Top 8 things Toastiest visitors are searching for

I was curious how people who don’t know me stumble upon this site (and probably never return). I’m more amused by the appearance of non-kidney topics.

(List for the year 2011 so far; does not include terms that include variations of ‘toastie’.)

8. charles nelson reilly

7. days of our lives aremid storyline


6. match.com headline

5. healthy kidneys


4. dish network sucks

3. victor kiriakis


2. thirty something

1. av fistula


Undisclosed Location

Undisclosed Location 2011.02.04
While Anderson Cooper reports from an undisclosed location so that Egyptians don’t beat him up again, I blog from an undisclosed location because I needed to get away from home. It is difficult to explain why I couldn’t get sufficient rest at home. I suppose I tried to explain the other day. I suppose there’s no need to be so mysterious. I’m at a local hotel. It’s not a very nice hotel. But it’s free of distractions, other than the distraction of my own mind, which simply doesn’t know how to slow down and heal.

I present the mug above because it’s the reality of what I deal with. I could shave, and that will improve things a tad, and maybe I can get a haircut. But only plastic surgery and an unethical dermatologist can fix the rest.

No, seriously, I’m not accepting arguments on this. (Blog comments are off; FB comments I can’t stop. But I’m writing this as a monologue. I’m really not fishing for feedback). I look at my image, and I think, “Aw, shit, this is hopeless.”

There are lots of thoughts swimming around my head related to what comes next. I barely had started my new job before I had this surgery. I’ll presumably be back there within a couple of weeks, and life will mainly consist of juggling that and dialysis. And there will still be several significant voids to fill.

One move I’ve made that may result in some fulfillment has been the purchase of an SLR camera. I’ve thought about taking photography seriously for a long time. In order to really do that, I’ve needed to invest in a better photographic instrument. It’s caused me some anxiety to take the plunge on the purchase. It falls into a broad category of “things I should really consider getting” that include a fence for my dog, attic insulation, a bike, and a new mattress. It’s taken me several days to even open the box. I’ve done that now, and the result is in the super-graphic image above. My goal with this hobby is actually to capture some of the beauty in this world. I will work my way up.

It may seem ironic that I leave my house for rest, but I’m still up at 2:03am. I’ll be asleep soon.

I’ve got a follow-up appointment with my surgeon tomorrow morning. I treat it as a necessary exercise and not a helpful milestone in my recovery. I imagine I’ll first meet with the interns I came to resent. They’ll comment on how well my incisions have healed. They will have no way of evaluating the internal damage and just tell me how this will all take a little more time. And then a few hours later, I’ll go to dialysis, where I’ll just hope, as always, to leave with most of my blood intact and limited episodes of hot flashes and cold sweats. (I think I need to start researching where the post-dialysis hot flashes come from, since no one else will). At least I will follow dialysis by going home to a location that will not have a dog desperate for a walk and cats desperate for food. Whatever I choose to make/bring back for dinner can make a mess that I don’t need to care about. If I sweat through all of my cheaps and covers, I don’t have to care about living with the same bedding the next day.

Perhaps tomorrow I will open two weeks of mail that have piled up. My dear Aunt J sent me a card, and she deserves a reply, but I haven’t gone through my mail yet. Too stressful to do that at home. I will do that here, in my undisclosed location.


An addendum to tonight’s raw, comment-discouraging blog post:

Congratulations!
You have successfully renewed the domain toastie.st for 2 year(s).
The new expire date is 2013-02-06.

I did contemplate not re-upping. There are lots of good reasons why this site is a bad idea for my time and my internet persona. But I couldn’t come up with a satisfactory alternate plan. I saved something like ten euros by opting for two years instead of one. So it will be another two years before I contemplate the purpose and value of this enterprise again.

Nothing to see here…

If this is your first visit here, my apologies. You were probably expecting something else. I’m quite embarrassed.

Udderly intimidated

Patient blogging sites are routine at major cancer centers now, and friends and family can follow their course, thoughts, and feelings through their blogs. Would blogging benefit in other chronic illnesses? And does blogging provide therapeutic benefits to the patient?

