Subscribe to this blog's feedIn the last month and a half or so, I started a regimen of antivirals I would seriously not recommend, nor am truly eager to discuss. It’s not something I am taking for the long haul. I am taking them to avoid dying this year. Next year holds no promises, not even for the truly adherent. But I am taking my meds again, and even my friends who never mention my health have remarked at how much better I seem. I look better, I act more energetic, I require less sleep, and I have (in the words of darling British Debra) seriously “chunked out.” When you become pregnant someday, Debra, rest assured I shall return the compliment ☺
But one thing I have noticed (aside from the fact that my pants don’t fit) is that I have acquired a case of acne the likes of which I have not had since, well, ever. Not a rash, I don’t think, because it’s mainly in the traditional oily parts. Face, neck, shoulders. But yeah, I will be mentioning it to my doctor next week, after I get back from the zoo where they weigh the Hippos.
It’s cool, these dramatic differences. And I really am serious about the dramatic part. Before the meds I had a dullness to my thoughts (many people mistook it for depression. It was just apathy, disconnect,) a constant ringing in my ears, nightly exhausting sweats and fevers, and an overall lethargy of body and spirit. Stuff didn’t seem to matter. And it wasn’t my brain, my soul that was on the verge of giving up. It was the body. I had lost thirty pounds, looked gaunt and drawn, and even for me, pale.
Recovering from PCP was a great first start. But the real jump start came when I restarted a regimen that has caused the least intrusive side (unwanted) effects thus far. I am on Reyataz, Norvir, Viread, and AZ – the fuck- T. Seems that the AZT will be with me for a while, and it’s ALWAYS given me nastiness. I have been on it in every regimen since 1994. And thought he dose has gone down, the effects are unmistakable. But I felt I was starting to die, and was not ready for that yet. I have many more people to annoy, and pets to fondle, and cool-ass dinners with dry ice in the drink glasses to make.
So I decided to forego, for a change, the binary attitude towards meds. Either with em or agin’ em. Either completely adherent or don’t bother. Screw that. I decided I was willing to be sick for three or four days a week, and demanded to be healthy-ish for the remaining three or four days. That to me was and is a compromise I could make. So I did, and I am.
I have not gotten my numbers back yet. But I know they will be better. I know at least that my viral load is down. I know because I ONLY get night sweats now when I forego my regimen for a few extra days. I am holding my virus back, barely, with a whip and chain, with one hand tied behind my back. And I am wrapped in a bloody shirt from Roy Horn. It’s not a perfect solution. It’s mine. It’s three days a week bed and bathroom-ridden instead of seven. It’s three or four days of physical activity without the pounding AZT headache and the “am I about to puke or not” feeling, instead of seven. It’s saving me a bundle in toilet paper. And it’s giving me windows of activity, just enough to make me crave it. Make me take the nasty nasty pills and deal, when I have to, in order for it’s reward.
And I have zits again.
My immune system, so long distracted by the fundamentals of breathing, keeping weight on, throwing futile fevers at a rampaging virus, and forfeiting sleep, is FINALLY working it’s way down the list. The list that starts with “don’t die” and ends with “heal that paper cut.” I am down to “recognize acne.” I have no idea how FAR down the list of priorities that is, but it’s awfully far down, I imagine.
I know people will say that I am creating resistant strains. And mayhaps I am. My last genotype showed predominant wild strain. And when that’s beaten down, the emerging resistant strain might indeed take hold. But for the moment, I am doing the right thing for me. I am staying alive right now. And giving myself the chance to feel better, right now. And I am not merely enduring the unending side effects (and please believe me, having been on more regimen than I can count, I know my body… those things do not mix well with my chemistry, at all, ever). I am getting the fire back. I am getting angry about injustice, and I am feeling like I want to do something about it.
I’m starting to wan tto cause some trouble again. Not feeling like a patient, or a person with AIDS. I am becoming a person again. My brain is more alert than ever. My desires are back, from good food to sex to romance to getting out in the world. In the past, when when I WAS adherent to a drug regimen, I felt so rotten that I resented it. Sure, I required less sleep. But the downside was that I found myself depressingly awake during periods of time when I felt like total crap. Total crap should at least be slept through, if not remedied.
This regimen, mine alone, has allowed me that. I do not recommend it to anyone else. And in a year, I might be dead.
But I am not dead today. I am not sick this weekend. And I could not say the same about most weekends for the past year. Today I am energized. Today I have aspirations, if not outright hope. Today I am alive. And today really does count.
Now if you will excuse me, I have to pop some zits.
This is good news...this is really good! I hope you get a lot more days that count. I hope that for me too.
