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?

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.

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....

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.