So H has been gone for over a week visiting family. A break for me...just me and what I want to think about and do. I had forgotten just how much I do for him. Upon his arrival, a trip to the pharmacy, set up medications, hadn't eaten all day, dinner, variety of home projects (like why the TV suddenly doesn't work...just a loose wire)....
While he was gone, I felt so free, so unencumbered. The time went by so fast and I reveled in the brief freedom that I felt. I felt light, had a smile on my face.
Now I just feel heavy, depressed, like I'm dragging a weight around again.
Many of my aches & pains went away or were much less problematic while he was gone. Now, that stiff neck and sore back are back.
I'm really tired of this.
Monday, December 11, 2006
Tuesday, November 14, 2006
When there is no there there
My last post was "at what cost?" And now I ask myself that same question about me staying to care for someone who is so ill.
What if they don't have emotional room anymore to be there for you when you need it? I can't talk with H about how I feel these days. He can't hear how difficult all this is for me, how upset I am, how distressed at at the end of my rope I am. I get that. But he can't handle me being upset at all anymore about anything.
And, my friends, bless their hearts, can only hear this stuff so much. So, here it is on a blog.
In fact, on the rare occasion that H & I have an arguement these days (usually, I just let things go, which is why I've been so depressed in the past) and I raise my voice, he usually ends up cowering away and tells me that I'm "being mean." I'm just not a mean guy; I have been called many things, but never mean (until now). If fact, many people have told me that I'm one of the nicest guys they've met.
But, him seeing me upset just triggers his fear, poor man. I have learned that he can't be there for me emotionally because he has all his own stuff to deal with, but is this really a partnership anymore? And so, what I've learned is to just not share whatever is going on with me...You learn to live without that support & connection.
What if they don't have the physical ability to be your lover. And you don't want them to be your lover anymore because of how they are. You learn to live without that support & connection.
What if you don't want to go home, but you do. So, I go home, but I don't want to. There is nothing there that feeds me. It used to be that home was my refuge, but now it's my prison.
What if you have no fun together anymore. When you no longer remember what it's like to have a healthy lover. You learn to live without it.
How long do you live without these things until you don't know what they look like anymore? Does your ability to receive these gifts go away? Or is it just lying dormant? Does your skill as a partner or lover go away? I hope not. I'm eager to get back on the bicycle again.
What if they don't have emotional room anymore to be there for you when you need it? I can't talk with H about how I feel these days. He can't hear how difficult all this is for me, how upset I am, how distressed at at the end of my rope I am. I get that. But he can't handle me being upset at all anymore about anything.
And, my friends, bless their hearts, can only hear this stuff so much. So, here it is on a blog.
In fact, on the rare occasion that H & I have an arguement these days (usually, I just let things go, which is why I've been so depressed in the past) and I raise my voice, he usually ends up cowering away and tells me that I'm "being mean." I'm just not a mean guy; I have been called many things, but never mean (until now). If fact, many people have told me that I'm one of the nicest guys they've met.
But, him seeing me upset just triggers his fear, poor man. I have learned that he can't be there for me emotionally because he has all his own stuff to deal with, but is this really a partnership anymore? And so, what I've learned is to just not share whatever is going on with me...You learn to live without that support & connection.
What if they don't have the physical ability to be your lover. And you don't want them to be your lover anymore because of how they are. You learn to live without that support & connection.
What if you don't want to go home, but you do. So, I go home, but I don't want to. There is nothing there that feeds me. It used to be that home was my refuge, but now it's my prison.
What if you have no fun together anymore. When you no longer remember what it's like to have a healthy lover. You learn to live without it.
How long do you live without these things until you don't know what they look like anymore? Does your ability to receive these gifts go away? Or is it just lying dormant? Does your skill as a partner or lover go away? I hope not. I'm eager to get back on the bicycle again.
Tuesday, October 17, 2006
At what cost?
H and I started talking last night about his fatigue. Seems that he's just been very, very tired recently and more so the last week or so. Most likely, his viral load is going up again...it's a very clear correlation: VL up, energy down. He's getting mentally foggier as well (also happens when VL goes up) and has a hard time remembering the conversation we were just having. He just kinda spaces out mid topic. It's hard to describe, but he's slowing down again. This happended last time his VL shot up. The rub is that his virus is resistant to nearly everything, so if it is going up rapidly (more than from 0 to 90,000 in a few months...which is fast enough for me), there's not a lot to be done, unfortuantely.
H says, "I wonder just how much money it's costing to keep me alive and if it's worth it." Last year his meds cost over $60,000 and his stays in the hospital were another $30,000 or so. One of his HIV meds costs $1,800 a month; the other two are a relative bargain, coming in at another $2,000 or so combined. And these meds are just 3 out of over a dozen he takes everyday. We estimate somewhere around $750+K in medical bills (all inclusive) for the past nine years or so.
I told him that without those meds, he wouldn't be alive today and it's been worth it for me (I didn't share my very, very mixed feelings on this topic). And he says, "Alive for what? At what cost? I feel like s4*! most of the time, my stomach's upset, I'm tired and always in pain. And the money they're spending on me could help a lot of other people." He rarely acknowledges my perspective on his situation.
