Well hello again, world. I apologize for the silence, but it's hard to blog when a.) you don't have much to talk about because your routine is… lacking, and b.) when what energy, mental or otherwise, is appropriated to tasks and hobbies more likely to bring an immediate benefit, like sweeping the kitchen floor so I don't have to step on little pieces of cat litter. (I walk around barefoot most of the time, and secondary to water on the floor when I'm walking in socks, litter/gravel on the floor is a huge pet peeve of mine.)
Anyway, I've just been trucking along, making the best of things. I've been more social the past two or three months, attending "events" or going to friends houses. I've managed to get the right pain meds the past couple of months, and in the right quantities, so that's been a huge relief. I still get super anxious and stressed the closer the month rolls to my pain appointment, but that's something I can't help. It's not even a conscious thing, like a mulling over of all the bad things that could happen the way we do sometimes, more like a subtle buildup of pressure that makes everything seem a little more hopeless and overwhelming than it would otherwise. But when I'm aware of it it's easier to look at things as objectively as I can. I'm just getting so worn out. This battle of pain and nausea and throwing up when I drink more than a few sips of liquid at a time (that one comes and goes, but I'm never sure when it'll show up until I start heaving), the muscle cramps and spasms, the unaccustomed weakness in my limbs, sheer exhaustion, all kinds of other "fun" things… it's taking me down. I just wish I could have a break, you know? But then I'd probably be even more devastated when the break was over and it all came rushing back. Things are tough, I'm not gonna lie. But I'm handling them to the best of my ability. Is there anything more any of us can do in our lives?
I was denied disability last week, maybe a week and a half ago. I don't remember the exact date. It's not the kind of denial I can appeal, either, since it's not a decision of "you're not sick enough to warrant our help" but one of "you don't have enough work credits to qualify for one program, and your household makes too much money for you to qualify for the need-based program, how dare you try to exploit us your greedy wench". It was a hard blow, to be sure. Corey and I were counting on someday breaking out the other side of the maze of red tape and appeals and paperwork and getting some actual monetary help that we could depend on. As things are, it is only the donations of friends and family that are keeping us going by paying for my medical bills. I'm working on a few other legal ways to reduce costs of scripts and a few other things, but it is the same story of a process that takes months and months and years to get handled, so until then I'm still paying $600/month for all of my medications combined. That's just not a sustainable amount, not when you've got two people and 3 cats living on one paycheck. But it has to be sustainable, or else this little lady ends up in the hospital indefinitely, which is an astronomically more expensive possibility.
I am needing to go to the store to pick up some groceries and such, but I'll try to get back here and finish tonight or tomorrow. I'll be spending Thanksgiving with my Grandparents, so maybe I'll jump back on and write a bit more then as well. All told, I'm pretty happy these days. (Oh. Looks like Corey is making some food, so… I guess we're waiting for a bit?)
So financially, we're panicking a bit, but I'm sure that something will come up if I just put more work into it. It took SO MUCH of my time, this disability bullshit, and I spent so much of my valuable energy and spoons on the research and filling out forms and phone calls and finding a lawyer and… all the homework. And now I have to do more homework because of that stupid ruling. I'm incredibly frustrated about that. Make the healthy people do that kind of thing. They have energy and to spare. All of my spoons are precious, and I don't want to waste them on the government's red tape. I'm having a difficult time conveying the deep rage and contempt I have for the system that has screwed with me for so long. This whole experience was infuriating to the deepest depths of my atomic structure. I was hoping that eventually I'd be done with it and be able to move forward with other challenges. Because it's never easy when you're sick and in pain and disabled. No, everything is constructed to be as difficult as possible, because why should anyone make things easier for someone who is already fighting battles that the average person cannot comprehend, every second of every long, exhausting, interminably awful day. No, no, let's make things harder, so they can prove that they really want it. Pfft.
