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The hysteria of jtonic


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Jtonic, I was in exactly the same boat as you five months ago. I found out in January that I was poz and it completely devastated me. I, like you, felt trapped, scared and hopeless. I didn't know where to turn and I turned to the guys here on BZ, who were a great help. Still though, things were feeling really hopeless for me. I even got hammered drunk one night and made an attempt on my life with pills and vodka (please do not do the same). I never thought my life was going to get better, but amazingly, it does.

Here are some things for you to think about...

1) I'm sure you've heard this many times, but HIV is NOT a death sentence anymore. Studies are showing that newly poz people that adhere to their meds can expect to live a normal lifespan.

2) Meds are really not a big deal to take these days. I just finished a month's worth of Stribild, a one a day pill. I take it in the morning as soon as I wake up with a small bite to eat and I'm good for the day. I don't think about it and I can go on with my life for the day. The drug thankfully has had virtually no side effects on me (occasional relatively minor headaches).

3) Cost of the meds and treatment should be little to no worry to you as you live in Canada. It should come at little to no cost as you have universal healthcare. I'm in America and have to pay based on my health coverage. My new health coverage is very good and I pay $40/month co-pay for Stribild and the true cost of it is nearly $3000 a month.

4) Who you choose to tell is your business. Right now, the only person who knows is my girlfriend (I'm bi) and she still loves me regardless of the disease. We rarely ever talk about it and we have a great relationship. My family/friends don't know because they don't need to know. Likewise, you only need to tell those that you are comfortable telling and those that NEED to know (e.g. Sex partners).

5) Most importantly, just know that you CAN live a long, normal and peaceful life with HIV. The drugs are only going to get better and a cure may be on the near horizon.

Five months ago, I thought my life was doomed to be a dark gloomy cloud forever. I never thought I would reach the healthy, stable mental state I'm in now. I know it seems like a reach for you right now, but keep it mind, this is just a fresh wound that needs to heal. You'll make it, trust me you will. If I did, you can too. If you have any questions or want to chat, PM me.

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poptronic:

I've come to the point where I no longer worry about my health or lifespan; I know I will be fine if I just listen to my doctor.

What I can't accept yet is the thought that, for every day now, HIV might always be on my mind. With every pill I take. Every 3 months visit. Every prescription renewal. Every guy I encounter. Every sex partner (which I already realize will become difficult, unless I box myself to 'poz friendly' sites like barebackrt.com). Every time I see 'clean/ddf only', my heart sinks. It hurts even more, because I used to write misinformed statements like that before I was educated about HIV.

I'm incredibly hurt that being 'poz' is somehow part of me. I'm sure most people get past it. I know it doesn't define me, but it certainly will dictate a lot of my social/sex life now. I keep saying to myself "I'm infected". Will this thought ever go away? Does it get easier, or does it always stay there in the back of your mind? Do you ever feel completely 'normal' at gay bars, or talking with guys online?

Lately, I can't spend an hour at work, on my commute, or at home without thinking about HIV. It used to drive me crazy. I've learned to channel this worry into my work and trying to stay focused on daily tasks. But I still have these momentary breakdowns, once in a while, where I have no shoulder to cry on. What makes it difficult that I tend to lead a loner lifestyle (most of my gay friends are online; not a close circle of friends). I wish I was surrounded by people who will accept me. Right now that's not the case. I can try a support group, but I'm just not ready to 'go' and associate with this just yet. Am I completely stupid for isolating myself?

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Guest JizzDumpWI

jtonic, you are less isolated than you think... There are many guys here you can PM, and of those many you can phone. From what you write you are exactly where you need to be. And all the churn in you will pass. I remember my friend poptronic's path well and you are in a similar place now. Will you be on a roller coaster for awhile? yes. Relax, ride the ride knowing that three months from now the churn you feel will have settled down.

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Do you ever feel completely 'normal' at gay bars, or talking with guys online?

It's important to understand that it will be a different "normal" and with time you will adjust to this new normal, but it will take time. It will never be the old normal which is what everybody going through profound life changes has to grieve.

