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Living this way myself and dealing with Doctor at Beth Israel. I see the need for them to learn more understand of pain is true. They think giving gabapentin out is the greatest thing . Yet not when you don't want to sleep your life away in a fog. The drugs lead to more problems. The disc dease comes and goes with flare up. That they just don't understand . MRI and x Ray's are not the answer and Bill's cause more upset. You 60 not a child and the addicts have cause a back lash on us that's it.
I am so glad to have read this story! I was diagnosed 5 years ago with full blown AIDS and spent 3 months in the Hospital. I lost 100 lbs and could not walk. 5 years later I am 64 undetectable , active and for the most part doing well. I have taken my pains to my Doctors and I get no real answers on the cause of the pain and we treat each symptom. With the knowledge from this article I now understand that I am not alone and the huge variety of pains I feel are real! What a relief!
Thankful again :) but I'm nobody without all of the people I interact with, and without all the amazing survivors, health advocates, and chronic pain brothers and sisters. I didn't see any link for you to connect with us, so here is some information: HIV LONG TERM SURVIVORS International Network Founder and Director (415) 626 9077 H (415) 359 7178 cell Link to free streaming of the Emmy awarded documentary "LAST MEN STANDING", https://drive.google.com/file/d/10CYaoyYsPvlolFlChWbU
Thank you all again, yes, POZ magazine, Oriol, Sean Strub, Heather the amazing writer, and Angela the wonderful photographer. Yes, about the comments, yes, I am the founder of the GREAT family group: the HIV LONG TERM SURVIVORS International network, and we are not just in Facebook as Oriol said, we are a whole movement, in many social media platforms. We also do interviews, support, at local as well as National and International levels. #hivlongtermsurvivors :)
I was so glad to see this. 30 living with HIV and Chronic pain for a couple decades. It is exhausting and I feel none of the healthcare providers are really listening.
Interesting read, looking at the photo of Guillen on the cover you wouldn't know all of that was taking place, I've read on the LTS Facebook page he foundered but not in that depth, reading it here with the cocktail taken for his pain, the two doctors and the work being studied for pain for those of us living with HIV/AIDS, I've learned more and have added to my resources on chronic pain. I applaud Guillen for using his own story to help others with w/HIV and chronic pain. Truly wish it was so
Rbachas
even among people on effective antiretroviral treatment who have an undetectable viral load thanks for the article the above sentence stands out, being at the intersection of those who think U=U solved the problem, and those of us still dealing with ongoing quest so important to not get left behind as long term survivors hopefully we are still in this fight for a solution together both in ongoing studies and ending AIDS I experience stigma from those who celebrate without the pain thanks
September 8, 2021