as for my brother. well it was his last time in the hospital. he went in on a friday night. i think his MAC flared up again. well on sunday he was done with everything. i think he came to this conclusion that he was done on saturday while in there. he had his sisters fly into town for him. i was already there, but tension was high between him and zoe. i see now that they fought for my attention. but that is another entry here. so he told his doctor that he was done and that he wanted to just go home and die. he went home on monday afternoon and he died in his sleep on thursday morning. it was october 13, 1994. he died peacefully at home. if we could all die that easy. he even walked to the bank on wednesday to with draw everything he had, so that my sisters would not have to wait for his death certificate to come out to get his money. he did not have that much, but he did have his wits about him to do that. he was bald then, from his chemo. his last times i saw him at home, he looked bad. i knew it was not long before we would lose him for good. i am not sure if he was scared, or not. knowing him i think not. he had lost his lover in feb of that year and did not see much in life. i think he would still be here, if only he had wanted to be. that is another matter. i know i love him and miss him to this day. i always think of him at march madness time. we loved watching the games together. man we had some fun.
that morning he died, i got the call from kim at about midnight that it was close. zoe did not want me to go over there. so she called again about 2am. and he was gone. so i went over there then. no matter what. i guess zoe was trying to protect me from what i might see.
i recall that day like it was yesterday, but plus 13 years, almost. i had been poz only for 3 weeks and now i was say bye to my brother, and he died from AIDS, which i had now. again i held it from my family for 2 years before telling them. i posted that on my last note here, i think.
as for life now. well i just went through the landmark education forum. i highly recommend it to all who may read these pages. work is slow, i am even thinking about putting apps into places around the house. i could use a second job, due to the fact that my roommate is not working. and he has been off now for like 2 weeks. and it is another end of the month. yippee
but that is all i have to say about that.
my health is good, i see doc next week, so i will be in touch here.
well much peace and love to all. capt.cos
dialogue to self about meds and life, i am HIV positive with Hep C
Monday, May 14, 2007
well more about me and zoe in the time i seroconverted. i remember her standing in the living room and pretty could tell by the look on my face when i got home that day. this was before the newer meds available now. i remember we just held each other. so you can image what i went through 3 weeks later during kevin's funeral. it was not the highest point i have been in in my life. but i did overcome that time. since their son/brother had just died or was about to die, i did not tell the family about myself. i kept that to myself and zoe for another 2 years. i did not want the family to take out their anger on zoe for something that i was just as responsible for. so me and zoe went about our life as if it was normal. in the spring of 1995 we were asked to go on the rolando show in NY as a serodiscordant couple. but we were both positive then but we felt like we were used on the jerry springer show. i should say that zoe felt she was used for the show. i was not on the show, only in the audience. that is another story. so when the ro show called we thought what the hell. nice hotel at 53rd and lexington in Manhattan. we had a good time on that trip. then later that summer we went to hawaii to renew our vows with kevin's insurance money. zoe lived on the island for about 2 years in 1988 and 89. candice is born on the island. zoe pretty much showed me all the places she had once lived in her life. i intend to take ashes to those places so that she will always be in the neighborhood.
so it was in the late summer when zoe started to lose her mind. she was acting really weird, where we fought a lot and she even kicked me out at one point. she was very emotional. i know when or what woman isnt? but seriously she was seeing things that were not there and other odd behavior. everyone thought it was dimensia (sp) but we know that you do not come back from that. so i had to make the decision that zoe needed some one with her 24/7 and i had to go to work and make a living. we had 1 nursing home in louisville at that time that was set up to take AIDS patients. we all thought that zoe would not be coming back home from that visit. this was in november 1995. she came home in may of 1996. she saw her pysch and every time she saw him, he would increase her meds. this was one of the causes of her problems, we were to find this out about 2 months later. in the mean time candice was sent to her dad's place to live full time. again in november 1995. it went down like this...saturday candice's father arrived on a plane and then sunday took her back to seattle area...on tuesday i put zoe into a nursing home. in a span of 2 days, i lost the most important women in my life. again this was another low point as you can image. but again i prevailed.
so back to zoe. on dec 1, world aids day, i was able to take her in a wheel chair to the ceremonies they were having for the day. there was a lot of folks that saw her in the wheel chair and just started to cry.
well in january a month later, the nurses saw that zoe did not get this side effect med she should have been taking with her trilafon. after 2 weeks on the other med for trilafon, i was able to bring her home for weekend visits. even in april of 96 i was able to get candice and bring her back for a 2 week visit, i think. if my memory serves me correctly. then i can tell you that she came home for good in may 22, 1996. she was back home and instead of having demensia, i think she had a nervous breakdown and the dumbass pysch did not catch that. dr. H takes the blame for her not getting the side effect drug for trilafon, but her pysch should have known to mention it.
