OPEN MIC: Thinky. Never Getting Better.
Dear internet universe:
I've been... very thinky in the head the past few days.
Last week, during an outisde cigarette in the wee hours, I suddenly passed out and had some sort of shakey-siezure, was caught by friend's strong arms, slapped across the face until I came to, carried inside and upstairs by two men while I continually passed back out, hearing wierd whooshing static in my ears the whole time. That was a first.
I've felt a little off ever since.
Doctor visits this week have affirmed that my hair is indeed falling out, I don't produce enough saliva, and I've been scheduled for all sorts of autoimmune and deficiency tests. However... during my doctor visit, I was told that she'd not see me back for three months, because there was no rush, as I'd been having most of my (granted, worsening) symptoms for over 10 years already. That I wasn't crippled or anything. All in all, she was a very compassionate and thorough doctor, spending over an hour with me, and has a whole barrage of tests for me to undergo. And her words stuck with me. There was a short while that my head went dark and spinning about it all, and there was weepiness and tears. I'd been trying to belive, to try, for so long, that I could get BETTER... that I could not hurt some day. But... it's been 10 years. She was implying that I was just... like this. It rather stings to have that hope dashed away. But this is a reality I've been slowly edging towards. The idea that I might just be like this.
And that acceptance is rather freeing. I needn't live in such fear and terror over losing my health insurance. Plan my life around having coverage. Instead, I told myself, I'll live as I had before.... without the fear. I'll learn how to maintain as I can on my own. Watch my diet more strictly. Excersize and stretch my spine. Hire a hoarde of midgets to clog-dance on my back. Give fake names at the ER, or just avoid the bills. Sure, I'll continue as I am, I will hope I get some answers from this latest and never before tested batch of blood work I have coming... Sure, I'll continue to investigate my poky-outy brain bits and hope I can find an answer to my vision problems... but I don't want to be on meds, anyway. The only meds that ever worked effectively without making my head cloudy and allowing me to function or worsening my vision was Vicodin, and no doctor (outside of Brooklyn's Kings County Hospital) is likley to give me an ongoing prescription for that.
On my train trek home a few days ago, I was trapped on a train for nearly two hours that had no working bathroom, something I'd not considered as I dashed onto the train already feeling the need. Seems it does bad and germy things to your insides when you are forced to withold yourself for so long, and I discovered yesterday that the experience seems to have made me painfully infected.
When I arrived home, having only $240 to my name, I discovered a surprise of $180 of doctor copays I'd no idea I owed. Even more incentive to not cling so tightly to my doctoring. Even just paying for the cab rides and copays, I can't afford it.
My infecty insides? I'd projected I'd be spending the evening in the ER tonight. Well, I've been drinking massive amounts of water, and I don't hurt. Case in point.
And... this plays into what I read of Digitalyn's venting.... Because I'd been much better, much happier in the head, much less bogged down, during the many years when I wasn't speaking to my family. When I had no saftey net. Because this isn't a saftey net at all - it's just slippery plastic sheeting that slowly tangles and drowns. When family doesn't care, their presence only stings like a slap in the face. It's just terrible facade that offends and hurts far more than being alone. Alone is, indeed, freeing. Parents are often selfish and dastardly individuals. They don't deserve understanding or forgiveness because of sheer biological bond.
So. I'm working on shaking off the fear, selling what I own, and being that willing-to-wander-off-with-naught-but-a-backpack person I useed to be. I've lost the past.... 5 to 7 years of my life to fear. To planning and scheming and trying and still getting no answers. I'd rather live.
how I am
how I'd like to be again
I've been... very thinky in the head the past few days.
Last week, during an outisde cigarette in the wee hours, I suddenly passed out and had some sort of shakey-siezure, was caught by friend's strong arms, slapped across the face until I came to, carried inside and upstairs by two men while I continually passed back out, hearing wierd whooshing static in my ears the whole time. That was a first.
I've felt a little off ever since.
Doctor visits this week have affirmed that my hair is indeed falling out, I don't produce enough saliva, and I've been scheduled for all sorts of autoimmune and deficiency tests. However... during my doctor visit, I was told that she'd not see me back for three months, because there was no rush, as I'd been having most of my (granted, worsening) symptoms for over 10 years already. That I wasn't crippled or anything. All in all, she was a very compassionate and thorough doctor, spending over an hour with me, and has a whole barrage of tests for me to undergo. And her words stuck with me. There was a short while that my head went dark and spinning about it all, and there was weepiness and tears. I'd been trying to belive, to try, for so long, that I could get BETTER... that I could not hurt some day. But... it's been 10 years. She was implying that I was just... like this. It rather stings to have that hope dashed away. But this is a reality I've been slowly edging towards. The idea that I might just be like this.
And that acceptance is rather freeing. I needn't live in such fear and terror over losing my health insurance. Plan my life around having coverage. Instead, I told myself, I'll live as I had before.... without the fear. I'll learn how to maintain as I can on my own. Watch my diet more strictly. Excersize and stretch my spine. Hire a hoarde of midgets to clog-dance on my back. Give fake names at the ER, or just avoid the bills. Sure, I'll continue as I am, I will hope I get some answers from this latest and never before tested batch of blood work I have coming... Sure, I'll continue to investigate my poky-outy brain bits and hope I can find an answer to my vision problems... but I don't want to be on meds, anyway. The only meds that ever worked effectively without making my head cloudy and allowing me to function or worsening my vision was Vicodin, and no doctor (outside of Brooklyn's Kings County Hospital) is likley to give me an ongoing prescription for that.
On my train trek home a few days ago, I was trapped on a train for nearly two hours that had no working bathroom, something I'd not considered as I dashed onto the train already feeling the need. Seems it does bad and germy things to your insides when you are forced to withold yourself for so long, and I discovered yesterday that the experience seems to have made me painfully infected.
When I arrived home, having only $240 to my name, I discovered a surprise of $180 of doctor copays I'd no idea I owed. Even more incentive to not cling so tightly to my doctoring. Even just paying for the cab rides and copays, I can't afford it.
My infecty insides? I'd projected I'd be spending the evening in the ER tonight. Well, I've been drinking massive amounts of water, and I don't hurt. Case in point.
And... this plays into what I read of Digitalyn's venting.... Because I'd been much better, much happier in the head, much less bogged down, during the many years when I wasn't speaking to my family. When I had no saftey net. Because this isn't a saftey net at all - it's just slippery plastic sheeting that slowly tangles and drowns. When family doesn't care, their presence only stings like a slap in the face. It's just terrible facade that offends and hurts far more than being alone. Alone is, indeed, freeing. Parents are often selfish and dastardly individuals. They don't deserve understanding or forgiveness because of sheer biological bond.
So. I'm working on shaking off the fear, selling what I own, and being that willing-to-wander-off-with-naught-but-a-backpack person I useed to be. I've lost the past.... 5 to 7 years of my life to fear. To planning and scheming and trying and still getting no answers. I'd rather live.
how I am
how I'd like to be again