Subscribe to this blog's feedHIV is bullshit.
AIDS is bullshit.
Waking up seven times a night to find the smaller and smaller dry spot in the bed is bullshit.
Doing laundry when I feel like crap because I went through SIX sets of sheets in four days is bullshit.
I am tired. And Angry. And beyond that, I often just don't give a damn. I sleep 14 hours a day. I can't keep a clean house. I can barely keep a clean person. My ferrets are so freaking forgiving and understanding, when they see about as much time out of their cage as... well, as I do of mine.
I feel myself moving away from it all. The desire to write. The need to communicate. The urgency for good sex or good food. I have been sick for a long time, and no one seems to figure out whats up. Dry cough lately, with low grade fever and night sweats. Liver enzymes at 470, from a suggested 40. T Cells at 50, percentage at 6.
And I don't seem to care right now.
I was too sick to go pick up my groceries at the food pantry this week, again. And yet three ASO's had the thoughtfulness to send me beautiful holiday cards with convenient envelopes for my donation. One even sent me an invite for a holiday party, at 75 bucks a couple. Yay. I will pencil that in. Bullshit.
By the way, for the uninfected or the asymptomatic, why not stow away that red ribbon and put your time and efforts into the pandemic instead? Fifty bucks is great, if you can donate it to the ASO of your choice... but you know whats better? Finding a friend or a friend of a friend with AIDS (the real AIDS, not the "I take my atripla then go clubbing" AIDS) and doing his laundry or dishes, or vaccuming. Or bring over a movie and a pizza and hang the hell out. Don't call and ask someone with the tiniest shred of pride if s/he "needs anything." That's bullshit. Make a specific suggestion. I bet you dollars to Bactrim that s/he will take you up on almost anything, if you phrase it right.
I just want a clean apartment, and a haircut, and a few decent nights sleep. I just want the ability to enjoy a little of the life I painstakingly arranged around me for just this time. My Playstation hurts my eyes. So does this computer screen. So does reading. I just take baths and listen to soft music and wait until my next doctor's appointment, or to die. Whatever. I gave up on my creditors a long time ago. I actually go out of my way to ONLY answer the phone when I feel remarkably sick, so I can pop the "A" bomb on them and make them reconsider their choice of vocation.
Sorry, this was not my literate best. It would totally suck if my last entries were of this low quality. That would be bullshit.
As a sorry experiment, I swapped out the ferrets' bedding with clean stuff tonight, except for a single pair of old and stinky sweatpants that I have ingrown (not eating frees up your whole wardrobe). I wanted to see if they have forgiven me for being such a sick ass, for not letting them out to play so much, for becoming that guy who constantly reaches into the cage and grabs one or both for prolonged snout kissing.
Within ten minutes, both of them had tried all the bedding, and had settled deep inside the recesses of my sweatpants.
I don't care HOW you interpret it.... having small furry animals choosing to crawl inside your pants is always a compliment.
All the rest?
Bullshit.
Hi Jonatahan,
Through the fog, I will try to give something back here.
Your account brings back memories I didn't want, but do own. I been there and it sucks, 'cause it is total Bullshit.
Love ya man, and this might be something you can relate to and maybe not. Cyberspace is Bullshit. It gives me knowledge as to how you are feeling, doing and coping, but hell, beyond that; it only serves as torture to my emotions. All I want to do is sit down and have some QUALITY TIME with a wonderful man in Atlanta, but instead I am straped to a chair in front of a computer screen. I want you to understand that these keystrokes are given to let you know that one person on the other side of the country is here, caring, wondering, wishing, crying and remembering that one man in Atlanta is hurting and dare I say, in true need.
That is torture! (and in your words; Bullshit)
Love You!
Tim.
Reading this gives me so much pain I hardly know where to begin. Like Moffie, my efforts lie strapped to a computer monitor and would be Bullshit. I won't offend you by doing a "Yay team!" sort of post. Just know that I'm thinking of you.
Rich
If I were in Atlanta...
As it stands I am in a completely different country, sadly. That said, I'm thinking of you. It hurts to know that there is nothing I can do.
Jonathan,
Pardon my language, but fuck worrying about maintaining your "literate best". While I appreciate that desire, I appreciate your unflinching honesty even more. In that, you have never compromised your quality. As far as I am concerned, this entry holds its rightful place among your catalogue as proudly as any other.
~Tim
Thinking of you Jonathan...always.