Bravo Jonathan. :)
Jonathan,
"I’m starting to want to cause some trouble again. Not feeling like a patient, or a person with AIDS. I am becoming a person again. My brain is more alert than ever. My desires are back, from good food to sex to romance to getting out in the world."
This is indeed good news as is the general feeling of revitalization and being alive....sorry to hear about the chunky remark....someone needs to be punished severely for that one - I do understand she fears heights actually
I am glad to hear that you feel physically stronger than you have in a while.
TIGER, tiger, burning bright
In the forests of the night,
What immortal hand or eye
Could frame thy fearful symmetry?
In what distant deeps or skies
Burnt the fire of thine eyes?
On what wings dare he aspire?
What the hand dare seize the fire?
And what shoulder and what art
Could twist the sinews of thy heart?
And when thy heart began to beat,
What dread hand and what dread feet?
What the hammer? what the chain?
In what furnace was thy brain?
What the anvil? What dread grasp
Dare its deadly terrors clasp?
When the stars threw down their spears,
And water'd heaven with their tears,
Did He smile His work to see?
Did He who made the lamb make thee?
Tiger, tiger, burning bright
In the forests of the night,
What immortal hand or eye
Dare frame thy fearful symmetry
Oh there you are, you cheeky monkey! (or should I be calling you chunky monkey now?) I was beginning to think my visit had finally done you in! :-P
Having just spent 2+ weeks with him, I can vouch 100% that Jonathan has indeed got tons more energy than when I last visited in March and he has indeed chunked out...in a Good Way, baby boy...so stop fretting! ---rolls eyes---
Thanks for being the hostess with the mostess, Mr JK. And thanks for just being you. You is just too cool for skool. :-)
Happy zit-popping. But eww! Glad I got out of the firing range when I did!
Miss you madly though...
Love and hugs to you, my sweet sweet friend.
Tickles and snogs to the furries.
Debra xxx
PS: That WAS one very cool-ass dinner on our last night. I was a dry-ice virgin till that night, ya know? ;-)
your acne or skin problems is caused by kidneys not functioning very well probably pain in joints to easy solution would be drinking fresh green juices like cucumber,parsley 2 or 3 glasses a day.chronic fevers is liver not functioning properly just drink water 1 litre early in morning empty stomach and jamun vinegar on empty stomach ban tea coffee,meat intake and salt spices diet too.just loaf of breads with green juices or fesh fruit juices should be your daily diet .god bless for optimum health
to take care of night sweats caused by impurities in blood chew 10 raw neem tree leaves every day should purify the blood natural therapies r non toxic ways to remedy a symptom
Jonathan
I live in Atlanta wanted to know if you needed any help doing anything. I have always wanted to volunteer and think that this could be a good time too. If you need anything at all, a friend to talk to, help in the house, or just someone to lean on, drop me an email and i would love to help out.
Kyle
g8rguy0502@hotmail.com
Jonathan,
you know what is best for your body and soul. I think all HIV doctors should have to take a round of our medicines for a week - so they could better understand the quality of life to which they are sentencing us. you have to feed your spirit in order to want to stay alive. I also have harsh side effects to my medicines ans a low T-cell count. I failed horribly on structured breaks. I have a great doctor here in San Francisco. since i seem to get all the bad side effects - we put aside all my secondary HIV meds such as Zovirax and Septra. This has really helped. On a minimum of Viread, Epzicom and other medicine with few side effects - i have manage to keep my viral load undetectable for 3 years. I still feel like shit every morning but once i get to the afternoon - i feel just ok. shelving several of the prophylactic medicines has really eased my side effects and allowed me to have 8 good hours a day. like you i also give myself weekends off when i feel like it - or the odd day of when i have some i want to do - after all i am taking these medicines to live - what is the point if i feel to sick from side effects to get any of the"living" done. my doctor is aware of how i am managing my treatment. I don not believe in total adherence. i don't believ my virus is going to break down the walls and party out of bounds on the few days i take time off. i feel better and i feel like eating - so i am nurturing my body in a way that would be impossible if i were a slave to a huge regimen of poisons. i believe that we who have been on medicine for more than 10 years know when our internal organs are exhausted from all the chemicals. you have to give your body a break before it breaks down. Bravo to you and enjoy each day - i am happy you have regained your fighting spirit.
