zoloft sad

No phone calls at 4am are ever good...

'Shadow-Lover, court me in my dreams
Bring the peace that suffering redeems.

-Mercedes Lackey

Just got a phone call from my dad.... He's dying of cancer and the prognosis is grim. Things are nearing a breaking point. My mom didn't want me flying back to jersey in the middle of this whole Corona virus situation and I hoped that there would be more time but things are coming to a head. What I really need to do is talk to some of his doctors and find out what the situation is. Shelley's been taking care of that but she hasn't exactly shared the nitty gritty with me. I don't know if some of the symptoms he's describing are just temporary from the new drugs or if it's the start of the downhill slide. He says that he can barely move due to muscle weakness the last couple days.

He clearly wants me to do something about it and was asking if I still had my stash of oxy somewhere. He doesn't want my mom or Shelley to know and I don't really know what to do. It's not like I don't believe in a person's right to call it quits when things are just too much to bear. To be truthful, that's one reason I stockpiled so much oxycontin in the first place back in the day.

NJ does have an assisted suicide law in place from what I'm reading but anything 'official' will no doubt let the whole family know and cause God only knows how much angst. There's also the chance that some of the symptoms could abate or be treatable. There's just too much I don't know and none of this will be possible to sort out from 1,000 miles away.

Just got another call where he's lamenting that mom apparently hid his gun somewhere years ago. I need to call Shelley in the morning and get a better idea of what the situation is. I had no real clue things were this dire. Dad's always had a streak of hypochondria and hyperbole in his nature and it's hard to know exactly where things stand.
food bacon

Today is the day...

Today is a very special day. For the first time since I was probably in my mid teens, I weigh less than 200 pounds. I've flirted with this line for months now but every time I got close there was always some holiday or indulgence or the last few pounds just became increasingly stubborn. Well, I finally crossed the finish line.

Honestly, I'm not sure how if I'll be able to keep it at this level or actually get down to the maintenance weight I want to be able to hold, 195, but it's still a pivotal moment. I'm going to fly home to jersey tomorrow and it's always harder to maintain the weight loss there since there's less activities and exercise opportunities there. We'll see how it goes though.

Oh, and crossing 200 also got me thinking about progress in other areas. Most specifically in the whole weight training arena. I hate lifting weights and I often feel that any progress is ssllooooooooooww. Part of this is because of the low protein diet and partly because I have to literally forced myself to do weight training because I dislike it so much. Well, today I decided to try to document my progress and even I'm pretty impressed. Usually, the most I do is give a bicep a bit of a squeeze to try to see if things are getting any bigger. This time, since I was heading for a shower anyway, I tried a full flex and tense just to see how many muscles.i could coax to show up.

I mean... That's not bad, right? It's certainly progress. I just have to keep it up and see how much further I can go.

Oh, and if you're wondering why I'm posting on LiveJournal again, it's because I made someone a bet I could keep from posting on Facebook for a week. I'm not sure if this is technically cheating, violating the spirit if not the letter of the deal, but I seriously doubt anyone reads this anymore anyway. So many things have changed in the past year or so...
books winnie the pooh eeyore

Climb Every Mountain...

'My doctor told me to stop having intimate dinners for four. Unless there are three other people.'
-Orson Wells

'I think all diets are kind of weird. The word 'die' is in it.'
-Khloe Kardashian

Well, it took me a week but I finally got down past the Orlando low as far as weight goes. Whenever I come back from one of the trips down there I always gain a few pounds until I can put myself back onto some sort of disciplined schedule and things start dropping again. I'm 218.6 right now, which is around a pound lower than I hit while at Disney World and I'm thinking I can try to get to 210 within the next few weeks. My doctors don't think I should drop any more weight though their concern is mostly from a nutritional standpoint. I'm probably already losing a lot of vitamins and minerals from the kidney issues and they're worried about eventual malnutrition. I figure I can have my PCP do a full blood workup sometime this week and see if it's time to start taking multivitamins or something.

