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Author Topic: Ignition...  (Read 5644 times)

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Offline renevatio

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Ignition...
« on: August 27, 2009, 09:59:57 PM »
Hello all.

I was 1st diagnosed about a month ago.  I am still reeling some, but my keel has stabilized a good bit since the initial jolt.  I was, and still am, shocked at this new bit of information, and am still processing much.  I am now working on trying to break it into small enough bites so that I might not choke on the enormity of the paradigm shift I am now facing, if swallowed whole.

I have been fortunate enough to be accepted into a program that covers all my doctor’s visits and lab work and, if need be, medication.  I have my first meeting with the HIV doc in about 2 weeks.  I am apprehensive, yet looking forward to knowing exactly where I presently stand.  I have been a pescatarian for over 2.5 years, and have been physically active for most of my adult life, so I am hoping good things are in the numbers....although I did drink heavily for the previous 1.5 years...and engaged in a bit of a party lifestyle.  Not the partying that most here might automatically think about, but more like Burning Man type events, underground music warehouse parties until dawn, camp-out events with multiple stages, and afternoon park celebrations, with DJ systems and such.  There was a good bit of substance use, though none of what some identify as "hard" stuff...i.e. no needles.  Though, of course, none of them were all that good for me.

I have already cut most of that community out of my life, and have focused on getting healthy.  I returned to the gym a few weeks back.  I have started a regimen of bitter melon, cat’s claw, and am awaiting my SPV-30, in the hopes of keeping off of the antiviral meds for as long as possible.  I have set a goal of quitting drinking completely by Jan. 1.

And, I have started the process of selling everything and moving to Hawaii.

Now before anyone chastises me for knee-jerk decisions, keep in mind that I had talked about moving there for a good while, and have enjoyed every moment of every trip I have ever taken there.  I feel more at peace, more connected, there, than anywhere else I have been.  I have little holding me here, honestly.   So this new news has helped me make that decision.  To go, and make my life the way I wish it to be.


I still fight the early morning blues when I first awaken, and realize that my world will never be the way I had planned.  I still have the myriad questions reverberating through my skull...questions that will never have definitive answers, I suppose.  I still am amazed that such a situation is a part of my reality, after all the facts are considered.


But it is what it is, eh?


I just wanted to introduce myself, and say “hi”.  I have a feeling I will be here a good bit in the coming months and years.  I have, in the past, found such support and solace from a similar board about 5 years back...albeit regarding a tragedy completely unrelated to this.  It provided me with such hope and so much good information that I was able to not only survive the crisis, but eventually thrive.  I hope this once again will be the case.  I think it might.


Anyhow, I look forward to interacting with y’all (yes, I am from TX, gimme a break) and learning and contributing as I am able.



~R~
« Last Edit: August 28, 2009, 12:29:38 AM by renevatio »
"Don't ask yourself what the world needs.
Ask yourself what makes you come alive, and then go and do that.
Because what the world needs is people who have come alive."

-Dr. Harold Thurman

Offline boneil

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Re: Ignition...
« Reply #1 on: August 29, 2009, 03:19:15 PM »
R-

Bite size pieces in the only way to go.  I found on just earlier this month and I was overwhelmed the first week or so.  There is so many feelings to process through (mainly sadness) and so many questions in my mind around disclosure, health, current and future relationships, sex, insurance/work impact, etc.
I have found that the first thing to concentrate on is your health.  Get your bloodwork done and know where you stand from a numbers perspective and make a plan to tackle other health issues.  Also make sure you have someone to talk to or visit here often and read read read the threads... They are very helpful.

That's about as far as I've gotten - still figuring what to tackle next  :)
07/05/09  Infected
07/25/09  ARS symptoms
08/05/09  ELISA+, WB indeterminate
08/10/09  cd4 480 31% vl 18579
09/24/09  cd4 633 33% vl 764
12/21/09  cd4 611 37% vl 1211
04/05/10  cd4 610 29% vl 2661
07/19/10  cd4 615 30% vl 8875
12/06/10  cd4 686 31% vl 29204
03/28/11  cd4 718 29% vl 32868
06/27/11 waiting
07/01/11 started Truvada/Isentress

Offline mecch

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Re: Ignition...
« Reply #2 on: August 29, 2009, 03:34:16 PM »
although I did drink heavily for the previous 1.5 years...and engaged in a bit of a party lifestyle.  Not the partying that most here might automatically think about, but more like Burning Man type events, underground music warehouse parties until dawn, camp-out events with multiple stages, and afternoon park celebrations, with DJ systems and such.  There was a good bit of substance use, though none of what some identify as "hard" stuff...i.e. no needles.  Though, of course, none of them were all that good for me.
~R~

Sorry to hear about your diagnosis.  Good that you are taking so many active steps about your future.

