearly not be a good outcome so instead they're willing to add me to the transplant list so I can start accruing time but I can't actually be offered any kidneys. I mean, there's overall no functional difference since with a 5-7 year waiting list it's not like there was any chance I'd be offered a kidney anyway in the next several years. Still, it's sort of unnerving to know that the thing that my cardiologist blew off as unimportant was concerning enough to the transplant people to require more testing and worse, that testing would probably destroy what kidney function I have left. As if I needed one more ticking time bomb in my life.

So I guess the upside is I'm on the transplant list? It feels like a pyrrhic victory. The clock starts now but if we're all honest about it, it's pretty unlikely to downright impossible I can wait this out without dialysis at some point. No one like to guesstimate just how long it takes until GFR drops to a point where uraemia starts, but I haven't see anything to suggest 5 years is a likely reachable goal. I'll probably know more when my most recent blood test results from last week come back. Things have pretty much settled down from any large changes and I think that this blood test will give me an idea of what to expect as to just how fast my GFR is likely to drop over time.

On another front, my weight has been stable for a couple months now, hovering between 270 and 280. Ideally I think I want to drop another 20 pounds but it's been hard. I'm so far from where my 'normal' resting weight has been for decades that pushing more weight loss sometimes feels like you're rollinh a boulder uphill. Maybe it's good enough just to try to hold this line and my body will eventually adjust to feel that this is the new normal. I totally believe in the idea of calories in minus calories out, and that most other things that people believe about diets and food is just superstitious hogwash, but.....it's hard not to wonder sometimes if there's more to it. On a calorie counting standpoint I feel I should be doing a lot better than I am. I mean, look at this:

I'm sure that New Orleans set me back a ton, but still it's hard to believe that I'd be averging anywhere near 2800 calories a day. Most days now, I still try to keep things around 1200-1500 and even my slipups don't push past 2000. Either I've got a real math deficiency problem going somewhere, or something else is my proverbial wrench in the gears.

What you don't know, can't hurt you

I hate having to go for all these batteries of tests. Every single time they draw another dozen vials of blood or run me through some scanner I feel a sense of impending doom. After all, various things have gone to crap when I thought things were finally starting to turn around so clearly lightning can strike out of a clear blue sky. Well, maybe not completely clear but close enough. As far as this kidney thing goes, I would have chalked myself up as mostly asymptomatic before the diagnosis came down. I had also been seeing at least a dozen doctors during this period, having had to visit the emergency room for the pneumonia even and at no point did any doctor suggest to me there could be a problem. Looking back now, of course there were some warning signs but they were always things I could explain away. I sometimes berate myself for not paying more attention since I could have known something was going wrong, but if all the doctors missed it, maybe it was just inevitable to begin with.

Regardless, I hate medical tests. It's clear I can no longer trust the fact that I generally feel fine to shield me from the terrible results that might lurk in the depths and which these machines and scanners seem hellbent on dragging to the surface. You can imagine how happy I was then when I finished the last thing I needed to go on the transplant list, a stress test, and everything had come back a-ok. Turns out that the exercise stress test I had put myself through wasn't the type the transplant team needed to see. They needed a nuclear stress test which is done by injecting a radioactive marker into the blood and allows imaging so they can view the blood flow through the heart. I spent around 3 hours and change in the hospital this past monday having the whole procedure done and while it wasn't terrible, it wasn't a bed of roses either. Instead of exercise they inject you with a chemical, dobutamine, which acts to directly stimulate the heart. It sucked. After the injection I immediately developed a headache, nausea, and this weird sense of pressure in my head and chest. It was a surreal sort of feeling and quite unpleasant. Still, once the scans were done I figured everything was good and I could put it all behind me.

I thought that right up until yesterday when the Transplant team at Lourdes called me to ask if I had seen my cardiologist. It turns out they had just gotten the results of the nuclear stress test and it showed there was damage to the heart. The authorization he had written for me to get on the transplant list no longer applied given this new data and I was told to see him for a followup asap. My first thought was it !#%^ing figures. I started to wonder if I had actually had a heart attack at some point and never released it. It could have also been heart damage due to that bout of bacterial pneuomina I had last year that was so severe I had to go to the emergency room. At the time, they actually thought I was in congestive heart failure some of the scans had been so wonky. I eventually got cleared but this brought up all that old dread and uncertainty.