I never really understood when people said that anorexia or cutting or other similar behaviors were all about a desire for control, but I can see it now. Well, not for cutting which is still baffling to me but there is a form of perverse pleasure in the restriction as far as a diet goes. Maybe in a world where so many things seem beyond our control, this is at least one area in which you can make your will manifest. I don't think I'm in any real danger of going pathological on this and it's more like cresting a hill and finally being able to see the valley beyond that people spoke of but you never believed existed. I'm sure this is all wrapped up in plenty of other psychological pit traps, mostly involving issues of self-esteem and self-loathing, but I'm trying what I can, to work on what I can. No one ever said it would be easy and baby steps are still steps.

Honestly, I'm never sure it's actually a good idea to be as frank as I often am in these entries. I'm pretty sure this tendancy for oversharing started as a small cry for help, an attempt to just yell out into the void. I'm sure it's probably doing me no favors at this point letting people see what's often roiling around in my head. Even then, it's probably only the smaller pieces since I'm not sure I've ever felt secure enough in a place to actually just let it all go. In the end, we all wish we could find acceptance, and perhaps the hardest place is in our own eyes.
books shakespeare bitter look happiness

Put on your happy face

'Darkness comes. In the middle of it, the future looks blank. The temptation to quit is huge. Don't. You are in good company... You will argue with yourself that there is no way forward. But with God, nothing is impossible. He has more ropes and ladders and tunnels out of pits than you can conceive. Wait. Pray without ceasing. Hope.'
-John Piper

I've often thought to myself that faith must be such a comforting thing to hold on to in the darkest hours of the soul. You can see other people warming themselves by the fire but for some of us cynical people, it's hard to see it as anything more than an illusion, even if we wish it were otherwise. Maybe it's simply a byproduct of too much uncertainty and questioning. When you doubt yourself, the people around you, and the society you live in, it becomes sort of impossible to extend belief to something which by definition must be a leap of faith. Maybe I'm like Kevin Spacey in Se7en, where my sin is the sin of Envy. I wouldn't have thought that was my problem once upon a time but that sense of disconnection and a wish for something more seems to be more and more a part of my life.

This line of thought made me recall the song from Dear Evan Hansen, a show I still haven't seen though really want to. It seems to perfectly encapsulate this idea of never feeling like you fit in your own skin and always holding yourself back. They always say you can't expect other people to accept you until you've accepted yourself. I guess even after all these years that's just something I've never quite managed to do.

It actually wasn't my intent to be sort of maudlin in this entry. I actually had good news to report, though it's still preliminary and subject to a second test. It seems that my creatinine levels have actually dropped in the latest blood test and significantly. It's down to 2.67, which is a huge drop from 3.1. The nephro took another blood test today to confirm the result, but if it's true it means that my GFR is back up to 28, something that I didn't even think was possible. I was hoping for, at best, the lack of a decline. I have no clue why it rebounded and I hope that the new blood test shows similar results. I will admit that I sometimes will have conversations with my kidneys, mostly offering them sympathy for what they've been through, much like how some people talk to plants. I know it's ridiculous but anthropomorphising them sometimes seems natural. It's like finding you have a puppy you've ended up mistreating, without awareness and ill intent, but it doesn't much change things that the little guys are in poor shape. Well, maybe they're actually trying to rally a bit. I guess only time will tell.
sign lotr you shall not pass

Know Thyself....

'Our greatest glory is not in never falling, but in rising every time we fall.'

