At Sixes and Sevens
I can already tell the new neurologist is working up towards an "it's all in your head psychiatric diagnosis". I can smell it.
First she tells me that Topamax isn't used for nerve pain. Funny that, doctor, considering it was the only thing that saved me when none of the other drugs worked, a low dose of Tomapax cured the horrible burning sensation and was the only thing that stopped me from killing myself. She says it can cause burning (which is true), but it never fixes it. For me, it took burning, of the "I've spilled boiling water on myself" magnitude and turned it into a "tingling, mild sunburn" sensation.
And I'm not alone:
Move over Lyrica and Cymbalta? Could Topamax (Topiramate) Be More Effective in Fibromyalgia?
Then she asked me if I was bipolar (no, that's the OTHER sister), and what my official (mental) diagnoses were. And she did ask me if I'd had an MRI, but looked at mine from six years ago, and said it was fine so I didn't need another one. Um...I was fine six years ago, so yeah, I would hope that damn thing was fine. This problem came up 18 months ago or so, and I never had it before, so exactly how does a scan from six years ago, when I was fine and had no trouble, show that I'm fine now?
If you come in with a broken leg, and they look at an x-ray from pre-broken leg, that has nothing to do with your leg right now, does it? Duh. So how does an MRI from years before the problem have anything to do with now? Hmmmmmm.....
I'm supposed to go in for a memory test, if I can find a place that covers it with my insurance, but I already know how this will go. It will say my memory is fine, because (as I TRIED TO EXPLAIN) if you compare my memory to Joe Schmoe, it IS fine. Now, if you could compare my memory to me of two or four years ago, it would be shockingly different. I compensated for my visual processing problems by having a scary memory for certain kinds of detail, not as scary as some people's I know, but pretty damn scary overall. And now that is gone. You know, the kind of person who understands that pie is always 3.1415927 (technically I've rounded that up) and never just 3.14, or who knew every poem from the Hobbit, LoTR, and Dark is Rising Series by heart, just because. I can't find my way around town visually or by spatial sense like a normal person, so I have to compensate by MEMORIZING THE DIRECTIONS, I know that from my front door to the dr I:
exit apt door, turn right, elevator left, pick correct floor, turn right to exit, turn right on sidewalk and follow to end of block, turn right and follow to end of block, cross street cattycorner-left, follow straight to metro entrance (stairs down), which turns left, escalator down right, entrance stiles on right, platform train on right, switch trains by exit train go left, u-turn go downstairs, platform train right (making sure to pick correct train line), making sure to exit correct side of station when leaving subway system, go forward until you reach the correct street, turn left, go forward until you reach the destination on left.
Obviously, I also have the train lines, the streets I turn on, the final address, and a few names of places I pass to look out for so that I know I'm still going the right direction and haven't gone to far. In many places, I can't do "shortcuts" because I'll get hopelessly lost. It's not as bad in the city because many of them are laid out neatly with numbered and lettered streets, but I can't just find my way back by sensing directions--I have very little direction sense. And having gone some where, I then have to MEMORIZE THE ROUTE BACK as if it's a whole new set of directions, because it is.
I do it with people too. If I need to recall later what someone looks like, I'm doing it like I'm writing up a crime witness report in my head, tall/short, fat/thin, dirty blond hair, tattoo of butterfly on left wrist or whatever. The constant need for insane levels of meticulous memory details are necessary because I can't just "visualize" certain things. Maybe I couldn't draw up a make or model of a car (or hell, even what color it was, if I didn't "memorize" it in list form), but I might be able to give you the license plate instead. It was easier for me to memorize a license plate number than for me to try and visually recall a blue 4-door sedan.
Only now it's gone. I'm living in this hash blur, where everything is vague and fuzzy, like a cloud or a dream. Like a very, very bad dream. But when they try and run your standard memory tests it mostly comes up pretty normal. I guess by most standards it would BE normal, after all, most people don't need to memorize a list of directions for every place they go, or a list description for all the people they know, or phone and license numbers for everything around them. They just know "that's so and so's car" because they see it and recognize, or they look over and say "Oh hi so-and-so!" But none of you people were ever familiar to me, most of you never will be, I just don't see you often enough, or your features are not distinct enough to register past the prosopagnosia (faceblindness).
I'm losing the whole world around me, and I feel like I'm losing myself with it. I don't even want to go outside anymore. It's become this big scary place full of STUFF.
As far as the pain meds fiasco is going, it turns out my shrink is now a suboxone prescriber (when did THAT happen?) so when I told him the nonsense between my pain doctor and my new GP, he offered to put me on that. Huh. Sounds like a plan, better than battling it out with the new GP anyway. For those not keeping track, I can't get pain meds from pain management mostly because I have an addiction history, so legally they are kind of tied up. How we had it before was they consulted with my old GP, who wrote for my meds. It all came from one dr to one pharmacy (it's tramadol for crying out loud, we're not exactly talking morphine here) and everyone was happy. At least, until my GP and I parted ways over a couple of items which had nothing to do with my pain management.
