Kickin’ it with J.B.

I’m in the kitchen and the fireplace in here is blazing.  I know it’s not the nicest thing in the world, but I’ve come in here as a little hideout from my visiting relatives.  They are great people and I love them and I’m glad they came, but they are really loud and I can’t take that for very long.  I’ve waited until things quieted down even more to start writing.  I found some Jim Beam in the cabinet and there’s ice in the freezer so I’ve poured myself a drink, gotten comfortable, and here we go.

If you’ve got to do dialysis, then you might as well embrace your fate and get on with it.  I’ve always said that my dream dialysis treatment is to have my machine set up on some gorgeous cabana deck overlooking the water as it rides up and down the beach.  The time would be late afternoon, so that I was in the shade but still warm.  I think three hours like that five days a week and I wouldn’t complain about dialysis at all.

As far as reality goes, and me living in it, I came pretty freakin close to having the best treatment a patient could imagine.  Admittedly, there was no unbelievably attractive female tending to my every single want and desire, but like I said, I’m writing with a realistic perspective.  The treatment started sometime soon after nine o’clock, following a great waffle breakfast cooked by mom.  My room at our place in Maine is at the back of the house, so it doesn’t have a great view, but there are thick woods about fifteen feet removed from the windows, which were open.  Fresh air was constantly circulating, which you, if you’ve ever been in any dialysis unit, would know, is one of many things never allowed to patients or their visitors.  For some reason, my access pressure was good enough to allow me to get up to 500 ml/min within the first ten minutes or so of starting.  This accomplishment usually takes thirty to forty minutes of slowly creeping up the speed.  I comfortably lied in bed, feeling neither too hot or too cold, and watched The Wire, Season 5.  It’s a great show that is extremely captivating as long as you’re not trying to watch it tired.  Despite the fact that putting in my arterial needle hurt like a bitch, the actual treatment proceeded with remarkable ease and comfort.

I’d like to take this chance to respond to reader K-Monay’s inquiries following my post “Maine at Last.”  I appreciate all my readers and would certainly encourage anyone to submit any feedback or questions they may have.

First, the gossip.  Rose has begun a brief summer fling with an island boy I will kindly refer to as “Chimp.”  While he seems to have a couple redeeming qualities, I can’t help but feel that his excessive banana consumption, tree swinging and poo throwing will emerge as significant issues in their relationship.  We will have to see how this love develops come the fall, but I have my doubts.

I strongly object to the suggestion that Razzle is anything short of a fine and honorable lady.  Yes, she has slept around, particularly on the right side of the far couch, but I find no reason to fault her for this.  Further innuendo at her expense will not be tolerated.

Finally, the arrival of the “Quadpod.”  I am already here, so only ¾ of the quadpod are necessary to complete the group.   Much like Captain Planet’s team, all members of the pod must assemble for full force to be realized.  Each individual brings different talents to the group.  Mike – an insatiable appetite capable of emptying fridges, drawers and cabinets on command or otherwise.  He has largely learned to control this beast within him, but much like the Incredible Hulk’s anger it can sometimes appear without notice and create devastating effects.  Alex – a willingness to say anything at any moment, most often choosing words and times that lead to intense discomfort for anyone present.  His personal sidekick, Chronsus maximus, can also single-handedly render a variety of rooms inhabitable for great lengths of time. Kousha’s powers can best be described as this – an ability to act in a manner that benefits himself, despite whatever obstacles may be in his way.  Imagine an unwillingness to part with money that rivals that of my ancestors, a swarm of laborers of questionable ethnicities materializing out of thin air or a pyramid of Krispy Kreme donuts.  These are all feats that Kousha can accomplish under circumstances that make them necessary for his own perceived happiness, success or progress.  What prevents Kousha from having an extremely dangerous amount of power is his permanent failure to say “yes” or “no” when put in a socially awkward situation and he desires the opposite of what is nice.  Kousha, Mike and Alex will be here soon.  Maybe this year, with our powers combined, we can slay without casualty, be it human, toilet or other, our greatest villain yet – twin lobster dinners.

weed whacking mania

Yard work is nobody’s favorite thing to do, well, unless you are Kousha’s distant relatives on the farm.  I am in no way related to Kousha and thus do not claim weed whacking, lawn mowing or brush removal as cherished pastimes.  Like log carrying, however, I found that as soon as I accepted weed whacking as my fate for the morning I got quite into it.  The tank was full when I began and empty when I stopped, which took a full hour or more of swinging around my spinning twine of death to accomplish.  I brought down wimpy looking flowers, ugly shrubs – even happy families of grass were viciously torn apart right down to the dirt.  It was a massacre out there and the front of the house has rarely looked better.

swinging in the rain

This was actually written the night of August 19th, 2008, but wasn’t posted until today because of internet availability and general non-computer related business.

At this point my blog is just an amusing idea that I expand upon every time I feel like writing about my life.  I have no readers except possibly my closest friends, brother and sister.  I’m okay with this because I realize I have no idea if I would even want tons of strangers reading about my life.  I’m treating it like a journal, and like I would in a journal, I want to rant about girls and other things about which I wouldn’t necessarily want the whole world to know my specific thoughts.  I’ll have to sort this comfort level out as I go forward.