'Man cannot remake himself without suffering, for he is both the marble and the sculptor.'
-Dr Alexis Carrell

I was just about to go to bed, attemping to get to sleep at a more reasonable hour especially considering all the things I have to do tomorrow before the flight out to Orlando. It was then I realized that it was only a couple weeks until September and that it was right around this time that to borrow a phrase, 'my life got flipped turned upside down'. I took a look back through the Livejournal and discovered that today, August 20th, was the day I started the diet a year ago. It was almost like a dare back then as I had just gotten the kidney diagnosis and decided I just wasn't going to eat and see how long I could continue for. I think I ended up going for 11 days before all sorts of other issues popped up due to the fast(Including my cholesterol level going from normal to something in the 400's I believe). Still, it was the beginning of the whole journey and it's hard to believe that a whole year has passed. So what's the tally then? My weight yesterday was 230.0 (a nice round, auspicious number) which means that from my fattest point around a year ago, I'm down 120 pounds even. I'm not at the lowest point I've ever been and I'm hoping to drop at least another 20 pounds or so but I'm sure going down to Orlando will help with all the walking and exercise.

And how about everything else? The last blood tests seem to indicate there's at least some hope that the kidney decline has stabilized. It's the first blood test where my GFR hasn't gone down since December. It may be a false hope but all I can do at this point is wait and see. I was supposed to see the nephrologist this wednesday and see if the blood test she took confirmed what the primary care found. Since I changed my plans to fly down to Orlando early, I had to reschedule the appointment for 3 weeks from wednesday.

And how about emotional health? Well, I'm generally trying to keep a positive outlook. It's not easy and I think that all those years dealing with chronic pain, illness, and social stigma issues really took a toll that I'm sure I'll never fully escape from. I'm not sure I really know how to really reach out to people though I give it my best shot. My head is generally filled with doubts and fears and I'm sure that in this, I'm my own worst enemy. Still, I am trying. It might seem meager or slipshod but we all try to do the best that we can.

So all in all, I guess there's reasons to be hopeful. Hope is not generally an emotion that I'm all that comfortable with. I remember thinking years ago during the darkest times how I would tell people that Hope Kills. When you have hope, it gives you expectations and dreams. When those dreams crash and burn on the rocks of what is, and not simply what we wish to be....well, sometimes you go with it. Better to accept what is right in front of you and never hope for anything.

Still.....I hope.
books the giving tree

No news is good news

'Expectations were like fine pottery. The harder you held them, the more likely they were to crack.'
-Brandon Sanderson, The Way of Kings

I went to get the lab results from my blood test that I had taken a week before leaving for Gencon. Overall I guess things are fairly good, all things considered. The topline result is that kidney function seems to actually be holding steady, which is sort of a surprise. My last set of blood tests 3 months ago had readings of 3.3 and 3.2, and honestly, I had sort of expected the slow and steady decline in function to continue, and that was if I was lucky. If I was unlucky, I figured the decline would be more precipitous. The creatinine was 3.1 this time around, a slight decrease. Considering the amount of variability and error involved, it's very unlikely that things have actually improved, but simply holding steady is more than I expected. It basically translates to a GFR, or percent kidney function remaining of 23% or so. I also had another blood draw done in anticipation of an appointment with the nephrologist next week and we'll see if those numbers match up. I can't help but wonder if a loosening up of the diet while at gencon had any effect pro or con on kidney function.

I know it's probably pointless to try to anticipate what the future holds in situations like this but I can't help but trying to run the math. Before this latest result, the kidneys were declining at a rate which put me into official kidney failure, 15%, after around 2 years. A person can survive past that point even without dialysis until they get to the single digits when the poisons start to accumulate and it'll be either dialysis or death. Considering that the average wait for a transplant in NJ is 5-7 years, this was always going to be a sort of iffy proposition from a purely mathematical standpoint. I guess all I can do is hope that this current result wasn't an outlier and maybe things have actually stabilized.

As for everything else, things were generally pretty good though a whole bunch of things were out of range. I'm getting more anemic, likely due to the decrease in kidney function over time. The kidneys produce a hormone called EPO, which stimulates blood production in your bone marrow. Damaged kidneys means less EPO and thus less blood. I haven't actually noticed any negative effects whereas in the past when I was anemic I would feel more tired, easily winded, and lethargic. I can only imagine that the weight loss has made a difference in the opposite direction.

