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I just got back from my ID doctor. I made her laugh. Giggle, really. Which, according to my late father, is important in dealing with those who have power over you. Make yourself memorable, make them like you, and they will go the extra mile.
But it appears that the extra mile necessary here is my own. And though she likes me (seriously, who doesn't?) she cannot save me. I am being treated for a MAC infection (which version, she does not know... nor really care) along with a host of other odd things that happens when you are either eighty years old or have AIDS with no discernible T-Cell count. Okay.
So we made a deal. I would take the Reyataz/Norvir/Truvada combo for a month. Deal with the side effects. Treat the MAC with nasty antibiotics. Deal, again, with the side effects. And in return, she will refer me to an orthapedic for my bum shoulder, and work more aggressively about my sexual issues ( no drive, not a lot of function, sort of like having a BetaMax machine in my stereo cabinet).
Thing is, I know this is a good deal. And I intend to honor my part. Don't ask me to promise something.. because I will do my damnedest to follow through. And I did, and I will.
If, in a month, the side effects still suck, she will promote me to a better class of drugs. But as she so eloquently put it, if I screw THOSE up, I am up shit creek. And coming from a people who worship and bathe at the Ganges River, she is uniquely qualified to asertain "shit creek."
At first, I was thrilled at the loss of sexual desire and function. Finally, I thought, freed from the tyranny of lust, I could concentrate on my art, my writing, my creative energy. Sadly, it took me a year and change to realize that all my creative writing, all my real appreciation for and contribution for art, was BASED on that tyranny. Not just lust, but love, primal desire, the attribution and denial of the same.
That's where the muse is, the same fuse that sputters towards the dynamite of destruction is also the ONLY thing that keeps me relevant, in soem tangential way, to the now, the present. So sorry, Ghandi. I need my lust. I need my terrible distraction. I need my cock to work, and my heart to pound. I need my heart to break.
Or else I have nothing to give, nothing to create, nothing to offer. I will NOT write rhapsodic about the past, as though I were some grizzled and greyed poet talking in half-dementia about times long abaandoned. Fuck that.
If this is what it takes to step towards a real life again, I am up for it. Tyranny of lust? That's what we fucking live for. Our hearts, our souls, our fragile gonads. We live to be explosive, contributive, vital members of this planet. And I am too young to abandon that. Not even for an asthetic which has proven false.
Not even for an asthetic that makes doctors comfortable.
I willdo what it takes. And maybe, this year, fall in sick and twisted lust with someone who is as freaky as I know I am.
Maybe this year, I will have the energy to pursue that crazy again. Even knowing the clownshit crazy that most people offer. Even knowing that people, on the vast whole. suck. I am not ready to be dead. Not yet. Not now.
The first step is a single pill. Which, as I type, I take.
Fuck it?
I certainly hope so.
You've jostled some seemingly deadened nerve endings here, Jonathan. Good to read your fresh writing again. Ghandi would surely understand and whisper no apology required. Wishing you as tolerable a regimen as can be had.
Jonathan...I have missed you and your posts and am glad to see you back again. Sorry to hear about all the shitty little things catching up with you. But desire is a powerful tool. It can help each of us to stay at least a couple steps ahead of all the little bugs running around the world. My heart goes out to you and I hope you find other desires to fill those that are missing, at least for now. Happy Hobbit wishes to you...
Happy Easter Jonathan!! :)
GARY U NEED LOT OF EXERCISE A DAY JUST WALKING 10 MILES A DAY TO KEEP UR BODY FIT AND WARD OF INFECTION RATHER THAN CONCENTRATING ON WRITING OR SOCIAL LIFE ISSUES GUYS WITH AIDS NEED TO KEEP THEMSELVES ALIVE BY CONCENTRATING ON HEALTH ISSUES,GREEN JUICE DIET AND REFLOXOLGY LESSONS WITH ICE COMPRESSES ON VARIOUS PARTS TO KEEP GOING GOD BLESS
Thank you for your writing. I really needed to hear that someone else is experiencing some of the same things. Sending lots of positive vibes to you and wishing you well on your journey.
