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Author Topic: Afraid of Living  (Read 1439 times)

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Offline ppp333

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Afraid of Living
« on: April 09, 2011, 11:38:23 PM »
So I guess from my subject one can imply that lately I feel like I am stepping on egg shells every day living with this virus; if you call it living.  I know I caught it early, within 3 months and my numbers are excellent and only moving up.  My VL has been UD (since 3 months of Atripla my CD4 doubled and CD4% at 41-knock on wood) but I feel like I have to be careful just living.  If the medicine is working can I just resume to normal and believe that a coca-cola or slice of pizza every now and then won't effect me negatively. That the truvada isnt slowly killing my kidneys...I mean I used to drink socially once a week and smoke a joint here and there and now its like I wake up, take my pill, workout, have my veggie fruit Odawala SUPERFOOD juices w/ Spirulina and 2 egg whites, work, take my vitamins-Multi, fish oil, calcium w/D3, Vitamin, Ubiquinol, with my lunch normally quinoia grilled chicken and broccolli and eat dinner normally a piece of fish and seaseeweed salad, take a bath and meditate and go to bed at 10:30...Even when Im in the bath meditating I'm thinking of my body fighting virus, winning this battle.  I read the mind can be powerful and even cure things...(the guy who wrote the kings speech supposedly cured his caner by believeing it was gone-check it out on CNN)

Yet, I almost feel like I dont trust the Atripla to do its job entirely and need to do everything in my power to help the medicine.  I know my routine is healthy, but having this strict schedule is not.  its borderline become obsessive and restricting me of the old me of who i was, which i think im still grieving, bc I loved the old me.  I want to live carefree again and not have to worry ALL the time...I want to know that as long as I take the pill every day and continue a healthy lifestyle, that I can resume back to normal and have a fuckign snickers sometimes.  Look at all these great people LTS survivors here who I am so thankful lend their ears and open their hearts, look at Greg Louganis and MAgic Johnson, they are LIVING with this.  I miss the old me when I could look in the mirror and not see HIV but see my smile. 

My mom says the only thing guaranteed in life is your gonna die, everyone does, and life sometimes isnt fair but nobody goes unscathed and you never know when your turn is up so live everyday like its your last.  Well if every day was to be considered my last it wouldnt be thinking about this the whole time.  And I think this HIV has somehow held me back in living.  I dont think Im depressed but I just dont want to use hand sanitizer everytime I touch something.  I dont want to be on OCD medicine either, I just want to return to the old me who woke up and said what does this day have to offer and what can i add to the world.  Not "Fuck I cant believe this happened to me or here we go again" and think I cant go out on a boat with my friends and have a few drinks anymore bc well that will lower my immune system or that will add more stress to my kidneys..

When does returning to life and livign happen?  Its been 5 months... granted my career is going great, and my family and friends have been nothing more than overly supportive but googling hiv news and cure research everyday is just pointless and yet it helps me.  As if a cure or big news would come out and I wouldnt hear about it? I watched KAtie COuric and CBS NEws Sunday Morning before this, Im sure they would report it....

I know I am rambling but I want to live again and not be afraid that my body is perishing slowly...I want to have ocnfidence in the medicine and believe that if I live a healthy active lifestyle and just take that pill that things will be ok and th eonly thing I need to really do is swallow that "123" Pink pill...IT's 2011 this can be controlled and managed NOW! Right? I feel better just writing this but I still wish things were different..Then again whenever I think about having HIV somehow I see soemone with down syndrome, or think of my friend who lost both his brother and parents, or I hear Stevei WOnder and think wow I can see at least....Life is weird, so I guess I should just surround myself with loving people and put this behind me...but can you eevr truly put this behind you?   

Offline CaptCarl

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Re: Afraid of Living
« Reply #1 on: April 10, 2011, 12:42:33 AM »
TripleP-

  You will some day (soon, one hopes) realize that you will return to life and start living again. As far as when it happens, well, that is entirely up to you. Hopefully you will get to the place you need to be in to truly accept this. You need to be in a place where you understand that the virus does not control you, rather that you control it.
   
