Jonathan's POZ Blog

Jonathan, your writing is always so honest -- thank you for that. The VL worries me, and I hope you'll find a regimen in the near future that you can tolerate.

The Merck Integrase Inhibitor is looking extremely good -- very potent, with few if any toxicities. It's on Expanded Access right now. I'd skip the entry inhibitors for now, and look at Merck's drug.

Are you resistant to all current drugs & classes? The Merck drug is so potent that you might only need to take a single 2nd drug from another class to get your VL under control, as long as you weren't resistant to that 2nd drug.

Thanks again for the moving post!

Hi Jonathan,

So glad to see your post, and yet, not so much.

It hurts me to see you struggling, but yet, I see you are also strong and really taking a level headed approach.

This sickness is such a bitch, and when you are feeling well and life is all peachy keen; it is often times so very difficult to relate to our HIV bretheren who are currently not doing so well. Then you come along and give us a Technicolor account of just one of those times, and then it all comes rushing back again in our memories and hearts.

I trust you are doing better each day, and I thank you once again for giving us a peek into the life of our dear friend, Jonathan.

Love and miss you so very much,
Tim...

You inspire me...thank you.

You remain one of my favorite writers, ever, period.

Dear Jonathan, you're last entry was one of the most hones pieces of writing that i have read in a long time. You're beautiful, and there is lots of love for you.
In peace, Brian

I think of you often, and worry about you more. I am heartened to see you trying to claw your way out of this setback. Take care. I love you.
Lisa

Jonathan: your words just blow me away. i feel like i know you by way of your intense writing. i am sorry that you are going through another battle with mr. big. i am just bouncing back myself. i went through cancer treatment (radiation / chemo)& it killed my cancer cells as well as all my good ones including the cd4's. i started the clinical trial TMC 125 and my cd4's went from 60 to 220 in 4 weeks. i cant wait to get the next results. i am still very weak from the radiation so I empathize with you in many ways. I just got off the pain patch & now i am going through withdrawals. havent slept in a week, fun!
i was having a pity party last sunday when i walked past a person that i briefly dated and saw that he could barely walk & was using a cane. well, i snapped out of it real quick. what gets me through the dark days is "i am greater than my circumstances". whenever someone asks me how i am, no matter how i am feeling, that is my answer. everytime i say it, it makes me a little stronger & gives me more hope. another montra of mine is "my circumstances (or disease)doesnt define who i am. i envy you--that no matter how fatigued you feel, you talk about dating. i am experiencing lymphedema which is swelling & liquid depositing in my penis & testicles because the lymphs in the groin were damaged from the radiation. makes it a little difficult to have sex. havent had that in over a year. why am i telling you this? so you can see that it could always be worse.i hope you feel better.trust in the higher power that has gotten you through everything else.
Love & Blessings,
Robert

Hey Jonathan. I take it you live in Atlanta? I lived there for 10 years. I might still be there if I had known any people as real as you are. You give me hope about Atlanta, which I abandoned and came back to "real" Alabama. Maybe I should give the ATL another chance. Sam

Jonathan, I am really touched by your writing. Thank you for making me feel less alone. Roger

Hi Jonathan, Just recently I have been having a stir up in health and have been diagnosed almost 2 years ago. Here I am, afraid every night of what might be in the future for me.
As I read your blog, I too think the same things as you. And I find comfort to know that I am not the only one out there with those same feelings of being overwhelmed and such. I thank you for sharing what is so personal in one's life. Thank you.

Hey Jonathan, I just thought I'd chime in here and mention that we share more than just a name (and a darn fine one, at that). I was diagnosed this past March, with my CD4 at 159 and a viral load somewhere beyond measurable (my ID specialist said something like 2-3 million). I also was diagnosed with seven AIDS defining illnesses. All this after losing more than 30% of my body weight in less than 3 months (and I was in quite fine shape for a 26 yr old man beforehand, too), suffering from undetectable crippling sicknesses and multiple mis-diagnoses, and 4 ELISA tests came back negative in that time to boot.

