And so it is, my very first post. I don’t even know where to begin.
The title of my tumblog is a great place to start. If one more doctor/ receptionist/ lab technician/ pharmacist sends those words in my direction once more I will go batshit crazy on them smile and simply say “neither do you!” What does sick look like exactly? Yea, I’ve got a few kinks here and there and my Ticker up and decided it would take a little vacation without giving us advance warning but that doesn’t mean I should “look” a certain way.
As of January 6th 2008 this is what’s on the menu:
I just spent the past 48 hours in bed, in the worst pain I think I have ever felt. But that’s a different post all together and when I’m up for it we’ll cover that story. The important thing is, I am feeling better with each passing hour.
The docs informed me about two weeks ago that it is a good idea to put an implantable defibrillator into my chest. Yikes. That came out of nowhere. I mean, we had this conversation back at the hospital in October but I had passed a test with flying colors so I thought I was in the clear. Turns out, not the case. My Ticker hasn’t performed to their standards at this point so it is more of a safety precaution. It is there to prevent any “bad” rhythms from taking place, which I am vulnerable to since my Ticker is not pumping at the percentage it should be. This leaves things all whacked out and the defib will be there to shock me if things get funky. Once this defibrillator is in, it cannot be removed (well, it can technically but there is some risk in that so they prefer to just keep it in). I would get it changed every 5 years for a new battery.
Over the course of this I have seen many doctors (all whom, I’ve been told are the “best” at what they do). Yet, I have constantly been pin balled back and forth between them, not a single one ever actually giving me a diagnosis. They simply treat my symptoms and wait to see what happens. A lot of times they even directly contradict each other. It’s really fun when that happens.
So, today’s post is one written out of frustration due to the fact that I do not totally trust my doctors. I do not feel they have rolled up their sleeves and made it a priority to get to the bottom of things or take control of my treatment. We still do not know why this happened, and they are quite content in saying that “we may never know”. I am a much different animal in that respect. I will dig and dig. Take the case of the defibrillator for example: two weeks ago this sounded pretty urgent. They wanted to get it in as soon as possible yet, now here I am waiting for a phone call to take place on Wednesday? I feel a lot of times I am backed into a corner to make a decision and things seem urgent and yet these urgent matters seem to become suspended and do not matter when it’s time for the doctor to take vacation. I know what you’re thinking; find new docs. Well, I am always open to going to a new person yet I must say that I have come to believe that this is the current medical climate in the USA. Many doctors are praised for their specialties yet their bedside matter and commitment to a patient and actually getting them to feel better is unfortunately non- existent.
Hence, the title of today’s post “The Waiting Game (or Criminal Activity)”. I call it the waiting game because that is exactly what I am doing.. waiting. Waiting on test results, waiting on a doctor’s phone call, waiting waiting waiting waiting to see what the next step is and if and when I will get that nice piece of 3 inch jewelry implanted into my chest (note: a good Christmas or birthday gift to me from that point on will be chic, fun scarves)! The other part of my title comes from a close friend of mine who has gone through a similar run around and has been on a personal quest for answers; for his health and for well-being. Let’s call this friend “The Kid”. When The Kid hears my tales of dysfunctional doctors visits, waiting room and reception area antics, and the overall circus that has been my medical care, he says two things “you can’t make this sh*t up” and, in reference to the doctors; their waiting games, their contradictions, their lack of information on diet, their lack of interest, and the $300 bill they hand me after each visit in all their specialized glory “it’s criminal kid. It’s criminal activity.”
** It must be said that I am not against all doctors. I have come across some very able, intelligent, and very caring doctors along the way (thank you Dr. Arani). It is just sad that they are so few and far between.
Coming up: Off to party in Cleveland. Woo. I am excited to be going to the Cleveland Clinic and as soon as I have those dates I will post them.