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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.

Less is more

Slump? I ain't in no slump... I just ain't hitting.

-Yogi Berra

I got back from Orlando still holding at 274 pounds which is probably about as much as I could have hoped for. There were a couple of instances where things did tend to go off the rails. I recall one night where I was eating garlic bread sticks and practically drinking butter with particular fondness. Anyway, the idea had been to try to put things back on track and hopefully start the trek to dropping another 20 pounds. Unfortunately both Connor and Maddie's birthdays happened this past weekend and there was pizza to be had. It clearly was not my finest hour.

The plus side of all of this is that the weight has held steady at 274, even with the weekend depredations. I've otherwise tried to calorie restrict as much as I can and I think I've been keeping under around 1500 a day or thereabouts. That no doubt helped to balance the pizza and the ice cream sandwich. My problem has always been an issue of portion control. It's hard to stop once you start and it's often easier to simply not start at all, though that's not a long term solution. Frankly, I don't get how people manage to consistently not finish all of a meal. I'm been a member of the clean plate club since I was a kid....or more to the point, I've been a member of the clean plate, grab another plate, and clean that one as well club. I don't think I ever got past the lesson that if a little is good, more is better. Add to that the fact that I think it's almost criminal to waste food and you can see the quandary.

I'd like to believe that I can make any dietary changes into a lifestyle change one day but I'm not sure that's possible. It seems that it would just require too much rewiring of values and beliefs that are pretty fundamental to who I am. So what I'm left with is the constant application of willpower to ride the brake and that becomes exhausting. Worse, I'm left with the certainty that that will fail one day, whether in drips and drabs, or as a tsunami when the dam breaks.

Well, at least it's not as bad as the Tree of Woe.


Helps build strong bodies 12 ways

'No, as it turns out, I really like being congratulated on my weight loss. I like it so much, it's tragic.'
-Carrie Fisher

It's funny really. I was just grousing to myself the other day that I'm still on such a burdensome calorie restriction and yet, the numbers on the scale didn't seem to be changing any. I had realxed things quite a bit while at Gamehole con, but even then I wasn't eating anything near what would have been 'normal' during my regular diet. I'm not sure if I posted this at some point but the dietician at Barnabus transplant center said that she thought I was already in the zone where weight would not be a problem as far as a transplant goes and she had suggested I move my calorie intake to a more sustainable level, which for my weight would have been around 2600 calories a day. I remember thinking to myself that this woman was freaking crazy. I didn't express that thought but my potassium levels from the most recent blood test was 5.6 while normal is 3.5 to 5.2. This was taken in late October after I had already been on this diet for over 2 months and the levels were still high while basically eating less than 1200 calories a day. I'm pretty sure that doubling my calorie intake would send the numbers through the roof and probably induce a trip to the emergency room. About the only thing I've discovered that actually has 0 potassium in it is Wonder Bread. I guess I could eat a loaf of Wonder Bread a day but in addition to blowing past my sodium restrictions, it just seems like a terrible idea.

So back to the weight issue....I had checked my weight post gamehole con and it seemed to be holding steady at around 283 (with clothes and wallet and phone). It stayed there even a week after returning which I took as sort of disheartening but maybe it was just the extra water weight making its way slowly out as I ended up having more salt than I probably should have on the trip. There was some bacon and sausage that made its way into my orifice. Anyway, I weighed myself this morning and it looks like I'm down to 274, which is close to the lighest I've ever been in the past while doing diets. I know I never managed to break the 270 barrier so this could be a pretty monumental step into unexplored territory. I know Thanksgiving will probably be a problem so I've been trying to prepare for it the past couple days by reducing my intake of everything. All I had yesterday was 4 pieces of Wonder Bread and some popcorn. I'm planning to do the same thing again today and hope that any depredations tomorrow don't send me careening off into a ditch.
In my mind, it is certainly much nicer to end on a high note rather than on a Stout Pig.
-Dave Blood

Went to see another Nephrologist this past Tuesday and it's pretty much a case of 3rd verse, same as the first. There doesn't seem to be anything that can be done as far as treatments or even interventions at this point. It seems clear enough that this guy didn't even feel a followup appointment was necessary. I guess it's not like I really expected anything different but I guess you should check all the bases and he is one of the tops in the field so it's like running out of appeals. Time to face the music. At this stage, full kidney failure is inevitable and the only uncertainty is how long it'll take for the full slide. He did say that my progression is unusual....this process should have taken years but I seem to be barreling down this path to organ failure without any of the other symptoms that should have come along for the ride. It's unusual, but as he put it....'everyone is different'. Lucky me.