Now, what is your quote supposed to mean.  "Most here..."?  So join this community, cool, and see that there is no "most" here. Its quite diverse here.

And partying is partying, drugs are drugs. 

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline renevatio

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Re: Ignition...
« Reply #3 on: August 29, 2009, 05:00:37 PM »
Sorry to hear about your diagnosis.  Good that you are taking so many active steps about your future.

Now, what is your quote supposed to mean.  "Most here..."?  So join this community, cool, and see that there is no "most" here. Its quite diverse here.

And partying is partying, drugs are drugs. 



That's where you and I would disagree.  Drugs are not drugs, IMHO.  To lump all substance use into one massive group and label them, en masse, "drugs" - and therefore, "bad" is (again IMHO) oversimplifying things immensely...and throwing the baby out with the bathwater.

There are plenty of FDA approved substances that are far more addictive and abused than some of the scheduled substances.  There are schedule I substances that, when used properly by an experienced professional, can cure lifelong addictions in record time.  There are healing plant compounds that can do years of therapy in mere hours.  There are proper ways to address substances, and there are way to abuse them.  I have done both, mind you.

And when I said "most" - was trying to be a bit obtuse about naming substances.  But if you would like me to be more direct, then I will.  I was suggesting that Crystal Methamphetamine is usually the first thing one thinks of when people speak of "partying" - and I wanted to suggest that it wasn't the one in which I had been deeply involved.  I cannot say that I haven't used it, only that I am already a bit intense and naturally speedy...and it only made me crazy.


I don't want to get this thread way off track into a debate between substances and legalities and morality and such...for all too often tempers flare and nothing is ever solved.  Let me put it this way: every person has a context that they have formed from their direct or indirect experience with substances...which they have shaped into an viewpoint over time.  Their experiences will vary vastly from mine, and mine from the next guy.  And to attempt to have an objective conversation about such a topic approaches the impossible, due to the bias from such life-experience.  Maybe I would agree to talk about individual substances...but even those aren't constant.  I know a number of people who have no problems with a particular substance, while his friend will lose himself completely in its use, and fights addiction to it every day.  So the substance is a personal issue.  And moreover a psychological one.

Sorry to get on a riff, but this is something I know quite a bit about...and one about which I feel strongly, if you didn't notice. :)

There are some great things that could have come from developing applications for certain "drugs" that were cast aside due to rampant and disrespectful, well, abuse.  The substance could, and still can, heal when applied properly by a student of such things...but now, at least in this country, they are no longer options.  (They are making a touch of headway into getting government approved studies for some applications, but these things take time.  Google M.A.P.S. for more information if you want to read about some of the studies.)


One more thing.  I am, at least for now, putting all substance use aside.  But that is not because I think all substance use is inherently "bad".  It is a personal decision for this juncture in my life, and something I felt I needed to do.  Nothing more.  Every person's walk will be different.


Pardon me for the diatribe.  Brevity was never one of my strengths.  :)



~R~

"Don't ask yourself what the world needs.
Ask yourself what makes you come alive, and then go and do that.
Because what the world needs is people who have come alive."

-Dr. Harold Thurman

Offline sdguyloveslife

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  • Posts: 134
Re: Ignition...
« Reply #4 on: August 29, 2009, 07:28:43 PM »
Renevatio,

I've been following your posts and just wanted to note that you crack me up!  I don't know if it's intentional, and maybe it's just the difference between the spoken vs. written word, but the way you write is very pompous "sounding" - like you're better than others somehow, or "above the fray."  ???   

C'mon down a few notches and hang with the rest of us.  It's ok, we don't bite - we just got HIV.   

Oh yeah, that's right, so do you!  :D 

Richard

 


Do not condemn the judgment of another because it differs from your own. You may both be wrong.

Offline renevatio

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Re: Ignition...
« Reply #5 on: August 29, 2009, 09:48:15 PM »
:)


I do have a certain tone to my writing style.

But, give or take, I speak in much the same way.  You'll get used to it, I hope.

It is not meant to be pompous or condescending.  If I sound that way to any here, please understand that is not my intent.  I am a writer of sorts, although a rank amateur.  I have never been published, nor sought it out...yet.  There's a book lurking somewhere behind my eyes, I can feel it.   :o

The other thing that I should explain is that I am an uber-Gemini...in fact, 6 times over.  A blessing, and, of course, a curse.  The world, to me, is made up of language...just like the matrix, once truly perceived objectively from the outside, is comprised of code, right?  One in the same?  :)



My words are one of the brushes with which I create.




