Was it Mark Twain Who Said...

I feel the need for some sort of reality, sanity, brain on overload, stress check. Due to an issue with my PM Dr’s office I have been Neurontin free since Friday. For the first time in nearly a year and a half I can feel a bit of the brain fog start to lift. Not all of it is gone mind you, but enough to knock me off my sedated butt and notice a difference. This Neurontin free body is possibly about to revert back to its hazy comfort zone tomorrow. Before it does, I’d like to record a few things and possibly get feedback, thoughts and opinions from others. Perhaps I do not need feedback, but instead to just work through this moment…

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My brief RSD/CRPS overview…
June 2008 I stubbed my right foot/little toe causing abnormal pain. I was diagnosed in October 2008 with the beast. It is my, er, opinion that RSD now encompasses the entire right side of my body, with the exception of my face and some of my stomach. Most spreads happened after a sympathetic block or other procedure directly involving a major nerve branch. None of my doctors have confirmed a spread… probably because I am too truthful and tell them I experience more pain in new areas after each procedure. Every time there is a spread I feel as if I go through a grief process all over again, morning the normalcy of the section of my body now claimed by the kingdom of the beast, watched over by an army of sneaky ninja gnomes ready to dice apart my flesh with their fiery electric swords and leave the gashing wound to fight off frost bite.

Over the past couple of months I have watched, or felt, the radius of pain and sensitivity spread to incorporate my underarm and underside of the top half of my arm. Often I wear shirts inside out if I can tolerate them at all. A week or so ago the top of my right hand turned purple and swollen for the first time. I have felt a growing resistance to either flex or close my hand completely. The “signs” are all there, sensations, physical indications, the whole package… yet this feels slightly different from other affected areas of my body… again copying the non-pattern of each spread before it.

Tonight I ask myself a series of questions. Is what I’m feeling now, at this very moment, related to an absence of Neurontin? Am I physically feeling more, like this bizarre, irritating tickle more obnoxious and painful than sticking my finger in an electrical socket? Am I mentally processing more now that part of this fogginess is parting and unnecessarily agonizing over that which I already know to be true? Or am I finally moving to that final step I encounter with each spread, grief over losing the last outpost in my upper right limb to the enemy? If it is grief, then does it have anything at all to do with the absence of Neurontin, or is this just the illusion of coincidence… for I lost faith in that word quite some time ago?

As I continue to struggle with accepting the new Carey, the one changed for good or bad forevermore, there is one piece I do not know I’ll ever find peace with… this fog that will always sit atop my brain, clouding reasoning skills, confusing emotions, slowing thought processes, causing doubt in my own logic. For as far back as I can remember this single attribute has defined more of my being than any other. I pray for something else to fill the void, something that would not have been able to show its amazing beauty had my brain not taken a step off to the side. Although it’s often frustrating not being clued in on the greater plan, I know this life has a specific purpose yet to fill. Now to find the patience while I wait at the bus stop in a remote, unfamiliar land for the correct vehicle to arrive.

Waiting for a Muse

As I sit day after day, awaiting inspiration’s arrival, I have begun to believe it will not arrive… at least not in the form I imagine. My desired muse is to be ushered in on the breath of peace, a wave of love, the flow of freedom. Where is my carefree, pain free day during which I can compose an inspirational message about survival and perseverance? If I was given this affliction for a reason, would it not be to help others through it also? To complete that journey, do I not need to come out on the other side… to witness that this is all for a purpose, a plan? Perhaps it is my own insularity that keeps me blinded from the truth.

More likely it is that on those blessed days I do not feel like sitting at my computer, using what little energy and liberty of spirit I possess, typing an entry for a blog. My good days are not chronicled because I am living them. Who wants to know that I have run a load of laundry on my own, or have gone to the grocery store to choose my own produce? These tasks which were once viewed as menial and every-day are now the very activities I strive to incorporate into my daily existence. It is a good day when I can pretend to be normal, and menial.

Today is a particularly rough day. This week I left my home, in cold weather, three days in a row. The third and longest day was spent in the company of beloved family, mostly in the car, but also included more city walking than my body can now tolerate (maybe 2 city blocks). On each of these days it was important for me to be out of my home, and each time I returned to my bed I knew I would feel the day’s activities in every nerve of my body for days to come… each day compounding the next exponentially. Yesterday I was motionless, leaving my bed perhaps 3 or 4 times all day. It is now 5pm on a Sunday and I have only managed to get myself up once earlier this afternoon.

This punishment I now endure is chosen, for I know the wrath of the beast living inside of me. We are well acquainted after just over a year and a half. Today it consumes my whole body, not just my right foot where it began. Yet I am at peace, as I sit in my gradually darkening bedroom, knowing this time it was my choices that put me in bed for days. I was able to choose the activities important to me. I savor those moments of imagined freedom as I physically escaped my bedroom three glorious days in a row. God blessed me with the time and energy to get to and through my appointed tasks. I was able to engage in conversation, for the most part, and participate in important events. Yes, it was important and worth the pain to make sure my son and I have good, strong, clean teeth. Yes, it was important for me to check in at a doctor’s office. Yes, it was important to spend time with my family traveling to a destination important to them.

Today’s muse arrived in silence, in pain, longing to be released from agony… with the smallest, most beautiful tear resting on its cheek. With this pain comes satisfaction. With this jabbing, searing, aching, poking, slicing, pulling, electric, frozen torture comes the realization that I beat the monster. I was able to be productive, even for a brief moment, while it had its back turned. When the monster roars, I am silent… praying for sleep and more effective pain management tools, and hopefully distracted by the computer. But when it is finally too tired from its rampage through my body, I am in charge… I call the shots… I get to be in control of my own life again… or at least I’m able to pretend.




"As threshing separates the wheat from the chaff, so does affliction purify virtue."
~ Sir Richard Burton

"Everything can be taken from a man but the last of human freedoms, the right to choose one’s attitude in any given set of circumstances - the right to choose one’s own way."
~ Viktor Frankl

"The great art of life is the sensation, to feel that we exist, even in pain."
~ Lord Byron

"In the darkest hour the soul is replenished and given strength to continue and endure."
~ Heart Warrior Chosa

"After great pain, a formal feeling comes. The Nerves sit ceremonious, like tombs." ~ Emily Dickinson

"Life is pain and the enjoyment of love is an anesthetic." ~ Cesare Pavese

"It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience." ~ Julius Caesar

"There is no coming to consciousness without pain." ~ Carl Jung

"Pain adds rest unto pleasure, and teaches the luxury of health." ~ Martin Tupper

"Do not undervalue the headache. While it is at its sharpest it seems a bad investment; but when relief begins, the unexpired remainder is worth $4 a minute." ~ Mark Twain

"The space between the tears we cry is the laughter that keeps us coming back for more." ~ Dave Matthews Band

"We cannot learn without pain." ~ Aristotle

"One word frees us of all the weight and pain in life: that word is love." ~ Sophocles