Love you,
Trish
By chance are you near the airport. If I can get an ATL trip I would love to drop by with pizza, drinks and movie :-)
Jonathan....LOVING your honesty. Been there and still in quite a fix myself. Can't help LOVING a man who can express it! Take care, man! Bruce
Dearest:
I, of the asymptomatic of HIV, have answered your call to do something for the pandemic.
My brother, my efforts have grown to tremendous degree, and I want you to know that I have become the full-blown advocate you hoped for.
I hold you in my heart and thoughts each time I go out in public, for it because of people like you that I exploded out of my shell.
I love you, and I want you to know that I am making a difference.
You are my soul.
Love,
Zephyr
Hey sunshine,
You are right. It can get to be a big load of bullshit.
It can also change.
The night sweats will stop. The skin will become soft and silky again. The sex will return. That cute little boney but of yours will get a little bigger, not too much. Things will get better, not perfect but better. Things aren't allowed to be perfect when the president is named after pubic hair. It just can't.
Just like the winter ice, these things will melt away and just like the spring, you will find yourself in a fantastic, warm sunny day.
Bubba Hugs my little Hobbit!
I'll be sending you happy thoughts, best wishes and winning lottery numbers (hope they work!)
Bubba Pat
I love you JK.
Hi Jonathan,
Just like the icons of blue's music, the most infamous songs - the ones that move us to tears yet give us hope and promise for a better tomorrow - are sung by Artists who have not only been at the top of life but who have experienced the bottom of it as well ... they are the most memorable songs because they are from the heart, from the gut, from the soul, from your very inner core. This entry, WAD, is one of your most powerful. I thank you for being so honest and so brutal; for sharing with us not only the good times, but the not-so-good times. My thoughts and prayers are with you, along with a heaping helping of hugs.
Since being diagnosed over a year ago, I quickly found the blogs and you became my favorite writer from day one! Through your entires, you have supported and encouraged me during my first year travelling this new and foreign road, taught me about the true meaning of life itself, and shown me the importance of injecting some humor into the worst of situations. I print off every entry in your blog and send copies to my family who have started keeping them in a binder. They have learned so much about me, and HIV/AIDS, from you and your writing. My Mom, who passed away suddenly this past August, was your biggest Canadian fan!! Thank you for that, Jonathan.
Let me know when I can drop by with pizza and a movie; and, if you fall asleep with your head in my lap while watching the movie, well that's just great with me, just know that I'll stay until you wake up again, and stay as long as you want/need me to, and if it's ok with you I'd LOVE to give tonnes of attention to Benjamin and Duncan!
It's short notice now, but give it some thought ... maybe next year you'll come and experience a Canadian Christmas with me and my Dad and my siblings?? ... we'd LOVE to have you; and, don't worry, it's not as cold here as they say!
with Love and Respect,
jon
Jonathan,
I love you dearly, and you are always on my mind. I'll talk to you soon.
-D
Jon,
GRR!
Love Always,
TWIJ
Jonathon, i been where you are at, and then some. I know whats in that head when ya get to this point. But i also know giving up is not your style. You are welcome to talk to me anytime you feel the need. You have me on messenger, contact me, and ill give ya my number, vice versa. We are all in this together, whether some of us think so or not. I'm here for ya brother, maybe i cant come there and clean your house. But i sure can help you organize "self" again. I miss you brother....Cochise*
Jon:
What what a beautiful writer you are and what a great discovery this blog is.
I am one of the lucky ones who had whole years like the week(s) you've been having, and then the meds finally started working and I blew a lot of that good fortune and let the crystal meth epidemic completely transplant AIDS epidemic in my experience. {It even sent me to prison, where I started my blog via my sister, who typed up the entries. I am out now for 2 years)
Now I concentrate on staying sober and almost every loss amongst my peers I experience is due to people I know "going out" and O.D.'ing or killing themselves and all my outreach is helping others stay sober.
So thanks for the reminder that HIV can still kick ass and if I was in Atlanta I'd be so happy to be clean your ferret cage or whatever. Instead I'll go out and pick up some trash--and I mean litter.
A New Fan
Marc
Jonathon, I am cryng here, stuck in CT, wanting, as do so many, to come over with food and clean your kitchen while my crockpot stew cooks. I am not HIV pos, just a woman who used to be an HIV counselor and educator at a women's prison, watching women I had come to love struggle with bullshit. When I am well (I've been injured and cannot return to work there)I will be back there, a small thing I can do for them. Like Marc, who sent me here, I am a new fan. Please, please hang in and keep writing:it is important work. Margo
Hey, my friend sent me this link. He tested positive on 8/19/06. As hard as this must of been to write, I applaud you for doing it. I have no idea how to help him, and all the web sites I have been to have been the blah blah bullshit. I thank you for showing not only your personal issues, but it helps those of us affected but not infected, to learn how to cope. I would of never thought of doing something like laundry as a way to help. Not that I am a domestic godess, I am lucky if I do my own laundry. But, still it gives me a new way to think. Thank you.