Jonathan, I'm taking Norvir/Truvada/Lexiva combo and your right, the side affects are just driving me nuts. I have been on this med combo since October of 2007 after a three year medication vacation. My sex drive is NULL! VOID! Viagra helps sometimes but most times its worthless. So Muse is the way to go. Guess I will have to approach my ID doc with this matter. I am a very passionate and sexually driven man who needs that vise to keep me sane. I have tried just about every prop and stimulator possible but you might as well call out the National Guard cause the MO-JO just isn't there. I am taking my meds cause thats what keeps me alive. I would rather be alive than die with a engorged penis. Guess we all have to give up something but that Muse sounds like the kicker to me. Have had three MI's in the past and a heart full of hardware but hoping the doc will let me have some. Got to be better than the V..Rich in Illinois
I guess I am a considered a long timer living with AIDS,(15 yrs.) I have been on every med combo out there and presently my regimen is Epivir, Viread, Norvir, Prezista, Isentress and the life saver, Fuzeon. I've had all of the side effects from all of the meds over the years, mostly just feeling like shit, speaking of shit, lots of diarrea but I kept perservering. ( What's your ultimatum? DEAD!!
Six years ago before starting Fuzeon: T's = double digits, V/L = 700,000 +. Today my V/L is undetectable, T's are 470. I'm happy, very happy with these numbers.
What I'm not happy with now is the injection site reactions. Up until roughly the past year, there wasn't a problem. A little prick, (Oh I hate those don't you?) and the injection was done, no pain, basically nothing. Now after six years and the loss of so much body mass, it hurts, hurts "like a bitch in heat". The nodules,(hard lumps) at each injection site used to go away but now they don't so it's becoming one injection right on top of another. It's getting difficult to say the least.
Back in 02 I was asked to speak by Roche Pharmaceuticals, makers of Fuzeon, to
several groups of people who where running out of options as I had and tell them my experiences with Fuzeon. It went well, but while I had these doctors, pharmaceutical reps and researchers on stage, I asked if there would be an oral type Fuzeon treatment anywhere down the road and was assured it was in the making and should be available in about two years. OK, 02 + 2 = 04 maybe even leaning into 05.
Where in the hell is it....HELLO it's 08.
And as for a sex drive, no wait, the drive is there, but the vehicle has a dead battery. It's very frustrating especially when I have a partner of many years and he's ready if I just look at him. Anyway, that's a whole different story.
Thank-you for allowing me to use this space and if anyone has any positive words or info, I'd love to hear it.
Blessings Johnathan and to all.
Never regret anything
that makes you happy.
Life's too short so
have a wonderful
Journey!!
Androgel 1% applied every day does wonders for the sex drive. Vit B12 also helps toward the well being. Has your testosterone level and B12 level been checked?
I would agree with "sg" above: has your testosterone (T) level been checked?
I'm 41. I, too, am on Truvada/Reyataz/Norvir (along with Crestor, Paxil, Ativan, MS-Contin, Neurontin...). Who knows what suppresses my T level, but my lowest measurements was 66; normal is 320-864 ng/dL. After using the Androderm patch for a few months, it came up to 241. And I can feel the difference -- both in my performance, and libido.
There are gel and patch versions of testosterone, and frankly it's a toss up which is less of a hassle (the gel stinks to begin with and that odor lingers on you, but the patches don't like to stay on and leave adhesive marks). It also comes as an injection. Unfortunately, all are controlled substances.
And you're right, one shouldn't underestimate the importantance of human sexuality. At first I thought, "So what, I'm infectious, who cares whether I ever do it again?" But that was the wrong attitude to take. Even though I'm not sleeping around, the motivation is an added part of life that keeps me going just that little bit more.
My friend had MAC... he treated it successfully, so keep your chin up
Jonathan, you are so right about lust/desire being a driving force of motivation, art and relationship. All power to you in reclaiming your muse.
Tony