Once we got a confirmation via a more accurate Western Blot (which was misplaced by the lab, to boot) it all made sense...PCP Pneumonia was the biggest one, I couldn't walk up a flight of stairs without resting, and I must scale four small flights to get to my apartment door. Add another three short sets of stairs inside to get to bed and you see how bothersome that could be. I seriously questioned whether I would see my birthday in August, and was preparing myself for the worst. I know all too well how unwell you may feel, and as much as a total stranger can sympathize with you I do.

I write not to compare notes, but to provide encouragement in regards to medication. Like you, I've never been able to take prescription medication on a regular schedule, to turn a phrase, to save my life. Now it's my only choice if I wish to stay alive. Either I pop one Atripla before bed (it used to be Sustiva & Truvada - odd how combining two pills into one takes some strain off of your daily routine) and that's what keeps my infection at bay. It's an awkward feeling, being dependent upon a large pink pill to almost guarantee I'll continue being a part of this world for some time longer. It's one that I've grown accustomed to, like so many other changes in my life. The friends who disappeared and won't call back. The unspoken pity that near strangers give me when they learn that I'm positive (I don't hide my status except at work, and that's more a joint decision with my managers than anything). The feeling that I'm 'damaged goods' for all eternity. But really, isn't it our imperfections that make us who we are?

I've found that I have been awakened to my own existence, that my priorities have been drastically and positively changed (isn't 'positive' a fun word to slip into conversation now and again, double-meaning and all?), that even though my lease on life has likely been drastically shortened I feel my life now has so much more meaning to me. And I'm told by a number of experts that this is actually quite a common experience for people like us. It sometimes takes a severe cage-rattling to wake us up to where we are, as Benjamin and the others likely know from their strolls with you. And at the risk of sounding perverse, this infection has forced me to make my life better as a result.

About three weeks after starting my HIV medication (in conjunction with my pneumonia meds and a slew of antibiotics and those foul-tasting chalky tablets for thrush) I went from crippling lethargy and fever-inspired-delerium caused by the toxic remnants of my blood cells left in the wake of the viral reproductive process to eagerly bounding up the stairs simply because I could.

THREE WEEKS.

Ecstatically amazed doesn't seem to cover how I felt, but I can't think of any other description that comes close.

And it's not just the physical unwellness that waned, but also the emotional. I went from wondering what the purpose in fighting this microscopic hellion off for an existence highly-dependent upon modern biochemistry to grinning like the Cheshire Cat just to feel the April sunshine on my face another day. And you know what? I've only missed one dose so far, and that's because I left the backpack containing my meds in the back of a friend's car who simply wasn't answering his phone that night (for a while my little savior pills HAD to go everywhere with me). I've since learned to keep multiple stashes on regular rotation so that I am never left stranded sans-medication again. I don't plan on repeating that night of fitful insomnia, scared that missing a dose this early on could let a dreaded mutation take hold and return me to the prison that is being so unwell.

If you have the choice and the means I would highly recommend getting yourself onto a schedule as soon as you can (at least, based on what I have read). Get a second or third opinion if you must regarding which schedule you and your doctor select, but we cannot let fear of the unknown possibilities and complexities of these miracle drugs be as much a jail keeper as the untreated infection has proven to be. One pill before bed seems to be a windfall of a tradeoff for being a healthy, well-spirited survivor.

There's hope for all of us, not just in medication. Even I, being 'perpetually single by circumstance,' have fallen for someone and all signs point to a decent, healthy, and I dare say stable relationship. It does help that he's poz as well (there's so much less I have to explain or worry about), but there's no need to limit oneself in matters as mystical as love.

