Guess which one is proving easier for me to get a firm grip on? Distinctly bad mood up in here today – you’re forgiven if you skip today’s post and resume reading tomorrow….. when we’re back in happy fun town……
So OK, had my Neurological surgical consult today… (there are roughly 600,000 words in the English language – an average person knows and can use correctly, roughly 15,000 words, a university grad or someone who is well read in varied topics & material knows between 15,000 and 25,000 with exceptional people knowing and using closer to 50,000… these are rough numbers based on a quick Wikipedia search… dear reader, being a curious sort, I tested myself on a website that asks you a number of questions then calculates the relative obscurity of your correct answers – it approximates your word knowledge totals… it guesstimated my vocabulary at 39,000) – good for me…. what’s my point – besides wanting you to know that my verbal penis is bigger than yours……. even with 600,000 words at my disposal…it’s not enough. There just are not enough words to express my utter discouragement, disheartenment & disillusionment at todays appointment.
I’m torn here – because lord knows every single one of you have their own issues and challenges you face daily, and in the name of sweet fancy moses, why do you need to hear the depressing details of my struggles. I’m afraid it’s going to come off as caviling. See what I did there – I could have said whining but my massive vocabulary can’t be held back… it….. well…. it insists upon itself….
I know I said this blog was for me.. but now with so many daily readers I don’t want to disappoint by getting all moody. Nawww…. sorry, today – this one’s for me….
Being at the Neurologist today, things can pretty quickly be put into a crystal clear perspective – the waiting room was teeming with people in far worse shape than me…. people who had no control over their faces, partial or total paralysis, some unable to speak, or see, dead useless hanging limbs, others twisted and contorted, 2 fellas walked, while dragging one foot behind them – for a minute I thought I had stumbled into England in the 1600′s – then my Blackberry chirped and the middle ages vanished. True, I’m not anywhere near as advanced as anyone in the chamber of horrors I saw before me – but it was a crystal ball to where I could ultimately end up. Now that puckering sound you heard was my sphincter, snapping shut.
A good many posts back I mentioned how I had had nothing but great interactions with all my healthcare practitioners thus far, read it here, but these 2 Neurologists and their staff have been the absolute worst by far. What is a Neurologist? Well let me tell you… they are brain surgeons, specialists who deal only with the human brain….. the best of the best – the few, the proud, who have taken on the challenge or specializing on fixing the single most difficult organ and structure in the body and quite possibly the universe – we don’t even know what we don’t know about the mysteries of the brain……. but these brave souls are willing to dedicate their lives to doing the best they can with every ounce of their beings. You know how when you do something pretty easy and someone says “well it ain’t brain surgery” – the meaning here being whatever you are doing is easy, but brain surgery is hard… get it….
Well, right off the bat at Neuro 1 – for some bloody reason, they keep calling me Michael… OK strike 1….. then I spend all my time with nurses and students with the actual doctor breezing in for literally less than 2 minutes, including introductions…… strike 2….. my “case nurse” who is my direct contact, while a very nice lady is not the most sterile tool on the tray, if you get my meaning. She loves to talk and proceeded to tell me at length about my special situation and what I could look forward to happening in the coming months. After about 15 minutes, in which I’m guessing she took maybe 3 breaths, I finally brought up the specific complications surrounding my cardiac issues, she paused …… and then put away the folder and chart she was reading from to OPEN AND READ FROM MY REAL CHART… the whole time she was going over results from another patient…. strike 3…… you’re an idiot.
Neuro 2, based on websites, books, & medical papers I’ve seen and read is one of the top 3 Myasthenia Gravis(MG) specialists in the world, so I was really holding out a lot of hope for my meeting with him. Well after finally seeing me 45 minutes after my scheduled appointment time…… borderline strike 1……. he opens my file to see that, NONE OF MY DAMN PAPERWORK WAS SENT OVER FROM NEURO 1, no bloodwork, no CT Results, NO MRI results, no history, nada…… strike 4 for the Neuro 1 morons…. if they hit strike 6 – I start shooting…. so basically we do everything all over again with him, full work-up. Fill out pages and pages of paperwork… THEN he tells me he won’t be my neurologist, neuro 1 will still be, it’s just that he is running a MG study and they thought I would be a good candidate for him…… Ugggh… Ok never mind borderline…. definite strike 1……
The study is to see what the differences in medication requirements are between people who have the thymectomy versus those who don’t…. so it’s possible due to the luck of the draw I could fall into the no thymectomy group, take this medication for 3 years then at the end still need the thymectomy anyways….. this operation is scary – full scale wide open chest, 8 weeks bedrest blah blah blah…. but there is a good chance that taking out the thymus will eradicate the MG…. BUT not guaranteed. I straight out asked for what percentage of cases see a remission or total eradication of the MG after the operation. He refused to be pinned down to a number even a rough number, only saying a majority – so I pressed him further – what do you mean a majority – like 51% or is it closer to 90% but all he would say is that yes it falls somewhere in the middle of those numbers…
Well I could go on but this is a mighty long post already and my fingers are bleeding from typing so much….. I have an appointment with Neuro 1 on Wednesday so I’ll have more information then… also will see Neuro 2 in 2 weeks to see if I qualify for the study… then I’ll have to take that combined information and see what it means to my 2 different cardiologists… plus my GP….. so the drama just keeps on keeping on….. another round of tons of questions but not many answers….. getting harder and harder to keep my chin up – as everyone and everything keeps moving forward with life while I’m stuck in this moribund suspended animation.
There has to be an end to this tunnel, right?
I’m taking my remaining energy and positivity and am volunteering my design services to some local charities…. who have jumped at my offer. It allows me to keep designing, being creative and somewhat connected to the world of the living, not just the poor saps I see in waiting rooms all over the city. The organizations are happy and grateful for the help and allow me to work at my leisure, so when I have a good day, lots gets done, on bad days.. I do little or nothing…… The charities I’m currently working for are MADD, Heart & Stroke Foundation, Stanley Park Ecological Society & Starlight Starbright (basically Make a Wish Foundation Canada.)
If you read this far…… you need a hobby………. have a great day.