Because despite their best efforts, I've managed to get in to see a government doctor (all it took was eight months of excruciating pain), and there are some developments..... minor, in the sense that it's nothing I didn't really know already, major in the sense that shit is becoming very official now.
So. Friday of last week, I'm on the phone with the case manager Nancy. She's been a sweetheart, always trying to get in touch with people, always sending emails, always getting ideas.... never getting anything done, but that's just bureaucracy for ya, woman's trying her ass off to get someone to pick up a phone or read an email. I've been riding her a little hard lately because, story was, they were gonna get someone to look at me before christmas break. Well, we missed that window. So I'm pissy, she's panicking, and this goes on for a few days before finally, she gets through -- human contact -- and we can schedule an appointment with ortho in Albuquerque, finally! WE WIN! Alright, so the appointment's gonna be in...................shit. Three months. We had a little psychic moment on the phone, and then together we said 'We can do better.' So I tried calling on my own for an afternoon, and sure enough, when I finally did get through -- after emphasizing the wait a little bit -- they made me some room in the schedule. "We got your results, when can you come up and talk about it?" [spoiler]Turns out those are not good words to hear in this context, especially if they're bending over backwards to get you in[/spoiler].
'How's monday?' Perfect. "See you at one."
Well, They saw me at one, and gradually started clearing the other patients out from all around me, which, again, not a super good sign. They let me know I'm seeing Doctor Y, who's in charge of the whole floor -- oooooooooh shit. That's not the guy who delivers good news (as if I was expecting good news -- really, I wasn't).
He kinda dragged his feet coming in, head held low, almost like he was dragging himself in, resting his hand on the counter, on the mat, on the bench, sitting down. He doesn't smile, or ask me how I'm doing -- any idiot could tell I'm in the middle of a nasty pain episode, the kind that usually sends me sprawling back into bed for several hours at least. We're looking at each other and we both know the score, and if there was ever any doubt about what the latests tests might've shown, the doubt's gone now. It's time for the talk. "What I'd like to say is, I found a magic wand, and the magic wand is a little surgery we do and after it all heals up perfectly..... but...."
"But there's no magic wand," I'm nodding.
"No." He doesn't like delivering this kind of news. "And even if there was, you have to understand the stiffness in your joints, the bone loss, the tendonds hardening, the atrophe.... it doesn't respond to physical therapy, it doesn't respond to pain management, it doesn't respond surgically, there's just, nothing. It's never going to get better."
I chew on that for a second, but he keeps going. "I know a specialist who's on a research grant looking at local nerves. Might be he could figure out a way to get rid of some of the pain. You wouldn't be getting much, if any, function back, but it would be better than...."
"You know," I interrupt. I expected pretty much all of this, I just hadn't expected Doc Y to have looked so hard at the situation. Three months ago he asked for my medical records, which are a goddamn filing cabinet, and I sent him every scrap. He looks like he's pored over every letter, every photo, every blood pressure report. He's exhausted from trying, and he's heartbroken that he couldn't do better. But what he doesn't know is, I'm okay. "This is kind of what I expected to hear, by now. Figure if it was gonna get better by anything we could do, I mean, I tried everything twice at least. Most things I tried more than that. I could've told you what that MRI was gonna say before you even looked at it, but I'm glad that you have." He's keeping up, but I'm talking in circles like an ass, so I get right to it. "Listen, I just want to cut the damn thing off. I'm done with it. I'm done waiting for it. You know.... you're out of ideas, and you're acting like that's the worst thing in the world, but to me, the worst thing would've been if you said 'Weeeeelll, maaaaaybe I can try this, and we'll let it go for a few months and see, and then maaaaaaybe we'll try thaaat....'
"There's red flags though," he says. "Things that hurt that shouldn't hurt. You might be looking at the kind of nerve damage that an amputation wouldn't fix, and then where are you?"
"I'll risk it," I say, hoping I sound pretty Han-Solo-ish, but I probably didn't pull it off. Or even if I did.
"Let me tell you about Doctor O." He does. The guy is doing research that potentially involves burning off nerve clusters to numb specific areas."It's not, I guess, the *LAST* LAST last resort but, we're getting there....."
"Well," I say, "You heard my plan. By comparison this sounds pretty tame."
He's thinking about something I said earlier. "Can you.... like, draw a line, 'This is where I want it cut off?"
I nod immediately, misunderstanding the question. "Absolutely. August 26 of last year." That's the three-year anniversary of the last time I was able to walk unassisted -- limping, wincing, weak and unable to do my super-awesome job, but walking nonetheless. But Doc Y is shaking his head and I can tell I took the question wrong.