These questions will be discussed at a session at the ScienceOnline2011 conference to be held in RTP this weekend.

And, a couple of months ago, pediatric nephrologist Dr. Pascale H. Lane invited me to participate in this session. I responded that I’d love to participate. I saw no downside. I get to get out on a Saturday afternoon. And I get to go to a sciency thing where everyone will be ten-times smarter and more accomplished than I am! No, seriously, it’s pretty intimidating. I live in a neighborhood filled with Ph.D. candidates who probably “do talks” at conferences all the time. The closest I come to that is the 90-second WebEx demo I did today at work showing how I had put in a URL that pops up a web page.

The whole conference seems appealing, and while I’d be able to sit in on anything and go to dinners and other events by virtue of my participation, I’ve got too much going on right now to have planned any attendance other than by 2pm session on Saturday.

I’m stressing because I have yet to give serious, deep thought to what I’ll have to say. I don’t know how these things work. I’m not an academic. All I know of such events is what I’ve caught on C-SPAN. There should be pitchers of water on the dais. There will be a dais, right?

As of tonight, I have new reason to be nervous. I have just learned from looking at the ScienceOnline program that my panel will include Joe and Terry Graedon of public radio’s The People Pharmacy! Now I’m super-intimidated!

(The blog post’s title is a reference to a product that the Graedon’s frequently tout. I was making a pun, darn it.)

(Man, if the Graedon’s read this, they’re gonna hate me. I shouldn’t mock utter cream until I’ve tried it.)

Oh, and if I had been on-the-ball, I’d have mentioned that Durham resident’s usually don’t appreciate being called “locals of Raleigh-Durham”. But because I have lived in Raleigh, I will let this slide.

Stuff circa January 12, 2011

Dating. Noting to add here. The topic enters my mind every day. I thwarts any potential enthusiasm. I could not even string together three words to a woman I might be interested in merely beginning a conversation with. I wonder if 35 was a strong magnet that accelerator my descent into myself to the point where I will soon fit the conventional wisdom’s definition of the loner. I have a very honest, blunt, occasionally humorus OKCupid.com profile that should appeal to someone. Fair enough, it does, on occasion. Women pushing forty with kids and women who selectively read my profile will tend to thing I could be someone fascinating for them.

Housekeeping. I have not neat back from them this week. I left a voicemail today and a website message tonight. I stressed that my parents were visiting next week, and that I was having surgery, and that it would be so fantastic if I had strikingly clean home to present for the first time, almost ever. Perhaps they’re not too excited about taking on the screwed-up-single-guy client who had the nerve to ask if his dishes could be done even though that’s not on the official price list. Do they realize what heroes they might be too me if they can add some sparkle to my cat-urine-themed pad? If I don’t here back from them, I don’t think I’ll have it in me to start a new search for immediate housekeeping help. Mom, Dad, and Stepmother will see a grotesque abode, and my recuperation will be complicated by constant anxiety. Should I get the cleaning service after all, the remaining clutter will still prompt judgement that I want no expression of.

Dialysis. Dialysis is so hard. It never gets easier. Working full-time on a new job where you are expected to tackle important tasks and keep you dialysis schedule…this is hard. This is draining. This is a purgatory. My life won’t get anywhere as long as I’m going to dialysis. This is just truth. There’s no way around this reality. It doesn’t help matters when I leak blood after being taped up. It doesn’t help matters when the techs around at 7:00 spend their time bashing the other techs and the management It leaves me feeling that, any day now, I’m going to be leaving in a body bag.

WorkI’ve got a 1-on-1 with my manager tomorrow, the first since shortly after I began this position. I’m nervous. I have no idea what he thinks of the job I am doing or what he expects me to be doing. I am too afraid of saying the wrong thing to press these issues. I don’t want this cloud of awkwardness hanging over my job. But I don’t want to rock the boat. I need the job.