He's feeling guilty that his medical bills are so high. Now, we have very, very good insurance coverage for him, so everything is covered. I tell him not to feel guilty about this...that our insurance companies have lots of money and for every person that has high bills, there are likely many, many, more (like me) that do not. But his self esteem has taken a big hit from having the "plague" and so he doesn't feel like he deserves anything at all. This is very sad. With former friends disappearing, being homebound much of the time, and focusing on his own losses and trauma somewhat obsessively makes him a pretty distressed guy right now.
He's taking antidepressants and I've been trying to get him to a psychiatrist to see about getting a new med, but I haven't been able to get him to agree and go.
So, years later, he is still alive, but at what cost? His quality of life sucks and it costs a pile of money to keep him alive. In the UK, I understand that they make cost/benefit decisions about a patient's care based on their likelihood of recovery. If someone is terminal, they don't necessarily do the heroics: Rx, procedures, and/or hospital care. (Some US HMOs do this too.)
We don't do that here...at least not our insurance plans. And I have mixed feelings about that. Of course, you want to keep your loved one alive, but at what cost to the individual, their loved ones, and the insurance companies?
H says, "I wonder just how much money it's costing to keep me alive and if it's worth it." Last year his meds cost over $60,000 and his stays in the hospital were another $30,000 or so. One of his HIV meds costs $1,800 a month; the other two are a relative bargain, coming in at another $2,000 or so combined. And these meds are just 3 out of over a dozen he takes everyday. We estimate somewhere around $750+K in medical bills (all inclusive) for the past nine years or so.
I told him that without those meds, he wouldn't be alive today and it's been worth it for me (I didn't share my very, very mixed feelings on this topic). And he says, "Alive for what? At what cost? I feel like s4*! most of the time, my stomach's upset, I'm tired and always in pain. And the money they're spending on me could help a lot of other people." He rarely acknowledges my perspective on his situation.
He's feeling guilty that his medical bills are so high. Now, we have very, very good insurance coverage for him, so everything is covered. I tell him not to feel guilty about this...that our insurance companies have lots of money and for every person that has high bills, there are likely many, many, more (like me) that do not. But his self esteem has taken a big hit from having the "plague" and so he doesn't feel like he deserves anything at all. This is very sad. With former friends disappearing, being homebound much of the time, and focusing on his own losses and trauma somewhat obsessively makes him a pretty distressed guy right now.
He's taking antidepressants and I've been trying to get him to a psychiatrist to see about getting a new med, but I haven't been able to get him to agree and go.
So, years later, he is still alive, but at what cost? His quality of life sucks and it costs a pile of money to keep him alive. In the UK, I understand that they make cost/benefit decisions about a patient's care based on their likelihood of recovery. If someone is terminal, they don't necessarily do the heroics: Rx, procedures, and/or hospital care. (Some US HMOs do this too.)
We don't do that here...at least not our insurance plans. And I have mixed feelings about that. Of course, you want to keep your loved one alive, but at what cost to the individual, their loved ones, and the insurance companies?
Friday, October 13, 2006
Magnetic & dodging the bullet
While H has been poz and quite ill for some time (over 10 years now), I've managed to dodge the bullet somehow and continue to test negative. Whew. I've been waiting to hear a poz diagnosis (and I wouldn't be suprised really), but my results are always negative.
Many people assume that because my long-term partner is poz that I must be as well. Certainly, given some of the things that we've done in the past, before we knew his diagnosis, you would think that I would have ended up poz. Use your imagination....
What's wild about all this is that H and I were monogamous for many, many years, probably 15 or so. We both prefer monogamy (we are "built" that way, if you will) and we also realized in the 80's that being so would somehow protect us from the plague that was just starting among our friends and acquaintances. Guess not.
While I'm not going to go down the road of how he seroconverted (although I have my theories), I consider myself very, very lucky. At this point, how he got it is less important than he has been very ill the past year and may not have much time left here.
While I don't object per se to having sex with someone who is poz (as you can probably imagine, I'm safe to the point of paranoia these days), I do have issues with having sex with someone who looks sick.... And he does.
Ever see those old men with a round soccer-ball belly, thin arms and legs, no chest or ass, shuffling down the street with a cane? H looks like that now, but his face still looks like he's in his 30s and he still has most of his hair.
I wish that I could get past my visceral reaction to how he looks, but I can't. The magnetism just isn't there anymore (it hasn't been for a long time) and that is sad.
And so it goes.
Many people assume that because my long-term partner is poz that I must be as well. Certainly, given some of the things that we've done in the past, before we knew his diagnosis, you would think that I would have ended up poz. Use your imagination....
What's wild about all this is that H and I were monogamous for many, many years, probably 15 or so. We both prefer monogamy (we are "built" that way, if you will) and we also realized in the 80's that being so would somehow protect us from the plague that was just starting among our friends and acquaintances. Guess not.
While I'm not going to go down the road of how he seroconverted (although I have my theories), I consider myself very, very lucky. At this point, how he got it is less important than he has been very ill the past year and may not have much time left here.
While I don't object per se to having sex with someone who is poz (as you can probably imagine, I'm safe to the point of paranoia these days), I do have issues with having sex with someone who looks sick.... And he does.
Ever see those old men with a round soccer-ball belly, thin arms and legs, no chest or ass, shuffling down the street with a cane? H looks like that now, but his face still looks like he's in his 30s and he still has most of his hair.
I wish that I could get past my visceral reaction to how he looks, but I can't. The magnetism just isn't there anymore (it hasn't been for a long time) and that is sad.
And so it goes.
Thursday, October 12, 2006
VL going up...