"No, I mean, like, on your leg, where would you cut?"
Oh. Whoops. Sheepishly I trace down the head of the femur, where the joint-proper begins, and counted up about two inches, behind the sorta bulb-ish structure (you're supposed to leave room for the prosthetic's knee to attach, which means you ditch a little extra bone matter at the tip of your wasted limb. The lingering tissues in that whole region sort of form a pretty convincing stump shape, and it lines up with where my fingers land and where my brace ends. "I guess right about there," I say. He nods and makes a note. Either 'He understands what's up,' or 'he's thinking about this way too much,' or maybe 'I saw his Flappy Birds score and I need to get some notes from him about THAT, are you kidding, 55? That's madness.'
Well, whatever the notes were, he made a few. Can you hop on this leg, how far, can you do this, how much, do you try X, how often. It's an outline of all the things I'm just *dying* to try without this three-foot 'kill me' button dangling off my hip. Maybe some logs for the fire, we'll see. Next appointment should be within a couple of weeks, with the vaguely-nazi-experimental-scientist-ish vibe going on. I got nothing to lose, so maybe I'll win something. But it feels like I have a few things in motion, anyway.... maybe not for long, but you gotta cherish the moments when they're thinking about you, and it's all you can do to hope they come again soon.
In light of the prognosis (bad), I decided I'd buck the norms, and do something to celebrate, rather than crawl home and drink and cry...... er, well, okay, IN ADDITION TO THE DRINKING, I'm gonna do something to celebrate my bad prognosis, because celebrating kicks ass and fuck feeling bad. So I'm shopping for a new wheelchair. Like, a Mazeratti of wheelchairs. Like a Batmobile crossed with a Space Shuttle crossed with the actual lost city of Atlantis, crossed with a pterodactyl that can play bass for Aerosmith. Because worst case scenario, I'll get to tool around in this monster for another year or two before it becomes my backup plan; best case scenario I get done with the wheels sooner, and wouldn't that be cool. I wanna get something light enough and solid enough that I can revive the WheelChariot project (think dogsled, only much more hilariously awesome).
...eh, that's enough update I bet. Well there you have it. The continuing saga of F*@&( SH@!*U C*&$K MY KNEE!!! is approaching the endgame phase. Stay tuned......
So. Friday of last week, I'm on the phone with the case manager Nancy. She's been a sweetheart, always trying to get in touch with people, always sending emails, always getting ideas.... never getting anything done, but that's just bureaucracy for ya, woman's trying her ass off to get someone to pick up a phone or read an email. I've been riding her a little hard lately because, story was, they were gonna get someone to look at me before christmas break. Well, we missed that window. So I'm pissy, she's panicking, and this goes on for a few days before finally, she gets through -- human contact -- and we can schedule an appointment with ortho in Albuquerque, finally! WE WIN! Alright, so the appointment's gonna be in...................shit. Three months. We had a little psychic moment on the phone, and then together we said 'We can do better.' So I tried calling on my own for an afternoon, and sure enough, when I finally did get through -- after emphasizing the wait a little bit -- they made me some room in the schedule. "We got your results, when can you come up and talk about it?" [spoiler]Turns out those are not good words to hear in this context, especially if they're bending over backwards to get you in[/spoiler].
'How's monday?' Perfect. "See you at one."
Well, They saw me at one, and gradually started clearing the other patients out from all around me, which, again, not a super good sign. They let me know I'm seeing Doctor Y, who's in charge of the whole floor -- oooooooooh shit. That's not the guy who delivers good news (as if I was expecting good news -- really, I wasn't).
He kinda dragged his feet coming in, head held low, almost like he was dragging himself in, resting his hand on the counter, on the mat, on the bench, sitting down. He doesn't smile, or ask me how I'm doing -- any idiot could tell I'm in the middle of a nasty pain episode, the kind that usually sends me sprawling back into bed for several hours at least. We're looking at each other and we both know the score, and if there was ever any doubt about what the latests tests might've shown, the doubt's gone now. It's time for the talk. "What I'd like to say is, I found a magic wand, and the magic wand is a little surgery we do and after it all heals up perfectly..... but...."
"But there's no magic wand," I'm nodding.
"No." He doesn't like delivering this kind of news. "And even if there was, you have to understand the stiffness in your joints, the bone loss, the tendonds hardening, the atrophe.... it doesn't respond to physical therapy, it doesn't respond to pain management, it doesn't respond surgically, there's just, nothing. It's never going to get better."