My new GP started in on the thing that my old GP originally was like "I don't want to prescribe pain meds...that's what pain management is for!!" Only this one is worse, she's like, "I WON'T prescribe them, not even under consult." Basically tough titties. And tramadol isn't exactly easy to come by. As I told my shrink, I can do one of two things. It's not my pain dr's fault that laws make it so tough on her and she can't prescribe meds to me, so I can either shop around until I find a reasonable GP, which by the way, having an addiction makes me feel less of an addict than being forced through this nonsense for TRAMADOL pfft, and do all this bullshit and be treated like shit, or, I can make a phone call and in thirty minutes (maybe the first time might be hard, since I don't know anyone who deals in it off the bat), I could go out and find some heroin. Because, as I said, people who use pain pills don't want tramadol, they want oxys, or heroin, or something heavy like that. I've never heard of anyone going, "hey dude, I really want some tramadol." The real stupidity of this is, I DON'T EVEN HAVE AN ADDICTION TO PAIN PILLS. Which of course everyone knows, it's just if you have ANY addiction history, they treat you like shit.
They actually made me sign a pledge form the last time I got my tramadol, that said, "I will not use illegal drugs." I almost peed myself laughing, like, what next, a chastity pledge? Do I get a promise ring? Because I had an addiction history, you think having me SIGN A FORM for my prescription will change that? I told my shrink that if addictions were that easy, I would have signed a form and stuck one to my front door years ago and been cured. Hallelujah! Sign this pledge and be free! Hell, I've got a sign on my junk food cabinet and I CAN'T STOP EATING ICE CREAM even though I'm lactose intolerant. Who comes up with this shit, anyway?
So he writes for suboxone only he forgets to put his DEA number on the rx, and the snooty pharmacist (NOT my regular one) gives me the eyeball (because, yeah, I'm going to fake a suboxone rx *eyeroll back*) when I offered his business card. "I can only call the number on the prescription." Yes, okay, that's fine, gotcha. But she didn't have to say it in that tone of voice, you know, the tone of voice that says I obviously spend my time faking expensive laminate-type clinic business cards so I can turn in suspicious prescriptions with my horrible druggie self, which is all people who take suboxone are, right? Not people who also may have chronic pain.
pffttttt Bitch. It's the cane, makes me grumpy. One day it's going to make me so grumpy I'm going to freak the fuck out and someone is going to eat it and shit splinters for the rest of their life. Two doctors appointments, one shitty, one good, but I was exhausted and did not need a snooty new pharmacist to give me "eyeball" and "tone" at the end of my day.
First she tells me that Topamax isn't used for nerve pain. Funny that, doctor, considering it was the only thing that saved me when none of the other drugs worked, a low dose of Tomapax cured the horrible burning sensation and was the only thing that stopped me from killing myself. She says it can cause burning (which is true), but it never fixes it. For me, it took burning, of the "I've spilled boiling water on myself" magnitude and turned it into a "tingling, mild sunburn" sensation.
And I'm not alone:
Move over Lyrica and Cymbalta? Could Topamax (Topiramate) Be More Effective in Fibromyalgia?
Then she asked me if I was bipolar (no, that's the OTHER sister), and what my official (mental) diagnoses were. And she did ask me if I'd had an MRI, but looked at mine from six years ago, and said it was fine so I didn't need another one. Um...I was fine six years ago, so yeah, I would hope that damn thing was fine. This problem came up 18 months ago or so, and I never had it before, so exactly how does a scan from six years ago, when I was fine and had no trouble, show that I'm fine now?
If you come in with a broken leg, and they look at an x-ray from pre-broken leg, that has nothing to do with your leg right now, does it? Duh. So how does an MRI from years before the problem have anything to do with now? Hmmmmmm.....
I'm supposed to go in for a memory test, if I can find a place that covers it with my insurance, but I already know how this will go. It will say my memory is fine, because (as I TRIED TO EXPLAIN) if you compare my memory to Joe Schmoe, it IS fine. Now, if you could compare my memory to me of two or four years ago, it would be shockingly different. I compensated for my visual processing problems by having a scary memory for certain kinds of detail, not as scary as some people's I know, but pretty damn scary overall. And now that is gone. You know, the kind of person who understands that pie is always 3.1415927 (technically I've rounded that up) and never just 3.14, or who knew every poem from the Hobbit, LoTR, and Dark is Rising Series by heart, just because. I can't find my way around town visually or by spatial sense like a normal person, so I have to compensate by MEMORIZING THE DIRECTIONS, I know that from my front door to the dr I:
exit apt door, turn right, elevator left, pick correct floor, turn right to exit, turn right on sidewalk and follow to end of block, turn right and follow to end of block, cross street cattycorner-left, follow straight to metro entrance (stairs down), which turns left, escalator down right, entrance stiles on right, platform train on right, switch trains by exit train go left, u-turn go downstairs, platform train right (making sure to pick correct train line), making sure to exit correct side of station when leaving subway system, go forward until you reach the correct street, turn left, go forward until you reach the destination on left.
