FINALLY, The Gods Smile on Me Ever so Slightly….
I’ve never claimed to be able to predict the future, although it’s true I’ve had my fair share of Nostradamus like moments – I wouldn’t expect to see my name down in the who’s who of clairvoyants – to be honest, I’d feel more comfortable just being known as a run of the mill seer. Now then, having established the proceeding, I’d like to go ahead and make my first public prediction – “This will be a looong ass post” … so there, it’s out in the open, I shan’t be held ransom by my freakish gift any longer… “but how, how Chris, can you know the length of any post you haven’t written yet – what magic is this?”
Well mostly I can tell because I’ve already written a bunch of rubbish and not told you a single thing I wanted to say. Were I a more precise and focused wordsmith, I could probably tell you everything in about 2.2 paragraphs BUT where’s the fun in that? You can get the unadorned facts just about anywhere. I suspect you tune in to be regaled with my particular brand of verbal shenanigans. Sort of like watching Michael Jordan shoot free throws, or Muhammed Ali work the speed bag… I can see from the slack-jawed, bulging eyeball look on your face that you agree….
Ok so what I’m doing here is being a bit of an idiot…. I full well realize that for two days now I’ve put off giving out any information, while telling you that I had information to discuss… and I thought it would be funny to now go ahead and drag that out and actually prolong the telling of the aforementioned information, but sadly it hasn’t turned out to be the cracking good laugh I was hoping it would be… Oh I’m quite sure that YOU find it hilarious. But really, I’m a much tougher audience, and so couldn’t possible be expected to find many laughs in this dreck of a post… frankly I really don’t know how y’all read it day after day… boring lot of tosh it can be….
OK we’ve had our shrimp cocktail, now let’s move on to our main course… Friday of last week I came home and saw there was a message flashing, being the pro-active sort I pushed play. It was Dr. Oger – despite my overwhelming initial reaction of wanting to press delete – I carried on listening. If you will do me the service of recalling who dear sweet Dr. Oger was (the doctor doing the MG study who wanted me in as long as I was willing to randomize my treatments – then having a right hissy on me when I told him I wanted the thymectomy, getting all cry-babyish because my having a preference was tainting his study etc etc)… I’m certain the letters in his name have been changed to Oger from Ogre but that’s beside the point. At the time it upset me greatly because he is literally a world famous neurologist, specializing in MG. So I was quite jazzed to have him in my corner. Until he wasn’t.
So I was more than a little shocked to hear him on the answering machine saying “Hello it’s Dr Oger, I’m just calling to see how Chris is doing, where he is now and what his situation is, how everything is going” – Ummmmm, this can’t be good. What does he want? Seems to me Mr Fancy Pants with all his study subjects and world conferences etc etc doesn’t have time to just call random patients (who aren’t even his patients) shoot the shit and chat about the world cup… I was right. Turns out the study is not his specifically, it’s being run by some U.S. government off-shoot of the CDC in Atlanta and from what I can gather after talking to him Monday, they basically said to him – look get this guy (me) back in the study. I’m a veritable golden ticket of Myasthenia goodness. I have no history in the family, I’m very young to have gotten it, it was discovered in the early stages, I have been responsive to medication, and this is a rare condition so there aren’t all that many cases for them to study. A-freaking-ha… now who’s in the drivers seat mister world famous doctor…huh, I hope you brought you cheque book buddy cause this is going to cost you, turn to the left and cough bitch…
Of course I did none of that and basically only made him admit that yes even though he had previously disqualified me for the study he was now calling back and asking me to be in the study….I agreed – why wouldn’t I? If they can learn something from me and possibly help someone else down the road just by keeping track of everything that happens to me, why not?