Didn't I tell y'all I was a hippy?


A hippy, that is, with HIV.  Yup.
 ;D

~R~
« Last Edit: August 29, 2009, 11:24:43 PM by renevatio »
"Don't ask yourself what the world needs.
Ask yourself what makes you come alive, and then go and do that.
Because what the world needs is people who have come alive."

-Dr. Harold Thurman

Offline sdguyloveslife

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  • Posts: 134
Re: Ignition...
« Reply #6 on: August 30, 2009, 12:29:50 AM »
Hi Renevatio,

Hmm?  Maybe pompous wasn't the right word choice?  Not exactly what I meant.  I guess what I’m trying to say is that I’m baffled that you walked in to a support website with a 1 month old diagnosis, but won’t hear of any other viewpoints but your own.  It sounds like you’ve “got it all figured out” but you talk in circles, contradict yourself and I'm left feeling confused, as I imagine others might be too. 

Let me explain.   

You insist that your HIV was transmitted by oral sex.  I’ll give you the “it’s possible,” but it’s also “possible” I’ll walk out my front door and get hit by a meteor tomorrow. Yes, according to the textbooks, it is in fact possible, but in clinical observations, the probabilities are miniscule.  There are people on this site who’ve been at this a lot longer than we have and they tried to suggest you might be mistaken on your transmission route.  (If you didn’t pick up on it, I was being facetious when I suggested you could go on the talk-show circuit to talk about your orally transmitted HIV!)  In fact, you readily admit you’ve taken it up the ass by the same guy you claim to have gotten your HIV from.  Can you open your mind to the possibility that you might have been infected by another route? 

Secondly, you don’t party like “most people” – which you say referred to crystal meth use.  Mecch pointed out that drugs are drugs and partying is partying – which, I have to say I agree – but neither of us said drugs or partying are “bad.”  But, let me ask you…are your drugs of choice "higher class" psychedelics?  I've never tried them (have wanted to, but never did it), but I thought people used psychedelic drugs to “open” their minds – you sure that worked for you?  You describe your use of psychedelics in a way that was special and it somehow “separated” you from the “common” drug user.  If that is the case, then why do you find it necessary to “cut most of that community out of your life and focus on getting healthier?” 

What I find most interesting is that you admit to indulging in crystal meth use – just that you didn’t get “deeply involved.”  If I had 100 crystal meth users in the room right now, 99 of them would describe their habit as “not deeply involved.”  Why are you so different?  Are you better then they are? 

I’m curious about your alcohol use because your own description is that you have been drinking heavily for the past 1.5 years.  What is considered heavily?  Does heavily mean that you think you might have a problem with alcohol or it's completely under control?  I’m confused because you said another point in your post that you're going to put all substance use aside for now.  So, is liquor not a considered a mind altering substance?  I only ask because you're waiting until January 1 to finally give up the booze. 

Sounds like you think "addiction" happens to other people but not you - because you'll just take your handy schedule I substances that “cure” addiction.  If it was that easy, I wonder why there are so many addicts in this world who desperately want to stop using drugs and alcohol.  Well, I’ll let you in on another theory that most "addictions" have nothing to do with the substance involved, but are attributable to a mental condition, defect, disease, or spiritual malady. 

And finally, while I think it’s both exciting and scary that you've already started selling your belongings to move to Hawaii, I can’t help but wonder why you caution us against advising you otherwise.  Gotten enough of that from your parents?  Family?  (LOL!)  Why not ask for input on this life-altering decision?  Maybe there are others who have been in your shoes – 1 month since diagnosis and they suddenly wanted to pick up and move away.  Is your “health program” portable to Hawaii? 

What I’m trying to say is that it sounds like you have a lot going on and you’ve revealed quite a bit in your first couple posts.  Something has drawn me to your posts though, and I’m not sure what that is.  I guess part of me is wondering why you are here when you sound so self-assured, like you’ve got it all figured out.  I’m guessing that’s just the façade and you don’t need to keep that up in here.  There are some really great people who visit this site – the discussions are not only interesting, but you’ll see the beauty of so many people wanting to help one another.  Why not hear some of them out?  Take a suggestion, mull it over – you don’t have to follow through.  I'm not exactly sure if "addiction" is part of your story, but I have seen various threads from folks on here who are in recovery and can talk to dealing with both HIV and addiction issues.  I come here because I often have nobody else to talk to about HIV related stuff -- and whenever I needed anything, I’ve gotten help, answers & suggestions.  I hope you get something good from it too! 