I chew on that for a second, but he keeps going. "I know a specialist who's on a research grant looking at local nerves. Might be he could figure out a way to get rid of some of the pain. You wouldn't be getting much, if any, function back, but it would be better than...."
"You know," I interrupt. I expected pretty much all of this, I just hadn't expected Doc Y to have looked so hard at the situation. Three months ago he asked for my medical records, which are a goddamn filing cabinet, and I sent him every scrap. He looks like he's pored over every letter, every photo, every blood pressure report. He's exhausted from trying, and he's heartbroken that he couldn't do better. But what he doesn't know is, I'm okay. "This is kind of what I expected to hear, by now. Figure if it was gonna get better by anything we could do, I mean, I tried everything twice at least. Most things I tried more than that. I could've told you what that MRI was gonna say before you even looked at it, but I'm glad that you have." He's keeping up, but I'm talking in circles like an ass, so I get right to it. "Listen, I just want to cut the damn thing off. I'm done with it. I'm done waiting for it. You know.... you're out of ideas, and you're acting like that's the worst thing in the world, but to me, the worst thing would've been if you said 'Weeeeelll, maaaaaybe I can try this, and we'll let it go for a few months and see, and then maaaaaaybe we'll try thaaat....'
"There's red flags though," he says. "Things that hurt that shouldn't hurt. You might be looking at the kind of nerve damage that an amputation wouldn't fix, and then where are you?"
"I'll risk it," I say, hoping I sound pretty Han-Solo-ish, but I probably didn't pull it off. Or even if I did.
"Let me tell you about Doctor O." He does. The guy is doing research that potentially involves burning off nerve clusters to numb specific areas."It's not, I guess, the *LAST* LAST last resort but, we're getting there....."
"Well," I say, "You heard my plan. By comparison this sounds pretty tame."
He's thinking about something I said earlier. "Can you.... like, draw a line, 'This is where I want it cut off?"
I nod immediately, misunderstanding the question. "Absolutely. August 26 of last year." That's the three-year anniversary of the last time I was able to walk unassisted -- limping, wincing, weak and unable to do my super-awesome job, but walking nonetheless. But Doc Y is shaking his head and I can tell I took the question wrong.
"No, I mean, like, on your leg, where would you cut?"
Oh. Whoops. Sheepishly I trace down the head of the femur, where the joint-proper begins, and counted up about two inches, behind the sorta bulb-ish structure (you're supposed to leave room for the prosthetic's knee to attach, which means you ditch a little extra bone matter at the tip of your wasted limb. The lingering tissues in that whole region sort of form a pretty convincing stump shape, and it lines up with where my fingers land and where my brace ends. "I guess right about there," I say. He nods and makes a note. Either 'He understands what's up,' or 'he's thinking about this way too much,' or maybe 'I saw his Flappy Birds score and I need to get some notes from him about THAT, are you kidding, 55? That's madness.'
Well, whatever the notes were, he made a few. Can you hop on this leg, how far, can you do this, how much, do you try X, how often. It's an outline of all the things I'm just *dying* to try without this three-foot 'kill me' button dangling off my hip. Maybe some logs for the fire, we'll see. Next appointment should be within a couple of weeks, with the vaguely-nazi-experimental-scientist-ish vibe going on. I got nothing to lose, so maybe I'll win something. But it feels like I have a few things in motion, anyway.... maybe not for long, but you gotta cherish the moments when they're thinking about you, and it's all you can do to hope they come again soon.
In light of the prognosis (bad), I decided I'd buck the norms, and do something to celebrate, rather than crawl home and drink and cry...... er, well, okay, IN ADDITION TO THE DRINKING, I'm gonna do something to celebrate my bad prognosis, because celebrating kicks ass and fuck feeling bad. So I'm shopping for a new wheelchair. Like, a Mazeratti of wheelchairs. Like a Batmobile crossed with a Space Shuttle crossed with the actual lost city of Atlantis, crossed with a pterodactyl that can play bass for Aerosmith. Because worst case scenario, I'll get to tool around in this monster for another year or two before it becomes my backup plan; best case scenario I get done with the wheels sooner, and wouldn't that be cool. I wanna get something light enough and solid enough that I can revive the WheelChariot project (think dogsled, only much more hilariously awesome).
...eh, that's enough update I bet. Well there you have it. The continuing saga of F*@&( SH@!*U C*&$K MY KNEE!!! is approaching the endgame phase. Stay tuned......