From 0 to 90,000 in a few months. Yikes. His CD4 count is still high at over 400. Dr. says not to worry, but....
Thursday, October 05, 2006
Keeping me from living
Have I stayed with H because I'm afraid of being on my own. A therapist some time ago asked me, "What keeps me from living while waiting for him to die? "
Am I hesitating so much to press for putting H in a nursing home because then I'll have to figure out my life and I can't blame him anymore for me not getting what I need?
I don't think that this is the case, but I do know that I fantasize a lot about being on my own, having freedom, which to me means less responsibility in general, and specifically, less responsibility to care for someone else.
I have held back from pursuing him getting care, going into a nursing facility, because I can't bear to break his heart...and I know it would. And I don't know that I could live with myself.
But I do know that I am done with the romantic part of our relationship and have been for a long, long time. He isn't done and lives in a fantasy world of somehow our relationship will get better...if I were him, I'd hang on to that hope as well.
The rub in not taking action due to concerns about how he might feel means that I miss opportunities...opportunities that may not come along again.
For example, some years ago I met a great guy...sexy as hell, built, smart, successful, funny, and spiritual. Not to mention a (mostly) bottom with an amazing ass. Oh, and negative too. We clicked in a way that I do with very few people...sometimes that connection is just "there" on many levels. He was in a relationship that was winding down, mutually, and was angling to get me to leave my sick lover...not directly or rudely, but it was there. And while I do think that our paths will cross again, I have regrets today for letting my loyalty and fear keep me from something that I know I wanted...and that I still want now, 4 years later.
And there were others and while maybe the connection wasn't as strong, if I were single...I know that I wouldn't be for very long. I'm just too relationship oriented.
How long can I hold my breath and deny my needs? I've done it for so long that it is second, if not first, nature. No wonder I've been depressed.
I don't blame H for my choices...those are mine to own alone...but I do blame him for being sick.
Am I hesitating so much to press for putting H in a nursing home because then I'll have to figure out my life and I can't blame him anymore for me not getting what I need?
I don't think that this is the case, but I do know that I fantasize a lot about being on my own, having freedom, which to me means less responsibility in general, and specifically, less responsibility to care for someone else.
I have held back from pursuing him getting care, going into a nursing facility, because I can't bear to break his heart...and I know it would. And I don't know that I could live with myself.
But I do know that I am done with the romantic part of our relationship and have been for a long, long time. He isn't done and lives in a fantasy world of somehow our relationship will get better...if I were him, I'd hang on to that hope as well.
The rub in not taking action due to concerns about how he might feel means that I miss opportunities...opportunities that may not come along again.
For example, some years ago I met a great guy...sexy as hell, built, smart, successful, funny, and spiritual. Not to mention a (mostly) bottom with an amazing ass. Oh, and negative too. We clicked in a way that I do with very few people...sometimes that connection is just "there" on many levels. He was in a relationship that was winding down, mutually, and was angling to get me to leave my sick lover...not directly or rudely, but it was there. And while I do think that our paths will cross again, I have regrets today for letting my loyalty and fear keep me from something that I know I wanted...and that I still want now, 4 years later.
And there were others and while maybe the connection wasn't as strong, if I were single...I know that I wouldn't be for very long. I'm just too relationship oriented.
How long can I hold my breath and deny my needs? I've done it for so long that it is second, if not first, nature. No wonder I've been depressed.
I don't blame H for my choices...those are mine to own alone...but I do blame him for being sick.
Tuesday, August 29, 2006
A 6 month horizon
Life goes on and on and on. H is doing well these days...well enough I suppose given that he's been in the hospital some 6 times in the past year. While the Drs aren't talking about PML or a short time to live, that cloud is hanging over us all of the time. Well, over me anyway.
H told me last night that he's been falling around the house a lot. I asked when and how and if he has his cane with him around the house. He says, yes, even with the cane, he's been falling. Now, he hasn't hurt himself, I think, but it's another factor in whether I think that he can take care of himself during the day while I'm at work.
Talking with my doctor, and, while she doens't know the whole story of what is going on with H, she suggested that I just arrange for hospice care now. Being told that I need to arrange hospice care for H twice in the last year is sufficient in her mind that he needs the help. Apparently, you can have hospice come in and do care for 6 months and then renew again in 6 months.
I need to talk with his doctor about this.
I'm seeing H fade more and more. And there's nothing I can do.
H told me last night that he's been falling around the house a lot. I asked when and how and if he has his cane with him around the house. He says, yes, even with the cane, he's been falling. Now, he hasn't hurt himself, I think, but it's another factor in whether I think that he can take care of himself during the day while I'm at work.
Talking with my doctor, and, while she doens't know the whole story of what is going on with H, she suggested that I just arrange for hospice care now. Being told that I need to arrange hospice care for H twice in the last year is sufficient in her mind that he needs the help. Apparently, you can have hospice come in and do care for 6 months and then renew again in 6 months.
I need to talk with his doctor about this.
I'm seeing H fade more and more. And there's nothing I can do.
Monday, May 01, 2006
Nearly undectable
Unexpected recent news. H's viral load is way, way down...the lowest that it's been in many, many years. And his virus is resistent to all the meds, so it shouldn't be happening, but it is and we'll take it. He has energy again.
What a ride this is: white knuckling it in the front seat of the roller coaster.
What a ride this is: white knuckling it in the front seat of the roller coaster.
