I first became sick four years and one week ago and have since received countless diagnoses.
Cardiogenic shock. Translation – total system failure (or, as I like to call it, temporary death) caused by heart failure. Dilated cardiomyopathy. Translation – my heart was too large and too weak. Pleural effusion – fluid in my chest cavity. Renal insufficiency – kidney failure. Chronic kidney disease – after my kidneys started working again they became permanently diseased courtesy of a necessary medication. Diabetes – elevated blood sugar levels that cause your every thought about food to be considered through a new lens as irritating as a gnat that you can’t smack. Edema – swelling due to fluid build-up. Anemia – reduced red blood cell function. Hypothyroidism – reduced thyroid function. The list goes on.
One might think I would hope to end the slew of diagnoses,
but not when another condition has gone unexplained for years. I have struggled
with debilitating chronic fatigue for nearly three years now – THREE YEARS. I’ve
dreamed of pinpointing its cause and have gone to great lengths in pursuit of a
diagnosis. In my desperate attempt at solving this mystery, I admit I have
hoped for positive HIV test results, hepatitis, multiple sclerosis and other
diseases and conditions that make most people shudder.
A cure would be nirvana, but I would settle for a concrete
cause – a diagnosis that ascribes science and legitimacy to the way I have felt
all of this time. An undiagnosed debilitating condition is treated as frivolous
by many and is absolute torture for the person affected.
My latest answer-seeking endeavor has been with the Emory
Sleep Center here in Atlanta to follow up on an abnormal sleep study I had a
couple of years ago. My new doctor is an expert in the field of sleep medicine
and seems highly sympathetic to my situation. I participated in a second sleep
study a couple of weeks ago, which was followed by a full day of sleep testing
that was as close as I have gotten to Chinese water torture – more on that
another time.
I haven’t seen my doctor for follow-up yet, but I did get my
hands on the report. And halleluiah, there was indeed a diagnosis right there
at the top: Idiopathic Hypersomnia. The earth-shattering translation goes
something like this: “We have found that you are abnormally tired all of the
time and require an extremely excessive amount of sleep, but we have no idea
why.” Reading that felt like I had finally found the location of the elusive
holy grail, but someone had replaced it with an empty red solo cup.
However, to put my cynicism aside for one moment [wait for
it], I do maintain hope that my doctor will have some suggestions when I see
him in person soon. I don’t really have another choice but to hope, do I? The
good news is that with a diagnosis – no matter how vague – comes the
possibility of treatment. Without that tidy diagnosis code that someone at my
insurance company can type into a little box, all progress ceases and I look
for the next specialist. So with my diagnosis code in-hand and an appointment
coming up soon, I choose to be hopeful in spite of the bitter disappointment
that has defined my last thirty-four months.