   Taking care of yourself is important. But there are different ways of taking care of yourself. You seem to have the physical aspect of it covered, but there is more than that. Stress reduction is important too, and you don't seem to have that taken care of. Like you stated, the mind is powerful, and can affect a lot of things. Though this has its limitations too. Don't get caught up in the movemet that teaches that a positive attitude will heal all things. It helps, but it's not the only thing there is to do. Keep up your meds too. If you allow the stress to run rampant, chances are it will negate the positive things you are doing in regards to the healthy living. Learn to balance things out.

   Take examples of those of us who are LTS'ers. We learned to incorporate the virus into our identities, but also not to let it become our identity. We  have made our peace, as it were, with our situation. We have even learned to treat it with a sense of humor, black though it may be. Never forget that you are indeed still alive. Whether or not you are living though , that is up to you. Keep in mind that while you are waiting to learn to live again, the world is not waiting for you to re-join it.  It just keeps on going, with or without you.

   All things in moderation, and that includes all the health food. It's good for your body ,but don't forget to feed your soul too. Go out for a greasy bacon cheeseburger and fries, wash it down with a cold beer. Have a good time with your friends, go to a party or two. As long as it is in moderation, things should be fine. As long as you're not waking up in a gutter everyday, a bit of fun won't hurt you. I think you'll find most LTS people don't live a life of austerity, we realize it's okay to indulge, but to over-indulge.

   Look at it this way: If you could plan out your last meal, would it be spirulina with egg whites and a fruit smoothie? Or a nice steak dinner with all the trappings and a hot fudge sundae afterwards.

You, as we all do, have a finite amount of time to live your life. How do you want it to be? Tha answer rests solely within yourself.

CaptCarl
The only thing I can do straight is shoot..

Offline buginme2

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Re: Afraid of Living
« Reply #2 on: April 10, 2011, 01:29:58 AM »
Wow, dude, if your hedging your bets on a cure and only think you are going to start living once a cure is found I'm afraid your in for a big dissapointment.  I'm not saying a cure will never happen but you cant obsess over it and need to start living your life. And planning out your day like you have isnt the beginning of OCD...it is OCD.   I hope your in therapy.  Its normal to grieve over the loss you have experienced.  Getting infected with HIV is experiencing a loss.  Like that of a death, but its more of a death of what you thought your life was going to be.  Your life isnt over. Its just going to be different.  Work on acceptance of that with a therapist and living the best life you can.  And personally a life without pizza and weed isnt one worth living anyway.  Do the things you enjoy.  And stop googling HIV cure.   

Offline Bucko

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Re: Afraid of Living
« Reply #3 on: April 10, 2011, 07:22:58 AM »
I practice an exercise I've named "creative denial": it's there, I know it, accept it but don't live it.

I'm 27 years in, having been infected in 1984. I shall probably die being hit by lightning or drop dead in the middle of a six/ten-hour marathon edging fuck session. If it hasn't killed me yet (and I've flatlined twice), then it most probably won't. Whistling past the graveyard's an acquired skill, my pet: cultivate it.
Blessed with brains, talent and gorgeous tits.

The revolutionary smart set reads The Spin Cycle at least once every day.

Blathering on AIDSmeds since 2005, provocative from birth

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Afraid of Living
« Reply #4 on: April 10, 2011, 07:45:25 AM »
ppp, you really need to start living again. There's no reason why you can't have a snickers, a slice of pizza or a beer - or two or five or ten - if that's what you feel like having. (regarding the alcohol, the main worry is that you get so drunk you forget to take your meds)

I've been poz for fourteen years and I am still not on meds because my numbers have been good. They're not always great, but they're good. I'm not a Long Term Non-Progressor, I'm a Long Term SLOW-progressor and there is nothing special I do in my life to stay that way. I smoke, I drink socially, I stay up late some nights. I eat what I like, when I like. I will need meds someday - very likely in the next year or so - but I'll deal with that when the time comes. When the time does come, I do not anticipate changing anything in my life other than taking my meds.