Tuesday, April 11, 2006
Getting closer
Today we had friends over for dinner; they bring the pizza and conversation and I help with their taxes. Fair trade. One person, K, said that when she arrived that H was confused about putting clean dishes away..."a big deal project" for H, she said, "he got overwhelmed"...and that he kept forgetting what part of the floor he had last swept.
I said that I think I'll have to put H in a nursing home in 6 - 12 months and she says..."no, on the short side of that...I'd be surprised if he makes it to 6 months given what I saw today."
Later, I was talking with H about my conversation with my boss about my work. While I'm not in trouble or anything like that (I don't think), I am very behind in my work and have missed 6 weeks in the last 6 months due to H's health. H was very surprised and felt very bad that it's so hard for me to work...I told him that I can't concentrate and am upset all of the time. He says, well I'm home now, so you can stop worrying.
Not true. I explained how everytime that he went into the hospital, it affects me for awhile afterwards, not to mention the cummulative affect of 3 hospitalizations in 6 months (and 10+ years now of AIDs-realted health issues). I'm depressed, worried, scared, anxious, generally whacked out, overwhelmed, plain and simple and it's hard for me to work. Now I'm worried about work...I have to dig out right now....review time is coming up...and I worry that I don't have it in me, that I am so worn down. (I will find a way, if there is one.)
He said he felt really, really bad and went to take a nap.
I started thinking that maybe it's just me that is in denial about this. That it is my fear, my lack of objectivity that is making this worse for both of us. A friend of ours, C, tells me that what is best for H may not be what either H or I want. She backs me too in putting H in a nursing home and she has known H for 25 years and me for nearly as long. His family backs this too and all of our friends, save for the very, very few that don't want to get caught in any crossfire. Doctors are all onboard as well.
It isn't his death that I'm afraid of; it's what happens between now and then that worries me. We talked about that the other night...the same conversation where I told him that he doesn't have to stay solely on my account. And, that I have a plan, such as it is. He seemed very pleased on both accounts.
How gut wrenching is that? Saying your piece is the right thing, but man these are hard topics.
What I haven't done is talked with H about the distinct possibility, likelihood really, that he will need to go to a nursing facility soon. Probably sooner than either of us like. This is probably the best thing for H. Unfortunately, except for visiting, he won't be coming home most likely.
Time to take the tranqs, get a good night's sleep, and hit the job running tomorrow morning.
Now, I would ask that you pray for both H and me: strength for me and peace for him.
I said that I think I'll have to put H in a nursing home in 6 - 12 months and she says..."no, on the short side of that...I'd be surprised if he makes it to 6 months given what I saw today."
Later, I was talking with H about my conversation with my boss about my work. While I'm not in trouble or anything like that (I don't think), I am very behind in my work and have missed 6 weeks in the last 6 months due to H's health. H was very surprised and felt very bad that it's so hard for me to work...I told him that I can't concentrate and am upset all of the time. He says, well I'm home now, so you can stop worrying.
Not true. I explained how everytime that he went into the hospital, it affects me for awhile afterwards, not to mention the cummulative affect of 3 hospitalizations in 6 months (and 10+ years now of AIDs-realted health issues). I'm depressed, worried, scared, anxious, generally whacked out, overwhelmed, plain and simple and it's hard for me to work. Now I'm worried about work...I have to dig out right now....review time is coming up...and I worry that I don't have it in me, that I am so worn down. (I will find a way, if there is one.)
He said he felt really, really bad and went to take a nap.
I started thinking that maybe it's just me that is in denial about this. That it is my fear, my lack of objectivity that is making this worse for both of us. A friend of ours, C, tells me that what is best for H may not be what either H or I want. She backs me too in putting H in a nursing home and she has known H for 25 years and me for nearly as long. His family backs this too and all of our friends, save for the very, very few that don't want to get caught in any crossfire. Doctors are all onboard as well.
It isn't his death that I'm afraid of; it's what happens between now and then that worries me. We talked about that the other night...the same conversation where I told him that he doesn't have to stay solely on my account. And, that I have a plan, such as it is. He seemed very pleased on both accounts.
How gut wrenching is that? Saying your piece is the right thing, but man these are hard topics.
What I haven't done is talked with H about the distinct possibility, likelihood really, that he will need to go to a nursing facility soon. Probably sooner than either of us like. This is probably the best thing for H. Unfortunately, except for visiting, he won't be coming home most likely.
Time to take the tranqs, get a good night's sleep, and hit the job running tomorrow morning.
Now, I would ask that you pray for both H and me: strength for me and peace for him.
Monday, April 10, 2006
Anniversary
Today is our 23-year anniversary and I am not in a celebrating mood.
Sunday before last, H went into the hospital again with seizures. He came home only a few days ago. Each time he goes into the hospital for seizures, it takes a lot out of him. And me.
He get's less and less functional and cogent and I get more and more tired. Sadly, his care needs are increasing when I'm beginning to stumble from being so tired all the time.
And work? It is a joke that I'm even coming to the office now and then. No work gets done...I'm too upset.
Just how much longer can this go on?
Sunday before last, H went into the hospital again with seizures. He came home only a few days ago. Each time he goes into the hospital for seizures, it takes a lot out of him. And me.
He get's less and less functional and cogent and I get more and more tired. Sadly, his care needs are increasing when I'm beginning to stumble from being so tired all the time.
And work? It is a joke that I'm even coming to the office now and then. No work gets done...I'm too upset.