Let's face it, nobody can convince me that being HIV+ is better than being HIV-, no matter how hot the idea of stealthing, anon sex, and hiding HIV status may be. At the end of the day HIV is something to be taken serious that will inevitably complicate a person's life. I don't want to have to tell my dentist that I'm HIV+ or have to inform my doctor.

But I know that if I were poz I would adjust and learn to deal with these issues. jtonic, you will eventually learn to be HIV+. Beware of the feelings of shame because those will destroy you.

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One thing that helped me enormously, though it sounds silly, it wasn't so silly in the eighties when there was no therapy was to imagine the virus as literally a bug and send an imaginary pest control guy through my system. When I did start medication I stopped this fantasy, but even today if I have a dream that involves insects I know I'm subconsciously worrying about HIV.

The other thing I still do is to refer to "my little passenger" - after all it depends on me for life support, but erm, it ain't going anywhere because it's so bombed out on all the antivirals I keep throwing at it...

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It's important to understand that it will be a different "normal" and with time you will adjust to this new normal, but it will take time. It will never be the old normal which is what everybody going through profound life changes has to grieve.

This is what I feared most, but I know I need to come to terms with this reality. It will be a different 'normal' - it won't be the same and I can't go back. It looks like everyone goes through it eventually, and I will too. The good thing is I don't feel shame anymore. Last week I had strong feelings of guilt. I put a lot of blame on myself. I also used to reject encouragements that said I should look on the bright side ("think of all the sex you can now have without fear!"); oddly enough, it's helped me lately. rawTOP was right. 'Slutty sex' is something I never quite embraced before. Maybe I should explore this side of me, after I get undetectable? I even got horny for the first time in weeks yesterday. I didn't think this feeling would be back in a long time. Guess I'm only human. Anyone else had a phase like that, where new/greater possibilities for sex was actually a coping mechanism rather than a source of stress?

The other thing I still do is to refer to "my little passenger" - after all it depends on me for life support, but erm, it ain't going anywhere because it's so bombed out on all the antivirals I keep throwing at it...

This is one of the tricks my therapist suggested; visualizing HIV as a little bug that's inside me (and will always be part of me), but something I will always control and beat the hell out of with new meds!

jtonic, you are less isolated than you think... There are many guys here you can PM, and of those many you can phone. From what you write you are exactly where you need to be. And all the churn in you will pass. I remember my friend poptronic's path well and you are in a similar place now. Will you be on a roller coaster for awhile? yes. Relax, ride the ride knowing that three months from now the churn you feel will have settled down.

I got a few PMs. But I could still use a 'pick me up' over the phone or Skype. I tried an anonymous phone line in my area for HIV support; it didn't feel right (felt like they were reading from a manual and kept giving me the same referrals as my counselor). If anyone has a few minutes to spare over the phone, I appreciate a PM and let me know how I can get in touch, or I also have my Skype name in the signature. People here have 10x more helpful to me. I'm truly grateful for this forum.

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poptronic:

I've come to the point where I no longer worry about my health or lifespan; I know I will be fine if I just listen to my doctor.

What I can't accept yet is the thought that, for every day now, HIV might always be on my mind. With every pill I take. Every 3 months visit. Every prescription renewal. Every guy I encounter. Every sex partner (which I already realize will become difficult, unless I box myself to 'poz friendly' sites like barebackrt.com). Every time I see 'clean/ddf only', my heart sinks. It hurts even more, because I used to write misinformed statements like that before I was educated about HIV.

I'm incredibly hurt that being 'poz' is somehow part of me. I'm sure most people get past it. I know it doesn't define me, but it certainly will dictate a lot of my social/sex life now. I keep saying to myself "I'm infected". Will this thought ever go away? Does it get easier, or does it always stay there in the back of your mind? Do you ever feel completely 'normal' at gay bars, or talking with guys online?