—— 1st INTERMISSION ———
Welcome back. The second bit of news takes us to Ontario, First off, a sincere and heartfelt thanks to the health-care professionals in Ontario who under threat of, Jihad-like death, from my parents were kind enough to make some inquiries and ask some questions and really help out by making some solid suggestions and offering some guidance and opinions. It’s been a huge help and much appreciated. In my opinion this is an instance where too much information is actually a good thing… Turns out Ontario is having their own wonderful struggles with waiting lists… Initially, when my Mom laid out their idea – the plan made sense and frankly, sounded too good to be true, much like the concept behind bordellos – sounds good but in reality, scuzzy, dangerous, sad places – or, ummmm, so I’ve heard…
The reality is, by the time all my information had been transferred, then analyzed – all the new sets of tests had been performed and the new time lines were taken into account – the time difference would be negligible, maybe a couple of few weeks tops… not worth the hassle, although admittedly it would have been nice having the family support network around me. Nothing keeps the nurses on their toes quite like a hysterical mother… So in the end we got some lovely information and recommendations but no magic bullet solution to move up any of my procedures by months. Too bad… even though I was trying not to get my hopes up… I sort of did…. a tiny bit…. also Thanks to those of you who offered their opinions, see I promised to keep your comments unpublished as some requested and I did… truth in advertising.
So I’ll be staying here in BC and seeing this all through to the end with the dates wot brought me here…so to speak…
“Little Lord Fauntleroy” is no longer peeing blood, and that’s good news in itself, however he’s gone and gotten himself all gummed up with a UTI. Urinary Tract Infection for the uninitiated – nasty business that… after the blood and pain and hospital, then stones – it’s all topped off with a nice infection. It’s my first one, sweet Jesus are you kidding me – I’m considering constructing an elaborate series of Roman aqueducts to convey the near constant stream of pee, it’s impossible to get to the bathroom as much as required. You’ll get the most spectacular urge to pee – like an elephant on an american beer bender, rush to the loo and then pee about .00000000001 ml – it would take about 50 of these pee’s to wet the head of a pin…. So you finish and before your zipper gets all the way to the top – you have the urge to pee so strong you nearly swoon. Now listen, I’m not a swoon type of guy – so that should tell you something. My Doctor gave me some harsh antibiotic, very very strong, I have had occasion to take some antibiotics in my life but never like these… they affect me like some cheap, wanna-be, no-name chemotherapy, it’s how I imagine Chemo in Bulgaria circa 1972….. I get dopey, tingly, head-achey, sore, sleepy, nausea sets in and there’s still the pee situation. All in all rather unpleasant. I have to take these for 10 days…oh and the pills themselves are the size of Shetland Ponies….seems to me you should never be forced to take a pill that requires a fork and knife…..
—— 2nd Intermission ——–
Welcome back, OK we’re in the home stretch. Over the course of this blog, thus far there’s been a fair amount of Sturm und Drang, really it’s why I started it. A place to rail against my situation and to be able to keep those I care about informed. We’ve had some laughs but for the most part the news reported here has been of a decidedly negative bent. HOWEVER… Yesterday I rec’d some very good news, rendering the whole Ontario issue quite Moot. The date for my ablation was going to be given to me at the end of September, so figure about 6 to 8 weeks after that for the actual operation – putting me in end of October, early November. Then a couple of months recovery and then the Thymectomy, say in January, then 8 weeks recovery I was looking at Spring 2011 before the surgeries were over……
…..I guess Dr Gibson and Dr Evans were able to strong arm the Cardiac Surgeon, because I am scheduled for the Heart Operation, my damn third go around on July 23rd…. yep kiss only getting the date in September goodbye…. They fast-tracked me by at least 3 months….AWESOME NEWS… along with the good, comes bad – before the operation I will have to go back in for another round of IVIG. Despite the crippling pain and post complications it’s imperative that all my systems be working at their peak to aid in recovery and IVIG gives me the best opportunity of that happening. After the pain and despite the bloody pee and infection – my eyes were great for between 3 and 4 weeks, jaw and swallow were also excellent, so it does work – you just have to bloody well walk thru fire to get there…. but we’ll cross that bridge when we come to it.
It’s great news, July 23rd, Heart operation, couple of months to heal then September, October thymectomy (I could be scheduled now, waiting list for thoracic surgery is somewhat less than heart – I could be all done before Christmas…Merry freakin Christmas….and hallelujah… I still have a long haul and some difficult times ahead but maybe just maybe there is a teeny tiny light at the end of this tunnel… let’s hope it’s not a train.
Ok well, this is officially the longest post yet, and it’s taken me just over 7 hours to write. Not in a row silly, write for 10 minutes, rest eyes for half an hour, start again…..rinse and repeat…..very frustrating, may you never find out just how frustrating….
HAVE A GREAT DAY….. I’m not yelling ,I’m excited….