Today was amazing.  I had a day off from dialysis, which automatically makes a day better than it would be with dialysis. The weather was pretty cruddy early on, so I just sat around and read.  The tide was high in the afternoon so there was little to be done early anyway.  At some point in the morning my father chainsawed some logs for firewood and Scott, Jackie, Rose and I agreed to carry them up to the house.  I was outside a few minutes ahead of the rest of the carrying crew and I found myself drawn toward the homemade swings made of rope, 2×4s and a length of wood bolted between two trees.  Installed over a dozen years earlier, these swings have been a solid part of my youth.  Sitting on them now, finding them to be so much easier to mount than I remembered, I quickly gained speed, coming closer to hitting the overhanging tree branches with my feet every repetition.  Suddenly, it began to rain and I knew that we would not be heading through the woods to retrieve the wood any time soon.  I was curiously uninterested in running inside, so I just kept swinging away under the cover of the trees as the rain gained intensity.  I waited out the shower swinging under the trees for what seemed like a very comfortable eternity.

Maine at last

Yet again I have failed you, my readers, and myself, as a supposed competent human being in the performance of the task known as blogging.  This post is over twelve hours in the making, with minor updates added to the bunch over the course of the day.  However, you will never read the words that I am referring to because I somehow managed to highlight two paragraphs worth of text and magically turn them into an “e” with the pressing of two buttons and the passing of maybe one second.  I have since deleted the “e” and started over with this nonsense.  There must be a fucking undo command of some sort in this blogging layout, but I gave up on finding it.

Anyways, I am in Maine and things are going great.  Great, that is, except for the fact that I forgot something absolutely important and necessary.  What, you may ask, would that be?  It would not be my brand new Jason Statham movie, bag of starburst, running shoes, ipod cord or skittles, these were all remembered.  No, I forgot only the heater, power cords and other attachments to my life preserving, blood cleaning, sweet ass dialysis machine.  You may wonder, how is it possible to forget these things, shouldn’t they be just about the only things you don’t forget?  What you would not know is that they were even packaged and ready to go in two relatively large, clearly visible boxes.  The logical answer is that things were really hectic leaving the house, the car was full so it seemed like everything must have been in there, Rose and I carried the 70 pound part of the machine so the small stuff seemed less demanding, but in reality I am just a fucking idiot.  Everyone is sometimes.

What kept me from having to either a) drive back down to Boston the next day or b) feel like absolute shit for 36 hours while I waited for the pieces to arrive was the arrival of my cousin Jackie and her boyfriend Scott the next day.  I had to plead with them to drive by my family’s house to pick up the stuff and join us a day earlier than they planned, requests to which they graciously agreed.  This will only cost me constant deriding, some of which I have deservedly experienced already, and perhaps the cleaning of a load of Jackie’s laundry.  She’s nice enough that she may not make me do her laundry in reality, but if she asks, I do owe her.

It’s tough to get internet up here in the middle of nowhere so I’ve been writing this outside in the pitch dark in the porch room closest to the barn where the wireless is based.  The wind is cold and strong and I’m getting myself kind of freaked out by thinking of serial killers and monsters and other horror movie things that could easily sneak up on me from any direction.

I moved inside to the kitchen.  Sam and Kelly were up here with Dad when Mom, Rose and I arrived on Saturday.  They left Sunday afternoon.  It was great to see them and it’s too bad they had to go so soon.

I’ve volunteered to help with a research project based on exploring the incidence of arterial stenosis in aterio-venous fistulas and grafts.  I’m excited about the opportunity because I really like the idea that I am directly contributing to something that could help others in my medical position now and in the future.  The doctor in charge seems like a fantastic person motivated by his feeling of obligation to share his knowledge.  I can’t help but like the idea that I may also be able to get my name on some papers as the data is deciphered.  When reading some background info, however, I experienced some bizarre feelings as I tried to digest some of the information I’ve voluntarily exposed myself to – mortality rates, mean ages of dialysis patients, success rates for fistulas, groups of patients represented by numbers and tables.  I doubt there’s a single person who has read these papers that better understands the direct consequences of fistula malfunction than myself, an individual who considers his fistula as a lifeline and has honest fear about what would happen if it were to fail.  Life on hemo dialysis with a catheter is passable and fine, but I remember those times and I know that everything just feels different, a bit darker and more difficult to be excited about, when there’s a large tube stuck through your chest and two others sticking out of it.  This is enormously unpleasant to think about and I’m really not sure why I force myself to by doing this work.  I guess I hope that I can improve the treatment for others in the future, and that by doing so it brings a difficult yet meaningful positive out of an inherently pain in the ass negative situation.

Hmmm… that wasn’t about Maine at all.  We went sailing today, which was fantastic.  The wind was howling and we were flying in Allegro, our 28 foot cape dory sailboat.  She’s old and smelly, but we’ve had her for fourteen years and there have been too many good times aboard not to lover her.  Bonza and Razzle are great boat dogs, with Bonza as far front on the bow as possible and Razzle enthusiastically stuck to the cockpit area.  Whaler’s busted, which sucks.  Dad tried to fix it today by adding and cleaning filters to remove water from the gasoline.  Sadly, the repairs didn’t do the trick and we’ll have to try something new tomorrow.