Just how much longer can this go on?
Monday, February 27, 2006
A model to be forgotten
Last night, I got another reminder.
Was helping H put together an Excel spreadsheet model. He has a pretty good idea of what he wanted, but couldn't figure out how to add formulas. Odd, since he was the Excel whiz for many years, creating inventory & cash flow models for our businesses, creating monthly budgeting worksheets and so forth.
Last night, I had to show him how to select a cell, copy it, and then paste it no less than 4 times over the course of 10 minutes. He kept forgetting which cells were which and where to paste the copied ones.
This is scary.
Was helping H put together an Excel spreadsheet model. He has a pretty good idea of what he wanted, but couldn't figure out how to add formulas. Odd, since he was the Excel whiz for many years, creating inventory & cash flow models for our businesses, creating monthly budgeting worksheets and so forth.
Last night, I had to show him how to select a cell, copy it, and then paste it no less than 4 times over the course of 10 minutes. He kept forgetting which cells were which and where to paste the copied ones.
This is scary.
Friday, February 24, 2006
Lining up
So, H and I have been talking about the following:
Sheesh, something is coming....
- That he's ready for the next plane (he brought up unsolicited)
- That he's had a good life and he's glad for that (he brought up unsolicited)
- He's at peace with the possibility of dying
- I am at peace with the possiblity of him dying
- That he doesn't think he'll be here in a few years to enjoy the new garden grown out (his intuition tells him)
- That I don't think he'll be here in a few years too (my intuition tells me)
Sheesh, something is coming....
Tuesday, February 21, 2006
67 things about me
- My favorite color is blue
- I like fast cars and have owned a few
- I like men who are hot, smart, and most importantly, sweet
- My garden is my sanctuary
- Computers (either at home or at work) eat much of my time
- I have more regrets than dreams
- I lead with my heart, not my mind
- I am prone to depression
- I am an only child
- I am afraid of what aging will bring
- I work out very vigorously at the gym (see above)
- I like working out
- My favorite foods are: chocolate ice cream, french fries, potato chips, and beer (not in that order) (see above)
- I love my cats
- Right now, I have no sex life to speak of, although I often have opportunities, and it usually doesn't bother me
- I love my partner, even tho' he doesn't meet my needs anymore
- I am trying to figure out how to live while I wait for my partner to die
- My work seems glamorous & exciting to others, but it is pretty dull to me
- My hair doesn't get long, it gets big
- I have a hairy chest, tummy, legs, and ass...sometimes I trims, sometimes I don't
- I like Pink Floyd (a lot)
- I laugh at giant pick up trucks & SUVs, esp those with lift kits (sorry 'bout yer dick!)
- I'm afraid of dying alone
- I'm afraid of getting seriously ill
- I really enjoy public speaking and have done it professionally
- I'm very shy and nervous in small social groups
- I would like to experiment with a love relationship with a gay couple (I think)
- I fantasize about life without a sick partner
- I fantasize about living alone
- I love computer games, especially The Elder Scrolls series
- I love plants of all types and have very little space left for new ones in the house or the garden
- I'm told that I look younger than I am (thanks mom 'n' dad!)
- My favorite movie is a tie between the Lord of the Rings trilogy, The Shining, and Fantastic Planet
- My favorite TV show is a tie between Six Feet Under, South Park, and Transgeneration
- I'm a geek at heart
- I don't care much about the latest fashions, tho' I do like nice clothes
- I don't care at all about celebrity gossip, reality shows, or who's who
- I would like to try living in Ireland, Scotland, or London
- I have no time for bitchy, judgemental, or mean people...so there!
- I have lived in Hawaii and decided it was not for me
- I love fish and have had aquariums for years, tho' I don't currently have one
- I love the feeling of comfortableness (sic) when talking with old friends
- I really enjoy good coffee
- I rarely enjoy anonymous sex and I say "no" way more than I say "yes"
- The way into my pants is through my heart & mind (and having a great body doesn't hurt, either)
- I don't kiss and tell
- I am versatile, but prefer to top
- I have lived in the same house for the past 20+ years
- I have very strong intuition and it is more often than not right
- I need to listen to my intuition more
- I'm a Cancer with Pisces rising and many planets in Leo
- I'm pee shy more often than not
- I don't consider myself attractive
- I am not impressed by how much money someone has, where they live, or what they own
- I have a tighty-whitey fetish
- I like men and art that make me think
- I like to travel
- I want to make a contribution to the world that matters
- I'm an INFJ
- It breaks my heart to see my partner so sick and losing his mind
- My mantra for many years (with thanks to Nietzsche): "What does not destroy me utterly makes me stronger"
- I've liked boys/men for as long as I can remember
- I got in trouble for playing with the neighbor boys' junk
- I came out at college when I was 20
- I am a butt man
- For the first time in my life, I'm actually gaining muscle mass from working out...mostly because I've been eating more (see below)
- I no longer have a six pack
Monday, February 20, 2006
I'm so tired (& puffy)...
Yesterday, H and I are sitting in the office, him at his desk, me at mine. He starts moaning about his foot pain (neuropathy) and runs to get meds.
He sits back down and says, "I'm so tired of this (a single man's name).... I don't want to do this anymore...these pills, always chasing the pain." I say, "I understand. It's OK. I don't blame you. I wouldn't want to either...so many years. It's OK; I understand." He smiles with a bit of tears in his eyes. I want him to know that it's OK to go, that I'll be OK, that I have a plan...even tho' I'd miss (what's left of) him and the companionship at home.