I finally got to stop in today to see the cardiologist and after viewing the tests and double checking my echocardiogram and EKG results, he didn't seem to be overly concerned. He thinks that it's possibly that in some of these scans the stomach can move up and obscure part of the heart which makes it look like there is reduced blood flow. I have no clue how likely this actually is but it would make sense if it were yet something else I could blame on my oversized stomach. He said that he would write me a new clearance note and I should be all good to go on the transplant list. All I have to do now is survive 5-7 years on a failing set of kidneys. Yay.

If it seems weird that I'm not more overjoyed at this 'happy' result it could be blamed on the fact that I have very little reason to trust a lot of these doctors, none of whom managed to diagnose the kidney issues as they were developing. My cardiologist seems like a very nice guy but his practice is a little rinkydink and I know it's just bias and perhaps downright slander on my part, but I frankly don't much trust any doctor who takes Medicaid. I mean, I know the money from Medicaid payments are the lowest and Medicaid patients are generally considered to be trash. I just naturally assume that any doctor that takes my insurance is clearly doing it because they don't have any better alternatives. Isn't the old adage that you get what you pay for? Well, even if he is wrong and it is something terrible going on with my heart, I guess it doesn't much matter. It really is the case where what I don't know can't hurt me. It'll probably hurt future me and that's his problem. Besides, it's unlikely that the heart could do me in any faster than the kidneys already are. Viewed in that way, I'm probably close to invulnerable from all other forms of harm. Nothing will kill me faster than I'm already dying. Well, short of getting run over or shot or something....

Cheer up, the worst is yet to come

Being alone with fear can rapidly turn into panic. Being alone with frustration can rapidly turn into anger. Being alone with disappointment can rapid turn into discouragement and, even worse, despair.
-Mark Goulston

For years now, I've taken my life one day at a time. It was the only way I could find to live where the path didn't lead to grief, madness, or despair. I built a fire and into the flames I tossed my dreams, expectations, the future, and most importantly, hope. I realized pretty early on that hope was the most insidious and even deadly emotion of them all. Hope kills. If you keep hoping for something better, how can you accept reality as it is? 'Leper, outcast, unclean.' Hope is a razor blade disguised as flowers and sunshine, an illusion that can cut deeper than any knife and in the end, almost always does.

This willful tunnel vision, keeping my gaze on my feet, instead of on the path ahead has seen me through some dark times. I try to never think about tomorrow or compare my life to what was, or what might have been. Because of that those times where I do surface can often be jarring. There have been times where I've been forced to recognize just how bad things had gotten, whether due to the pain or wounds or simply the interminable pressure which grinds at you each day, wearing away your resolve until you aren't sure it wouldn't be a comfort just to let it all go. Now, once again I've raised my head to look around and what I have to come to grips with is that I have never been as good as I've been now, not for 20 years. I've lost track of how many surgeries there were by now....though I know it was somewhere between a half dozen and ten. There were countless days of blood and torn flesh, unending pain and weakness, pills which brought nausea and through it all, a certainty that there was no cure in sight. I remember a time driving to gencon where I could barely haul myself to my feet at the gas station only to have blood streaming down my legs to catch in my sandals. I remember trips out with friends or family and I could barely manage to walk more than 20 or 30 feet before the pain and exhaustion would have me leaning on a trash can or bench to catch my breath. And of course, woven through all of it the fear of stigma and the loneliness. The fear of discovery that someone would find my secret and the disgust that would inevitably come with it.

I'm not sure all that much has changed on an emotional level. I'm sure that will take time if it ever comes, but these days I can move without chronic pain and I haven't had to take any opiates in over half a year. For the first time in decades, I'm not exhausted by the most basic of activity and can walk or run or even jump as much as any lardass. Each day I'm not preoccupied with wound care, applying salves and bandages, trying my best to keep disaster at bay, all the while trying my best to keep anyone else from noticing. In short, it's almost as if I have somewhat of a normal life back again, and I still find it almost surreal.

Perhaps it was only fitting then that the kidney failure came along when it did. Just as well that I didn't have too much time to recognize and adjust to how things were before the next fubar came down the line. It's simply another in a long line of things that I've had to take one day at a time and if nothing else, that's something I've become accustomed to over the years. I had my blood drawn at the nephrologist today and this creatinine result will probably be very telling about just what the trajectory the kidney failure will take. My creatinine had been as high as 3.9 two months ago but had actually dropped to 3.3 last month. We'll see if the numbers hold or have started to climb again. They had been going up a point a month before this previous dip and once it hits 10 it's all over. I'm still inclined to not pursue dialysis so we'll see how long I can stretch this out and whether there's any chance things will stablize. Frankly, with the waiting list at 5-7 years, I'm seriously not holding my breath here, but you never know.


domo costume
In the darkness the trees are full of starlight
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