Obviously, I also have the train lines, the streets I turn on, the final address, and a few names of places I pass to look out for so that I know I'm still going the right direction and haven't gone to far. In many places, I can't do "shortcuts" because I'll get hopelessly lost. It's not as bad in the city because many of them are laid out neatly with numbered and lettered streets, but I can't just find my way back by sensing directions--I have very little direction sense. And having gone some where, I then have to MEMORIZE THE ROUTE BACK as if it's a whole new set of directions, because it is.
I do it with people too. If I need to recall later what someone looks like, I'm doing it like I'm writing up a crime witness report in my head, tall/short, fat/thin, dirty blond hair, tattoo of butterfly on left wrist or whatever. The constant need for insane levels of meticulous memory details are necessary because I can't just "visualize" certain things. Maybe I couldn't draw up a make or model of a car (or hell, even what color it was, if I didn't "memorize" it in list form), but I might be able to give you the license plate instead. It was easier for me to memorize a license plate number than for me to try and visually recall a blue 4-door sedan.
Only now it's gone. I'm living in this hash blur, where everything is vague and fuzzy, like a cloud or a dream. Like a very, very bad dream. But when they try and run your standard memory tests it mostly comes up pretty normal. I guess by most standards it would BE normal, after all, most people don't need to memorize a list of directions for every place they go, or a list description for all the people they know, or phone and license numbers for everything around them. They just know "that's so and so's car" because they see it and recognize, or they look over and say "Oh hi so-and-so!" But none of you people were ever familiar to me, most of you never will be, I just don't see you often enough, or your features are not distinct enough to register past the prosopagnosia (faceblindness).
I'm losing the whole world around me, and I feel like I'm losing myself with it. I don't even want to go outside anymore. It's become this big scary place full of STUFF.
As far as the pain meds fiasco is going, it turns out my shrink is now a suboxone prescriber (when did THAT happen?) so when I told him the nonsense between my pain doctor and my new GP, he offered to put me on that. Huh. Sounds like a plan, better than battling it out with the new GP anyway. For those not keeping track, I can't get pain meds from pain management mostly because I have an addiction history, so legally they are kind of tied up. How we had it before was they consulted with my old GP, who wrote for my meds. It all came from one dr to one pharmacy (it's tramadol for crying out loud, we're not exactly talking morphine here) and everyone was happy. At least, until my GP and I parted ways over a couple of items which had nothing to do with my pain management.
My new GP started in on the thing that my old GP originally was like "I don't want to prescribe pain meds...that's what pain management is for!!" Only this one is worse, she's like, "I WON'T prescribe them, not even under consult." Basically tough titties. And tramadol isn't exactly easy to come by. As I told my shrink, I can do one of two things. It's not my pain dr's fault that laws make it so tough on her and she can't prescribe meds to me, so I can either shop around until I find a reasonable GP, which by the way, having an addiction makes me feel less of an addict than being forced through this nonsense for TRAMADOL pfft, and do all this bullshit and be treated like shit, or, I can make a phone call and in thirty minutes (maybe the first time might be hard, since I don't know anyone who deals in it off the bat), I could go out and find some heroin. Because, as I said, people who use pain pills don't want tramadol, they want oxys, or heroin, or something heavy like that. I've never heard of anyone going, "hey dude, I really want some tramadol." The real stupidity of this is, I DON'T EVEN HAVE AN ADDICTION TO PAIN PILLS. Which of course everyone knows, it's just if you have ANY addiction history, they treat you like shit.
They actually made me sign a pledge form the last time I got my tramadol, that said, "I will not use illegal drugs." I almost peed myself laughing, like, what next, a chastity pledge? Do I get a promise ring? Because I had an addiction history, you think having me SIGN A FORM for my prescription will change that? I told my shrink that if addictions were that easy, I would have signed a form and stuck one to my front door years ago and been cured. Hallelujah! Sign this pledge and be free! Hell, I've got a sign on my junk food cabinet and I CAN'T STOP EATING ICE CREAM even though I'm lactose intolerant. Who comes up with this shit, anyway?
So he writes for suboxone only he forgets to put his DEA number on the rx, and the snooty pharmacist (NOT my regular one) gives me the eyeball (because, yeah, I'm going to fake a suboxone rx *eyeroll back*) when I offered his business card. "I can only call the number on the prescription." Yes, okay, that's fine, gotcha. But she didn't have to say it in that tone of voice, you know, the tone of voice that says I obviously spend my time faking expensive laminate-type clinic business cards so I can turn in suspicious prescriptions with my horrible druggie self, which is all people who take suboxone are, right? Not people who also may have chronic pain.
pffttttt Bitch. It's the cane, makes me grumpy. One day it's going to make me so grumpy I'm going to freak the fuck out and someone is going to eat it and shit splinters for the rest of their life. Two doctors appointments, one shitty, one good, but I was exhausted and did not need a snooty new pharmacist to give me "eyeball" and "tone" at the end of my day.