My A1C is down to 5.1, which I think might be the lowest it's ever been...at least in recent memory. It's even out of the pre-diabetic range which is nice to see. My cholesterol has also plummeted down to 130 from around 200ish during the last blood test. Things are generally going well enough that the only medication I'm taking now is some vitamin D tablets, the sodium bicarbonate tablets to help preserve kidney function, and the potassium binders. No more blood pressure medications or cholesterol meds or anything of that sort. It's just as well since my doctor is pretty sure it's the medication that caused all this kidney damage in the first place. If I had paid more attention I wouldn't have taken the cyclosporin for as long as I did and all those surgeries with the huge doses of vancomycin probably didn't help either.

The kidney damage is causing other problems in addition to the anemia like elevated levels of potassium and uric acid but neither is dangerously high for now. All I can do now that there's a hole in the boat is bail water and hope that the hole doesn't get any larger.

domo costume

You Load Sixteen Tons and Whaddya Get?

'Keep doing some kind of work, that the devil may always find you employed.'
-St. Jerome

Maybe part of the problem is that this past decade and change the devil has always been able to find me with time on my hands. One of the things I've spent a lot of time thinking about is what I should do to try to get my life back on a 'normal' track, and work and a job often pops to the top of that list. It's often the first thing anyone asks you after you introduce yourself, 'So, what do you do for a living?'. In my case, that's always opened up a ridiculous can of worms and while disability has given me huge amounts of free time and enough income to survive, it's probably time to find something more now that the medical issues allow it. It's a weird situation to be in as all I've really got is way too much education and a personal resume that looks like a nightmare. Who really needs or wants a person with an ABD PhD and hasn't worked since graduate school due to disability? I'm pretty sure that anyone in HR would instantly recognize me as a proverbial shitburger when it comes to employment.

One possible solution to this problem is nepotism. Shelley's a pharmacist with Costco and I think I'm going to try and get a position as a Pharmacy Tech. It's hardly where I thought I would have ended up all those years ago when I turned up my nose at finishing my Pharm D degree and becoming a Pharmacist to persue the PhD instead, but she has the friends and contacts to get people to overlook a resume that will be filled with so many red flags it'll look like National Day in downtown Beijing. And besides, nothing about this life has turned out quite as I had thought or hoped it would. I thought, at first, that to become a Pharmacy Tech I would have to actually go back to school and get some sort of certification but it turns out the certification process consists of a 2-hour multiple choice test. I was a little worried that it would entail a lot of biochemistry and organic chemistry, which I only have vague memories of, but it looks like there's very little that actually requires any sort of science background and most of it appears to be straight memorization. I can finally figure out just how much of my brain has atrophied and whether I still have the chops to cram large amounts of information into my noggin.

I even found a site with 75 sample questions (https://www.pharmacyexam.com/index.cfm/category/136/technician-sample-questions.cfm) and I'm going to find some time this week to take it as it if were the actual exam and see how far I get with no preparation or really, anything other than basic knowledge. Then it'll be down to actually studying for the exam and we'll see how it goes. I looked up the pass rate for the most recent year and the stats were:

2018: 48,862 Exams Administered - 28,058 Exams Passed - Pass Rate: 57%

I guess we'll find out if I'm actually smarter than the average bear.

I told Shelley about my plans and she seems open to the idea. Apparently her and her fellow pharmacists spend a lot of time griping about the fact that their pharmacy technicians are idiots. She actually reached out to a few friends and it looks like she knows a couple who are in pretty desperate need for techs right now. I'm not sure how long it'll take me to get certified, but this could actually be something that works out. If nothing else, it's at least a step forward and if it pans out, it'll be just another part of reclaiming the life I thought was beyond reach. I don't want to get too far ahead of myself, but at least I think there's a path to follow.

