Out of body experience?
Originally published 05/11/05
i'm not entirely sure i should call it that, but that's what it feels like. tonight i don't feel entirely inside my body. i feel like i'm watching my life from somewhere outside it and i'm rather uncomfortable at the show, quite honestly. it's actually an interesting perspective...it makes me wonder if the people who live around me feel this uncomfortable being a spectator of my life.
tony...well, his health is having marked declines. he spent most of last weekend in bed, after managing to struggle through the bare necessity of the lawn work. he felt icky and his itching was so bad he had to drug himself pretty heavily...that's what kept him in bed so long. imagine taking half a box of benedryl...that's about the equivalent of his prescription meds for this itching. he had his MRCP a few weeks ago. findings were inconclusive, of course. they can't really see anything without going gown the gullet. it did however show that his blockages are entirely inside the upper biliary tree, in the smaller ducts. the large duct isn't blocked. it's good and bad news. the large duct being open means flow CAN get in and out of the liver but it's bad because there's nothing that can be done to open up the small ducts up inside the liver, like shunts or dilation or stents. so last we heard, he's supposed to hear from the liver people at the university of san francisco. i suppose they'll evaluate him further and see where he stands for a transplant.
transplant. in an optimistic mind you think, ok great...he'll have a transplant, he'll be cured. the more i learn about this disease and transplants in general, the less sunny this is. first there's the ever looming black cloud of the numbers of people who die waiting for transplants. then there's the worry that my sister won't be a match for him. third there's the risk that the PSC can come back after the transplant, or that his body will reject the liver. and worst of all is how god awfully sick he has to be before he qualifies. the realization of the length of the road we're on is dawning on me all too quickly.
then there's our marriage. we had it out, boy hardy. i wrote him a serious letter, and he responded harshly at first but is actually complying with the things i said have to change. and so, i'm working hard on ME. the bottom line is, we're not going to divorce. we said forever, and unlike half of today's society, we meant it. it's going to be rough while we work it out, but we WILL work it out. i know where i need to change, and i'm really focusing on it. PROMISE.
then there's my health. omg i'm starting to have complications from this blasted disease. i'm pissed. at myself for not being more careful with my sugars. my left foot is numb in one spot all the time. my entire lower left leg has a tightness that scares the bejeezus out of me. so do i eat better? check my sugar more often? pshshhht. i have started to because i want another baby, but good lord, what's it going to take to light a fire under my ass to get HEALTHY??
so then there's that. a baby. i think i'm ready for another one. no...i know i am. but i'm swimming in ethical, moral questions about whether another baby is smart or 'right' at this stage of tony's health and my health. and our marital health. sure, things are good now but are the changes going to keep? i know we should wait...maybe. i'm off the pill. but since our sex life is virtually null, i probably didn't need to be spending money on the bloody things anyway.
on top of it all today we find out my maternal grandmother has liver cancer. she's 88 years old, they won't operate, and she isn't well enough for chemo or radiation. so that's it. now we wait for her to die and pray to god she doesn't suffer. i'm mad. i'm really fucking mad. i'm sick of my life fucking falling apart around me. i know, i know i should be grateful for all i have. i am.
maybe that's what my mind is doing...trying to get out of my life for a little while. and ignore the tingling in my left leg as i type away through a veil of burning tears. trying to ignore he who should be a healthy 33 year old upstairs in my bed slowly dying. trying to ignore the way the future likely looks 20 years from now. yeah, i'm really fucking pissed. now if i could only get this out of body experience to take me down the street to hang out in a body that isn't gone to shit so young for a while...
i'm not entirely sure i should call it that, but that's what it feels like. tonight i don't feel entirely inside my body. i feel like i'm watching my life from somewhere outside it and i'm rather uncomfortable at the show, quite honestly. it's actually an interesting perspective...it makes me wonder if the people who live around me feel this uncomfortable being a spectator of my life.
tony...well, his health is having marked declines. he spent most of last weekend in bed, after managing to struggle through the bare necessity of the lawn work. he felt icky and his itching was so bad he had to drug himself pretty heavily...that's what kept him in bed so long. imagine taking half a box of benedryl...that's about the equivalent of his prescription meds for this itching. he had his MRCP a few weeks ago. findings were inconclusive, of course. they can't really see anything without going gown the gullet. it did however show that his blockages are entirely inside the upper biliary tree, in the smaller ducts. the large duct isn't blocked. it's good and bad news. the large duct being open means flow CAN get in and out of the liver but it's bad because there's nothing that can be done to open up the small ducts up inside the liver, like shunts or dilation or stents. so last we heard, he's supposed to hear from the liver people at the university of san francisco. i suppose they'll evaluate him further and see where he stands for a transplant.
transplant. in an optimistic mind you think, ok great...he'll have a transplant, he'll be cured. the more i learn about this disease and transplants in general, the less sunny this is. first there's the ever looming black cloud of the numbers of people who die waiting for transplants. then there's the worry that my sister won't be a match for him. third there's the risk that the PSC can come back after the transplant, or that his body will reject the liver. and worst of all is how god awfully sick he has to be before he qualifies. the realization of the length of the road we're on is dawning on me all too quickly.
then there's our marriage. we had it out, boy hardy. i wrote him a serious letter, and he responded harshly at first but is actually complying with the things i said have to change. and so, i'm working hard on ME. the bottom line is, we're not going to divorce. we said forever, and unlike half of today's society, we meant it. it's going to be rough while we work it out, but we WILL work it out. i know where i need to change, and i'm really focusing on it. PROMISE.
then there's my health. omg i'm starting to have complications from this blasted disease. i'm pissed. at myself for not being more careful with my sugars. my left foot is numb in one spot all the time. my entire lower left leg has a tightness that scares the bejeezus out of me. so do i eat better? check my sugar more often? pshshhht. i have started to because i want another baby, but good lord, what's it going to take to light a fire under my ass to get HEALTHY??
so then there's that. a baby. i think i'm ready for another one. no...i know i am. but i'm swimming in ethical, moral questions about whether another baby is smart or 'right' at this stage of tony's health and my health. and our marital health. sure, things are good now but are the changes going to keep? i know we should wait...maybe. i'm off the pill. but since our sex life is virtually null, i probably didn't need to be spending money on the bloody things anyway.
on top of it all today we find out my maternal grandmother has liver cancer. she's 88 years old, they won't operate, and she isn't well enough for chemo or radiation. so that's it. now we wait for her to die and pray to god she doesn't suffer. i'm mad. i'm really fucking mad. i'm sick of my life fucking falling apart around me. i know, i know i should be grateful for all i have. i am.
maybe that's what my mind is doing...trying to get out of my life for a little while. and ignore the tingling in my left leg as i type away through a veil of burning tears. trying to ignore he who should be a healthy 33 year old upstairs in my bed slowly dying. trying to ignore the way the future likely looks 20 years from now. yeah, i'm really fucking pissed. now if i could only get this out of body experience to take me down the street to hang out in a body that isn't gone to shit so young for a while...
posted by Rebecca | 7:06 PM
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