He knows he's slipping again (he's been getting more confused and forgetful again) and his pain is very bad. I know that sometimes he wants to go...he is tired & depressed...he has been so sick for a very long time now.
I've heard that it helps sometimes to tell someone who is very ill that it's OK for them to go. And it really is OK with me...although a bit frightening at times. I have to say that he's receding again and has been for a long time...I live mostly with memories, many of them wonderful, now anyway as he's not here much. In many ways, I've already buried him...I'm just waiting for the formality.
They have him on some new meds...they make his feet, legs, belly, & face swell. A known side effect, but being the good fag that H is, he doesn't like it and wants to stop taking these meds.
H spent Friday night with a friend/fb of his. He said he couldn't get hard, coudn't come. No real reason to try anymore, he says.
My poor guy is so depressed. Who could blame him? Here he is a young(ish) man and it's all been taking away: health, career, friends, incredible mind (and ass!), big dick, etc. He's got the body of an old man now. We'll talk with his Dr. about either more or a different anti-depressant. In the past, changing anti-depressants hasn't really helped him much.
It's a strange thing for me: I don't feel all wacked out, tho' a little anxious. I think that I've made peace with what is likely going to happen. I can't do anything about it.... And, I do want it to happen sooner rather than later as much for his sake as for mine.
He sits back down and says, "I'm so tired of this (a single man's name).... I don't want to do this anymore...these pills, always chasing the pain." I say, "I understand. It's OK. I don't blame you. I wouldn't want to either...so many years. It's OK; I understand." He smiles with a bit of tears in his eyes. I want him to know that it's OK to go, that I'll be OK, that I have a plan...even tho' I'd miss (what's left of) him and the companionship at home.
He knows he's slipping again (he's been getting more confused and forgetful again) and his pain is very bad. I know that sometimes he wants to go...he is tired & depressed...he has been so sick for a very long time now.
I've heard that it helps sometimes to tell someone who is very ill that it's OK for them to go. And it really is OK with me...although a bit frightening at times. I have to say that he's receding again and has been for a long time...I live mostly with memories, many of them wonderful, now anyway as he's not here much. In many ways, I've already buried him...I'm just waiting for the formality.
They have him on some new meds...they make his feet, legs, belly, & face swell. A known side effect, but being the good fag that H is, he doesn't like it and wants to stop taking these meds.
H spent Friday night with a friend/fb of his. He said he couldn't get hard, coudn't come. No real reason to try anymore, he says.
My poor guy is so depressed. Who could blame him? Here he is a young(ish) man and it's all been taking away: health, career, friends, incredible mind (and ass!), big dick, etc. He's got the body of an old man now. We'll talk with his Dr. about either more or a different anti-depressant. In the past, changing anti-depressants hasn't really helped him much.
It's a strange thing for me: I don't feel all wacked out, tho' a little anxious. I think that I've made peace with what is likely going to happen. I can't do anything about it.... And, I do want it to happen sooner rather than later as much for his sake as for mine.
Wednesday, February 08, 2006
The next plane
It's been pretty quiet & tense...distant...at our house recently. I have been sorta in a funk and burned out. H is scared as his VL is going up again. Dr. says not to worry, but H is also getting more forgetful and confused again....
So we were talking and he talks about how he's OK with dying, moving onto "the next plane of existence." He said, "I've had a good life, went to college, had some businesses...done things that I've wanted to do. Never got to Europe tho'. It's OK, I'm not afraid. I'm ready to accept what comes." There's a part of me that says I should just take leave from work and take him on a trip or two while he still can go; I don't think he can go, really.
I know that he is afraid, but I also know that he knows that it's time to move on. He's been in denial that he is really that sick for a long, long time now...a dear friend of ours talks about H "sticking his head in the sand." This is the first time where he's looked back at his life and talked about how it's been good. I'm glad that he's coming out of denial, but I'm a little nervous about what's coming next. And, mostly, I'm glad that he thinks of his life as having been good. I am worried about having regrets on my deathbed and I need to address that.
This morning while out in the garden, I had a rush of excitement and fear when I looked at the sun rise. The thought was: "someday soon I'll be out here and he won't be inside anymore when I go back into the house. It's my life now and I've got to figure it all out...without him." There is a sense of anticipation and my gut tells me that it's coming...soon...this year. I have to say that I'm feeling lighter than I have in many, many months, in spite of knowing that something will happen soon enough.
So both of us can feel something coming...he's trying to make peace where he can, wrap up things in some ways, and has a sense of urgency about living his life. I'm just waiting, knowing that soon enough I'll be on my own and I am both thrilled and terrified. At least I'll be alive. And the reality is that H isn't contributing much at all these days, in any respect. He's not wholly there...so what will be missing when he dies? Whatever is left of him now and I'll be missing his company.... But, I'll feel relief that finally this is all winding down and I can get on.
I can't imagine being in his shoes: so sick for so long, stuck at home since he can't drive anymore, many friends gone, those that are left are wonderful but not around that much, I'm only home a few minutes in the morning and then after work. And, while I do my best to be reasonable, I have to say that I'm less than present most of the time. I would find the isolation oppressive. Hell, I find my own isolation oppressive. I need to have some guilt-free fun.