she had been in the home for 8 months and when she came back home it was very hard for her not to have her daughter. she went into to spending spree to fill that hole. that did not ever come to end until she left us. our house was full of stuff that she bought for candice and her and just for candice. she missed her daughter. but we did not think she would ever come home from the nursing home so we did what we had to do. i say we, but it was anything but we when it happened. it was me and only me.
so later that summer my mother came for a visit. the family knew what a helluva a guy i was just to stick it out her in the nursing home. it was not easy. when my mother came for a visit, it was like 2 years after my brother, or close and i had her on my turf, so i could tell her. i sent a letter to my sisters the day before she left, so they would get the news about the same time. when i told my mother that it had happened to me, she took it like i guessed she would. stoic. my mum is very stoic. but that is a good quality that i love about her.
so anyway. i read what i could about the disease now that i was infected. it was the time in the of the disease where the philosophy was to hit hard and hit early. so my family doc had some crixivan from a death of one of her patients. so i took it home and have been on drugs since then. my reg. hiv doc was like where did you get the crixivan. had i listened to her, my reg. hiv doc, i might not have been on them just yet. who knows. i trusted her when i started this blog about 1 week on and 1 week off. now i am looking at my fourth year with doing just that.
well i have rambled on enough for tonight. much love and peace to all who may read these words. goodnite. capt. cos.
so it was in the late summer when zoe started to lose her mind. she was acting really weird, where we fought a lot and she even kicked me out at one point. she was very emotional. i know when or what woman isnt? but seriously she was seeing things that were not there and other odd behavior. everyone thought it was dimensia (sp) but we know that you do not come back from that. so i had to make the decision that zoe needed some one with her 24/7 and i had to go to work and make a living. we had 1 nursing home in louisville at that time that was set up to take AIDS patients. we all thought that zoe would not be coming back home from that visit. this was in november 1995. she came home in may of 1996. she saw her pysch and every time she saw him, he would increase her meds. this was one of the causes of her problems, we were to find this out about 2 months later. in the mean time candice was sent to her dad's place to live full time. again in november 1995. it went down like this...saturday candice's father arrived on a plane and then sunday took her back to seattle area...on tuesday i put zoe into a nursing home. in a span of 2 days, i lost the most important women in my life. again this was another low point as you can image. but again i prevailed.
so back to zoe. on dec 1, world aids day, i was able to take her in a wheel chair to the ceremonies they were having for the day. there was a lot of folks that saw her in the wheel chair and just started to cry.
well in january a month later, the nurses saw that zoe did not get this side effect med she should have been taking with her trilafon. after 2 weeks on the other med for trilafon, i was able to bring her home for weekend visits. even in april of 96 i was able to get candice and bring her back for a 2 week visit, i think. if my memory serves me correctly. then i can tell you that she came home for good in may 22, 1996. she was back home and instead of having demensia, i think she had a nervous breakdown and the dumbass pysch did not catch that. dr. H takes the blame for her not getting the side effect drug for trilafon, but her pysch should have known to mention it.
she had been in the home for 8 months and when she came back home it was very hard for her not to have her daughter. she went into to spending spree to fill that hole. that did not ever come to end until she left us. our house was full of stuff that she bought for candice and her and just for candice. she missed her daughter. but we did not think she would ever come home from the nursing home so we did what we had to do. i say we, but it was anything but we when it happened. it was me and only me.
so later that summer my mother came for a visit. the family knew what a helluva a guy i was just to stick it out her in the nursing home. it was not easy. when my mother came for a visit, it was like 2 years after my brother, or close and i had her on my turf, so i could tell her. i sent a letter to my sisters the day before she left, so they would get the news about the same time. when i told my mother that it had happened to me, she took it like i guessed she would. stoic. my mum is very stoic. but that is a good quality that i love about her.
so anyway. i read what i could about the disease now that i was infected. it was the time in the of the disease where the philosophy was to hit hard and hit early. so my family doc had some crixivan from a death of one of her patients. so i took it home and have been on drugs since then. my reg. hiv doc was like where did you get the crixivan. had i listened to her, my reg. hiv doc, i might not have been on them just yet. who knows. i trusted her when i started this blog about 1 week on and 1 week off. now i am looking at my fourth year with doing just that.
well i have rambled on enough for tonight. much love and peace to all who may read these words. goodnite. capt. cos.