Of course, the greatest irony of this is that I haven't felt this good in 15 years. I'm more mobile and with less pain and aches and all the plethora of negative symptoms than at any point I can remember clearly. My trip to Gamehole Con pretty much went without a hitch and I went through a full volunteer shift each day with no issues. In actuality, I ended up doing more hours each day than I was scheduled for, mostly as a player coach but anywhere I could find something useful to occupy myself with. I had been scheduled as Props Assistant whose main job description I was told was to try not to fall asleep while sitting in the dark for 7 hours. Once or twice during that period it would have been my job to hear a call on the radio and then be a gopher, running items to various room DMs or otherwise carrying things about. Frankly, I can't think of many jobs I would be less suited for with 1) my audio processing problems (I fear that radio) and 2) my inability to find my way around in the dark. Chances are good I would have been trying to decipher gibberish while wandering lost, looking for rooms I couldn't find. Jeff suggested that I bump someone at admin desk and take over that role but I couldn't knock someone else out of their position. So basically I just went AWOL more or less. I ended up taking coach shifts in both dungeons and it actually worked out pretty well since they needed the help due to various snafu's and then a very busy Saturday. So if nothing else, I was able to make myself useful.

I ended each night one Thursday and Friday with a run through the last dungeon of the night with Laz, his family, and others who decided to jump in. It was actually a ton of fun and I was surprised I made it through without any problems. Usually, by the end of even a single dungeon run, I'm dragging with aching feet and back and all sorts of other issues but it all went pretty great. There was even an impromptu sing-a-long on Friday as I got to play the Bard and we closed out the dungeon as every NPC, bluehand, and DM pretty much joined the caravan. I got to belt out some Les Miserables with other people and that was a ton of fun.

So back to the kidneys....this nephrologist told me that with how fast my deterioration has been, I should consider putting in an access port now. They basically cause an artifical fistula in the vein, making one segment of it distend and enlarge artificially so it's easy to stab when it comes to hemodialysis. The process takes around 3 months to heal and given how my creatinine is rising, he felt I should get it done now so it's available just in case. He also told me that he doesn't think peritoneal dialysis would be a good option for me. This is the option where you can use the lining of your abdomen to filter your blood and it would be done each night as you slept, It was also the only option for me to not have to be chained to a dialysis machine 3 days a week for 4 hours at a time and made travel, whether it be for conventions or whatever, still a possibility. He said that it seldom works very well for large people and the clearance/cleaning isn't as good making hemo the only real choice. I'd been thinking about this quite a bit even before now but that might have been the final straw....I don't think I'm going to do dialysis.

I know that sounds sort of insane. I mean, when the time comes, it'll either be dialysis or death. I don't know if I'm simply whistling in the dark, as if I could somehow play chicken with fate, or if I'll be able to go through with it in the end, but I don't think it'd be a terrible end to the story. I can't help but even wonder if this is some sort of blessing from an inattentive and very backlogged higher power. It's not like I haven't wished at times for a nice, gentle exit and this might be about as good as it gets. Besides, it might seem sort of ironic but I kind of like the idea of going out on a high note. Things have been various shades of terrible for most of my life and it could be nice to go out on an upswing rather than the reverse. Not that I'm sure things won't start to get pretty crappy in the end when the poisons in the blood start to accumulate, but god knows that I've probably experienced worse. All in all, I might have wished for better but I never really thought it would come about. It could very easily be argued that this is better than anything I had a right to expect.

And the band played on...

I found there was only one way to look thin: hang out with fat people.
-Rodney Dangerfield

It's been a month of ups and downs, but predominantly downs. The weight loss has slowed significantly though I'm still currently at the lowest point in this journey thus far. I just weighed myself this morning and the scale read 282.5. That basically means I'm down 70 pounds and change since this whole thing began. I guess that's sort of impressive given that it's only been around 10 weeks. Of course, what is sort of disheartening is that the vast majority of that weight loss was in that first month. Ever since then, it's been a slow crawl downwards at a rate of about 2-3 pounds a week. I know that's probably what is considered 'normal' and would even be recommended by doctors and nutritionists, but it still feels like a bit of a failure when you consider how much effort has to go to maintain that rate. Even now, my average calorie intake per day is certainly under 1k and while there are some fluxations, I think I can maintain that for the time being.