I’ve run out of green skittles, so I guess

The view from Allegro

it’s as good a time as any to head to bed.

Thanks to Rose, Kousha and Mike

After dinner on Wednesday I felt inexplicable pain in my stomach that did not subside until this morning.  Highlights of this illness included being unable to move, eat or sleep.  Never before have I been compelled to take a nap on my bathroom floor from fear of fainting.  I’ve actually never napped on my bathroom floor before, and this includes all drunken episodes, thus making this bout with the devil a.k.a. unbearable nausea and dizziness a remarkable new experience.  Sometime Wednesday I decided to forego sleeping entirely and began watching Ghostbusters.  This choice further worsened my night, as instead of simply drifting in and out of conciousness at the whim of the poltergeist inside my stomach, I was also repeatedly jostled awake by Bill Murray’s attempts to tame ghosts such as ecto and zuul, whatever the fuck that is.

Anyways, life got back to normal today when I gave myself two and a half liters of saline in dialysis, which raised my blood pressure from the measley 70ish over 40ish of the last 48 hours to a whopping 85ish over 50ish.  Yay.

Rose was of course a huge help through this ordeal, but Kousha and Mike also played great roles by visiting and spending time with me.  Without their insisting, and mac and cheese making, I wouldn’t have eaten or drank anything all of yesterday.  So thanks to the three of them.

It’s about fsgs, I’m guessing?

When my friend Alex found out that I have a blog he wrote back, “It’s about fsgs I’m guessing?  Or renal diseases in general?”  Well, up to this point it hasn’t been about either of those things.  In due time, I suppose, fsgs, renal disease and dialysis will emerge as regular themes.  The general purpose of this blog is to talk about my life, me, and despite how self centered that sounds I’m okay with it.  At times I’ve wanted to write a book about what I’ve been through and how I’ve persevered through it all, blah, blah, blah -perhaps this will be a way to do it little by little.  Sure, I acknowledge that everybody thinks they’re special and wants to believe it and that I probably fall under that category.  However, no matter how much the haters may hate on it, I believe that I have led an interesting life so far and for that I do give some credit to my close acquaintance focal segmental glomerular sclerosis.

Dialysis tonight went pretty smoothly.  Don came to help, he’s a fantastic guy and I’m very grateful for all the time he’s given me.  I was on the machine for 2:16, which isn’t bad, especially considering I had 1.6 to take off.  The fistula is feeling great even though I don’t think my last angio improved my numbers by much.  Things are definitely going smoothly right now.

cigar musings

Davidoff Mini Cigarillo

I returned home from dinner at Kousha’s and my neighbor was out behind his house enjoying a cigar.  If I hadn’t smoked my last miniature gloria de cubana last night I’d definitely be heading over there to make a cigar buddy.  I’ve looked into the health effects of cigars and at this point it is not exactly clear how bad they are for you.  Despite the fact that it would (supposedly) take the tobacco of 70 cigarettes to fill one large cigar, it is pretty much universally understood that the tobacco of 70 cigarettes is not equivalent to the tobacco of a cigar.  This is of course because cigar smoke is not inhaled down into one’s lungs, but instead drawn into the mouth and allowed to linger just enough for the smoker to enjoy the taste and experience.  I will not argue that cigars are good for you, at least in the medical and biological sense, but I do believe that any experience that relaxes an individual and provides a positive moment benefits one’s general wellbeing.  At least that’s what I’ll keep telling myself.  One thing’s for certain, I am way too young to convince myself it’s okay to smoke “just one a day” as my elderly, classy neighbor has said he does.  Hmmm… next time I talk to him I’ll have to find out when he started.  I’m definitely hitting up Leavitt and Pierce tomorrow.

“Don’t you fucking blog”

I am at Kousha’s right now and he is making some burgers, fried potatoes and corn.  We will feast. Meanwhile, my blogquest continues.  He thinks I am too stupid to blog, for instance, “Do you even know what a blog is?”  I keenly responded, while pointing to his computer with my BLOG pulled up, “That is a blog.”  I applied for a part time editing position online a few days ago, but when I closed the essay response I had to do for the application I saw that there was a spelling error.  Dammit.  Time to eat.  Will blog more later.

Screwed up already…

I was already two or three paragraphs into a hilariously worded first post when I realized that I had written it under the “Pages” section of this site.  Aaargh.  Perhaps blogging is not for me.

At lab today I worked at the confocal microscope taking pictures of my stained kidney section slides.  My project is coming together and I’m quite pleased about that.  Something odd happened at lunch though.  I sat in the “tea room” where all the scientists are supposed to eat and there were two other people in there chatting.  They talked for the entire time I was in there and yet didn’t speak a single word of English.  I’m not exactly sure what language they were speaking.  I do believe they said ping pong a number of times.  Oh well, maybe I’ll learn another language and some organ development over the next year or so.