Lately, I can't spend an hour at work, on my commute, or at home without thinking about HIV. It used to drive me crazy. I've learned to channel this worry into my work and trying to stay focused on daily tasks. But I still have these momentary breakdowns, once in a while, where I have no shoulder to cry on. What makes it difficult that I tend to lead a loner lifestyle (most of my gay friends are online; not a close circle of friends). I wish I was surrounded by people who will accept me. Right now that's not the case. I can try a support group, but I'm just not ready to 'go' and associate with this just yet. Am I completely stupid for isolating myself?

jtonic, it is extremely hard in the beginning. No question about that. I read your posts and it literally feels like I've gone back in time five months. It feels almost like I could have wrote those posts for you. But I will tell you this... I have come a LONG way in five months.

I hope you will also come that long way. It may take you longer than five months, it might not. Everyone copes differently.

Some say that HIV will shackle you in life. I say that HIV will only shackle you if you let it. The way you live with HIV completely depends on how you choose to live with it, the attitude you take to it. My attitude is basically this:

"HIV is a condition I have. It will be well-controlled with medication and the guidance of my doctor. HIV is NOT who I am, it is not the definition of me. Many people have been down this road long before me. I am not alone. I am young, I am free, and I have a long exciting life ahead of me. I have no regrets about my past and I forgive myself for any mistakes I have made. My past will not be dwelled upon. My future will not be compromised or dictated by a controllable virus. I am a stronger and better person since I have found out I am HIV+, certainly not less of a person. I thank God every day that I have been faced with this obstacle in the year 2014 and not 1994, or even 2004. Whatever issues that may come my way in the wake of this condition, I will fight and I won't give up, and I will help others who are in the same boat as me."

You will learn to adopt these attitudes as time goes on. It may seem daunting right now, but you will get there. I didn't think I would, especially in such a short period of time, but I did.

Also, you have mentioned your concern about taking meds every day and you are worried it will be a constant reminder of your "stupidity." I just started taking meds about 5 weeks ago (Stribild, a one a day pill). I was worried about it too when I first started. Dude... It is the easiest thing in the world. Some guys I have spoken to have a timer set on their phone to remind them to take it every day at the same time. Though that's not a bad idea, I prefer not to do that. I just take it first thing in the morning around the same time when I wake up, then eat something small. I forget about it after. It doesn't bother me or start my day off with any negative reminders. I also have not forgotten once to take it, not had any mid-day "oh shit I forgot" moments.

You will be fine man. Trust me.

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Guest JizzDumpWI

Poptronic, a question for you, now these five months into it. Recall how at the beginning many of us; I think started from bearbandit; said that diabetes was a more significant condition; and your take then was that nothing could be worse than HIV? What's your thinking now of HIV vis-a-vis Diabetes?

JDW

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love this from Poptronic:

"Some say that HIV will shackle you in life. I say that HIV will only shackle you if you let it. The way you live with HIV completely depends on how you choose to live with it, the attitude you take to it. My attitude is basically this:"

I had the pleasure (and it was a PLEASURE) to meet him a few months back. I was in NJ, had recommended my HIV specialist to him (I lived there when diagnosed)...we had lunch and a long talk.. He's come a LONG WAY...

jtonic, it is extremely hard in the beginning. No question about that. I read your posts and it literally feels like I've gone back in time five months. It feels almost like I could have wrote those posts for you. But I will tell you this... I have come a LONG way in five months.

I hope you will also come that long way. It may take you longer than five months, it might not. Everyone copes differently.

Some say that HIV will shackle you in life. I say that HIV will only shackle you if you let it. The way you live with HIV completely depends on how you choose to live with it, the attitude you take to it. My attitude is basically this:

"HIV is a condition I have. It will be well-controlled with medication and the guidance of my doctor. HIV is NOT who I am, it is not the definition of me. Many people have been down this road long before me. I am not alone. I am young, I am free, and I have a long exciting life ahead of me. I have no regrets about my past and I forgive myself for any mistakes I have made. My past will not be dwelled upon. My future will not be compromised or dictated by a controllable virus. I am a stronger and better person since I have found out I am HIV+, certainly not less of a person. I thank God every day that I have been faced with this obstacle in the year 2014 and not 1994, or even 2004. Whatever issues that may come my way in the wake of this condition, I will fight and I won't give up, and I will help others who are in the same boat as me."