Metablogging I’ve made a small effort to write more about my health over the last couple of weeks. I have done this in part because I will be a session panelist at a conference this Saturday. I shall say more tomorrow or Friday…or after the fact. I was invited to this conference because of this blog, and so I could discuss what it’s like to blog about my health condition. I doubt I will spend much time preparing, and I don’t even know how I would go about preparing. I plan just to be relaxed and blunt with my answers when the time comes. It will either be an hour of enlightenment or pained awkwardness, but then it will be done.

Stuff circa January 8, 2011

Dating I went on a date a few days ago, and it was heartbreaking. It was a stark reminder of why I rarely ever go on a date. I battled for ninety minutes to be funny, engaging, and charming. She often seemed genuinely interested in me. I rattled off feelings about being on dialysis and transplant lists that I hadn’t shared with anyone. I, briefly, had the sense that it was ok that I hadn’t been to other countries, held an advanced degree, read five books a month, or looked like every healthy bike-riding guy who comes into Whole Foods. There were five or ten minutes when I had self-confidence. But later that night, I received the “I don’t think we’re a match” email. Rather than pick myself up, dust myself off, do whatever one is supposed to go to keep functioning, I took the rejection as a gravely-wounding piercing. I did not react as such by choice. This humiliating numbness is a physiological reaction I’ve been getting since I was in grade school. Allow myself a moment of being open to something amazing, and I will inevitably experience crushing agony. This never changes. At 35 and stuck on dialysis, the cumulative weight of all of these rejections is indescribable. I do not know anyone who gets how badly this feels.

Housekeeping I had been so excited that I was finally, after years of thinking about it, going to get a housekeeping service to come and clean up my place. I had been reluctant, in part, for so many years, because I feared that such a service would be unable to do a whole lot without me first doing a hefty bit of pre-cleaning. How can they clean the floors if I don’t remove the clutter? How can they clean the kitchen if I don’t do the dishes? But the same fatigue and paralysis that prevent me from going through a stack of junk prevents me from vacuuming the floor. If I can do the first part, why do I need to hire someone for the second? But I reasoned to myself that there must be services to clean the homes of those who pass away or those who simply live in extreme filth and can’t help themselves at all. My place isn’t nearly that bad. These services must know how to help me. But my original fears were realized. When a rep came by to discuss my options, I was told that, no, the cleaners would not throw anything away. They would not do my dishes. They would not pick up piles of stuff. They’d do cleaning and dusting of areas that were already clear, thus validating my theory that only people who have reasonably clean homes actually hire cleaning services in the first place. I still plan to use the service, but my enthusiasm has most deflated. The phrase “putting lipstick on a pig” comes to mind. I’m going to pay them a couple hundred bucks to make my baseboards shiny. The place will still look like a dump.

Work Let’s assume no one from work is reading this. I am overwhelmed by my new job everyday. No one has told me I am failing to meet expectations. No one has told me I am doing anything wrong. But I just assume that I am. My brain is not up for following phone conversations with a dozen people scattered across the world. My brain wants to engage is problem-solving off in its own space and does not want to be interrupted by endless meetings and endless exercises in documenting what I haven’t had the chance to even do yet. And then there’s the small matter of, everyday, wondering how I will put in a solid effort alongside my thrice-weekly dialysis sessions. My body and mind are exhausted, and there seems to way for them to rebound as long as I rely on a machine to filter out toxins from my body. Sounds like a bad time to have changed jobs! Except my last job was soul-sucking; I needed to move on. I don’t regret taking the new job. I regret that I don’t have 2-3 years of savings so I can just do what most dialysis patients do, which is to go on disability.

Dialysis I had figured out what made me so horribly uncomfortable at dialysis, but I never shared the resolution. First, I didn’t want to dwell on how the medical establishment had failed me. Second, dialysis did not turn into a picnic, and it just didn’t seem useful to comment on how dialysis had become just a little less intolerable. At it’s best, I’ll have competent techs and a quiet, pain-free treatment. But, at it’s best, it’s four hours out of the heart of my day that will cause my body to feel uneven for another couple of hours and fail to give me any noticeable boost in energy or affect.