As my doctor said to me on my first check-up after my diagnosis, "It's all up to you, now."

jonathan,
Bummer. I hope you find some way to get yourself out of this black hole you are in. If you haven't tried it, and even if you dont feel up to it,please go for a walk tomorrow.
I know where you are coming from cause I have had long periods of feeling the same way. Fuck everything. It takes time to get into this state and it usually takes longer to get out of it.
I have had a bad history on hiv meds and for the first time in my 18 years I am on a regimen that doesnt make me sick and feel like shit all day,everyday. I have also been undetectable for the first time ever. Prezista,norvir,and truvada. I hope you are able to find something that works.
Dont give up,please dont give up.
Tomorrow is a new day and it might be the day that everything turns around. Jack

I love you. Read a book recently that has helped me some: Man's Search for Meaning by Victor Frankl. He was a prisoner of a Nazi War Camp. As he was imprissoned he became very enlightened about how the others gave up their survival. He learned that the one thing they couldn't take away from him was his power to think and believe in life. It was very powerful me.

I hate it when people offer me advice like this though too. I usually get pissed and tell them to go fuck off. It's bullshit.

I'd be happy to send you a copy of the book though babe.

love you

hi j* im j from texas. i read 2 of ur blogs while listenig to barbra streisand and celine dion on my player. not intentionally but thats where it fell.

the feeling was very sad, scarry, hopelessness. and i felt the same way few months ago.i got some infections.etc. almost died. but i see the light now. i didnt see it when i was going trhough the maddness of the medds and depression. but now i see i want to live and do those things i didnt get to do yet. so just remmeber those thing. and pick ur self up. besides after wht we have gone through theirs only bette news. oh and GOD he helps alot. Jesus luvs you. and dont loos faith. he will do with us wht he wants, to give us the lesson that hes great and gives us bigger streignt and faith in him that we might be lacking. ur pets need u and poz. mag. need u tokeep writting wht i felt and went through. so newly diagnozed knw weR not the only ONEs. thanks..luv javi

YOU ARE A AWESOME PERSON ...I DONT KNOW U BUT ME AND U THINK ALOT ALIKE.......LOVE YA STAY COOL

Your writing allows me to remember all that which true sickness is....my body feeling so hot that i may set the bedding on fire and yet moments later so intensely cold that i'm sure some bastard has turned the a/c on and also opened every window in the house in the middle of the fuckin winter...the fatigue so pleasant that it enables you to instantly fall into a deep slumber within seconds yet so unsettling that you feel that shitting your bedclothes makes more sense than finding a better recepticle for doing so.....and so on and on.

My concern for you though is that when you get a chance that you'll find that special person in your life....may just be a really good friend....who can be there for you next time....as there's nothing lonelier than being truly truly ill and having no nice face to talk to...to complain to....to hold hands with....and ultimately, to have solace offered through with such a person.

Your words make me care for you....so don't let me down and find yourself that special person. My hands are free at the moment.

Hi,
You're talking about me. I'm the one who takes the meds and goes out to the clubs, unsymptomatic. I don't have as many physical problems as you but I am constantly scared. A rash, sore throat, a lump or what is happening inside me? I have told NOBODY...friends or family. This is the first time in two years that I have even written about it. I work but the Sustiva keeps me awake most of the night and I'm tired. Everyone knows me as smiling and personable, but as soon as I'm home and lock the door, I sit down and cry. I got this when a condom slipped, so for 2 years I have refused to be close to anyone sexually. I'm young and pretty nice looking but I have to be constantly on guard not to let anyone get too close. My family and friends wonder why. They know something's wrong. Yes, I don't have any physical symptoms YET, unless you count constant fear and depression, but it's only a matter of time. I'll read some more of these comments on POZ. Maybe I won't feel so alone and scared

My eyes glaze and the swelling tries to hold back the flood of tears - unsuccessful. I live in your reality though Im miles away I touch your pain. Your darkness gives my fear life and its life brings our death. Hold on - they say tomorrow is better. Better than what? Today? Great...