You will learn to adopt these attitudes as time goes on. It may seem daunting right now, but you will get there. I didn't think I would, especially in such a short period of time, but I did.

Also, you have mentioned your concern about taking meds every day and you are worried it will be a constant reminder of your "stupidity." I just started taking meds about 5 weeks ago (Stribild, a one a day pill). I was worried about it too when I first started. Dude... It is the easiest thing in the world. Some guys I have spoken to have a timer set on their phone to remind them to take it every day at the same time. Though that's not a bad idea, I prefer not to do that. I just take it first thing in the morning around the same time when I wake up, then eat something small. I forget about it after. It doesn't bother me or start my day off with any negative reminders. I also have not forgotten once to take it, not had any mid-day "oh shit I forgot" moments.

You will be fine man. Trust me.

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Poptronic, a question for you, now these five months into it. Recall how at the beginning many of us; I think started from bearbandit; said that diabetes was a more significant condition; and your take then was that nothing could be worse than HIV? What's your thinking now of HIV vis-a-vis Diabetes?

JDW

Jizz,

I take those words as my own, but as words of reassurance: Given the choice of the miraculous disappearance of either HIV or diabetes, yes I'd sooner be free of diabetes. Thanks to a new consultant, I have renewed belief in my ability to live with HIV. Perhaps go some way towards reversing my early osteoporosis, get some of my body strength back....

For those who don't know me: I seroconverted in 1980: no-one knows where I'm going now (except me: I'm about the hit the sofa!)

Steve

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I had the pleasure (and it was a PLEASURE) to meet him a few months back. I was in NJ, had recommended my HIV specialist to him (I lived there when diagnosed)...we had lunch and a long talk.. He's come a LONG WAY...

If a forum member ever comes up to Montreal, it'd be my pleasure to meet you as well. I wish I had the same luck as poptronic.

For what it's worth, I feel much better already. I can sleep again, without sleep pills. I told the news to a few 'pen pals' on Skype, and they were all supportive. I eat better. The next step is to find out if or when I start meds.

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Poptronic, a question for you, now these five months into it. Recall how at the beginning many of us; I think started from bearbandit; said that diabetes was a more significant condition; and your take then was that nothing could be worse than HIV? What's your thinking now of HIV vis-a-vis Diabetes?

JDW

JD- I am glad to say that the medication (Stribild) has been very easy on me so far. I hope that my next blood test, which will be in early July, will yield undetectable results. Once I am there, I will feel really good. If it's not yet, but as long as my VL shows a downward trajectory, I will still feel better and hope for UD on the next one.

To answer your question, no I don't think the way I was thinking back a few months ago. Seeing how easy it is to take a single pill in the morning that is very easy and non-disruptive on my body is very reassuring, whereas I know that people with diabetes have to inject themselves with insulin every day and that must be much harder. However, my thoughts on the stigma have not changed. That part is hard for HIV+ people as opposed to people with diabetes. No one will ever look twice at a person with diabetes and think, "ewww, that person is so gross and dirty- they have diabetes!" But we all know how that works for people with HIV. I am not letting it bother me either way.

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Guest JizzDumpWI

*nod* thanks. You know I am happy you've come to terms so well in five short months. You may still have a bit of roller coaster - but seems you are through it. Re diabetes though, I believe many think things like proper diet and exercise would have prevented it. Our society can be chockablock with opinion and judgement.

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The next step is to find out if or when I start meds.

Umm, there should be NO IF or WHEN, you must insist on starting meds immediately and if your doctor disagrees, find another doctor. Remember, it is 2014.

There is NO advantage to waiting. HIV is invading your DNA every moment you wait. So don't wait. One last comment, as my ID doctor reminded me, you don't have to take meds for the rest of your life, only til we find a cure. And that will happen in our lifetime.

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