Metablogging I post the croutons as a reminder to myself of a part of myself that I hope still exists, even if it’s easy to cast it off as foolish and naive–the young, unapologetic romantic. Or something like that. I still mourn Toastie Radio, my attempt in the early part of the 2000s to share the music I liked with the world, which at some points, like then there’d be 40-50 concurrent global listeners, came close to being gratifying. In the end, it was a failure, a colossal waste of time and money…and the currency of optimism, of which I’ve always been short-changed.

I posted an unflattering shot of my gut because I wanted to document the time prior to my nephrectomy surgery. I have profile shots that make that distended abdomen far more grotesque. Then again, those shots may be from 15-20 pounds ago. It’s unfortunate that I can be 15-20 pounds down from my heaviest weight and not feel the slightest bit of accomplishment. I don’t feel anything, because my body is weak and completely lacks agility. I’m a sloth. And I’m clearly not having any success on the dating circuit.

I post about politics as a reminder that I’m thinking about these things. I regret that I can’t write intelligently about these issues. It’s much simpler to just throw up a link to someone who had written something intelligent.

When I write a long post like this were I’m stressing about the consequences of my writing, I must put to the back of my mind the thought of who may be reading this. Family members read this. People solely interested in kidney disease and dialysis read this. Former coworkers read this. (I hope no current coworkers read this). If I worry about how I’m coming across, then I’m writing a different blog. Perhaps one day I’ll have a blog dedicated to a particular topic, and I’ll write it in a professional matter, and it won’t be self-absorbed.

For now, above all else, this blog is a coping mechanism for everything. I am not always explicit about how a given post is meant to be therapeutic. Ideally, I’d be writing more. I’d be writing just like this. Granted, it’s 3:52AM, and I don’t strive to be up at this hour on a regular basis. But the benefit of 3:52AM is the lack of inhibition. I’m just writing what comes to mind, and I’m going to hit the Publish button, and this will be up there in the morning. I can go back to sleep with a far-clearer head.

The Terminal (repeat viewing)

A weighty reminder of the passage of time is finding that I need not try to comment on a movie I watched on DVD tonight since I’ve got archival commentary from six-and-a-half-years ago. The pre-Wordpress/originally-LiveJournal entry from June 19, 2004 offered up my thoughts on Steven Spielberg-helmed, Tom Hanks-starring The Terminal.

So The Terminal gets an 8 from me. Critics were mixed; they derided the slow pace; they said that something just “didn’t work”. I don’t really know what they’re talking about. I think expectations just get raised too high when Spielberg directs and Hanks stars. Had this been some low-budget indie with an unknown director and star, it would be getting rave reviews. Basically, for starters, any film with the brilliant acting of Tom Hanks, direction of Steven Spielberg, cinematography of Janusz Kaminski, and music of John Williams deserves to be seen and will be a masterful piece of filmmaking. And perhaps that’s all I cared about, and those factors along warrant a high rating for the film. But I liked the story. I liked the characters. So…an 8.

Also, there was a brilliant device used for the main titles, showed at the end, that I was very impressed with. Unlike most people, I must stay in my seat for the closing credits of a movie. It is a huge pet peeve of mine when everyone clears the theater as soon as the credits begin to role. I guess it is a huge pet peeve of mine that most people go to the movies for FUN, whereas I prefer to go for some cerebral enrichment. For them, the fun is over once the credits role. For me, the cerebral experience is incomplete without the credits…

Upon repeat viewing, my admiration of the film still comes from the score, the cinematography, the acting, and the end credits, more than the story, which on some levels, really doesn’t work.

Anyway, this is a rather random first post of 2011. I didn’t write anything reflective about 2010. There wouldn’t be anything profound to say. Back to the theme of time’s passage, I think a summary of just about ever year would be similar for me.

I just spent a Saturday night watching a movie from my couch. My pets were lying beside me. It is actually an achievement that I let myself commit to watching an entire movie by myself from start to finish without interruption. I tend to get anxious and depressed that I am home and alone on Saturday night, and I don’t allow myself to get immersed in anything that I might actually enjoy for a couple of hours. Seriously. I don’t know why I say this as if it should be so difficult to understand. It’s all crystal-clear to me. I think I expect that most people wouldn’t understand this.