Connie
WOW!
I thought i was the only person to feel this way. My local ASO SUCKS. I "make to much money" to qualify for ANYTHING but not enough to survive. I have been robbing Peter to pay Paul for at least a year. I had to stop my medications because it was pay the rent and my FUCKING student loans or my medications. If i get behind on my student loans they take away my professional license and I cannot work.
Anyway---you definately have a kindred spirit out there. Maybe through this blog we can come up with some solution.
Why is it that the annual cost of HIV med's is less than $140!!!!
I paid over $6000 for mine and I work in a hospital.
My viral load went from undetectable for 14 years to 500,000 in less than 2 months off the meds.
ARRRRGGGGHHHHHH
sorry----forgot to finish my rant---the annual cost of HIV meds in Africa and other countries is around $140!!!!
Hey Kenneth Cole and GAP---there are people here in AMERICA that need their meds,too. I will not spend one fucking more dollar on any HIV charity.
BLAH!@
I can relate, so much BS I have to swim through it! My biggest problem is my teeth, I get so many infections from bad teeth that put me out of commission and intolerable pain (will cost too much to fix and the price only keeps going up, will cost me about 20 grand just to half ass fix them). I am not aware of any programmes to fix my teeth, even though the bleeding sores let me spread HIV with every kiss (I cannot even kiss my lover).
POZ since the late 80s...
Who wouldn't be pissed and who would not want to say "fuck this shit". Jonathan, it will improve slowly but it will. I have been where you are - stuck in some slow moving hell hole.
HIV/AIDS is "glamorized" in all gay magazines as a "take one pill and it will all be ok". They use photos of smiling hunks but you and I know the real story. I am too on Atripla but I don't go around clubbing or drinking - man the first few weeks on it I had constant diarrhea - pretty huh?
I hope you have people who care about you - around you - use them - sometimes we need to ask for help - put our fuckin' pride to the side and ask. If being HIV + has done anygood, it has weeded out the people who say they are your friends but are really "fair weather" acquaintences - I literally dumped them.
So my dear Jonathan, it sucks big time but you will survive and feel better just like most of us. Be patient with yourself, your meds.
Jonathan,
It's my first time reading your blog. I was drawn by the provocative headline "HIV is bullshit". I didn't expect the raw and real rant you wrote. Wow. I've been asymptomatic for a long time and sometimes I forget that others aren't so lucky. Thanks for the wake up call.
Von
Jonathon:
I wish the world could read your blog. I, too, am sick and tired of the AIDS Walk, Under One Roof in SF, and all of the other feel good charities surounding HIV and AIDS. Where is our commmunity and where are the activist voices that could bring real change to this story and yours? I'm afriad they have already died or have become numb by it all!
You are a strong and brave man and only wish that I have your courage as my disease progresses.
Love ya man!
Michael
Jonathan: I truly don't know what to say.....except that I admire your honesty and your courage....and I wish, as many of the posters here have stated, that there was something we could do for YOU to make YOU feel better....I hope that your friends/family/local HIV/AIDS organization are coming to your assistance, if only to cook a meal or clean your home.....cuz they damn well should be!!!...Is there no service you can access to be provided with meals at no/low cost?...
Its probably little consolation, but be aware you are in our thoughts and prayers, and hopefully you will get through this rough patch very soon....
Hugs,
HammyJ
Vancouver, BC
Hi JK. Thank you for those suggestions on housekeeping, "dinner & a movie", etc. Very tangible stuff - good reminder. Help and TLC will come come your way. You'll get your mojo back ("what Bubba said")
I admire you....I only have 3 little t-cells left and gave up meds about 4 months ago....my time is quickly approaching, and somedays I wish it would hurry up. Your blogs say so much to me....you have helped me more than you could ever know....and we have never said a word to each other....you are a powerful man....I respect you!
Dear Jonathan,
I was really moved by your latest blog. I attend a support group here in Houston every Wednesday and I would like to print it out and read it to the group sometime...with your permission of course. What you say moves me to do the things you suggest; spend time with those who are really sick and try to maek their lives a little better, more enjoyable. And help them with those simple every day chores they cant' always do themselves. I also am handy around the house and can fix minor things and would be willing to lend help in that respect as well. I would like to inspire others at the support group to do this as well. As the saying goes this time of year, "It's better to give than to receive".
