Wednesday, February 03, 2010

Snippets from the edge (again)

Oooh, look, ponies
We're driving to the Dr. yesterday, past some pasture land where some Shetlands live. H stands up in the car (a convertible with the top down) and is leaning outside the car pointing and yelling (you guessed it), "Oooh, look, ponies!" Giant smile on his face, even as I pulled him back into his seat with the seat belt.

How I got it
Took H to a new Dr. (GP) yesterday. When the Dr. came in, H blurted out, "I just want to tell you how I got HIV…." And he did. I filled in the rest of the history with H nodding, although not necessarily in time with my information.

Well, the new anti-viral regimen is considered a salvage regimen, where they just throw a bunch of anti-virals at the virus in hope of controlling it. Not surprising, but I had to figure this out myself with research…why can't the doctors just tell me this kind of stuff? I'd prefer honesty, thank you.

H's sister came to visit last weekend and commented privately to me, "His skin, it's kinda yellow/gray now. He's lost weight." No kidding. She was surprised that H got so tired during her two-hour visit.

A whole lotta shaking
H's hands are shaking more and more and his head's beginning to as well a bit. He is struggling to sign his name on paperwork.

Feeling any better?
I asked H if he thought that his viral load was dropping, if he was feeling any better since he's been on his meds for over three weeks now. He says, "Not really…I'm getting more tired…it may be going up instead." "I'm sorry, honey…are you afraid?" "Not yet," he says.

Please forgive us
Got an email from H's parents where they said, "please forgive us for not supporting you as much as we could because we were busy with our own lives.… I sure hope that you both can spend Christmas with us at our new house." Errrr, thanks, but you really need to come up here and visit your son. Don't you get it? It isn't about me…and H may not make it to Christmas ("let's wait and see how he does").

1 comment:

Mrs. Sew and Sew - Karen said...

I stumbled across your blog. I don't know how it feels to live with someone with aids, but I do know how it feels to be a caregiver. I have done it for 31 years. I think we are just starting the dementia decline. Oh dear God! I could feel your tiredness and your need to withdraw from the relationship when reading your blog. I have been there in the same place. Actually, just wanting to let you know that I have had you and your situation on my mind. I want to say take care but know that is almost impossible in your situation. Can I say, "Try to love yourself!" You have done good by H. Sorry if I have said anything to offend you. I just felt compelled to comment. ~Blessings, Karen