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

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So this is what it takes....

Fine. FINE! I have no more excuses left. God knows there are plenty of things I probably should have posted in this LJ over the past few weeks and haven't, and God also knows that I'm backlogged all to hell thanks to Chicago and then Gencon. Even though that's the case, the forces of procrastination acknowledge no master. I've been thinking about making entries, but until now it's been nothing more than a thought process. The problem is, now that I'm starting again, where exactly should I pick up the thread? Maybe I should just skip right to today and then backtrack, seeing how far I get before the malaise sets back in.

In a land close by and filled with crippling debt, the governor used his line-item veto on the bloated budget and cut many services for people in the state. As far as I'm concerned, it's something that needed to be done. Last year, NJ had the highest budget deficit of any state in the country as a percentage of its income. Clearly something had to be done and cuts needed to be made. One of those cuts affected me, changing my health care plan from a system that was pretty much free of complications to a HMO. I've now been introduced to idea of in-network doctors and after being sent something that looks like a telephone book, have discovered that not a single one of my doctors qualifies. Frankly, I hate going to the doctor anyway and if it weren't for the fact that I need a steady supply of opiates, I wouldn't care. Things haven't been all that bad lately, but I still have nightmares about how it was half a year ago. Even if I don't need the drugs right now, I have to make sure I have an emergency stash in place for when things go to pot.

That being the case, I went through the giant flip-book, found a doctor nearby, and got the HMO to designate her as my primary care physician. I was actually surprised to find out it was a woman, and you can thank the gender ambiguity of Chinese names for that. 'Ren' doesn't exactly scream out male or female and I just went with the default. The only reason I picked a Chinese doctor in the first place was I figured that my mom would prefer that since it means she'll have someone to ask intrusive questions of concerning my medical issues.

It's never easy to go to a new doctor. I tell myself that I don't really care anymore, and in large part it's true. You still can't get over some of the residual part of shame and discomfort though. "Leper, outcast, unclean." Ah, Thomas Covenant. Either way, disability sucks no matter how you slice it. I always find it funny that all the new doctors tend to be upbeat, talking about specialists to see or new things to try when I've personally long given up hope. In this case, the new doctor was amazed that I had never tried to see a wound care specialist, which upon reflection, did seem a bit odd to me too. I'm not sure that there's anything they could do that I don't already do myself, but it does seem strange that I somehow managed to miss that step going from doctor to doctor and even to surgery. Left to my own devices, I'm pretty much just content to muddle through day to day, trying to keep the pain manageable and everything else from exploding into unpleasantness. I used to think that treatment was a real possibility but after both the Enbrel and Humira failed to have any effect, it was pretty much the end of the road. The only other option was Remicade and from what I'm told, that requires a hospital stay and IV infusion over hours. The fact that I was even willing to try to Enbrel and Humera considering how much I hate needles says something but at this point I'm fresh out of hope. I've always said that hope is a two edged sword. For some, it can keep you going but for others, it's what will kill you in the end. Few things hurt as much as hope betrayed.

Feh. I wasn't planning to actually get depressing in this but it looks like I wandered into malaise anyway. Regardless, the new doctor wrote me up a referral to a pain specialist in the area who I'm sure I'll have to go through the whole 'I am NOT a crackhead' scenario with. It still pisses me off to no end that I don't get any high off of these drugs btw. It just doesn't seem fair that there are so many people out there who pop opiates like candy, willing to spend money and their lives to obtain it and it doesn't do a thing for me like that. You'd think that it would at least be some small compensation if I could get a drug high off of them instead of just the occasional bout of projectile vomiting. I used to agree with the bitter sort of idea that 'No one ever said life was fair'. Now, I'm just terrified of the idea that maybe life is fair and we all get exactly what we deserve and have coming to us. How's that for something that will keep you up nights?

But there are dreams that cannot be, and there are storms we cannot weather.
Tags: book club: stephen donaldson, chronic pain, doctors, drugs, enbrel, hmo, humira, politics, remicade

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