Gah. And here I was, going to try to be all optimistic and paint a pretty picture about how well things are going and how well I'm handling everything and how nothing is really a big deal… but to be completely honest, I'm infinitesimally close to being DONE. So done. I'm exhausted. Down to the dim reaches of the cells that comprise me, I am exhausted. Just waking up and facing the day is an ordeal. Not only am I physically burdened (seemingly more and more and worse and worse as time goes on) but my mind is constantly spinning with "how am I going to do this?" or "I need to do ____ and _____ and ____ and ____, so if I do ____ will I still have some juice left in me to at least attempt ____?" I'd rather not do either. I'd rather pull the blankets over my head and ignore the world until it's time for my next med dose. I can't ignore the world when it's time to take my meds, it hurts too much.
I'm stressed. I'm exhausted. I'm sick. I'm failing at the goals I've set for myself, and I feel like nothing more than a human vegetable most days. Being more social, spending more time with people, has been nice, though. I've enjoyed that. I began to really miss people this year, 'cause it's hard when you can't go to your friends but they have to come to you. It's inconvenient, and no matter how well meaning folks are eventually it just becomes too much of a hassle. They're too busy with work, family, church, hobbies, their own illnesses… just life. And I get that. It doesn't keep the days from blurring into one another with the sameness of it all--get up, meds, try to eat something, try to drink something, maybe read for a little/watch a movie or show, meds, try to eat/drink something, sleep, meds, sleep, cats, try to eat/drink, sleep, Corey gets home, show, sleep--or keep the nip of loneliness at bay. So it's been nice to hang out with friends and laugh again.
A more recent friend of mine, CO, took me with him to the Dungeons and Dragons game group that he joined a week or two ago, and it turns out that I already knew most of the few people there! It was a pleasant, funny surprise :) My old friends weren't expecting to see me, of course (of all things, right?), but it was nice for them too. I am going to continue going, and maybe even join in and play myself. I played for a little while with Michael but I'm no expert, not by any means. It would be nice to play a game where Corey isn't also a player, though. I tend to rely on him overmuch, because I'm still so clueless, but I want to do it on my own, take my character in my own direction, learn the game myself, you know? Then I can come back and play with him and stand on my own two feet as a player with her own distinctive style and knowledge.
Anyway, that's neither here nor there. I'm trying, I really am, but it's hard when your world is made up of one uncomfortable, painful thing after another. I'm trying to keep my eyes on the light, but lately it's just been disorienting as hell.
Anyway, I've just been trucking along, making the best of things. I've been more social the past two or three months, attending "events" or going to friends houses. I've managed to get the right pain meds the past couple of months, and in the right quantities, so that's been a huge relief. I still get super anxious and stressed the closer the month rolls to my pain appointment, but that's something I can't help. It's not even a conscious thing, like a mulling over of all the bad things that could happen the way we do sometimes, more like a subtle buildup of pressure that makes everything seem a little more hopeless and overwhelming than it would otherwise. But when I'm aware of it it's easier to look at things as objectively as I can. I'm just getting so worn out. This battle of pain and nausea and throwing up when I drink more than a few sips of liquid at a time (that one comes and goes, but I'm never sure when it'll show up until I start heaving), the muscle cramps and spasms, the unaccustomed weakness in my limbs, sheer exhaustion, all kinds of other "fun" things… it's taking me down. I just wish I could have a break, you know? But then I'd probably be even more devastated when the break was over and it all came rushing back. Things are tough, I'm not gonna lie. But I'm handling them to the best of my ability. Is there anything more any of us can do in our lives?
I was denied disability last week, maybe a week and a half ago. I don't remember the exact date. It's not the kind of denial I can appeal, either, since it's not a decision of "you're not sick enough to warrant our help" but one of "you don't have enough work credits to qualify for one program, and your household makes too much money for you to qualify for the need-based program, how dare you try to exploit us your greedy wench". It was a hard blow, to be sure. Corey and I were counting on someday breaking out the other side of the maze of red tape and appeals and paperwork and getting some actual monetary help that we could depend on. As things are, it is only the donations of friends and family that are keeping us going by paying for my medical bills. I'm working on a few other legal ways to reduce costs of scripts and a few other things, but it is the same story of a process that takes months and months and years to get handled, so until then I'm still paying $600/month for all of my medications combined. That's just not a sustainable amount, not when you've got two people and 3 cats living on one paycheck. But it has to be sustainable, or else this little lady ends up in the hospital indefinitely, which is an astronomically more expensive possibility.
