The basic biology of the virus, HIV, and the disease it causes, AIDS. The economic, social and political factors that determine who gets sick and who remains healthy, who lives and who dies. The progress of scientific research and medical treatments. The reasons for hope; the reasons for fear. (To get a glimpse of some of the materials that students have been posting on the course forums, go to @AIDSFAH or #AIDSFAH.)
04.02 - Richard's Story - Living with HIV
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From the course by University of Michigan
AIDS: Fear and Hope
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From the lesson
Unit 4 - Living With HIV
Not a death sentence, but not easy; More Politics, Sexual Orientation
Meet the Instructors
Richard Meisler, Ph.D.Lecturer
Department of American Culture, University of Michigan
This session is another segment of my conversation with Richard.
He talks about his visits to his doctor, about taking antiretroviral drugs and
about the difficulties he has had in adhering to his drug regimen.
He also talks about his life at work, and
about the new love relationship he has found.
And then let's jump forward to Michigan.
>> By this time, am I right in saying that you had sought medical treatment?
>> Yeah. >> That you were,
you were taking the drugs and so forth.
>> Yeah I had been, I had HIV for about almost a year and a half at that point.
By that point I had gotten on medication.
I was undetected.
And, and that's when I met Fidgit, the person I'm,
I'm still, the man I'm still currently with for the past seven and a half years.
Puts up with all of my shit, god bless him.
He was the reason I left Ohio.
I did a long distance relationship, didn't work out, didn't want to do that again.
So when I realized I had fallen for Fidget, I I basically moved from Ohio to
Michigan so I could be [INAUDIBLE] because he lived in Jackson.
So I'm debating, move to Ann Arbor so I could be closer to him.
>> Mm-hm. >> And
that means I also lost my insurance.
>> Tell us about the ups and downs of your treatment and
tell us what it's like to take HIV drugs every day.
>> Well, I've gotten a lot better with it.
But, back when I first had to start taking them, it became necessary, it was,
it was difficult.
because I only had it for a couple of years, and
I was still, I guess, processing it all internally.
And, and the medication was this representation of what was inside of me.
because, but, in most of my daily life, HIV it is not a consideration.
I cut my finger, I disappear, I take care of it.
My sex life, I use protection you know, when needed.
So it kind of, at that, at that point in time it kind of became a secondary.
It didn't become my life anymore.
But the med, taking the medication meant I had a daily reminder of
what was inside of me of, of the thing coursing through my veins.
And so it was hard at first to take it.
It was hard at first to take it, because it was that daily reminder of what it was.
And lucky for me, Fidgit was very supportive and understanding.
I guess I took it more for him than for me.
>> Did you allow yourself an occasional vacation, not take it for a day or two?
Tempting.
While I have to admit my adherence wasn't optimal, I've, life has a habit and
you forget things that are kind of important sometimes.
I've never chosen, I never, I never, I've, for the most part,
I've never missed a dose due to my own, due to me deciding to miss a dose.
It was more of, because resistance was my concern.
My virus is pretty mutated, and
my options of medication have dwindled over the years.
And so adherence is the only thing keeping me,
keeping the medication working, keeping my my virus in check.
>> So you've had to switch drugs-
>> Yes. >> Because resistance developed.
And as you say, your op, fewer and fewer options exist.
>> Yeah, the, the, the more, the more medication you can't, the more,
less medication option you have can turn into the less years you may have.
>> Mm. >> Because if your
medication stops working for any reason, then you have less to pool form.
And things are getting better,
of course, but for me there's certain medication I can never take.
Certain cocktails that would not work for
me because my virus has mutated beyond them.
>> Whenever we talk I think about how hard you work.
I've often said that you work harder than anybody I know.
>> [LAUGH].
>> And- >> Thank you, Dick, but I-
>> tell, tell us about your job, and tell us about how if any,
if in any ways HIV enters the workplace, enters your work life.
>> You mean my current job or the jobs I've had since then?
because Meyer was fun.
Mine was working at Walmart.
That, that I almost got fired from Walmart a couple of times.
Well, one because of me be, being, my homosexuality.
But I I work, well now I work in a dairy cooler at Meyer.
I juice and milk.
I probably move about five to six thousand pounds every night of freight.
>> Working in the refrigerator?
>> Yep.
Very, it's ambient, 34 degree temperature.
I mean, I go out to break down my live load to bring into the cooler, but
I probably spend three to five hours of my day inside of a cooler.
>> And-
>> It's, it's, it's-
>> Do your, do your fellow workers know about your HIV?
>> I don't know who knows, because at this point in my life, I'm not too,
at this point in my life, I, I no longer care who knows.
I mean, it's not like I'm just going to go up to em and go and hey, I have AIDS!