So we were talking and he talks about how he's OK with dying, moving onto "the next plane of existence." He said, "I've had a good life, went to college, had some businesses...done things that I've wanted to do. Never got to Europe tho'. It's OK, I'm not afraid. I'm ready to accept what comes." There's a part of me that says I should just take leave from work and take him on a trip or two while he still can go; I don't think he can go, really.
I know that he is afraid, but I also know that he knows that it's time to move on. He's been in denial that he is really that sick for a long, long time now...a dear friend of ours talks about H "sticking his head in the sand." This is the first time where he's looked back at his life and talked about how it's been good. I'm glad that he's coming out of denial, but I'm a little nervous about what's coming next. And, mostly, I'm glad that he thinks of his life as having been good. I am worried about having regrets on my deathbed and I need to address that.
This morning while out in the garden, I had a rush of excitement and fear when I looked at the sun rise. The thought was: "someday soon I'll be out here and he won't be inside anymore when I go back into the house. It's my life now and I've got to figure it all out...without him." There is a sense of anticipation and my gut tells me that it's coming...soon...this year. I have to say that I'm feeling lighter than I have in many, many months, in spite of knowing that something will happen soon enough.
So both of us can feel something coming...he's trying to make peace where he can, wrap up things in some ways, and has a sense of urgency about living his life. I'm just waiting, knowing that soon enough I'll be on my own and I am both thrilled and terrified. At least I'll be alive. And the reality is that H isn't contributing much at all these days, in any respect. He's not wholly there...so what will be missing when he dies? Whatever is left of him now and I'll be missing his company.... But, I'll feel relief that finally this is all winding down and I can get on.
I can't imagine being in his shoes: so sick for so long, stuck at home since he can't drive anymore, many friends gone, those that are left are wonderful but not around that much, I'm only home a few minutes in the morning and then after work. And, while I do my best to be reasonable, I have to say that I'm less than present most of the time. I would find the isolation oppressive. Hell, I find my own isolation oppressive. I need to have some guilt-free fun.
Tuesday, February 07, 2006
Just how done is "done?"
I went to a caregiver training class awhile ago...a class on caregiver burnout. Sorely needed, I might add.
Striking that when I went through a "Are you a burned out caregiver?" quiz, I scored very high...severe burnout, which basically means that you shouldn't be a caregiver anymore as the burnout affects your ability to provide care.
What do you do when you're "done," but you have to go on?
More doctor appointments this week and I find myself struggling to even pay attention at them. I know that they're important...I know that he needs the care and no one has the overview of what's going on with all the Drs and the details of what's happening at home. But geez...I am so sick of all this.
How am I burned out? Let me count the ways from the quiz:
always exhausted (yup)
feelings of hopelessness (sometimes)
overwhelmed (yup)
emotionally numb or emotionally explosive (alternating between the two)
unable to focus or concentrate (yup)
feel inadequate to the task (yup)
the need for an increased use of alcohol or stimulants (yup...former)
The teacher, class, and materials say, "Take care of yourself." Sure. I understand that. Get rest, recreation, exercise, eat well, etc. I try to do those things. But NOTHING changes the reality of what's happening to either H or me.
He's dying and I can't be there for him in the way I'd like. I want to help him, and I'll soldier on as best I can, but it's bad right now. I won't leave him, but I feel like I'm waiting for him to die, which I am honestly. He knows that too. And he is too.
And it's going to get worse before it gets better.
Monday, February 06, 2006
As the loin stirs
And, after writing the prior entry, I met this very hot guy at the gym...fantasy man...nice guy too. Who knows what might happen?
Having them in front of you "in the flesh" is so much more compelling than having them in front of you on the computer...duh.
On the computer, the brain gets too involved...is he really that hot? is he lying in this pics or profile? how far do I have to drive? does he want to go through with it or is he "shopping?" what if I don't like him? blah, blah, blah.
But meeting someone in person: your gestalt responds to the gestalt of the other. I'm not just looking at a picture or yet another series of IMs on a computer screen. There is a living, breathing (hot) man there, smiling at me. He smells nice (at the gym!), I like his body language and his eyes, his smile, and what I can see of his body, which turns out to be most of it happily.
It's been a long time and the pull is strong.
Having them in front of you "in the flesh" is so much more compelling than having them in front of you on the computer...duh.
On the computer, the brain gets too involved...is he really that hot? is he lying in this pics or profile? how far do I have to drive? does he want to go through with it or is he "shopping?" what if I don't like him? blah, blah, blah.
But meeting someone in person: your gestalt responds to the gestalt of the other. I'm not just looking at a picture or yet another series of IMs on a computer screen. There is a living, breathing (hot) man there, smiling at me. He smells nice (at the gym!), I like his body language and his eyes, his smile, and what I can see of his body, which turns out to be most of it happily.
It's been a long time and the pull is strong.
Saturday, February 04, 2006
Needs, what needs?
Earlier in H's illness...when he was too sick...I had boyfriends, for lack of a better term. And it was good. I mean, I persued 'em, had fun with them, had sex with them, and did other stuff too. H didn't know and I have no intention of telling him now, 8 years after the fact.
Now, he's know some of my bfs or fbs since then, but he's always been insanely jealous...even when he was healthy. It's worse now, I think, because he feels so insecure due to his health. At this point, I don't know if I would tell him or not...probably not.
Truth be told, the drive just isn't there right now. Oh sure, I get horny and take matters into my own hands (sic), but it just seems too much work to "find a man," for lack of a better expression. In the past, I met guys online and it worked out fine, believe it or not. Minimal flakes, no liars. Today it doesn't seem that way.