Some of you may remember a time when I was tee-total (for 8.5 years), but that was because of the hep C and I was tee-total before I got my hiv diagnosis. I did the hep C treatment in '02-'03 and got the "cure", but I remained tee-total for another four and a half years after the treatment ended, just to give my liver a good long rest. I started drinking socially again in late '07 and it hasn't impacted negatively on my health or numbers in the least.

All you really need to do is use a little bit of common sense. You have good numbers and that means you don't have to watch every little thing you do for germs - just follow good food hygiene rules, the rules that EVERYONE should be following. And stick to a decent, healthy diet, but that doesn't mean you can't have pizza or sweets or whatever else you fancy eating.  

I too was hyper-vigilant for a few months after diagnosis and it took a little time to realise that I could live my life very nearly the same as I did before. You'll get to that point too, so hang in there.
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 hope_for_a_cure

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Re: Afraid of Living
« Reply #5 on: April 10, 2011, 07:50:43 AM »
I know I am rambling but I want to live again and not be afraid that my body is perishing slowly

It sounds like you have a lot going for you already ppp.  Your numbers are good, you indicated (at least my read of it is) that you have a network of friends and you are gainfully employed. 

When does returning to life and living happen?  You never stopped living.  I know that sounds trite but its true.  People who never get HIV are going to die also... every day the body ages and gets closer to the inevitable end. 

Offline auspoz

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  • Posts: 158
Re: Afraid of Living
« Reply #6 on: April 10, 2011, 08:16:36 AM »
Quote
.Life is weird, so I guess I should just surround myself with loving people and put this behind me...but can you ever truly put this behind you?  

This ending to your post really resonated with me.

Yep; life is weird, but it is also wonderful, when seen from a bigger perspective. When I was 5 months in, I could only see the detail of the most recent past, and it was pretty tough. And if I could talk to that "me" who was experiencing all that heavy stuff, I'd try to tell "me" that, although it seems impossible to comprehend now, you will find a way to deal with this, if you choose to. I really hope you're able to find peace soon, and you're doing many amazing things to get there.

Yep- I agree totally- surround yourself with loving people. They love you for a reason. For who you are. And you are not HIV, just like they are not "diabetes", "blood pressure" or "dandruff" for example. You're you. :)

As for the last question, I think one can definitely put the diagnosis or dealing past you, and move on to a different phase. As for HIV, perhaps you can't put it in the past medically, but you can learn ways to live well. Maybe hoping for the cure to put this in the past is your way of wishing to be in a new phase. Of living well with HIV, rather than trying to come to grips with tough times.

Your post sounds so thoughtful, I hope you get there soon. :)

auspoz.

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Afraid of Living
« Reply #7 on: April 10, 2011, 08:34:40 AM »
And you are not HIV, just like they are not "diabetes", "blood pressure" or "dandruff" for example. You're you. :)

Preach! Whenever I hear someone say "I'm hiv" (without adding the "positive" bit), it's like nails on a blackboard to me. I always feel like saying, "You're not a giant, walking virus! You're just hiv positive - you have a virus, but you are not that virus." How silly would it be to hear someone say "I'm cancer" or "I'm diabetes" or "I'm dandruff". (that dandruff one made me laugh)
Condoms are a girl's best friend

Condom and Lube Info  



"...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 thunter34

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  • Posts: 7,310
  • His name is Carl.
Re: Afraid of Living
« Reply #8 on: April 10, 2011, 09:30:42 AM »
I actually am  dandruff right about now....or mostly dandruff.  Time for some more ketoconazole shampoo.