It's not something I advertise, but if someone overhears a conversation,
a coworker, if, if, you know, something happens, it might slip out for
any reason, I'm not too concerned about people knowing.
I just don't want it to become some kind of like, office spectacle or
you know, I don't want anyone's pity.
I don't want anyone to be terrified of me either.
So I try to be selective of who I directly tell.
But I, I'm not, honestly, I'm not really sure who knows.
That might sound, that might be a bit terrifying, but
it doesn't bother me, honestly.
>> Have you experienced discrimination because of your HIV?
>> I've experienced ignorance where none should exist,
which can lead to people being unintentionally discriminatory.
or, or like the stigmatas.
I mean I haven't been like at my jobs, no.
My bosses are aware of the situation,
because if I miss too many days I can get fired.
And so I have medical documentation.
My bosses are aware of my situation.
I've never had a manager deliberately and directly treat me any differently.
I've had some managers who were more concerned than others about my health and
about my, the location of my work.
But, I haven't felt discriminated within my job environment because of my HIV.
I'm pretty sure people have their own thoughts and things, but
I haven't had anything directed at me recently.
>> As you know, your doctor, Dr. Riddle, helps us out in this course.
>> Why don't you tell us a little bit about what your,
your routine of medical care is.
How often do you see him?
What happens?
>> Leeches.
Lots of leeches everywhere.
>> [LAUGH] >> It's insane.
Well before I became unattentive,
back when the medication was still doing its job, I would go every three
months just to see if the medication was still working and seeing how healthy.
So I would basically go there every three months, have my blood taken.
He'd do a routine physical, you know, ask you how I've been doing.
How my fatigue's been, how my appetite's been, how my adherence has been.
The three things that would mo,
the three things HIV would be most prevalant, something was wrong with me.
Now that I'm undetected, I go every six months just to make sure that this,
make sure the medication is still working.
They do a blood, they do a complete bloodwork and
everything, making sure of my vitamins.
Since I don't get a lot of sun, vitamin D,
somebody checks for checks for my iron levels.
So I pretty much get a barrage of like,
bloodwork done just to make sure everything is working fine.
>> Mm-hm.
Do you experience side effects from your HIV drugs?
>> Oh, yeah.
That was one, that was one of the unfortunate side effects of having,
have side effects of HIV.
And makes it difficult to want to be adherent.
I'm still having issues.
Not they were, most of my issue we're, we're,
with gastro was just, going to the bathroom wasn't pleasant.
It became quite frequent not to go into any kind of details.
So, no I've lot of stomach problems, difficulties going to the restroom,
difficulties not going to the restroom, which kind of became a pain in the ass.
It's a lot more calmed down now.
Plus I, I'm trying to be really healthy with my diet and
eating things that kind of regulate chaos in my stomach.
And most people after a few months, they're fine.
They get, you know, their body acclimates and they're fine.
I'm one of those people where it took my body a long time,
apparently to deal with the side effects.
Every now and then they still bother me, but, yeah-
>> Do I recall that you have neuropathy in your feet or legs?
>> Oh, I, my doctors know what the hell.
Actually, I don't know what the hell is wrong with me, with my legs.
I, I have, for reasons that my doctor has yet to be able to ascertain, for
the past 20 years, god, it will be 20 years this fall.
And it's odd that I remember when they first started happening.
This is kind of how, I get these really painful spasms in my leg,
it feels like someone's taken a knife out of the heat and
stabbed me just in the lower hip area, and it shoots down my leg.
And those happen sporadically.
Those hap,
they usually have a I'm on my feet too long, which at work I'm on my feet eight,
nine hours a day lifting heavy [INAUDIBLE] all the with my legs, my back out.
So I always get a decent work out and
that can agitate this, but I've been woken up from a dead sleep because of them, so-
>> So that's not known to be an HIV related thing?
>> No, it's, we don't know what the hell it is.
>> I see.
>> No, HIV doesn't affect the neurons as far as I'm aware of.
>> And the $64,000 question.
How's your sex life?
>> Terrible, just terrible.
I never get, actually [LAUGH] good.
I have a, have a,
have a very loving partner who, who, do, he, I work nights, he works days.
So our time together is very limited.
So, some time can pass, but I have a very giving partner in that regard,
being in a [INAUDIBLE] relationship, which we are.
So I've had a few other partners who were, who honor me with their time and, and,
and with the pleasure of their bodies, and so my sex life has gotten a lot better.
It's not as great as I wish it was because of the HIV, but it's, it's good.
>> And I take it that you're very careful about protection?
>> I don't want, I don't want to get this.
I don't even want to get this.
This is death.
Well I know, ooh goth of me, but
it, it's, no I don't want to infect anyone with this if I can avoid it.
And so far, I haven't.
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