Aside from the logistics, I just don't have the energy to persue someone. Weird. Clearly, this is related to my emotional state. And, I know that it's not just a "get me off need," but a need to engage with someone...to be with someone who doesn't look sick....
Geez. H can't meet my needs and I no longer have the energy to pursue 'em. In a word: f*!@$ed (or rather not f*!@$ed).
Now, he's know some of my bfs or fbs since then, but he's always been insanely jealous...even when he was healthy. It's worse now, I think, because he feels so insecure due to his health. At this point, I don't know if I would tell him or not...probably not.
Truth be told, the drive just isn't there right now. Oh sure, I get horny and take matters into my own hands (sic), but it just seems too much work to "find a man," for lack of a better expression. In the past, I met guys online and it worked out fine, believe it or not. Minimal flakes, no liars. Today it doesn't seem that way.
Aside from the logistics, I just don't have the energy to persue someone. Weird. Clearly, this is related to my emotional state. And, I know that it's not just a "get me off need," but a need to engage with someone...to be with someone who doesn't look sick....
Geez. H can't meet my needs and I no longer have the energy to pursue 'em. In a word: f*!@$ed (or rather not f*!@$ed).
Thursday, February 02, 2006
Just when you think you can have hope
I've been plugging along now for a few weeks and feeling pretty optimistic. H's last viral load test was down, he's had more energy, he's eating, his night sweats stopped, and he's thinking more clearly. T-cells are 450+; VL 39K. He's looking more like his old self.
Now, his viral load is up, he's sleeping more, he's sweating again at night, and he's getting more forgetful and confused by the day. T-cells are still strong tho'; VL 73K.
VL almost doubling in a month is not good, especially since he's on one of the last meds that might work for him. We see his doctor next week. 100K VL is the threshold...if we can keep the VL below that, then the PML won't progress (as quickly).
What's striking now is how quickly he is getting more forgetful & confused. I had to explain our cell phone plan to him (granted, they can be confusing), but he couldn't track. 4 times. I've explained this to him before, but he forgot. So, I just simplified it for him. Here, use this phone....
We've had a friend, S2, stay with us the last week. He notices the confusion as well. He notices the decline since last year.
It's the PML. Stats are bleak: 90% of the folks who get it die within a year of diagnosis; a few have a complete remission, some stay where they are. Even with HIV meds that work to control the virus, which doesn't appear to be happening right now, average life expectancy is 2 years from PML diagnosis.
The short story is that it will likely get worse...it is just a question of how quickly. Last time we saw his Dr. (a few weeks ago), Dr. was very surprised that H is doing so well. We see Dr. again next Monday. It's horrible to see him improve physically, but to experience him losing his mind.
I've written about friends disappearing and offered some thoughts about what sick people need from their loved ones. Joe has captured that so well; I just fell apart when I read this post ("I Will Hold You Ten Times" is the name of the post. 1/30/06).
God, I am so tired and so afraid.
Now, his viral load is up, he's sleeping more, he's sweating again at night, and he's getting more forgetful and confused by the day. T-cells are still strong tho'; VL 73K.
VL almost doubling in a month is not good, especially since he's on one of the last meds that might work for him. We see his doctor next week. 100K VL is the threshold...if we can keep the VL below that, then the PML won't progress (as quickly).
What's striking now is how quickly he is getting more forgetful & confused. I had to explain our cell phone plan to him (granted, they can be confusing), but he couldn't track. 4 times. I've explained this to him before, but he forgot. So, I just simplified it for him. Here, use this phone....
We've had a friend, S2, stay with us the last week. He notices the confusion as well. He notices the decline since last year.
It's the PML. Stats are bleak: 90% of the folks who get it die within a year of diagnosis; a few have a complete remission, some stay where they are. Even with HIV meds that work to control the virus, which doesn't appear to be happening right now, average life expectancy is 2 years from PML diagnosis.
The short story is that it will likely get worse...it is just a question of how quickly. Last time we saw his Dr. (a few weeks ago), Dr. was very surprised that H is doing so well. We see Dr. again next Monday. It's horrible to see him improve physically, but to experience him losing his mind.
I've written about friends disappearing and offered some thoughts about what sick people need from their loved ones. Joe has captured that so well; I just fell apart when I read this post ("I Will Hold You Ten Times" is the name of the post. 1/30/06).
God, I am so tired and so afraid.
Wednesday, January 11, 2006
Making the best lemonade
After all the turmoil, life is settling down again. New meds have brought H's viral load down (tho' he is not undetectable and likely won't be) and he's doing better. So, I can back off of the worrying about the nursing home, at least for now.
What is very strage is that he has lots of energy and is doing projects here and there around the house, but his cognitive function doesn't seem to be improving as fast. (Geez, "cognitive function"...you think I had bee around a bunch of doctors or something.)
All of this does nothing towards getting my needs met. I've come to the conclusion that he just can't do that.
So...you make lemonade. Problem is, I never liked lemonade.
What is very strage is that he has lots of energy and is doing projects here and there around the house, but his cognitive function doesn't seem to be improving as fast. (Geez, "cognitive function"...you think I had bee around a bunch of doctors or something.)
All of this does nothing towards getting my needs met. I've come to the conclusion that he just can't do that.
So...you make lemonade. Problem is, I never liked lemonade.
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