Directions generally
are useful creatures; yet, they mean little without a working knowledge of
geography and preparation. Neither does it take into account possible detours/delays.
The road to diagnosis and confirmation of speculation/suspicions can only be
described as the paramount of a marathon road trip - with as much detours,
delays, and endless stretch of road as traveling from east to west presents. To
those of you who have ever been the passenger in such a vehicle (such as the one I find myself strapped
into) and have taken/are taking the journey I am, then you understand the
harrowing trip I am describing.
There is no question
about it: this is a marathon; NOT a race....
Endurance is key – as
impatience has no place in medicine. Instant gratification does not exist in
the world of diagnosing complicated cases. Hell, science can't lay claim to any
land-speed records. Reckless disregard for the process of confirmation of one's
suspicions/speculation from the outcome of a specific test, only results in
substandard care and dire consequences. Yet, idle babble/thumb-twiddling is
just as harmful – this is commonly termed as: watchful waiting…. As in, let’s
wait for the other shoe to drop so that symptoms can be matched to the etiology
(in other words: the cause).
There is a balance
between the "wait and see" attitude, and that of a doer: testing,
research, conferring upon other treating physicians - gathering as much information
as possible, because "Pin the Tail on the Patient" is not a
particularly fun game to play. There must be no shadow of doubt lurking about,
when the gavel slams down, punctuating the sentence – binding the diagnosis to
the patient in medical matrimony.
What does all this
mean? - Well, in my case it means:
- The newest UT Southwestern physician, who specializes in/conducts research in neuromuscular/metabolic disorders, has no clue what the heck is causing the health suck I’ve been living with for years. This makes the grand total of physicians who are dumbfounded: six.
- It was presumed that I had mitochondrial myopathy (a specific metabolic disease that my referring UTSW pulmonologists suspected due to the specifics of the first CPEX yours truly underwent in July)..... Well, after a repeat CPEX and a muscle biopsy ordered by the newest UTSW physician, along with a multitude of blood work (to test for other metabolic disease, just in case), mito – for short – has been ruled out.
- despite
that it is hard to diagnose, and that there isn’t a gold standard test to
confirm it. Not one.
SO....
- While I’m waiting to matched with my medical husband, so to speak, I get the sublime pleasure of being mildly electrocuted (an EMG – not a traditional one – a repetitive stimulation/single muscle fiber stimulation version)… to see if specific muscles tested, fatigue/don’t communicate with the nerves. *sigh*
ANYWAY....
I could go on and on,
but y’all should get the get the picture quite clearly: formulating some kind
of clinical picture, that is hopefully clear cut, is a pain in the ass.
Unfortunately for me, the clinical picture is a dung heap. It smells, and is
only useful for the dung beetle pushing it and flies that swarm around it…. I
digress: unearthing a diagnosis is Hell. Pure, unadulterated Hell.
To those of you who
are novices: buckle up. The road to finding out what is wreaking havoc within
your body is laden with hazards adrenalin junkies drool over (minus the medical bullshit, of course).
Also, establish your happy place. Sure, that may sound like a stupid
suggestion, but after your first whirl with the whore that is medical
diagnostics, you will understand the necessity of a place full of fluff,
sunshine, and all around awesome, to replenish your spirits. This includes
creating playlists that fits each situation: the bad health day playlist; the
“Hey, I feel somewhat human” playlist; the “It’s game-time” playlist; the “Fuck
you world/ fuck you doctors/ fuck you disease that I wish would die a thousand
horrible deaths” playlist; etc. etc.
More important than
the above mentioned happy place and embellished playlists: the establishment of
a tight knit support group. Role your eyes, groan, or cringe all you want, but
you are going to need loved ones present. Preferably family/friends you don’t
wish for the universe to swallow up (as
in: you are more than happy to share the planet with these people), and can
rely on – whether it is for emotional support, or to accompany you to
appointments/testing… even to help you when are unable to care for yourself.
Those you choose, should be individuals you don’t mind knowing the
medical/emotional intricacies of your life. I cannot stress just how important
having a tight-knit network to keep you firmly anchored in the present while
sailing through the unknown, is. You are going to be entering into a world unto
its own: both a part of and separate from the outside world – you are going to
need support more than you can know at this point in time.
- I say this, because I – and several in similar situations – live this life. My life encompasses that of a university student, a blue-collared worker (well, for as long as I can, at least), and a patient of a stupid amount of physicians in a ridiculously whirlwind of a research facility/teaching hospital/clinic. Most days I am barely treading water. It’s thanks to a select few, that I have my wits about me.
However, you must
choose carefully. While you are not a stranger to dealing with the intricacies
of being chronically/seriously ill, those you choose to share this journey
with: are. Remember that, always.
For them to watch
you, someone they deeply care about/love, endure what you do: is hard. The
feeling of helplessness is so very potent. Not only that, but your health
struggles will remind them of their own mortality (just as much as it reminds them of yours – even though they’ll never
admit it): it will make them question so much. And the fear, my goodness…
your support group needs to be filled with those who are resilient; who, while
perhaps uncomfortable, care more about you – the beautiful soul living and
breathing before them – than their own discomfort. Those who see you as a
fellow human being: not as a mutated/perpetually sick oddity.
- But be forewarned: the length of friendship doesn’t correlate to strength. Neither is blood thicker than water, in this context. There are going to be times when family will do/say things that will initiate the “slap-a-dumbass” reflex; there will be friends who will disappear off the face of the planet, only to miraculously pop into existence when things appear to be “stable” (though, some will just disappear indefinitely – and that’s okay, let them go). You’ll be pleasantly and unpleasantly surprised – as it is often times, the ones you’ve known the least amount of time who rise to the challenge, and absolutely shine.
Most importantly, be
a friend to yourself first. Be kind, be generous, and be thoughtful. This
journey is hard enough – don’t add more suck to it. Remember you are merely
human, and it is absolutely, 100% acceptable to feel what you feel. Don’t
strive to exude strength at every second of the day – it’s exhausting, and you
are only torturing yourself. Weakness is not giving into your emotions: it is
refusing to be anything but honest – with yourself, with your doctors, and with
those you love. Be who you need to be at that moment. No more… no less….
- Also, try to remember that those around you – be it your loved ones, or the curious/nosey bunch – mean no harm. So, when you are in one of those “fuck off” states of mind, because hey: it sucks being chronically/severely ill (and no one is contesting it – well those with a brain at least), don’t eat anyone alive. Remember their humanity. Besides, it’s not worth the energy.
Lastly, take a deep
breath and slowly blow it out. Once you get the hang of the medical side of
life – with the help of those you trust/love – your footing will be steady. You
are going to do just fine.
How do I know this? –
Because this is a marathon; not at race.
