Raw follow-up

That was a bit unhinged. But, guess what? I am completely overwhelmed and exhausted, and there’s not an ounce of relief in sight. So I vented in here, as I am prone to doing. And I’m sure I’ll do so again. And maybe I’ll do it a lot. If it seems like a sudden turn toward the pathetic, you just need to sift through years of blog/journal entries to find plenty more of the same (not that I’d recommend or wish for anyone to do so).

I spent an hour earlier doing yard work. I applied mulch to some dying emerald green arborvitae. These two pathetic trees should be really easy to take care of. But I’ve just about killed mine

I spent a good deal more time trying to deal with the insidious vine plant that dominated my front yard. I used to think it was cool, how it would grow so fast, and I could wrap it around stuff–a couple of years ago. But since I’ve had zero energy for yard maintenance, the vine plant has taken over everything. It’s swamped my baby crepe myrtles and my azaleas and my juniper. You won’t find one yard in an inhabited Durham home with such ridiculous overgrowth. So I just started pulling and pulling and pulling. And now I can see the other things that I’d actually like to take care of. But I have no idea how to kill this stuff and make sure it doesn’t keep growing.

The vine plant is an apt metaphor for life. I can pull away a ton of it, but there’s still a ton more that I can’t rid of it, and it’s just going to keep growing back. I don’t see how I will ever get a handle on it.

Back to last night’s rants…I’d only publicly write about my bitterness towards Duke Health if I had an alternative, and I do. Before the recent near-transplant mess, I had been on a path to getting on the Carolinas Medical Center list, and my assumption was that I’d inevitably get transplanted in Charlotte. I’m ok with going back to that plan. I have been going to Duke for healthcare for nearly 18 years, and overall, I’d say they haven’t gotten it right. And so, at my greatest moment of need, I’m so disappointed that they’ve put the burden of worthiness of care on me. Can I cope with what’s required of a transplant patient at Duke? I cannot get the thought out of head, “Where was this interest in helping me cope for the past 18 years?”

Why have I remained a patient at Duke so long? Why wouldn’t I? Who would not trust one of the premier medical centers and health systems in the world? There were lots of blips along the way, but as my kidneys failed and I approached dialysis and transplant lists, I’d be wise to live close to Duke Hospital so I could easily take advantage of that world-class care.

Boy, do I feel like a moron. I had no idea that I wouldn’t get to actually go to “Duke Dialysis”, that I’d be sent to facilities that sorely lack professionalism, skill, and empathy. I had no idea that the transplant team operated in a bubble outside of the rest of the health system, and that I’d be treated like an uneducated, undisciplined child. I had no idea that there’d be no dialysis options that could easily co-exist with a full-time work schedule. I had no idea that there’d be no one capable of meeting my mental health needs as I dealt with this end-stage renal disease, that social workers will be more concerned about you having post-transplant rides to the hospital than emotional support over the years you wait and your body deteriorates and life is a daily struggle.

Then again, I also thought it would the best possible job to work at Duke in the years of kidney decline. If I was going to have an IT career doing something I was good at but had no passion for, at least, if I did it at Duke, I’d be helping my alma mater, and it would surely be a fantastic place to work.

So wrong. And after five years, I so could not stand not being able to make the most of my potential in my field, to have my expertise routinely ignored, and (to be honest) to be paid far less than I thought I was worth, I took another job. While struggling to balance dialysis and chronic fatigue and chronic pain with working full-time, I decide to switch jobs. And I went to a global company, with far more complex systems, with a far more distant management structure, and, as I’ve discovered, a similar lack of appreciation for my very specific expertise. It probably doesn’t seem like I’m busting my ass, and I wouldn’t think I was from an outside perspective, but I am. I am, because I have no choice. I simply don’t know how I’d survive if I weren’t working.

I know people who have overcome far more. They’ve had physical challenges I cannot imagine. They’ve faced death and the sense that their dreams would not be attained. And, yet, they’ve persevered and survived and thrived.

I don’t see myself becoming one of those success stories. The best people will be able to say about be someday is, “At least he’s not suffering anymore”.

I know this is not the tone that anyone wants to see in my blog. No one wants to read this. And I certainly don’t want to be a burden.

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