Once upon a time I was a real girl, happily bumbling along through life. But somewhere between a chai latte and glass of savignon blanc I appear to have died. Who knew. Not me. Maybe I'm just as incredibly unobservant as the dinner party guests in The Meaning of Life when Death pays a visit thanks to an iffy salmon mousse. But now I find that I have been reincarnated as a Lab Rat. I'm thinking that this is a bit of a slide downwards on the reincarnation ladder, so I've obviously displeased the gods big time. Maybe it was my love of 80s New Romantic music that displeased the gods? I know that there are few who can truly understand the deep, existential joy of Ant Music. But who knows? All I know is that Ratdom is my fate from now on and testing my crappy little plastic running wheel.
Does anyone ever consider we little rodents when they say, "Why don't we order blah blah blah test". Yep, that's the favourite phrase of every doctor on the planet. What do you do when 50 tests aren't enough? Why you add another, and another, and another......ad infinitum. Well maybe I'd rather sit down and nibble on a big chunk of yellow cheese rather than deal with yet another electrode. Did anyone ever think of that? Go push your own damn lever.
Having Bob in your life means having tests in your life. My life has felt like one giant pop quiz over the last few years. Problem is that I have apparently spent my life doing tequila shots and attending keggers, rather than focussing on my studies. Big F- for me.
I was trying to think of all the tests I've had done over the last three years and it's all started to become one lab coated and alcohol swabbed, blur. I do know my personal highlight was having to pee into a styrofoam cup and collect my wee in a giant plastic juice bottle for 24 hrs. I think my husband's personal highlight was having to carry said juice bottle to the pathology place for me. You know there is nothing you can't face as a couple if your husband is willing to drive around with, and handle a large bottle of your wee.
I have had my Hannibal Lector phase, otherwise known as the tilt-table test (times two of course, because one time is just never enough. Third times the charm though, can't wait for the more invasive tilt. Woo Hoo!). Thank God, I decided to forego the fava beans and ciante beforehand, as the doctor would have worn it all. If you have Bob you will most likely have been lucky enough to experience this joy. I wont go into the intricacies of the tilt-table test you can find that information on many other far more serious and definitely more qualified sites than mine. Basically you get strapped to a bed (not in the kinda kinky, need a safe word, way), and the bed is raised so you are pretty much standing up (hence the Hannibal Lector reference, no creepy leather mask though). The doctor then chats to you, continually measuring your hr and bp, whilst waiting for you to pass out. If you are so uncooperative as to not pass out during this period they then inject you with a form of adrenalin and sit back and let the fun begin. Incredibly unpleassant is the only clean way to describe a tilt-table test. I can however think of a long list of colourful expletives to use. Now I recall being strapped in. I remember saying I'm going to vomit. The world going strange and then..... the next thing I knew I woke up lying on my back with the doctor holding my legs up in the air. I was then given a glass of water, an information sheet on NCS, my salty food list (see my Chiko Roll post, July 09), and a "see you later, you'll be fine tomorrow". Ha! Liar, liar pants on fire buddy. A week later I was still feeling as though I'd just completed the New York Marathon, twice!
I've had a plethora of heart tests: ECG, EEG, 24 hour monitoring, stress test etc. Most on more than one occasion. What I love most about these tests are the little round sticky things they use to attach the electrodes. Without fail I get delightful little round, itchy and sore, welts by which to remember the whole experience, for the next 3-4 weeks. I like to call them my ringworm if people ask. Gotta get some fun outta the whole experience. But that's just me and you've probably worked out by now I'm a little bit twisted. Can I just ask, do they really need to press so hard for the ECG. I swear the tech pushed some of my ribs out through my shoulder blade. OWWWW!!!
Then there are the miscellaneous blood tests. I have given my weight in blood a dozen times over during the past three years. Old Nosferatu would have been able to forego the neck sucking and been able to live an eternity on the amount I've supplied. At one point I was having so many tests that my arm became seriously hypersensitive to the needles. Blood tests to rule out other disorders or diseases. Blood tests to check that I'm not going to keel over from an imbalance due to my meds. There has to be an easier way! Who thought taking copious amounts of blood from the girl who passes out from a low bp would be a good idea? I can see the fear in the nurses eyes every time I go in. She now just pats the bed and tells me to lie down for as long as I need.
Then there are the bp and hr checks. Lying down, sitting up, standing up or any combination of the above. It's like some strange interpretive dance routine. "The dance of the Seven bp Readings"! Hell, I'm an expert at reading the old sphegmomanometer (say that 10 times fast). Who the hell names these things. I'm sure there's some weird little guy sitting in a dark room somewhere with his Star Wars actions figurines, a "What would Buffy do?" t-shirt, with a countdown to the next Star Trek movie on his FB page, trying to outdo his online buddy at making up weird names for medical equipment. Or maybe it was some Swedish guy called Spheg who was really impressed with his moustache. Who knows. My hr and bp can be hard to get at times so this can be hours of fun for those charged with trying to measure it. I have particularly fond memories of a nurse when I was in hospital who kept getting angrier and angrier when she couldn't get either, bruising my arms in the process, and then storming out never to return. I guess she missed the class about Florence Nightingale.
