dialogue to self about meds and life, i am HIV positive with Hep C

Sunday, August 24, 2003

was at the fair this week, twice to entertain the misses. she likes the fleamarket crap. i just look at the other toothless, barefoot kentuckians and laugh. did get some free stickers from NASA. they had a booth there for the first time. i was thinkin, isn't that what state fairs are about. every body gets free stickers. also i think every state that has a state, it draws out the finest folks of the state. lol. notice how even New York, and California hates the small town, but if you went to their state fairs, you would see their own small towns. well i hope you get my point.

gtg. hope all is well for ya.
hello world. checking in for another day. we are doing alright. although the misses has been sleeping a lot lately. new drugs again. hopefully this too will pass. we are between automobiles, for the umpteenth time in our life. would give almost anything to have a reliable car. is that too much to ask for from this life. shit.

well almost football season, thank god.

Thursday, August 21, 2003

wife is now asleep. she has been staying up for days on end it seems. they gave her some thing to ease her mind today. i am hoping it clears up her thoughts. she dwells on the past, badly. so you all out there in cyber space, remember, do not dwell on the past, especially if it hurts you. like the musical RENT, live with regret and you miss out. something like that.

well upgraded to XP with a new pc last month. i may have mentioned this already. i am diggin big time the online games. i am addicted to the spades game. just having some hard time getting intermediate players. should not be that hard. well gtg. p/l, capt out.
well i am back after some time away from here. my wife did get out of the hospital. we are not sure what is going with her now though. she is some times with us mentally and other days she is not. she has her moments. stay tuned. i am doing well. still on the interruption therapy for now. see doc on 12 of sept and will know more then. i am going to continue with the drug vacation for now. i am getting used to it.

Sunday, August 03, 2003

and i am not an optimist. although slowly the word "hope" is coming more and more into my vocably. it is highly written about in the lord of the rings. maybe that is why i like them so much.


well i am done rambling for the nite. peace and love to all. capt.
but to see her respond like she has gives one hope. the day may come where she leaves the living. who knows. we are will meet that fate. i am reading a good book that my sister recommended. it is i "if i make it to five". about how adults can get inspiration from the kids of this world. it is written by a doc who deals with kids and their brain tumors. not much joy could be found in that line of work. but the book is just the opposite. i highly recommend. i do not have kids, but i am drawing it for inspiration for my dealings with my wife.


i am lucky enough to have a wife who loves me unconditionally. she thanked me tonite, like thank you for being there. it is nothing short of what she would be doing for me, if the roles were reversed. i hope to think that all spouses would do the same.
todays reflections

well about this time ealier yesterday i was thinking that my wife might never come home. well today it is a new story. our doc gave her something yesterday in the late a.m. and she was about normal last nite we i went into see her. yesterday afternoon i was lowering the a snakes belly. it was bad. the doc came in today and even she was blown away by her condition. rebound i should say. to experience the worse and expect, when just the opposite happens is overwhelming. as i left today she was up beat and pretty much able to hold a conversation. yesterday a.m. and friday nite was a disaster. the great doc gave her 1 drug and she was able to bounce back with that. we guess that it will now be part of her daily regiment. she is such a miracle. although myself i do not beleive in miracles or prayers. what will be will be....

Friday, August 01, 2003

more news from the front

well my wife has taken a turn for the worse, i feel. it as if she might have had a stroke this week, or something. i do not think it is due to her ammonia levels. today she was just rambling on about her life in new york, and not making any sense. i have the word i was thinking about for the people in the ER. they have the look of despair on their faces. we all do. i have been to the edge and looked over. and it is no fun.

more news at another time. p/l, capt.

Thursday, July 31, 2003

there seems to be a level of ammonia that she can operate on and then there is the level where she is out of it. i think she is somewhere in between those levels now. have not seen or heard from doc today. just saw the nurse and getting ready to go back there now. for the rest of the afternoon. she is not so anxious to come home now. the last couple of days she has been this way. just sitting back and enjoying the show. she does know she in the hospital. but that is about it. she does not talk much. like she is thinking of something, but if you ask what she is thinking of, she says nothing.....

who knows the next chapter. ....peace and love, capt.
well i am back again today.

i just wanted to check and say hey. hey. my wife is still in hospital, going on 5 days now. her ammonia levels are still high, but coming down. she just sits there and laughs at nothing. almost like alzheimer. it is going to be hard to bring her home, i bet. i can only do so much here for her. her doc did not think that it would be time for hospice.

Wednesday, July 30, 2003

i would hate it if she got an infection in the hospital. today she had this cough that i did not like. we will wait until the a.m. to see about that. her doc (our doc) has been up there every day in the a.m. to check on her. as stated before she is the best. a light at the end of the tunnel. she is.

well just going to go it a nite, and wanted to get some more thoughts off my head. until next time. p/l, me.
i go through the ER exit mostly at nite, and there is nothing but sick and hurt people there. of course, what would you expect. but it is just so sad. and most of them have others there with them. but not me. i am the lone soldier on the front line here. and if i do not go see my wife, not many others do. so i will send out a note tonite to let others know she is out of the ICU at least.
observations of today

well today again was long. my wife is still in hospital but was moved out of ICU. she is not really there. in the 3 hours i was up there tonite, she maybe spoke no more than 10 words. we will see if she comes home tomorrow.

do you know that look everyone has on their faces in the ER? well my whole life is like that look now. i guess it is the concerned look. it is that sinking feeling look, i think.
well gtg. that is all for today.

i did get my new pc together, working out the bugs in it now. peace and love to all.
another moment for the highlight reel.

i am again on drugs this week. and i think i am losing some weight with the back and forth with the hospital. but i will be okay, i guess. feels like i am in this alone. my family is 900 miles away and there is not much more family in town. our friends all work or live a normal life, if there is one in these days.

trduge on, i will. like frodo in his quest.
today news

well i was able to get my wife into the hospital over the weekend, as you might have read. well she is doing much better. the last couple of days she has been anxious to get out of there and come home. today she is content to sit back and enjoy the show. she is laughing at every thing. i guess it could be worse. she could be crying. but she just does not seem herself, just yet. and today also got to her room and she was standing in shit. she could not make it to the bathroom since she has IV's in her. and her nurse had not check on her. she also did not know how to call the nurse with the buzzer. so like i said she is not herself just yet. not a good sight today. i rang the nurse and she came and cleaned it up.

Sunday, July 27, 2003

as for me, well i am hangin in there. my HIV is still undetectable as mentioned before. and i feeling fine. if i change my hiv drugs, which i may due next month. i will have to stop the STI. so i am not looking forward to that. i see the doc again in 6 weeks. and i plan on staying on the drug holiday.

well gtg. for now. until next time. peace and love.
she did not even know i was there, and it is quite draining to be up there. so i am home and getting ready for a session of weight lifting. got to keep the caregiver healthy. the doc says that she does not have an infection or internal bleeding so they are just going to monitor her over the next few days and give her ammonia medicine to get that level down. we beleive and hope that this too shall pass. once we get those levels back down.
news from the front...

well i was able to get my wife into the hospital yesterday, finally. she has been avoiding going there. of course. her ammonia levels are way too high, from her liver failure. she is not coherent at all. i could not stay up there too long. i did not need to see her that way. she is in restraint. i highly recommend not seeing your spouse every in restraints. no fun.

Tuesday, July 22, 2003

well gtg. hope all is well. peace and love, capt.