One of the main reasons I started this weight loss attempt was that I knew that many doctors wouldn't go through with a transplant unless the patient's BMI was around 35. For my height, that put my goal at around 265 pounds, still almost 20 pounds from where I'm sitting now. I knew that no transplant was going to be avaliable for years, but I felt I had to do something and this was one of the few things that was acutally in my control. The funny thing is the nutritionist I saw at Barnabus a few days ago told me that she feels I'm already within the zone that they'd feel comfortable transplanting at. She actually encouraged me to simply maintain my weight which according to her calculations would involve eating 2600 calories daily. That is sheer insanity when even at the level I'm at, my potassium is borderline high. I'm not even sure how I could eat 3-4 times what I do currently and not end up giving myself potassium levels which would induce a heart attack/instant death. Just about everything has some levels of potassium in it. Well, I guess I could eat a loaf of wonderbread a day or maybe eat a bag of sugar. Somehow, that feels like it'd be a terrible idea.

I find myself thinking a lot about a couple years ago when Lori Martin posted on facebook about going on one of those diet programs where you basically gamble that you'll lose weight. You pay some up front cost and then have regularly scheduled weigh-ins at a doctor's office to track your progress. I don't recall if you were actually competing against other people or if there was some set percentage of weight loss you had to achieve, but success would result in you 'winning' more money than what you wagered in the first place. I should really have signed up for something like that before I started this whole process. i think it would make me feel better in the long run if I could have found some way to monetize my suffering.

There's a belt that's been in my closet for years that I haven't been able to use because it was too small. Frankly, I don't even remember when I last used it since I'm not exactly a belt person to begin with but I gave it a whirl for lack of other options the other day and I managed to squeeze into the second to last notch. I guess that's a tangible sign of progress.

Apple Wars: Honeycrisp

Our last apple is the Honeycrisp. This is also the only apple I know I've had for sure since these are the apples that Melissa seems to buy. The Honeycrisp is a large apple, easily bigger than any other apple tested. There is moderate smell of apple to the skin. The first bite was quite crisp and does not seem to have suffered for being allowed to ripen longer than the other apples. The taste is sweet as well as pleasantly tart, certainly not overwhelmingly so. Overall it seems like a nice blend of flavors. The skin is also one of the thinnest I've experienced, detracting not at all from the experience.

Crispness: 8/10
Sweetness: 7/10
Tartness: 2/5 {reverse scored}
Skin Thickness: 1/5 {reverse scored}
Appleyness: 2/5

Total score: 24 points


Apple Wars: Envy

The Envy is what an apple is supposed to look like. Actually, the Red Delicious is what an apple is supposed to look like considering it's generally the only type of apple I've eaten for the vast majority of my life. I know people heap contempt on the Red Delicious but in a way, that's what I've based my entire idea of what an apple should look and taste like. I guess you can say the Envy looks about as appley as possible without being artifical. It is of a medium size and has a rich red color with striations that never fully go to yellow or green. There is a very slight apple odor to the skin near the stem. The first bite is very crisp and the sweetness is immediate. It's not overwhelming however and isn't as fructose forward as the Ambrosia. The flavor is quite appley and any tartness is mostly subsumed. The skin appears to be thicker than average and is a bit distracting. Overall this is an excellent apple.

Crispness: 8/10
Sweetness: 8/10
Tartness: 1/5 {reverse scored}
Skin Thickness: 2.5/5 {reverse scored}
Appleyness: 3/5

Total score: 25.5 points


Apple Wars: Lady Alice

The Lady Alice is a large apple with yellow and red striations. There is a faint apple odor to the skin and the flesh smells quite appley. The first bite was very crisp and had a firm flesh. The flavor is very tart forward though not overwhelming. There is an underlying sweetness but it's more muted than most of the other apples. The skin is noticeable but not distracting. Richard and Melissa are of the opinion that this is the appleiest apple they've tried out of the batch and think it would make for a good source of apple butter or cider.

Crispness: 7/10
Sweetness: 5/10
Tartness: 3/5 {reverse scored}
Skin Thickness: 2/5 {reverse scored}
Appleyness: 4/5

Total score: 21 points


Apple Wars: Rosalynn

The Rosalynn is a larger than medium apple featuring a rich, deep red coloration and irregular yellow dots. There is no smell to the apple skin or to the flesh itself. The first bite was mildly crisp though the flesh has a slightly mealy quality to it which would no doubt increase with ripening. The taste is sweet though moderately so. The skin is thin enough to not detract from the experience.

Crispness: 4/10
Sweetness: 6/10
Tartness: 1/5 {reverse scored}
Skin Thickness: 1/5 {reverse scored}
Appleyness: 1/5

Total score: 19 points



domo costume
In the darkness the trees are full of starlight
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