I thought I’d do something a little bit different today, and write something of a Journal, as opposed to an essay. Those of you who follow my blog probably know that I have a chronic illness. As with any long-term malady, the course and the outcome is often quite unpredictable; there are good days, and there are bad days. As a result of my Genetic mutation, my spine and the structures in my neck are quite compromised. I have known this for a while, but it wasn’t until the other day that my suspicions were confirmed – in a way.
I don’t sleep very well, usually; I have Central sleep Apnea and Insomnia, which tend to keep me up all hours of the night. As a result, I rarely have a normal sleep rythym . In an attempt to fix my circadian rythym the night before last I only slept four hours- hoping that by the end of the day, fatigue would drive me to fall asleep at a relatively normal hour. It worked, and I ended up falling asleep at around 23:30.
I woke at 05:30 feeling pretty well rested, but decided it was wise to catch a few more hours sleep before starting my day. I’ve been taking a new medication for about a week now, and today was the first day I took the full dose (this certain medication requires a slight titration). So I fell back asleep and woke again at 09:30. Again, after looking at the clock I decided I should probably try to sleep just a little while longer. And again I took another medication.
When I woke up the second time I noticed my vision was disturbed- almost like double vision, or some nystagmus. It was noticeable enough that even in my half-asleep state, I felt alarmed. The medication I took was a narcotic pain reliever (I take a round the clock narcotic – once in the morning, and again in the evening). Within about 20 seconds of lying down, I felt this intense wave of euphoria rush through my body. Only not the good kind of euphoria. It was the rough, aggressive kind of euphoria; just tempting enough to remind you too much pleasure isn’t a good thing. Almost like when you’ve passed that point of enjoyable drinking, and everything around you starts spinning, and you know you’ve made a grave mistake. Or just before you pass out, and your vividly aware of what’s coming. It was all of those things and more, mixed into this amalgamation of competing emotions, and associations all pining for my attention.
I knew the feeling right away: I was about to pass out. The paresthesia moved down over my body, and I was coated in a cold sweat from neck to toe. Immediately (and quite reflexively), I sat up in my bed and ran for the phone. I expected standing to worsen the discomfort, and half expected to faint before reaching the kitchen where the phone is stored. Only, quite to my surprise, standing made things much better.
So I got to the phone, looked down in my hand, looked around the room and decided perhaps this was just an isolated incident – quick to go as it came. So I walked decidedly back to my bedroom, sat back, collected myself and pulled the sheets up to my shoulders.
Immediately I knew that was a mistake; the uncomfortable feeling of too much rye and not enough water, the cold sweat and the terror all set in again. I knew something was wrong.
My first thought was that I had somehow slept on my neck wrong and compressed the spinal cord. I thought about how standing made me feel better, and decided that there must be some disruption in the CSF flow to and from my brain – perhaps a Chiari Malformation.
So I contacted my friend Sandy from the ILC Foundation who is both a mentor and emergency contact. She helps people with my condition, and since no one in my family who could actually do anything for me was home, I called her first. Then I called my doctor, then my other doctor, then the telehealth-help line. They all told me I should already be on my way to the hospital.
I knew I couldn’t do that, though. I had no way of getting myself from my house to the hospital, or to the urgent care center (my personal preference). Well, any way except for calling an ambulance – which I would not do… that’s just too emberrasing.
So I contacted my mother to send my father money so he could gas up his car and drive the 40 minute drive to take me to the urgent care center.
After waiting four hours in the urgent care centre, having three needles (two in the hand and one in the arm), an IV and a whole lot of waiting, I was sent home with the sound advice to ‘be cautious’… it was probably the new medication.
This is really what I want to demonstrate, and to talk about. Our medical system is set up in such a way that the patient has relatively no say in the care he receives for his health. Once you report one set of symptoms and signs, you cannot talk of another with validity – whether competing or not. It’s honestly quite an odd thing to experience. It’s the only profession you will experience this type of forced compliance. If you speak with a mechanic and explain the issues you’re having, he won’t walk away. If you speak with a physiotherapist, they listen to all your concerns and take them into consideration. But you’re not even permitted more than fifteen seconds for an explanation concerning something as important as your own life. It’s absurd, counter-productive and incredibly frustrating.
I am under no delusion that because I can read a webmd article and happen to know my body fairly well that I am somehow smarter or more clever than a doctor – a sentiment shared by most of my peers. I understand how powerful a tool a medical degree is – they say on average a general practitioner knows one hundred thousand different facts concerning his speciality (diseases, symptoms, treatments etc..). I’m not advocating for patient oriented treatment (could you imagine if patients were given the power to write prescriptions or send referrals)?!. What I think has to change is the amount of input doctors allow patients to have in discussions concerning their own health. Am I wrong, or alone in thinking patience is a virtue?
I know that the medication I started a week ago is not causing these problems – I know it’s my neck. But if I contest and offer new information, I’m accused of malingering and wasting time. Now I have to wait until the morning to go back and see another physician, draining more money from our economy and wasting more time than was ever necessary.
At the very least doctors should moderate the input they allow patients to have based upon certain key factors – chief among them being the severity of the malady and the competence of the patient. They should be more patient and modulate with less of an iron fist.
Imagine a medical system in which ninety percent of the doctors didn’t have a cranial-rectal disorder?