Saturday, December 28, 2013

A Small Pause...

I spent most of the week in tears.

We are running out of symptom control methods...or rather, we have run out. To add insult to injury, pinpointing what can be done that will not cause more harm than good is not easy to call. Though I know my treatment team has nothing but my health and well being in mind, often I have been frozen in fear and occasionally thinking that I may end up in a place similar to the beginning of 2013:


Except here is the kicker: I have some of the most intelligent, least pretentious people to help. All other offenders have been kindly let go, and we have parted ways. This has even included refusal of service from a major university hospital in my state due to very serious problems occurring while in their care. So there is no hint of a lack of work ethic, or dragging the pace on anything at all... just means that my condition is getting a lot worse.

None of us know where to go from here.


Major lesson learned? The old saying: Keep It Simple, Stupid.

Other lesson? Don't be a simpleton.

Did I ever mention I cannot even draw a straight line with a ruler?

The last two days I have been urged to the ER by my primary and both times have refused. I'm still not very clear as to why I've chosen not to go, other than coming to the ER for chronic issues to be admitted, observed, introduced to more and more invasive methods of intervention is gnawing away at my essence. I feel as though the pieces of who I am are slipping away.

There is so much fear involved in this. What's scaring me more is that I have lost my ability to reach out. I have stopped communicating with friends, I have stopped being up front with my doctors, I have stopped reporting new symptoms until they land me in emergent situations, I have stopped taking my medications since nothing is staying down, and I have momentarily just...stopped.

On this trek up adventure that is living my life, one fraught with uncertainty and is taking a rather dark turn, I have found a little picnic table which to catch a bit of rest. Here I unload these unbearably weighty issues I've been trying so hard to keep under wraps.

But I have run out of ways to hide what's been ravaging my mind and Spirit. Any vibrancy I'd captured in the stable period is lost, as is the muscle I'd managed to build. In fact, those whom I am still talking to have noted sour tunes escaping my mouth, and I have been chastised for these actions. As I look back through what I have written in this blog, I wouldn't want anyone else to feel so stifled. Sometimes one needs to confess where they're vulnerable, free of scolding or being shamed into adopting a false Can Do attitude when it just isn't there at the moment.

So I'm going to do it right here, in this post, right now. Feel free to skip, because I don't really even know exactly what will come out or how I plan to handle what I may uncover.

My recent slack in being forthright with others is steeped in sheer agony. I feel so alone in my personal experience, which technically is true. Others go through what I am going through, but I am the only person who is Myself going through this tumultuous period, and no one else has the same set of eyes to see and heart to beat to this tune.

We all tap out our variations on a similar theme, but no timbre is 100% the same.

My heart is aching worse than my body, which is saying a lot. Normally this is where I detach my feelings in favor of dealing with the emergent situation I am in to resolve what is happening that needs to be dealt with and then process the events at a later time.

Except this small detail: I'm not processing anything. Not only am I not processing nutrients via the gut, but I am also not processing any events from the nightmare of the last year. I am still sitting with the trauma of losing so many people I care about as they have crossed over, the most jarring of all was the man who I could have seen myself with...for much longer than we had. He passed away within 12 hours of a fellow soldier in this battle against unruly bodies bent on dysfunction beyond repair. I've taken no time to mourn a single loss, including losses of personal faculties that may never return. I've not allowed myself to be angry with a well meaning doctor that just doesn't understand that I'm not ok with looking at my declining condition and just coping with the fact that I will lose much more. No one around me is accepting the simple fact that we've done this dance before, and it ended with my life also being lost in that hushed stillness that is a final breath in before the soul departs the body. I feel cheated of the dignity to try to trace some steps back, to perhaps again test things that didn't work before that may could now...

Instead, I feel like an idiot as every time I try to talk to someone about this I am shut down. I am told quietly that I'll be fine, with no answer as to how that will happen. I am not being humored at the miracle that would need to occur to keep my name alive...and well. I am just told not to worry by others that look past my right shoulder with vacant looks on their faces. I am stood up by friends who told me they'd come by but never do. By family that is never around unless I am doing well, and the disappointment is palpable like another failure when elements outside my control careen haphazardly away from my grasp.

This significant relapse of severe symptoms has me heartbroken, above all. That for right now, I am unable to rise to the occasion. In fact, I am barely able to rise. I cannot sleep due to pain levels, I am malnourished yet stuffed to the gills with shame about how all of this is taking place.

I want so much to just fix this. I, for once, do not want to save the day for someone who has it worse than me. I want my own situation to improve. I want a hand up and out of this sorry wander my mind is taking, tracing slow and somber circles, falling to the ground because that fire, that vigor, that force is snuffed out.

I've not given up. Giving up isn't an option.

But for right now...I do have to give a small pause and reevaluate exactly what is reasonable for my life.

And what small dreams a may have to just let find another to make them come true.

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