Wednesday, May 09, 2007
the year was 1991 and aids has not really gotten into my life just yet. it had only brushed my life with the passing of a librarian friend. it was in december that my brother and i got the idea to surprise the family down in florida for christmas. and beleive you me, they were surprised when we showed up on thier door step a couple of days before christmas. never forget the look on my mother's face that morning.
well kevin and i were not the best of siblings growing up. i was unaware of him being gay. it was not until our adult life that we were best of friends. we lived next door to each other and were very close. i often cooked dinner for us when we both got home from work.
well as mentioned kevin and i were down in florida for xmas and we were out having some drinks and he looked me in the eye and told me that he was hiv positive. i will never forget my response "i do not want to bury you next to murnie". that was our grandmother and we recently buried her. i was in tears and went to the bathroom to collect myself. not very strong for him. he was going to tell the family over xmas, but no one knew just yet except me. this was right after magic came out about being positive. so kevin had a test done recently that showed him to be positive. he later told me that he tested pos first in 1989 or so and just wanted to forget about it at that time.
well we got back to louisville and i immediatelty went to the biggest provider of info about aids then and that was the young thing we soon called the world wide web. being on a university's campus gave me access to this knowledge base before it came to the masses. i knew this and knew that and wanted to tell kevin about all the things i had learned. i even had a list of questions with me one time when he told me i could go to the doctors office with him. little did i know then that that same doctor would be calling me and telling me i was positive in about 3 years. yes i knew things, but did not know how to truly protect myself.
anyway i ramble. it was then in fall of 1992 we went to the aids quilt in washington, d.c. to volunteer for the week and help set it up. in 1996 kevin had 2 pieces made for him. on that trip he mentioned that he invited a girl name Zoe to go with us. he warned zoe that his little brother is a dog, so be careful. she did not make that trip, but we met for the first time on world aids day of 1992. i was not aware of this at the time, but i had issues with kevin. being that my dad died when i was 17, i was looking to make kevin, my older brother happy with my choice in women. up to that point, most of my girlfriends and him argued. so it was there that i let myself fall in love with zoe. we met officially on march 20, 1993.
but back to kevin. his first big illness was cmv in april 1994. he went and got a port put in. he hated hospitals, but then who does. it was lymphoma the next month. he had an absess on his behind. he showed this to zoe, but knew that i would not want to see it, and never did.
he then got MAC in august of 1994. the same month that i seroconverted.
but again i ramble on. i could see, but did not want to see it that kevin was done with it all. he had lost his close lover stephen in feb. 1994. he slowly lost his will to live with that happened. stephen babysitted for me and zoe on a tuesday night, i was playing darts at a local pub on tuesday night. he was rolling around on the floor with candice when we got home. stephen was dead the following sunday night. it was that sudden.
when me and zoe hooked up in march of 1993, we were what is known as a serodiscordant couple. another label from this labeling society we live in. it was in july that we were asked about doing an article for the louisville paper, courier journal about aids and being in love. we were on the front page on a sunday a.m. edition. if you met zoe, you knew she was positive about 5 minutes later. she told everyone that would listen to her story. just one of many reasons why it was easy to love her. and i do miss her. so in that article i was asked or quoted as saying that some one in my family was positive as well. well kevin felt like he was outed then. and in fact i had an uncle in chicago that was positive. the article did not do me and kevin any good with our relationship. it really soured it. to say the least. we later made up, or he forgave me and then he could not be stopped. even being photographed for the 1994 aids walk corporate donor brochure. this was in his last year.
i found out about my status 3 weeks before he died. his old doctor called me on the phone and told me while i was at work. i had gotten sick for the entire month of august. and did not even think it was hiv, when i knew zoe was positive at the time. when we met, zoe and kevin were friends, so i knew he would have to like her, if we dated. anyway. that is for another blog. lol.
i lost my brother in october 13, 1994. my best friend and brother is missed to this day.
then i lost my wife zoe in november 13, 2003. we had some fun times together.
well i have written more than most tonight. and i dont think i finished it yet, but for tonight i am finished. thanks for reading.
much peace and love to all who may read these words. captcosmos.
well kevin and i were not the best of siblings growing up. i was unaware of him being gay. it was not until our adult life that we were best of friends. we lived next door to each other and were very close. i often cooked dinner for us when we both got home from work.
well as mentioned kevin and i were down in florida for xmas and we were out having some drinks and he looked me in the eye and told me that he was hiv positive. i will never forget my response "i do not want to bury you next to murnie". that was our grandmother and we recently buried her. i was in tears and went to the bathroom to collect myself. not very strong for him. he was going to tell the family over xmas, but no one knew just yet except me. this was right after magic came out about being positive. so kevin had a test done recently that showed him to be positive. he later told me that he tested pos first in 1989 or so and just wanted to forget about it at that time.
well we got back to louisville and i immediatelty went to the biggest provider of info about aids then and that was the young thing we soon called the world wide web. being on a university's campus gave me access to this knowledge base before it came to the masses. i knew this and knew that and wanted to tell kevin about all the things i had learned. i even had a list of questions with me one time when he told me i could go to the doctors office with him. little did i know then that that same doctor would be calling me and telling me i was positive in about 3 years. yes i knew things, but did not know how to truly protect myself.