I am needing to go to the store to pick up some groceries and such, but I'll try to get back here and finish tonight or tomorrow. I'll be spending Thanksgiving with my Grandparents, so maybe I'll jump back on and write a bit more then as well. All told, I'm pretty happy these days. (Oh. Looks like Corey is making some food, so… I guess we're waiting for a bit?)
So financially, we're panicking a bit, but I'm sure that something will come up if I just put more work into it. It took SO MUCH of my time, this disability bullshit, and I spent so much of my valuable energy and spoons on the research and filling out forms and phone calls and finding a lawyer and… all the homework. And now I have to do more homework because of that stupid ruling. I'm incredibly frustrated about that. Make the healthy people do that kind of thing. They have energy and to spare. All of my spoons are precious, and I don't want to waste them on the government's red tape. I'm having a difficult time conveying the deep rage and contempt I have for the system that has screwed with me for so long. This whole experience was infuriating to the deepest depths of my atomic structure. I was hoping that eventually I'd be done with it and be able to move forward with other challenges. Because it's never easy when you're sick and in pain and disabled. No, everything is constructed to be as difficult as possible, because why should anyone make things easier for someone who is already fighting battles that the average person cannot comprehend, every second of every long, exhausting, interminably awful day. No, no, let's make things harder, so they can prove that they really want it. Pfft.
Gah. And here I was, going to try to be all optimistic and paint a pretty picture about how well things are going and how well I'm handling everything and how nothing is really a big deal… but to be completely honest, I'm infinitesimally close to being DONE. So done. I'm exhausted. Down to the dim reaches of the cells that comprise me, I am exhausted. Just waking up and facing the day is an ordeal. Not only am I physically burdened (seemingly more and more and worse and worse as time goes on) but my mind is constantly spinning with "how am I going to do this?" or "I need to do ____ and _____ and ____ and ____, so if I do ____ will I still have some juice left in me to at least attempt ____?" I'd rather not do either. I'd rather pull the blankets over my head and ignore the world until it's time for my next med dose. I can't ignore the world when it's time to take my meds, it hurts too much.
I'm stressed. I'm exhausted. I'm sick. I'm failing at the goals I've set for myself, and I feel like nothing more than a human vegetable most days. Being more social, spending more time with people, has been nice, though. I've enjoyed that. I began to really miss people this year, 'cause it's hard when you can't go to your friends but they have to come to you. It's inconvenient, and no matter how well meaning folks are eventually it just becomes too much of a hassle. They're too busy with work, family, church, hobbies, their own illnesses… just life. And I get that. It doesn't keep the days from blurring into one another with the sameness of it all--get up, meds, try to eat something, try to drink something, maybe read for a little/watch a movie or show, meds, try to eat/drink something, sleep, meds, sleep, cats, try to eat/drink, sleep, Corey gets home, show, sleep--or keep the nip of loneliness at bay. So it's been nice to hang out with friends and laugh again.
A more recent friend of mine, CO, took me with him to the Dungeons and Dragons game group that he joined a week or two ago, and it turns out that I already knew most of the few people there! It was a pleasant, funny surprise :) My old friends weren't expecting to see me, of course (of all things, right?), but it was nice for them too. I am going to continue going, and maybe even join in and play myself. I played for a little while with Michael but I'm no expert, not by any means. It would be nice to play a game where Corey isn't also a player, though. I tend to rely on him overmuch, because I'm still so clueless, but I want to do it on my own, take my character in my own direction, learn the game myself, you know? Then I can come back and play with him and stand on my own two feet as a player with her own distinctive style and knowledge.
Anyway, that's neither here nor there. I'm trying, I really am, but it's hard when your world is made up of one uncomfortable, painful thing after another. I'm trying to keep my eyes on the light, but lately it's just been disorienting as hell.
