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A Bitter Pill

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12 Comments

Aundaray Guess

Thanks for reading and asking Rigo-I don't mind sharing as I currently take Norvir, Prezista, Issentress, Intelliance and Truvada. Glad to say no side effects at all from them, so fortunate in that area. The only one that I have had issues was Kaletra which caused extreme nausea and I quickly got off of.

July 5, 2012

Aundaray Guess

Fritz i just have to wow! Your story shows how far we have come with medications, from the arrival of AZT to now. It also speaks to how everyone's experience is different but in a way similar. Thank you for your story and support!

July 5, 2012

Aundaray Guess

George thank you for your story and i agree especially when you talk about fear. I think there's also a fear of the unknown which can also stop us. But it's not letting that fear get in the way of us staying healthy. it's great to hear you can help others with their fears!

July 5, 2012

Aundaray Guess

Thank you for the support Bill.

July 5, 2012

Aundaray Guess

Don you for the sharing of your story and like you said i hope in the art of sharing we both can help someone going through the same struggle.

July 5, 2012

Aundaray Guess

Thanks for reading and your letter reminds me that although we have stigma in large cities, that often in smaller towns it's magnified. I talk a lot about my highs and lows with medication in some of my past blog postings on Poz.com. Check them out and love to hear what you think and hopefully they can help in your situation.

July 5, 2012

rigo

hello, very interesting article, what medications (arvs) have u been taking and what were their side effects? thanks.

July 5, 2012

Fritz Fontainebleau

Damn, almost every time my viral load should be undetectable, they lowered the level of detection. Right now I’ve got a viral load of 20 and the lower limit is, you guessed it, 20. Originally the lower limit of detection was 500. Sort of frustrating.... I’ve been taking meds since AZT was approved (anybody remember having to set the alarm clock and waking up in the middle of the night to take their AZT dose), but it screwed with my bone marrow and caused me to have ITP (my platelet count eventually fell to 8,000). I weaseled my way into a DDI study 150 mile away. A month later I had to have my spleens (yes that is plural) taken out and no longer qualified for the DDI study. Next was the DC Buyer’s Club industrial DDC delivered by UPS, per doctor’s orders. The late 80's and most of the ‘90 were insane and painful.... Then Crixivan appeared, which of course I couldn’t keep down without a few bong hits first. Imagine telling the General Assembly AIDS Subcommittee in 1999 about throwing up in less than a minute if I didn’t smoke marijuana first. I explained I had to force myself to swallow the pills regardless of the nausea. They got nauseous themselves by my telling of how I swallowed my vomit that morning because it was the first of the month, I was out of marijuana and hadn’t “hooked up” yet. But the Crixivan worked with the other drugs and supplements which, at first, I use to keep in prepared dosage bags (you had to have something conveniently ready when you don’t know when you would get home). I went from bed ridden and dying (again) to active! Of course each combos failed after about two years, so I had to change meds again and again. I always took a med vacation before going on the next combo. Then came the my med disaster drug - Norvir. I could not take Norvir; it made me very sick. I stopped the meds because I could not afford the deductibles for Lexiva (non-preferred medicine) nor the side effects of Norvir. I’m now on a state program that pays my deductibles, but after 2 and a half years the combo is really messing with me concerning fatigue, pain and lack of muscle growth. I cannot stop the combo because the Viread keeps my HepB in check. So I’m hurting from the side effects, but I’m alive. I cannot imagine opening all those bottles every time I have to take my medicines. I have two medicine boxes - one week, 4 compartments a day pill boxes. I HATE FILLING THEM!!! It takes an hour plus every two weeks to reload them. But I don’t have to worry about missing a dose and if, rarely, I do, I know I did because it is still in the box. I also make sure the box is on my pillow for my night dose (which totally puts me out). You can’t go to sleep with a pill box between your head and the pillow. I am pretty certain I had HIV in 1984 when I was 22 years old; I recently turned 50 with a two year life expectancy the whole time. We have to be proactive. GIVE THE PILLBOX(S) A TRY, THERE AIN’T NO SHAME IN DOING WHAT YOU HAVE TO DO TO KEEP YOURSELF ALIVE. Do what you gotta do, Fritz Fontainebleau

July 4, 2012

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