Tuesday, December 28, 2010

'M'ore of the 'S'ame

Met with the urologist today. Resigned to the reality of planning for the replumb of my piping. Weighted down by worry, we waited and waited.
The nurse was chipper and too much like a cheer leader who didn't know the basics of the game.
I was a good patient, armed with questions and 'I Think I can' plans. Usually this doc is empathetic and helpful. Today he seemed hurried and distracted. I could see that while his body was in the room, his mind was caught in some thing, somewhere else.
Long and the short of it: no surgery, for now. And, no sub-cu catheter either. I should be waving pom poms of my own to be rid of the damnable thing. However, I now must figure out how to live with this bladder. The doc is referring us to a rehab doc to help us decide if my hands are able to manage the mechanics of either of the new catheter options.
But, the reality is that after a few minutes with the doc he was summoned to a scheduled phone call and we were left alone. The chippy nurse walked us out with lots of head nods, 'I don't knows,' and let me check on that.
But no answers. I am at home with a non functioning bladder soldiering on. Sludge, slog, slog, slog.
I have already had my first flood, and am facing the indignity of Depends.
While the doc moves on the his next patient, I am left to manage with few answers. What is new about this state of affairs. It feels achingly familiar to the rest of my life.

Wednesday, December 15, 2010

The Sound of One Hand Typing

I made it to a lunch function at church yesterday. An older gentleman stumbled and fell against my weaker left side. To right himself, he clutched my shoulder-digging his boney fingers into the joint. By the end of the meal I was in more pain than I have felt in some time. Now my arm and shoulder are on fire. From deep in my arm pit, cresting over the ridge of the joint and coursing under, along and through the fibers of my arm. My fingers are weak and cold. It hurts so much I can't seem to keep tears from fogging up my glasses.

I am so very, very tired. Tired from not sleeping. Tired of a simple accident sending me to such a dark place. I even called my doctor for help, even though my gut knows that nerve pain like this is 'treatment resistant.' 

I will paste on with the strongest glue my I can handle it persona. What choice do I have. How does one put on their big girl panties, one handed? The same way I am typing this with just my right hand's middle three fingers

I wrote this earlier today on Facebook, responding to a friend who has her own army of ogres to face: 
... For me, it is make your own survival. I choose breathe in with the next exhale; I choose the salty tinny taste of Progresso beef barley soup as worth turning the page; I choose to acknowledge that I am part of God's kingdom. I choose each tiny molecule of detail that propels me forward. It never is a thunder bolt on a clear blue sky kind of moment that makes me keep going. It is little moment by moment choices that at the good, no better times, roll by unnoticed. But, on the grimmest days, are enough...

Friends, thank you for reading and walking alongside on my journey. Keep my hubbie in your thoughts, when things with me are this bad, he bears the full weight of keeping the home fires burning. And this time of year includes trees, and presents, and all things Christmas. I don't feel able to chat on the phone or have folks over whith this acute episode. That leaves him in the thankless task of gatekeeper. If he doesn't hand the phone over, it is at my request. Email is the best way to reach me until this wildfire burns over.

Wednesday, December 1, 2010

Opening and Closing with Another's Wisdom

One afternoon, just about every week, my Dad comes over to spend a few hours playing cards or games. We have a friendly rivalry that includes a fair amount of trash talk and touch-down jubilation. Last week we were playing a favorite card game where the goal is to get the lowest score possible. At the end of the first game, his score and mine were so tilted in his favor that we might have been playing different games. Call me a glutton for punishment, but I settled in for a second game to try and regain some playing card street cred. He keeps the score and at about the half-way point, I asked him the score. He said, "well, you might suck just a little bit less than the last game." 
I recognized instantly the insightful wisdom of these words and promptly added my own twist. People often interpret my big smile or animated speech to mean that my health has improved. I've never had a good answer, until my Dad gave me the words, "My life sucks a little bit 'more or less' (depending on the reality) than yesterday or last Sunday or since I saw you last." This addresses that with my progressive form of MS with the associated pain and steady losses some aspect of my life always sucks to a lesser or greater degree. So, with these magic words I can finally express and accept a certain starting point that is how I gauge where I am at.
One of the hardest things I am dealing with right now is how emotionally fragile I am. We've had one challenging thing or another going on in our lives since July. My tears or anger or irritability are boiling just below the surface. The littlest thing can tip me into despair or rage. Some of my emotional flatness right now protects me from these emotions.
My brother is a wonderful guy and busy caring for his land, wife, and children. In spite of that he makes a tremendous effort to be present in my life from a few thousand miles away. This morning he shared a poem with me that expresses how I feel better than my own two hands and sluggish brain ever could.


This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice.
meet them at the door laughing and invite them in.

Be grateful for whatever comes.
because each has been sent
as a guide from beyond.

-- Jelaluddin Rumi,
    translation by Coleman Barks