Mar 20, 2006
Hey Dr Bob,
I dunno if youve read my other submissions Im the anemia-blood transfusion-infection-PCP-AIDS lower than a George Bush IQ test cautionary tale. You didnt reply, but thats fine I know ur really busy and idiots like me who cause most of their own problems arent the ones who really deserve ur time, but if u wanted to post A Cautionary Tale as a warning to others, Id still be grateful. Anyway, just so u have closure on my issues tho now I think about it, I dont see why ud want it, but anyway(u might not even have read the emails again I completely understand why if not not a problem).
I know theres always a chance this is the fever/fatigue talking (I can't sleep now coz of the damn fever/cough) but basically Ive pretty much decided against hospital/treatment. Ive completely had it with doctors, medicines, sickness and never getting any better whilst feeling like a lab rat (however much its my own fault if uve read my other msgs ull know that it probably is its ok, I accept that and dont blame anyone but myself). So, Ive decided its time to let nature take its course. I think Im just tired of fighting, tired of being tired and sick whilst my doctor seems virtually powerless and perlexed. This isnt living, its existing and its barely that. Like Stevie Smith said, Im not waving but drowning. Really, I cant live like this its crazy. If this is what lifes like, I think its time to find out what else there is.
You never know, I guess I might get better. If so, then wow Ill be grateful. But if not, well, its been a tough ride, but I really think Ive paid for my mistakes, maybe even with interest. I know Im a coward, especially compared to someone like u whos survived for 15 yrs and achieved so much, but theres a point when theres just nothing left and Im there. Dont worry its not going to affect my support network or be a burden coz I dont have one anymore had another pos friend who knew, but he died just over a year ago. So thanks for being there, even tho u never replied to me personally u still helped so much.
Good luck Dr Bob, and goodbye for now if I by any chance do get better, Ill let u know if u like.
Response from Dr. Frascino
What ever happened to "let's get through this together???" I totally understand the sick- and-tired-of-being-sick-and-tired thing, but "letting nature take its course" when "nature" is PCP, a very treatable opportunistic infection, doesn't seem like the best option. Obviously the decision when enough is enough is totally up to each of us individually, and I'm as curious as the next guy about what comes next; however, it seems to me you may be opting out for all the wrong reasons. Let me make a few points perfectly clear so you can add them into your "should I get treated or not" equation:
1. PCP is a very treatable opportunistic infection (even for those with multiple medication allergies).
2. Not getting treated because you are afraid of hospitals makes about as much sense as Dubya's explanation about how things are going so well in Iraq.
3. Do I think you can recover from PCP? Yes, absolutely.
4. Do I think you can very significantly improve your "sick and tired" symptoms? Yes, absolutely. You'll need to work closely with a competent and compassionate HIV specialist. Perhaps you need a second opinion if your current doc "seems powerless and perplexed." Do I need to make a house call???
Penny, I'm also a bit concerned that you lack a support network. Dealing with the challenges of HIV/AIDS alone isn't something anyone should have to cope with. I don't know where you live, but chances are there are a variety of ASOs (AIDS service organizations) that could help get you reconnected. Not only could others be a support for you, but form the intelligent and caring tone of your posts, I'm quite confident you could be a welcomed and effective support for other poz folks as well. Perhaps your ability to support others is your destiny.
Penny, I urge you to reconsider your decision. I don't think you're drowning but rather waving. I'm here waving back, OK?
Keep me posted. I still very much think and would like to get through this together, OK? Once you're on the mend and have your batteries recharged, you can help with my foundation, OK? Are you good at licking envelopes, folding and stuffing letters? Helping to fold and unfold the AIDS Memorial Quilt? Helping to design or maintain our Web site? Pour champagne at our next fundraiser? Pin red ribbons on folks attending our lectures? Pack up unwanted/unused HIV medications for shipment to third world countries? Help me cull through gazillions of questions on this site? See, the "fun" opportunities are endless . . . . I can just about see your smile. Do reconsider getting treated, OK?
A Cautionary tale - please please post
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