-thunter34

(who has done everything from Krispy Kremes to crack post diagnosis and is still kickin' it)
AIDS isn't for sissies.

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Afraid of Living
« Reply #9 on: April 10, 2011, 09:57:24 AM »
I actually am  dandruff right about now....or mostly dandruff.

I always suspected you were a flake! ;D
Condoms are a girl's best friend

Condom and Lube Info  



"...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 OneTampa

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Re: Afraid of Living
« Reply #10 on: April 10, 2011, 10:32:41 AM »
Alright Ms. Ann!  Snap!  ;D
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline mbpoz6

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Re: Afraid of Living
« Reply #11 on: April 10, 2011, 11:57:52 AM »
Hey ppp333. Don't let the HIV stigma get to you. You can still eat a pizza, you can still have your candy you can still do all the things you were doing before....The only difference is you take a pill every night before you go to bed. That's all. Obviously you cant be drinking a big glass of beer everyday or easting a bag of candy for breakfast daily. That's not healthy regardless if you were poz or neg. But just live your life man.... Your going a bit overboard with the whole living thing (I was at first too, but I have opened up my eyes).

Ok, there's a virus in you, but you can control as long as you take ur pill everyday and listen to your doctor and keep up with your doc. That's all. Put it this way...now that you are poz, you gotta take a pill everyday until that magical vaccine or cure or whatever comes out? Is it coming out tmrw? Probably not but will it be here in the next 5-10 years. Maybe. Who knows? but don't "anticipate it" and just be thankful that ONE PILL has a very good chance of keeping the virus away.

Can you still go to work? Yes. Can you still walk? Yes. Do you still look like a normal? Yes. Do you have access to meds anytime anytime? Yes. etc.. You can still do the things you were doing before. Your really not going to be changing much.  Though I dont want HIV, if I had to choose between having HIV, or Parkinsons diseas, or MS, or being paralyzed or having cancer etc. Id definitely choose HIV in a heartbeat since its way easier to deal with than these other "worse" life changing conditions.

There's people out there (mainly in most developing countries) that cant even get there blood drawn an know what their CD4 is or VL. They cant walk down the street to the pharmacy and pick up their prescription. They don't have a doctor they can see every 3 months. They don't have a computer where they can join a forum to get support, or educate themselves on hiv. etc..... Kinda get what Im saying?

As far as the eating thing goes, east what you want but don't "over-eat". Too much snickers or too much fast food is bad for you regardless  if your neg or poz. 

I'm sure things will change soon. We went from people dying, to ppl taking 20 pills a day, to like 10 pills a days to a few pills a day, and now most ppl take just as little as one a day, (like a multi vitamin lol). All of this happend within 30 years.  Back then in the 80's a doctor would tell someone they have cancer and they have X amount of months to live....then they'd die.... In 2011, its pretty much the same story (depending on the cancer of course).....In the 80's the doc told AIDS patients they had X amount of years to live.... some lived and some unfortunately died.   In 2011... The doc doesn't say your gonna die anymore like they did back in the day, so just live your life and listen to the doc.

I guess what I'm trying to say is yes HIV can be "bad" only if you let it control you. But if you control it and show it "who's boss", there's not much you have to worry about or change. I think the main reason why it causes stress and all that is the stigma that's out there. The stigma out there is that its this "crazy disease and your going to die and yadda yadda yadda" when that really isnt the case anymore if you have access to the meds a good doc. Oh and things can only get better...I'm sure something type of advanced treatment will be on the market in the next 5-10 years whether it be a vaccine or once-every two week pill or something in that nature. Don't read too much about all that "cure" stuff. It will get to your head. There's no total cure for cancer, asthma, M.S., diabetes sickle cell etc. but they can all be controlled/treated. Hopefully we will be able to do the same with HIV soon that will allow us to come off meds, or take meds less often. But as for now, be glad your taking only ONE pill a day, and not 20, or in worse case.... going to die.

Hope this helps a bit. :)

 


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