Wednesday, January 18, 2012

And the Oscar goes to...

Drilled down, pared back, bare necessities, whittled away, stripped to the bone, narrow world view, tunnel vision: phrases like these pop into my head while thinking about the blog post for this week. My world consists of 20 plus hours a day in a hospital bed, 1–3 hours in my wheelchair, and little else.
I am at the tough phase post major MS exacerbation where the dramatic drop in function, the hospital stay, the Solmedrol and its affects are over. I am left to suss out what I have regained, what seems to be permanently gone, and what kind of life I can make with what remains.
This week brought the added blow of a dreaded lung infection and congestion. An ad is running on TV right now that shows sufferers of a certain condition with an elephant sitting on their chests; that is how my chest feels. Neurologists and the relentlessly chipper among the MS community will argue that MS won't kill you and they're right in a sort of pollyanna, rose colored glasses way. It is the infections that creep in to affected body parts like lungs and bladders/kidneys that have a way of cashing in ones ticket. {I digress into my ongoing irritation/envy/jealousy of MS as presented by the national society, "I bike/jog/juggle/climb mountains and have MS, see how great life can be" Where are the wheelchairs, National MS Society?"}
I started this exacerbation so far down that I should probably be rejoicing at how much I have regained. To those looking at and commenting about me, it seems that rejoicing is in order. I hear their words and know I should be grateful that I have as much function back as I do…but all I seem to see is what is missing. My right leg and arm are no longer trustworthy, they are at least 30 to 40 percent weaker than before and my leg can no longer bear any weight. For so long, 12 years, my right side has stayed strong and been the lynch pin that kept me moving independently in my world. Now it is flawed, if not broken. The biggest change seems to be in my pelvis and torso in that I can't seem to sit up without folding up like Jabba the Hut or a too tall pile of wet laundry. I can no longer transfer or sit up by myself and my world is so much much smaller.
In that small world I am almost completely dependent and, to put it crudely, it sucks. Every dropped pencil, cube of ice, clean shirt, color of sock, bite of food, change in temperature, and countless other minutiae of living requires negotiating with another human being. Then, the indignity of personal care: someone washes my hair; too many people ask about and keep track of my bowel habits; nurses, PT and OTs, caregivers, friends, and family come and go. Yet, I stay here the unwilling star attraction of the Janine Show.
I put on my relentlessly chipper, jokey, smiling persona. I try to not be picky about what color my socks are or if my hair is greasy or how much butter I want on my toast. The desire to have control over the details of my days is snuffed out by the fear of being alone. Once something drops to the floor I cannot reach it. If there was a fire, I couldn't escape. If I reach just a little too far and fall out of bed, well that would be a disaster. 
Nighttime is the hardest. My hubbie has to sleep, his working keeps us afloat. I don't sleep well from nerve pain. I swear time moves slower at 2am than at any other hour of the day. Often, I turn on my favorite worship music and have a long talk with God. In short, one thing that keeps me going right now is the movie that plays in my head of me whole and healthy, dancing at the gates of heaven. I've told Him I want cymbals, bells on my toes, veils-the works, "take these shackles off my feet, so I can dance." This is the movie I really can't wait to be an extra in some day.

Thursday, January 5, 2012

With Regrets to my Corpus Callosum and Cerebral Spinal Fluid

I let hope dig its hairy roots into my brain and by last night was entertaining dreams of having my career back, bicycling to work, finally walking the Portland Marathon-the goal I was working toward when I first had symptoms, and planting flowers throughout the endless horizon of possibility that is life as a 46 year old woman without MS. I am teeth grindingly blindly angry and sad-achingly bone throbbing sad to let those thoughts dance around.
Let me back up. My story. My MS story is one long slog through tests, doctors, and diagnoses while also shadowed by faceless bureaucrats who have the power to take away my income and insurance based on one doctor's note. About five years ago the Oregon MS guru and my local neuro had a side conversation and decided I have Conversion Disorder. As if this were some unmentionable, leper-like condition these-two 'men' didn't bother to discuss this with us directly. They left us to find out on our own. Cancelled critical meds, lots or research, a new neuro, neuro psych testing, and the support of family, friends and my counselor: conversion disorder was ruled out-MS of a secondary progressive nature settled in as my diagnosis.
What no one seems to understand is how heart wrenching, dream shredding, world upending it is to have Conversion Disorder bandied about. If you haven't figured it out, I'll ask you to read this in a loud voice, yelling angrily if possible: 
Conversion Disorder is Curable!!!!!!!!!!
On  Dec. 23rd I went to the hospital for five days and encountered my neuro from five years ago. In his little man supercilious fustiness he pronounced me conversion disordered once again and boom, I am down the hope rabbit hole. At least for a few days. Sure, he was an ass. Sure, he refused to treat me with dignity, let alone medical care. There is no love lost between us. But the worst, was opening this pandora's box I had had hermetically sealed. Damn him.
So, I saw my good solid trustworthy MS doc this morning and laid my cards on the table. Bad news. No Coversion Disorder. With two spinal fluid exams 10years apart that were exceptionally high and my new larger lesion: MS all the way and not one of the better kinds. And, some of my inconsistent physical exams come from what he called the way other doctors have treated me over the years. And he put that in my medical record. Thank you! So yeah, happy me. 

Health Update: Home from the hospital last Thursday. Seeing continued improvement in right side, still struggling with spasticity and pain. Prayers are appreciated.