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LTS of AIDS, wanting to stay off meds and just live out the rest of my life.

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wolfter:
You have quite a few issues that needs addressed.  I'm not sure how to answer them other than suggest you follow up with this new doctor.  I learned the hard way the importance of having a doctor who is your advocate.  Perhaps she will discover the underlying causes.

It sounds as if you could also benefit from some mental health therapy. 

take care

Wolfie

ARMANDO:
i,ve been hiv+ for almost 25 yrs now and there was a point a few years ago that i felt the same way you do,i was tired of taking the meds , the side effects ,the long range damage to my body and to my organs,the physical damage to my body,I WAS JUST SO TIRED!!!I decided to get off all my meds for almost 7 months and then one day i thought i was having a stroke.I was diagnoised with BELLS PALSEY.MY VIRAL LOAD had gone up to 780,000.the problem was that i wanted to die not get sick!!!

weasel:

     Hello Rain ,

                        I have been POZ  since 1980  !

     I did go into AIDS   about 9 years ago ?   

     I have a good outlook , I think being above ground is way better than
    Being fertilizer  ::)

      At times I have so much pain I can not get around the house . I'v been limping
    lately .  I try to ignore the pain . 

    What is important is to try to get more HAPPY !!!
   Hard to do , But it makes such a big difference if you are happy , A little
  joy goes along  way to feeling better  .

     Please keep taking your MEDS  .  Death from AIDS is an ugly painful way to go ,
   Better to be healthy and work on living , We only get one trip and we must make the best of .

                                       My heart goes out to you ,

                                                                     Carl

harleymc:
Hey there rain,

Keep on pestering those doctors to get your pain management happening. It'll take a whole lot of approaches, physio, maybe diet supplements, psychological counselling, exercise therapy.... The key might be something other than medications. But keep pestering those medicos.

I went through two years of excruciating pain from back injury and went off my HIV medications.  I'm not pain free yet but manageing it better- strangely enough because my liver is fucked up I'm not doing any pain medications at all. I do find I have to consciously concentrate on the good things that happen in my life, but i do understand how utterly exhausting and demoralising pain can be.

I'm back on my HIV meds now because the disease symptoms were making my life & pain worse.

Hang on in there.

konkrypton:
Rain,

I hope you're still out there. I too have had a lot of pain, and some of it is because of the meds I take. The protease inhibitors caused the joints in my hips to deteriorate. I also stumbled and fell in a parking lot, and blew out a disk in my spine. So at this point I've had back surgery and both hip surgeries. I still have pain in my lower back. But I take pain medication for it. You have to search to find a good doctor, especially one that will understand your need for how much pain medication you take. And you have to be willing to negotiate with the doctor too. They are not going to give you so much pain medication that you're blotto for the entire month.

Sometimes the voice in the back of your head says you're in pain is lying to you. It's only telling you that so that you'll take more pain medication. It's a sign of growing pain medication addiction. You have to fight it. You have to examine whether you are really in pain. Don't just trust your first instinct.

If that's not your situation, I apologize. I say this out of love. I lost my partner to OxyContin addiction. Right now I'm taking oxycodone and that's the strongest medication I will let them give me.

As for feeling guilty about getting a government check, join the club. But I found that the best way to fight that feeling, is to do something for somebody else. Find someplace to volunteer, find a cat to look after, it doesn't matter. Just find something to take care of, it will help you feel useful. Pets are good because they need love and attention. Every moment you're taking care of them, you're not thinking about your own situation. And they give back. When you're sick and not feeling well and one of them crawls up to you lays down with you, you feel comforted.

These are just my thoughts, take them for what they are worth. I wish you luck, please write back.

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