?

Log in

No account? Create an account

Know Thyself....

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

'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.

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.

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...'

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.

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.

Blech

So either Facebook notes is gone or I can't fi d how to access it on mobile so I'm going to use he LJ instead. This is probably going to get whiny so read at your own risk. I feel a need to vent even if it's only to myself.

So the event tonight was to go to Disney springs for bowling at Splitsville. Now I'm not really into bowling but I figured I would give it a whirl if for no other reason than to just meet new people. There was also another event the same night where a bunch of people were going bar hopping via the monorail. Well, given the choice between drinking in bars and bowling, bowling wins.

It turns out that the person who had scheduled the event didn't have a final count of how many people would be coming and so he couldn't make a reservation for the lanes. By the time 7 of us got to the location it would have taken a 2-hour and 45-minute wait to actually get one. We talked it over and decided it really wasn't worth sitting around for that long just to bowl and that since some of the people were hungry we would instead try to find a restaurant to get something to eat. After some discussion and the fact that someone said he was really interested in getting ramen, we decided to walk over to morimoto's.

This was a Saturday at Disney Springs in the height of summer so as you might imagine there were hordes of people everywhere. When we got to the restaurant I went in and asked how long it would take to get a table for seven. I was told that it wouldn't be possible until around 10pm, a hour and a half later. The hostess said that we could, however, order from the bars and get food there.

Now before this event one of the people who was coming had asked if it would be okay if she brought her one and a half year old and whether it was going to be a kid friendly event. Having received confirmation that it was fine, she had her daughter with her. This clearly became a problem as she had a stroller and wouldn't be able to navigate up the stairs with it. I suggested that we all grab a table outside and simply get some of the quick-serve items so that we could all sit and eat together. The ramen asshole said, perhaps jokingly, that he would ditch all of us for the ramen. Frankly, I didn't understand why he couldn't just go to the bar and order the ramen and bring it to the Quick Serve area which is connected to the restaurant and suggested as much but he wasn't having it. The monorail bar hopping group was going to pop over and meet up in a bit so I was of the opinion we should just wait and find a restaurant that could accommodate everyone.

Three of the people decided to venture up to the second floor to the bar while I stayed down with the woman and her daughter and the stroller. After a bit she figured she would try to leave the stroller in the lobby and take her daughter up with her. However, when we got up there she was told that you can't have a kid in the bar area and that she would have to leave. At this point the assholes were all happily chatting with one another and didn't seem to give a damn about what was happening. Well there was nothing to be done about it so I told her I would walk around Disney Springs with her and maybe we could grab something else to eat while we are waiting for the other group to arrive from the monorail bar hopping.

They eventually arrived and, surprise surprise, decided they wanted to go to yet another bar. Well second verse same as the first. Once again you weren't allowed to have kids at the bar and so while most of the group sat at the bar the woman with the child was excluded again. One person was interested in seeing where the original group had gone and wanted to touch base with then. Apparently the assholes had finished their ramen and wandered off somewhere else without any message or notice. Cue third bar. I just sort of gave up at that point. There was outdoor music and dancing between the two bars and we just ended up parking ourselves there. I played with the little girl, who was adorable, while she danced to the music and generally did toddler things.

Eventually the assholes wandered out of their bar, without any sense of awareness, and people grouped up to talk a bit. Since Richard and Melissa were in the restaurant nearby having dinner for their date night, I popped over to tell them people are terrible and see how their night was going. When I got back out everyone had clearly moved on, or went home, or whatever. Out of all the new people I met, only one guy and the lady with the child seemed decent and I never even got a feel for the monorail bar hopping people, with the exception of one woman who I had met previously a couple times and was a lovely person. All I know is that ramen asshole and his two friends are on my shit list.

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.

Tags:

The new, new normal

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

-Unknown

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.

Profile

domo costume
henwy
In the darkness the trees are full of starlight
Facebook Page

Latest Month

August 2019
S M T W T F S
    123
45678910
11121314151617
18192021222324
25262728293031

Tags

Syndicate

RSS Atom
Powered by LiveJournal.com
Designed by Teresa Jones