daniel
J: I have been on meds for twenty- three years now for HIV (applause here)---up and down she goes, bud--and when she stops nobody knows! But, you are here, you are alive and you have feelings you can express...nice, very nice. Jay
I AM HIV POSITIVE BUT HAVE NOT BEEN SICK. I AM NOT INTO ANY DRUGS AND I AM NOT EVEN DEPRESSED. i AM JUST TAKING EVERY DAY AS IT COMES. THIS IS NOT THE END OF THE WORLD. THIS IS JUST ABOUT SOMETHING LIVING IN OUR BODIES. WE MUST JUST ACCEPT AND MOVE ON. WHO SAYS IF YOU HAVE AIDS OR HIV POSITIVE YOU ARE GOING TO DIE. WE CAN, AND WE WILL OUTLIVE ALL THIS PEOPLE LIVING WITHOUT IT. SO LET US CELEBRATE OUR LIVES. ONE THING IT HAS TEACH ME, IS THAT I KNOW I CAN TAKE CARE OF MYSELF BETTER THAN WHEN I WAS NEGATIVE. SO TO HIV/AIDS I SAY THANK YOU, YOU HAVE DISCIPLINE ME. HELP ME TO PUT MY PRIORITIES RIGHT. KNOW WHAT IS IMPORTANT.NO MORE RECKLESS LIVING.
HOORAY JONO!
This is truly AWESOME news & VERY GOOD reason to celebrate & GIVE THANKS to the Universe!
In order to drink less water without losing the same benefits, maybe search PRILL BEADS on Google ... eBay's the cheapest though.
I'm totally hooked on mine ... even if it is all in the mind! :) Oh! & you can paste whatever messages/pictures suit your fancy to the outside of the glass water jar to energize/imprint your water with these too!
See Dr. Emoto's website for more amazing info:
https://www.hado.net/watercrystals/index.php
For zits ... maybe try some tea tree oil and/or 3% H202. See earthclinic.com
Love, light & abundant blessings,
@nnie / Durban
Great job of taking the high ground. I have gone through the PCP routine. I got so mad with the AZT craze in August 2006 that I stopped taking Combivir and Sustiva. I figured the AZT was killing me.
In 2002 when I contracted PCP, my CD4 count was 14 and the viral load 150,000, and I almost died. From August to December 2006, during my little experiment, the viral load jumped to 750,000 and the CD4 dropped to the low twenties, but I did not have to be hospitalized, just an occasional weakness. When I spoke to my nurse, the same one who asked if I had my will ready five years previous, she appeared to be concerned. I spoke with the physician; told him the problem with Combivir and Sustiva, and he put me on another regimen. I have been doing fine since.
Until I read some of the depressing posts on this forum, I seldomly regard myself as being an A.I.D.S. patient. My life activities exceed my pre-diagnosis level. I feel fine most of the time. Words have power, and the words that I speak are positive one: thoughts that I think are positive ones. Consequently, my life has been a positive endeavor.
I see that you have begun to travel this road. Good job. Don't allow anyone or anything to steal your joy! Sometimes, we just have to take the goat by the horns and see what happens.
THINK POSITIVE ABOUT HIV/A.I.D.S.
I'm intrigued and disturbed by your blog entries......I dont know your story in full, and in the past have found you funny,and even inspiring...but....i pop my pills every day without a single side effect...i have never puked or even had the runs...your story sounds like things that happened 10 or 15 years ago!...i'm not being judgemental, i'm just curious. I guess your lesson is to adhere to your regimen no matter what......
Glenn,
I am even more curious about you! I'm amazed that JK's story sounds so "10-15 years ago" to you.
Not one single side effect for you, eh? You are the exception, not the rule.
Is there such a thing as a comments section hijack? If so, apologies JK. That just grabbed my attention. Holy cow- I wish I could say that about no side effects.
Anyways, congratulations on a continued upwardd climb, JK.
TH
matty dear these natural therpaies even proposed by south african health president like beet root ,garlic r not complete nonsense aids is a collection of disease attacking person all at once.these disease have natural approaches rather than english medicine holding phenomenal value.natural approaches r non toxic,therapies like reflexology,sujok,yoga,acupuncture.massage,nutrition,ayurveda,green juicing,exercise,unanimeds.homeopathy can be combined with english meds for longer life these therapies can reduce dosage of english medicine and cosequently fewer side effects.all these therapies are encyclopedia in themselves
I'm an HIV doc and patient who picked it up when I was about 30, got the test when I was 33, and am now 55. (Old enought to order from the senior menu at Denny's) If you don't like AZT but are having success with an undetectable viral load, one idea may be to take Truvada daily insead of viread, and then reduce your AZT to one pill every one or two days. I know this approach may raise some eyebrows, but it worked for me. Otherwise for me, AZT twice a day does me in too. Best wishes for continuing to do well with AIDS. I plan to be around until I'm at least 87. Joy and Light, Neal
Well all I can say God bless you and to think that I was the only one who was doing the fighting,well bro. if I make it to feb.2008 then it will be 21years and no med.t-c count above 585.