anyway i ramble. it was then in fall of 1992 we went to the aids quilt in washington, d.c. to volunteer for the week and help set it up. in 1996 kevin had 2 pieces made for him. on that trip he mentioned that he invited a girl name Zoe to go with us. he warned zoe that his little brother is a dog, so be careful. she did not make that trip, but we met for the first time on world aids day of 1992. i was not aware of this at the time, but i had issues with kevin. being that my dad died when i was 17, i was looking to make kevin, my older brother happy with my choice in women. up to that point, most of my girlfriends and him argued. so it was there that i let myself fall in love with zoe. we met officially on march 20, 1993.
but back to kevin. his first big illness was cmv in april 1994. he went and got a port put in. he hated hospitals, but then who does. it was lymphoma the next month. he had an absess on his behind. he showed this to zoe, but knew that i would not want to see it, and never did.
he then got MAC in august of 1994. the same month that i seroconverted.
but again i ramble on. i could see, but did not want to see it that kevin was done with it all. he had lost his close lover stephen in feb. 1994. he slowly lost his will to live with that happened. stephen babysitted for me and zoe on a tuesday night, i was playing darts at a local pub on tuesday night. he was rolling around on the floor with candice when we got home. stephen was dead the following sunday night. it was that sudden.
when me and zoe hooked up in march of 1993, we were what is known as a serodiscordant couple. another label from this labeling society we live in. it was in july that we were asked about doing an article for the louisville paper, courier journal about aids and being in love. we were on the front page on a sunday a.m. edition. if you met zoe, you knew she was positive about 5 minutes later. she told everyone that would listen to her story. just one of many reasons why it was easy to love her. and i do miss her. so in that article i was asked or quoted as saying that some one in my family was positive as well. well kevin felt like he was outed then. and in fact i had an uncle in chicago that was positive. the article did not do me and kevin any good with our relationship. it really soured it. to say the least. we later made up, or he forgave me and then he could not be stopped. even being photographed for the 1994 aids walk corporate donor brochure. this was in his last year.
i found out about my status 3 weeks before he died. his old doctor called me on the phone and told me while i was at work. i had gotten sick for the entire month of august. and did not even think it was hiv, when i knew zoe was positive at the time. when we met, zoe and kevin were friends, so i knew he would have to like her, if we dated. anyway. that is for another blog. lol.
i lost my brother in october 13, 1994. my best friend and brother is missed to this day.
then i lost my wife zoe in november 13, 2003. we had some fun times together.
well i have written more than most tonight. and i dont think i finished it yet, but for tonight i am finished. thanks for reading.
much peace and love to all who may read these words. captcosmos.
Monday, May 07, 2007
wow time does fly when you are having fun. well since i last my transmission...what have i been up to....
well last night i actually had a date. first one in 2 years, but no complaints here. she was not my type or i was not her type would be a better assessment of it. oohwell life does go on. i am doing well. feeling wonderful and even give blood this week on thursday. so i will have a blood work note here soon. i probably see doc at the end of may or so...stay tuned..
anyway this chick last night was poz as well. i think she wanted or would like a biker dude, which i am no way near that.
also last weekend i went through the landmark education forum. it is a life changin seminar and i highly recommend the whole world do this seminar one weekend. the sooner the better. it transforms your way of thinking about life. like dont sweat the small stuff. it was nice. hoping to get a date out of that also. lol.
won the derby pot at the party i was at. my sis always throws a huge derby party. and this year was no exception. we a had a grand time.
the landmark can be found on it's website at www.landmarkeducation.com
look in it. do me and yourself a favor.
working a little for the roofing company. we are majorly slow this time of year. but rainy/hurricane season starts in 3 weeks. look out.
well i am doing well if not fanastic. wishing everyone out there much peace and love your way. rev. vernon.
well last night i actually had a date. first one in 2 years, but no complaints here. she was not my type or i was not her type would be a better assessment of it. oohwell life does go on. i am doing well. feeling wonderful and even give blood this week on thursday. so i will have a blood work note here soon. i probably see doc at the end of may or so...stay tuned..
anyway this chick last night was poz as well. i think she wanted or would like a biker dude, which i am no way near that.
also last weekend i went through the landmark education forum. it is a life changin seminar and i highly recommend the whole world do this seminar one weekend. the sooner the better. it transforms your way of thinking about life. like dont sweat the small stuff. it was nice. hoping to get a date out of that also. lol.
won the derby pot at the party i was at. my sis always throws a huge derby party. and this year was no exception. we a had a grand time.
the landmark can be found on it's website at www.landmarkeducation.com
look in it. do me and yourself a favor.
working a little for the roofing company. we are majorly slow this time of year. but rainy/hurricane season starts in 3 weeks. look out.
well i am doing well if not fanastic. wishing everyone out there much peace and love your way. rev. vernon.
Subscribe to:
Posts (Atom)
