December 1, 2017
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I have to say this article brings the fire out in me. I have had the worst time with Doctors this past couple of years comparing me to the MEDICAL JOURNAL NORMS!!! I am NOT a MEDICAL JOURNAL NORM I am an individual with my own UNIQUE NEEDS. For one my body metabolizes medication so fast that we have had to continually adjust different medications that would work for MOST OF THE POPULATION at normal doses but not for me.
I even gained 50lbs on an HIV DRUG called TRIUMEQ. The HIV DOCTOR at the time told me it was impossible because NO ONE ELSE in the CLINIC had an issue with it. She told me I must have changed my diet which I had NOT. My heart doctor and my PCP both agreed it was the ingredients in the TRIUMEQ. Needless to say I found a NEW HIV DOCTOR who actually WORKS WITH ME in making decisions in my HIV CARE!!!
I had a new PCP recently that kept on hounding me about wanting to know HOW I CONTRACTED HIV. I told him that was none of his business but he insisted so I told him, "I GOT IT FROM GIVING A YOUNGER GUY A BLOW JOB". My Mom almost lost it laughing {she goes to most of my Doctor Appointments with me} so she already knew and the WHITE OLD MAN about fell off his stool. Then he said to me he did NOT need to know that. I was like really you asked so don't ask me anything else unless you want the truth. I am NOT ashamed of being GAY and I am NOT intimidated by any DOCTOR!!
I even gained 50lbs on an HIV DRUG called TRIUMEQ. The HIV DOCTOR at the time told me it was impossible because NO ONE ELSE in the CLINIC had an issue with it. She told me I must have changed my diet which I had NOT. My heart doctor and my PCP both agreed it was the ingredients in the TRIUMEQ. Needless to say I found a NEW HIV DOCTOR who actually WORKS WITH ME in making decisions in my HIV CARE!!!
I had a new PCP recently that kept on hounding me about wanting to know HOW I CONTRACTED HIV. I told him that was none of his business but he insisted so I told him, "I GOT IT FROM GIVING A YOUNGER GUY A BLOW JOB". My Mom almost lost it laughing {she goes to most of my Doctor Appointments with me} so she already knew and the WHITE OLD MAN about fell off his stool. Then he said to me he did NOT need to know that. I was like really you asked so don't ask me anything else unless you want the truth. I am NOT ashamed of being GAY and I am NOT intimidated by any DOCTOR!!
He then TOLD ME TO QUIT MY HIV MEDICATION because my numbers were good and I did not need the medicine any longer. He also told me I took too much blood pressure medicine because my blood pressure was fine when his nurse took it. HELLO, the reason my HIV is under control {CD4 1872, HIV-1 RNA by PCR <20 copies/mL, HIV-1 RNA not detected} and the reason my Blood Pressure is okay is because I take my MEDICATION like I am supposed to DO!!!
Diagnosed HIV POSITIVE on May 28, 2009 - Started medication 09/2009 - Undetectable since 10/2009 - Lowest my CD4 count was 700 in 2009 Highest was 2460 April 2017
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| Current Cd4 Count 1872 and HIV VIRAL LOAD UNDETECTABLE!!! |
Left his office FIRED HIM and REPORTED HIM to Insurance Company and State Medical Board. Since 2009 I have fired 2 HIV Doctors, 2 PCP's and 2 Heart Doctors. It is your health and they work for you not the other way around. NEVER let a DOCTOR or anyone else INTIMIDATE YOU or make you feel any kind of SHAME just because you have HIV or any other STD!!!
So yes, I am in total agreement with Josh Robbins on this issue of wanting to BE HEARD in MY HEALTHCARE!!! Enjoy this article and get empowered.
It is your BODY, YOUR HEALTH and YOUR LIFE so make your VOICE BE HEARD!!!
It is your BODY, YOUR HEALTH and YOUR LIFE so make your VOICE BE HEARD!!!
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Article by Josh Robbins from Echo Mag, here
More specifically, I want to be heard in my healthcare. I want my healthcare delivered to me to be personal, derived specifically for me, and the exact opposite of community-wide healthcare. I don’t want to be a statistic anymore and I couldn’t care less what risk pool in which I’ve previously been placed or grouped. Sometimes the labels and words like “MSM”[men who have sex with men] and “high risk”[sexually] completely veil my identity within my own health. And it isn’t okay, anymore.
I am an individual first, and my healthcare needs to be mine. I want to be heard.
As a cisgender white male, I have substantial privilege, obviously. I completely accept that, as neither my fault nor my reward. I cannot affect it. But as an HIV-positive queer trying to navigate healthcare, at times, I feel I am losing. I have yet to find health equity – and I’m putting in the work.
Since the Affordable Care Act was implemented, I have been dropped by insurance companies four times – each followed by brief interruptions of me seeing my doctor and once completely stopping my adherence to antiretroviral meds. I consider myself to be pretty savvy at navigating the system. If I am having trouble with the system, I suspect others may have already just stopped trying to figure it out altogether. But I am not giving up on healthcare. I am fighting to stay engaged.
When I finally make it to the doctor’s office, I also want to be heard. In 2012, my first appointment with my HIV specialist focused on community-wide recommendations to begin antiretroviral therapy immediately. Sure, there are benefits to starting treatment early, but at that time, arguments could be made for waiting – especially because I was showing signs of being an HIV controller [healthline.com/health/hiv-aids/hiv-controllers].
Since being diagnosed with HIV in 2012, almost every time I have a minor illness or issue arise, I sometimes cringe when telling any non-HIV specialized doctor or nurse practitioner that I am positive because it immediately changes how they treat me both literally and medically. Usually the moment that I disclose that I am positive, everything is attributed to the virus. I understand, accept, and believe that HIV treatment works[cdc.gov/actagainstaids/campaigns/hivtreatmentworks/index.html] – but not every minor issue is related to living with HIV.
I joke sometimes that I could run into a glass door and break my nose, and when I hit the emergency room instead of helping me with my sideways nose, they would be attempting to study how HIV is starting to affect my cognition. “My nose is broken because I ran into a glass door. HIV isn’t to blame,” I would say.
I just want to be heard.
When I describe some of the health problems that I experience to my physician, like the embarrassing issue of HIV-related diarrhea, I wasn’t met with recommendations for FDA-approved diarrhea treatment [mytesi.com]. Instead, I was told on more than one occasion that my doctor “does not see diarrhea anymore” because of the improved HIV meds that we now have.
Honestly, I do not care what they see or don’t see among patients living with HIV, because I am experiencing that side effect. And I wanted to be heard – to be treated individually and not ignored.
This year I have learned that my healthcare requires my active participation, my active engagement, and my resolve to fight battles for myself like I could never imagine I would be fighting.
When an insurance company dropped my coverage in my state – I fought to get new coverage. I will fight at the end of this year again. I will be heard.
When I was told that I had to order my medicine from a specific pharmacy – I fought to keep my pharmacist because I believe they are important in my patient journey because they know all my allergies. I will be heard.
When my doctor made treatment plans based off of statistics instead of recommending what would be best for me as an individual, I fired that doctor and found a new one who now listens to me and takes what I have to say into consideration before making a plan. I will be heard.
As much as we are told to stand up and fight for social issues, to rise up and speak against inequalities, and to do the important work to bring justice and equity to all people – I realize that each of us has the right and needs to be heard as an individual in our own personal healthcare.
I will be heard. You should be heard, as well. Let’s fight to make it happen.
Follow Josh Robbins on TWITTER, here
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