Welcome again,
Richard

Do not condemn the judgment of another because it differs from your own. You may both be wrong.

Offline renevatio

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Re: Ignition...
« Reply #7 on: August 30, 2009, 05:46:59 AM »
Since this has become a "defend myself" thread.  I will not engage publicly.  I have sent him a PM.

If anyone wishes to discuss things without putting words in my mouth, making assumptions, or attacking...I will be more than happy to respond here.  I am quite reasonable, believe it or not.


I really was trying to give everyone a sense of who I am.  And maybe took the "drugs" comment too far.  If so, I apologize.  I am a bit sensitive to that particular subject.


~R~
"Don't ask yourself what the world needs.
Ask yourself what makes you come alive, and then go and do that.
Because what the world needs is people who have come alive."

-Dr. Harold Thurman

Offline mecch

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Re: Ignition...
« Reply #8 on: August 30, 2009, 07:21:34 AM »
What people seem to be noting is a certain cognitive dissonance in your posts.  Thats really healthy to have so stick around and be less defensive.
http://en.wikipedia.org/wiki/Cognitive_dissonance
As for my comment on "drugs are drugs", I see no difference if a person wearing Savile Row/Haute Couture drinks too many hundred dollar single malt scotches at a five star hotel's piano bar, or smokes crack, or drops some bad acid, or takes too many prescription painkillers, if the next day/week/month/year he/she regrets something about the intake.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline renevatio

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Re: Ignition...
« Reply #9 on: August 30, 2009, 11:07:43 AM »
Cognitive Dissonance?

Sounds like just a fancy way of re-stating "Gemini" to me.  :)

Duality pervades me.  All that I do, all that I am.  Do you think constantly being "in-between" is easy?  It is like having a peg that could be made to fit in the round, square, or triangle holes...but isn't really made for any of them.  (Get your minds out of the gutter, lol)  There is no true feeling of home.  No true feeling of identity, always feeling like you can "fit in" everywhere...but not feeling you really belong anywhere...

Don't you think a chameleon wants to know what color he truly is, if he were simply floating in space?


Yes, cognitive dissonance is very much a part of my world.  But also one that allows me to view more sides of whatever equation I am studying...it allows me a more complete picture of things to see "all the way around" something.  But yeah, it makes ya a little crazy as well.

Thus far, I am managing it.  Or not.  :)



As to regrets about "drugs" - I do not regret most of my past interactions.  I have gained invaluable insight and experience that would have otherwise unavailable to me.  But it seems my walk with them is done now.  As Terence McKenna once said, "...once you get the message, hang up the phone..."

I got the message.  Too bad I didn't let it go to voicemail.  :P



~R~
« Last Edit: August 31, 2009, 02:11:43 AM by renevatio »
"Don't ask yourself what the world needs.
Ask yourself what makes you come alive, and then go and do that.
Because what the world needs is people who have come alive."

-Dr. Harold Thurman

Offline positivmat

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Re: Ignition...
« Reply #10 on: August 30, 2009, 11:09:09 AM »
Hey sorry to hear about your diagnosis, but welcome. I completely understand wanting to move. That was one of my first reactions 7 months ago when I was diagnosed. Using something negative to reinvent yourself in a positive way is a good idea. I enjoy reading your post. How you deal is how you deal and that will have to be ok.

Matt

Offline renevatio

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Re: Ignition...
« Reply #11 on: August 30, 2009, 11:43:42 AM »
Thanks for the words, Matt.

What context I hadn't yet included was that I spent most of the last 2 years traveling for a huge contract, so I put all of my things in storage and literally lived in hotels all year.  The good news was that I had no overhead, as my living costs were paid for by the job...the bad news was that I had no stability, always living out of suitcases, and in my home state maybe only 3-5 days a month.  (The more freedom, the less stability.  I am still trying to find out exactly where on that scale I am most comfortable.)

The contract is, for all intents and purposes, complete now.  I was just beginning to look into settling back in when this came along.  So I thought, why not go somewhere I really love?  I would have to take a big pay cut, and lower my standard of living a good bit...but the trade off is a fair one in my book.


~R~
"Don't ask yourself what the world needs.
Ask yourself what makes you come alive, and then go and do that.
Because what the world needs is people who have come alive."

