Saturday, April 19, 2014

HIV Pain Keeping Me Up at Night (@IDIClinic)

We'll it's just now 6AM on Saturday morning and I've been awake for hours. Fortunately, I got a little bit of sleep late yesterday evening. Today, the pain in my feet and legs are kind of getting to me. I think what adds to the frustration of it all is that I live in the backward state of Oklahoma and empathy and solutions are not a strong attribute for HIV doctors in our state.

I can easily do a Google search about HIV related pain and find that from the various studies about HIV and Pain that about 40% to 80% of HIV clients with pain do not even get the benefit of being diagnosed with HIV related pain or HIV related neuropathy. And of all the years having HIV (15+ years) I have yet to have an HIV doctor do much about talking or dealing with HIV related pain. The most I've had them do is prescribe gabapentin, which for me is a vomit fest waiting to happen, or the updated version of gabapentin which is Lyrica. Lyrica for me even at a low dose causes persistent eye pressure and I have to stop talking it after a few days so that I can see better and not have eye pain. I've recently found out that the study on lyrica that was being done for diabetics and people with HIV was going so bad that they just stopped the study and it said that the positive effects of lyrica were just as effective as a placebo - I'd been telling them for years that it was not very effective and I get a dumb glazed look back from the doctor and the reassurance that it helps a lot of people. Obviously not! Says the study. So, Lyrica fails to help.

On top of all that, my primary doctor is closing there doors this month and they are the ones that have been helping me with HIV pain management. It has taken years to find medication that helps without causing to many side effects. So, I have to take the medical information they gave me and try to locate another doctor or be without help. Which is really where it seems the red tape would rather have me.

There is really not desire for doctors in the HIV world to refer a client to HIV specialized pain management or make much acknowledgement that there is even a need in this area. I was talking with an old friend that has HIV and mentioned my issues with HIV neuropathic pain in my hands, legs and feet. And my friend responded that he has had issues with that kind of pain for years and not once has his doctor ever addressed any aspect of pain related to HIV. And hey, if you don't take ownership of the issue then you have less work to do or as a doctor you can have the satisfaction of feeling as though it is someone else's issue.

Yes. I know there are places out there in America that have there shit together, but, Oklahoma is not one of those places. Yet.

- Ryan

Also see: Dealing with Pain and Stress on the Queer as Faith Blog