In the darkness the trees are full of starlight (henwy) wrote,
In the darkness the trees are full of starlight

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But what we call our despair is often only the painful eagerness of unfed hope

Inigo: I am waiting for you, Vizzini. You told me to go back to the beginning. So I have. This is where I am, and this is where I will stay. I will not be moved.

Assistant Brute: Ho there!

Inigo: I do not budge. Keep your "Ho there".

Assistant Brute: But the prince gave orders.

Inigo:  So did Vizzini. When the job went wrong he went back to the beginning. Well, this is where we got the job, so it's the beginning. And I am staying till Vizzini come.

I'm not sure this is the beginning exactly but it was a beginning once upon a time. Maybe it makes sense that I should return here now when once again things have gone wrong. I've probably spent less time in introspection the last couple years and it's not a surprise why. When your life is full of pain and dysfunction, and you're left mostly lying about doing nothing, it's only natural that there's plenty of time to ruminate on things. In that way, I guess you could chalk it up as an unexpected side-effect of the fact that things had been getting better.

It's actually kinda ironic really. I've been seeing my wound care doctor for probably around 4 years now. During that time I've been through 7 or 8 surgeries complete with huge swaths of bloody flesh, wound vacs, bandage changes, visits to the hospital every few weeks, and just yesterday they discharged me as a patient. I'm all done. There was nothing more to do as far as open wounds that they could intervene in. This should have been a milestone. It could have even been a day of celebration. Finally, after decades of a devastating trench war fought in flesh and in blood, victory had been achieved. The cost had been immense, measured in pain and the sacrifice of dreams and hopes, but at least it was over and what scars remained were certainly better than what had been. And all of that would have been true if it wasn't for the gut punch I had gotten the week earlier about the kidney diagnosis. There's a part of me that can't help but dwell on the irony of it all. Wondering if maybe I tempted fate or that some force was just waiting to pull the rug out from under me.

I've been on disability for years now but it wasn't until earlier this year that I had my first ever review. I think that they were supposed to happen every few years or so but I had never received any notice about the process before. I guess that the overwhelming spike in disability claims following the Great Recession and the backlog it caused probably had them putting their resources into processing claims. I had actually spent a couple months worried that things had improved so much that I would no longer qualify for the program. I had wished to myself that the review had come a year or two earlier when there were still huge wounds to see or that things hadn't gotten as good as it was. Ah, the irony. I thought that the worst part of the battle with hidradenitis had been won only to find out now that its sappers had been busy working beneath the surface. All those years of inflammation has brought irreversible kidney damage, worse than anything I could have imagined. I guess the joke's on me. Be careful what you wish for.

At this point, I'm still trying to adjust but I think the worst part is being blindsided by all of this. Part of me can't help but think if I had just been paying more attention I could have see this coming. I had accepted that hidradenitis had taken a lot from me. Years of pain, disfigurement, shame, depression, and the sacrifice of dreams and hopes. Now I find out that it wants the small niche of a life I've managed to carve out for myself out of what's left.

I don't think it's exactly that I fear death. Hell, I'm pretty sure I'd rather snap my fingers and die instantly if I could than go through the grinding slog ahead if this goes south. I just don't have the emotional reserves I once did. It's also different looking at the stark numbers and know that life expectancy on dialysis only averages 9 years, or that if I'm right and the kidney damage is caused by AA Amyloidosis, it could be even more dire.

I spent years taking things one day at a time, never thinking about the future and what came next. Maybe I'll somehow manage to recapture that, but it's hard when you know how the story ends and the cliff in the darkness is only a few steps ahead.
Tags: hidradenitis, kidney disease, lj-related

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