Thanks for the inspiration; and if I were where you are, you can bet I would spend time with you. And if just being held by someone who cares and understands would suffice in place of sex, I would not hesitate to do that too. I have been asymptomatic since 1989, on meds since Nov. of 1997.
I wish you the best this Holiday season and hope you have a nice Christmas. Hope you can spend it with someone, even just a good true friend, someone who really cares.
Hugs,
Jay
just wanted to say that I AGREE with you..Im sick and tired..HURRY UP AND FIND A FUCKING CURE ALREADY!! Im sick and tired of hearing how this is a treatable chronic disease...ITS FUCKING HELL!!
Jonathon... We're still here buddy. Thinking of you and hoping for you, some much needed relief. Your words flow through my mind often and I wish I were closer to reach out and do something for you. When I first tested positive I had "8" t-cells and a 750,000+ viral load. I've been ravaged by anorectal lesions, night and day sweats, painful neuropathy, vocal cord paralysis for 9 months, terrible tremors, years of severe sinus infections and damn allergies, insomnia, a blood count of 12 followed by a year of transfusions and self-injections, catching c-difficile while in a week-long coma in the hospital which was induced after a surgeons error. I no longer have any flora left in my colon and I am left with uncontrollable diarrhea and a burning rectum and I now wear diapers for this. And after fighting my way back, through it all, I now have t-cell count of 318+ and undetectable viral load. Many of my symptoms remain but I now have developed pulmonary arterial hypertension which they say is associated with the HIV. So, I've added oxygen 24/7 at home & away. This all began on my birthday 2003. Several days ago I celebrated my 40th. I had wanted to make it monumental. Since being hospitalized on 12/8/03 - I was again hospitalized through 12/8/04 - I was with my mother who fractured her wrist on 12/8/05 - and I was at least not in the hospital but here on 12/8/06 gasping for air. I don't understand what you, Jonathon, as an individual is going through. But if knowing you're not alone in your suffering helps any, you've got it! Take care, man! Bruce
Hey Man
I can't relate, because I am pretty new and do ok on the meds. ButI live in Atl and would be happy to swing by and say Hi.
Thanks for the wake up call. It is Bullshit.
Much warmth and love to you.
Jonathan -- I do not live in Atlanta. I am HIV+ now for a little less than three years, not on meds yet.
I want to thank you for writing this, and poz.com for linking it to/near the top earlier in the week. Literate best? What you wrote is as real as it gets. Yes, it WOULD suck royally for your last entries to be "of low quality" -- but this is actually quite excellent and I hope very fervently that its not among the last.
If you're interested in doing some more cerebral-type gaming (and you have a PC of some sort), let me know. And actually, if you want to talk about anything at all... let me know.
What you said about finding a friend has really got me thinking. Volunteering for some random person... means not so much to me, but you frame helping (a non-random person) in a way that gives meaning.
Keep up the good work.
-- Ken
Not sure if your aware of this but this blog is going all over the net.It has made a HUGE impact people living with HIV or not.
And l AGREE l just want a cure l am sick of living with it.
this is my first time ever to have a comment? ferret!!!! yes i feel you , my cutis is my only friend, and he came from N.C.,,,to me on a air plane, i love him to death but i get so weak i can not play ,yes he has a stroller also, pets love us just for being who we are,...been hiv from 95, iam feeling it, ready to give up!but then i keep hanging in ???WHO WILL CARE FOR MY CURTIS, THE FERRET?? NO ONE, i could go on and on but .........you know, and i feel you,and i love you , try try and have a merry xmas pennie and [curtis]
I will be 44 on 1/16. I was diagnosed with AIDS on Halloween 2006 - nice God's joke....huh? I was in the hospital with PCP, thrush, CD4 count of 24, viral load of over 650,000...tired, worn out,sick as hell, scared, no MD will give me a direct answer until I got pissed and asked - then I was told the lovely truth. I am doing better now, now I caught a cold that my fuckin lovely co-workers gave me...I am starting to feel bad all over again with all the "what if's" questions...the mortality questions, the fear , who will take care of my pug, and all I hear over and over again...it is like diabetes...take a pill and you will be find....what bullshit is that...you are dismissed becuase it is now "manageable"...yeah I am pissed...
sorry just venting...I know you understand....
Hi Jonathan,
I wish I were there to encourage you. Your story truly touches me. I hope you will adhere to your regimen. You seem like a friend I would like to have. Hope to hear from you.
rob