So what do you do when you've run the blood tests, done the tilt-table, the heart tests, the bp tests?? Why an MRI of course. Oh yes, put the claustrophobic girl in the giant circular coffin! OK, I've sat in on quite a few MRIs over the years when my patients were going through it so I knew the drill, right? Well I apologise to every last one of you. All the little old ladies that I suggested an MRI for, I'm sorry. I now know that I was a sadistic cow for doing that to you. Maybe the MRI was my karma? That 1 hour trapped in that thumping fluro tunnel was one of the worst things I have ever experienced. Thankfully, my sweet David was allowed to sit in and pat my leg throughout. I think they gave in due to the shear terror painted across my face. Being in that weird headgear, being forced to be completely still, it was all like some Medieval torture device. David, to be hilarious, later decided to mention how hysterically funny it would have been had a Huntsman spider (my biggest fear being spiders) were to crawl in there whilst I was unable to move. Oh funny, funny man.
And lets not forget the hours of fun involved in the Autonomic Function Test. Yet another reason to strap me up and stick electrodes all over my body. Remember how Neo looked when he finally woke up in The Matrix?, well I was doing my best impersonation that day. I'll never look at a balloon the same way after that horrible valsalva test. Worst thing was I knew the neurologist who did the testing, had worked with him in the past. He decided he'd tell me really bad doctor jokes to make me feel comfortable. This did not make the time go quicker. Although I will have to say he did give me the clearest and best discription of what the hell my body was doing. He was also the first doctor to tell me they don't need to make you pass out on the tilt-table test. He showed me on the graphs where everyting dropped as I was on the verge of passing out, this was when he quickly put me back down, thus avoiding the crappiness of fainting.
Then there were the gastro tests to see if there was an underlying gastro reason for my perpetual nausea. Cameras both ends. You know you have no dignity left when you get to lie on a cold table in a hospital gown and some strange man places a camera up your butt. And lets not forget the "cleansing" that must occur prior to the camera/butt incident. It's just pleasantness, followed by pleasantness.
And you just know the tests will continue. You can say no, but the reality is you need to try and find out what is causing Bob if you are ever to have a hope of finally getting rid of him.
In the words of the fantabulous Smashing Pumpkins and their classic, Bullet with Butterfly Wings (1995):
Despite all my rage
I am still just a rat in a cage.
Cheers
Templeton :)
(Allrighty, due to popular demand I will clarify the Templeton reference. Apparently it's a little obscure. Templeton was the rat in Charlotte's Web. Not that exciting I know just my little bit of sad brain fog humour. Why I can remember an obscure character from I book I read as a child and not remember the names of my children at times, is just one of the many mysteries of Bob).
well said. im just starting on the road to 'tests. after the mri yesterday i sat and cried. i didnt want to be poked or proded anymore. after digging a needles into my wrist, my other wrist trying to find a vein 5 or so times i didnt want no more.
ReplyDeletewoke this morning realising i have to continue on this quest, to the end.
your post was so accurate. done most of the tests. when will it end?!
xxx
Tests test test, lab rats we are and you didn't even mention the fact that the meds they perscribe are often trial and error as well. I remember being in the hospital for a week to get a diagnosis, after three days of blood work I started counting the number of viles they were taking. By the time I left my count was 62, and that didn't include the ones before I started counting. I'm lucky my coc didn't think the tilt table test was necessary, he said the pulse & bp at different positions was enough, why put me through the agony, and the weeks worth of recovery. Thanks for another great bob blog!
ReplyDeleteMichele
that's a LOT of tests!!! I guess if i started counting back when I started the MRI's and seizure tests back when I was just a kid, then well I wouldn't even know how many tests. According to my dys dr. all those diagnosis were just part of dys, but no one knew it yet. So I guess I could say i've been having tests pretty much since I was around 11? so now for almost 18 years or so I've had tons of tests, and finally I know why I had all those problems! tests stink, but if I get answers now I'll do any test they want me too! I just want some sort of at least semi-normal life! Times that I can get up and enjoy life instead of sitting and watching it pass cause my body doesn't know what it's supposed to do!!! lol Nice blog... conveys the feelings well!
ReplyDeleteHi Miranda I hear you on the testing for years. I've been crook since I was a child. Started with arthritis, then endo, then fibrocystic boobs and,......all the way up to Bob. I feel like a life long lab rat if I really go back. I did however, have some years of functioning pretty well prior to Bob though. The last 3 years have probably been the most intense bouts of testing, I'm starting to think I have nothing left for the docs to look at!
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