Sigh… There is so much that I’d like to take a stab at writing about. I am way too self-conscious given the people I know who read this.

Weeds etc.

Thanks to streaming Netflix, I’ve just wrapped up five seasons and 63 episodes of Weeds in 55 days. (I had seen Season 5 on a free Showtime preview last year, but it’s much better viewing with four seasons of context).

There is so much in this show I could’ve done without:
- the massage parlor
- drugging daughter with laxatives
- death by sandblaster
- 13-year-old’s threesome
- random alley sex
- cockatoo killing
- Kevin Nealon masturbation
- Mary-Kate Olsen

But the show had me hooked. Mary-Louise Parker. Her facial expressions are one-of-a-kind. Mesmerizing.

Elizabeth Perkins is great, even if Celia Hodes turns cartoonish in later seasons.

Oh, what’s the point of writing about a television show you’ve watched as a solitary experience? Getting rid of regular TV means I don’t watch anything at the same time as anyone else. I can’t say to anyone, “Did you see Weeds last night?” Anyone with Showtime has seen Season 6, and I already accidentally saw too many spoilers.

Geez…the more I think about it, the 63 episodes in 55 days is not something to be particularly proud of.

Ugh. Suddenly very self-conscious about the blog…about myself…I already took one post out of the public domain today. I was complaining about my old bank. Upon further review, it seemed quite…unseemly…and I cared that it made me seem petty and bitter and…being a viewer of 63 episodes of Weeds in the span of two months makes me seem what, then?

Ok…if I’m going to do stream-of-consciousness writing tonight, I should at least complete my thoughts.

I should write about something a little more important. I have kidney news to share. That should go in another post.

Sorry, folks. I am finished with work for the year, and it’s just dawning on me…and I’m not overcome with a feeling of grand relief…more, the enormity of a lot of things are sinking in…and shouldn’t be writing as that happens, at least not here, like this…

Turbo

I’ve fallen into this trap of feeling like posts here need to be meaningful, and spontaneous thoughts and sharing should be relegated to Facebook. Also, posting to Facebook is quicker and easier. But I’ve got the blog. I pay for web hosting. And I know I worry way too much about what I toss up on this site, particularly when there are times when I post intensely personal stuff not seeming to be worried in the least.

Important to me in the moment = Worth putting in here

Time to see what I’ve starred in Google Reader recently and what I’ve posted to FB that deserves a place here.

UPDATE10:32 PM – I see all of the assorted political items I wanted to share, but now I’m indifferent.

I’m starting a new job in a few weeks. That should be excited, and I should write about that…but it’s not so exciting. I’m still entrenched in my current job, and I don’t want to write about that, because there’s a lot of negativity beneath the surface that doesn’t need to come out right now. And I’m not feeling so great about not really getting a break in between these two significant chapters in my life. I desperately need a break. I’m not getting one. Frankly, I can’t afford one.

I still have plenty to say about dialysis, but I don’t want to say it, because it’s really just more of the same. Dialysis continues to suck, and it will continue to suck until I get a transplant, which is still a long, long way away.

Back to politics, again…I don’t think anyone much cares what I have to say about politics. I don’t DO anything politically, so I’m just a guy complaining. I’m a guy complaining who will vote and that’s it; my action should probably be more proportionate with my anger.

I’m back on an online dating site. I could write about that. Or not. Online dating sites are daily rejection subscriptions. Then again, that’s pretty much how life is, too.

So this post is picking up steam now…stream-of-consciousness now…tuning into the type of post where I am saying and will say things I’ll have wished I censored.

And right after I say that, my thinking hits a wall.

New disclaimer

My revised About page beings with a disclaimer about the name Toastie:

First of all, the moniker Toastie has nothing to do with smoking anything. I never felt I needed to explain this, and, in my naiveté, I only realized in recent years that such a conclusion was one people commonly arrived at. Sadly, there is no known origin of my nickname. It was given to me my freshman year in college for reasons that had nothing to do with pot but were otherwise completely random. In an atmosphere crowded by Davids, Toastie seemed as harmless an alternative as anything else.