( I couldn't resist - Alice's face expresses my exasperation to a T!)
In middle and high school, my friends and I went through an Alice in Wonderland phase (yes, we were all cut from strange cloths). We drew characters and scenes, memorized the "Painting the Roses Red" song, and even had Alice-inspired accessories! I went absolutely crazy when Bath and Body Works came out with their Wonderland line. Recently I've had Alice on the brain, but in a slightly different way.
Living with Dysautonomia can be living in your very own Wonderland: everything is unfamiliar, nothing is what it seems, and the longer you have it the "curioser" it gets. You are Alice, trying to navigate the strange and sometimes frightening landscape, and often sitting to sob a loud "I WANNA GO HOME!". The disease is the Jabberwocky that threatens and must be slain, while remission/ a cure is often the ever-elusive White Rabbit (although some do get better with time and treatment). Before getting a correct diagnosis and being taken seriously, most of us see a host of doctors, who can play any character from Tweedledee and Tweedledum (self-explanatory I think) to the Queen of Hearts (self-righteous and not flexible) to the Cheshire Cat (vague and confusing). As you can see, it's a regular ol' tea party.
I've been living in my own, extra-curious Wonderland for a good 5 years now. I was born with complete heart block and have been pacemaker dependent since I was 15 hours old. The pacemaker is supposed to keep my heart rate between 60 and 180 beats per minute. Then I fell down the rabbit hole, and even the technology keeping me alive can't get it together! I have seen my heart rate in the 40s and over 200, neither of which are normal, expected, or even "okay." After catching a rate of 43 on my blood pressure monitor a few days ago, I contacted my POTS doctor, who asked me to have my GP order a 24-hour heart monitor. This would be acceptable, had I not just completed a 30-day monitor, which we still do not have results from (I sent it in over a month ago; the company claims to have faxed the results to my doctor but he doesn't have them, so I had to sign an authorization to have them sent to me). A host of other unpleasant symptoms have been cropping up as well, which has also led to needing to have my electrolytes checked. Thankfully those were normal, but I was left with a glamorous bruise on my arm. SO much drama, so little time.
So I have now completed my FIFTH heart monitor (and have 5 wonderful little red blisters from the electrode stickers to show for it, as I am highly allergic) since stumbling upon Wonderland, trying to figure out what in the world is going on and what to do about it. My original cardiology team ordered the first 3, each time claiming "There's nothing wrong, you're just stressed out, blah blah blah..." And yet, they kept ordering them (think Mad Hatter/ Tweedledee and Tweedledum/ Queen of Hearts/ Cheshire Cat all packed into one department). Admittedly, they did acknowledge that I was having "a few extra heart beats." But, if you can remember, I AM 100% PACEMAKER DEPENDENT!! There shouldn't BE and "extra beats!!" *sigh* Long story - short, I have since found a new hospital.
I suppose on my map of Wonderland, I'm still running the Caucus Race. As the Cheshire Cat said, "We're all made here."
Sydney aka Alice ;)
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