-Dr. Harold Thurman

Offline Ann

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Re: Ignition...
« Reply #12 on: August 30, 2009, 10:09:41 PM »

Cognitive Dissonance?

Sounds like just a fancy way of re-stating "Gemini" to me.  :)


LOL. Geminis suck. ;D

Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline renevatio

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Re: Ignition...
« Reply #13 on: September 08, 2009, 06:32:28 PM »
Just got my 1st set of test results.

VL 2000ish
CD4 415

No meds for now, check again in 3 months.  Not bad news, but not great either.  If I don't improve by next check, I will consider going on meds prior to the 350 mark, the Dr. was in favor of going on earlier rather than waiting...


~R~
"Don't ask yourself what the world needs.
Ask yourself what makes you come alive, and then go and do that.
Because what the world needs is people who have come alive."

-Dr. Harold Thurman

Offline mecch

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Re: Ignition...
« Reply #14 on: September 08, 2009, 07:00:28 PM »
Do you know or have an idea how long you have been positive?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline sdguyloveslife

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Re: Ignition...
« Reply #15 on: September 08, 2009, 07:03:31 PM »
Hi Renevatio,

Yeah, I'd agree about the news, but it's hard to really tell much with a single data point.  The "medication" decision seems to be different for everyone, so it's going to boil down to what you feel most comfortable with. 

I don't mean to alarm you, but is a blood test every three months standard when you are newly diagnosed?  Maybe some others in the forum will chime in here too.  I could be wrong, but I thought for a new diagnosis that frequent blood draws were necessary (weekly or monthly) and that 3- and 6-month checks were standard timeframes once your virus is determined "stable."  Since you just tested positive, it's hard to make any decisions or preparations from a single number set - and if you're immune system is on a deterioration curve, it can happen pretty quickly (at least it did for me). 

When I tested positive, I had weekly blood draws because they really wanted to know which direction things were headed, and unfortunately for me, they got worse pretty quickly.  They also ordered the resistance test, because that typically takes longer to come back (I think it was 10-14 days?) compared to the CD4 count (which is just overnight) and the viral load (which takes a few days for my Dr's office).

Thinking back, I wish I spent a little more time getting educated on the medication options, common drug combos, first line recommended treatments, etc... because my decision to go on meds happened really quickly.  I asked the doctor what combos he had in mind, and I just chose 1 of the 2 combos he recommended, and I was on meds within a couple days.  This might be a good time to familiarize yourself with your options. 

Hang in there and take good care of yourself. 
R
Do not condemn the judgment of another because it differs from your own. You may both be wrong.

Offline renevatio

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Re: Ignition...
« Reply #16 on: September 11, 2009, 08:52:21 PM »
Thanks for the replies...

@mecch - I think I have been positive for about 15 months.  I had a "flu" at that point...a tough one, but fairly quickly over, like 4 or 5 days.  So far, that is all I can come up with.  My last test was something like 4 years ago.  The only 2 people I have been unprotected with during that time both have recently tested negative.  They were both people I monogamously dated for a long-ish period of time - 1 for 1.5 years, one for 6 months.

So, thus far, it still points to 15 months ago.

@sdguy - I will call my doc next week and ask him what he thinks about coming in earlier.  And I have been reading about the treatment options a good bit...but I guess those decisions can't come until I found out my genotype and had resistance testing...


~R~

"Don't ask yourself what the world needs.
Ask yourself what makes you come alive, and then go and do that.
Because what the world needs is people who have come alive."

-Dr. Harold Thurman

Offline Joe K

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Re: Ignition...
« Reply #17 on: September 11, 2009, 09:03:38 PM »
Ideally you will want to have labs repeated at regular intervals, to help establish a base for all of your values.  Once you have a number of lab tests, you will start to notice a trend in your numbers, which can then guide you in deciding on any treatment.  I also caution you against only looking at your numbers, when you determine your state of health.  You seem in tune with your body, so use that to keep tabs on how you feel.  Yes, labs can alert you to something that may require treatment, but labs can also fluctuate based on whether they are fasting or not, taken in the morning or afternoon, etc.  What I would recommend is that you have your labs done in the same time frame each time and that should help to establish a good trend for you.  Also realize that counts can rise and fall and that does not always mean that something is wrong.

My CD4s right now are 285 and at one point, they were 4.  I worked for almost ten years with counts of 200 and while I looked horrible on paper, I felt pretty good.  My whole point is monitor your health, pay attention and use your numbers as just one indicator of your health and don't sweat the little blips in numbers, as long as they fit with your established trend.

 


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