'I must go down to the seas again, to the lonely sea and the sky,
And all I ask is a tall ship and a star to steer her by...'
books swiftly tilting planet

The Journey of a Thousand Miles....

'Taking a new step, uttering a new word, is what people fear most.'
-Fyodor Dostoevsky, Crime and Punishment

I've been thinking a lot lately about change. It wouldn't be an inaccurate characterization to say that my life has been in sort of a standstill for the past decade and change. The last 9 months though have been turbulent and I can feel the world tremble under my feet. It hasn't all been good and what sparked the greatest change was the diagnosis of kidney disease and the eventual need for a transplant. Even if you weren't all that enamored with the idea of life, the spector of death is still a wakeup call of sorts. That one event also caused me to think about all the other things that had gradually changed in my life, many for the better. After around 8 or 9 surgical interventions, I'm now more functional than any point in the past couple of decades. I can still remember those times when I was so anemic and striken with chronic pain and mobility issues that simply staggering my way from one trash can to the next at Walt Disney World was a struggle. Even if those days of pain and exhaustion were terrible, they had the advantage of being familiar. I was pretty sure each morning upon waking up what the day would bring and that each day to come would pretty much be the same as the last. Now, things are changing and there's a lot of uncertainty.

I think that it wouldn't be a surprise to anyone who actually knows me to say that I have a lot of self-doubt. It's probably an unfortunate byproduct of too much introspection and the time to indulge in my own thoughts. Sometimes the worst companion you can have in your own head is yourself. Fear of rejection, lonliness, self-loathing, and all of that swirling around in a body trapped by pain and a mind given too much time to ruminate. I'm pretty sure it's not a healthy thing and no doubt caused several quite maladaptive personality quirks along the way. Still, what I think I can say is that I'm trying to be better, and that's the first step. I'm starting to think a lot more of the future, and what I want out of life. I had given up on the idea of most things when all the medical issues cropped up and had pretty much closed the door to hope. Honestly, it was probably the only thing I could have done at the time and still managed to keep sane and breathing. Now though....I don't know.

It's funny really. Most people do this sort of soul searching in their 20's, but my life sort of took a detour. All I'm really sure of at this point is that I have to start taking steps forward again. I'm sure it won't be easy but I've spent years standing still. I'm going to try my best to be the best person I can be, as assinine as that sounds, especially to my own cynical ears. I spoke with Curt about a lot of this while we were at Hollywood Studios and his take on things was to try to remain open to everything without ever hoping or wishing for any particular thing. I guess all I can do is try and see what happens.

books seuss grinch happyface

Cheer up, buttercup

I was looking back through the last 20 entries or so o and I this thing and realized it's a depressing slog. I guess I tend to only write, ramble, and ruminate in here when things are going badly in one way or another. That has to give a pretty distorted view of how things are, especially if I come back one day to try to remember what that part of my life was like.

Things aren't actually terrible. There are quite a few reasons to be generally hopeful and I'm doing my be st to take steps forward. Richard and Melissa have been beyond amazing like always. Sometimes I don't really understand how I ended up with friends like this since I'm pretty sure I did nothing to deserve it. Dice tower con will be in a few days and I'm looking forward to seeing Curt and the others and helping out at the booth.

Mt exercise routine has also continued apace and I should cross my goal any day now. I think I was 228 point something yesterday morning which means I'm less than 2 pounds away. 227 is the magic number because that's the point which the BMI tips over from obese to just overweight for my height. You don't usually see many people celebrating the fact that they're just overweight but it's a matter of perspective. I have to admit I feel pretty proud of myself overall.

When I get back to Jersey on the 10th there's another surgery scheduled for the 11th. Assuming everything goes well, that should be the last that I'll need for the foreseeable future. That's also the end of an Era in a way. It feels like I'm right on the edge of closing out more than a few chapters on my life and, if I'm lucky, starting a new one. There's reason to be optomisitic....I hope.