Wednesday, November 10, 2010

AIDS isn't just a number

In another community I'm part of I was asked a few questions about AIDS. That prompted me to open it up and elicit more questions. Here I've answered them. I found the questions so well thought out that I wanted to share this entry on blogger as well.

This isn't an easy thing to write. This is actually really difficult for me. Finding links worth sharing, making sure I'm passing along correct and factual information when I know full well most of you aren't going to click the links that back me up...nope. This comes down to "Well Sevan told me.." and so...that's pressure. I do my best to be correct. I am adding links you can read those. HIV is something that's always changing, growing, we're always learning more things. However thanks to the Internet...if you go looking'll find articles that were written in the early 90s still up and available! Still appearing to be "facts" and you have to sift through those to find the more CURRENT facts. It's tough. So take that with a grain of salt. I'm human, I'm doing my best to provide you with as much information as I can...and I'm going to try to keep too much of my feelings and personal story out of this. Though that's impossible on the whole. My story does weave in. How can it not?

I want to thank you guys for asking adult questions that were free of hate, full of respect and kindness. I'm honestly surprised. I suppose I shouldn't be. I opened up about HIV a few years back and people were childish and cruel. Not everyone...of course. This time around though I didn't get one. single. hateful question or comment. Not one! Thank you!!

With that...your questions.

I guess I'm wondering what your particular interest in AIDs is.
Great place to start. My interest in the that Cyndi and I both have it.

What are the ways to get tested?
Getting tested couldn't be easier. Planned parenthood offers full STD testing including HIV tests. Your local health department offers free and anonymous testing. You can even buy a home kit and test at home by yourself!!! HIV testing looks for *antibodies* that your body makes to fight HIV. The tests don't look for HIV itself. Because of that we're able to test orally or via blood. I think that the oral swab test gives off the impression that we would find HIV in saliva and that's not the case. Saliva does have antibodies though. The oral swab test is totally pain free and comes back in 20mins! There's also a finger prick test. Little drop of blood that also comes back in 20mins. If those tests come back positive the testing location you've gone to is required to do a full blood draw and send that to the lab to confirm the results. (or at least...that was the way of it in 2004 when I tested positive)

Cyndi and I were tested via oral swab and when that came back positive a vial of blood was drawn and sent off to a lab. We got the results from the lab back two weeks later. I'd like to hope that's been expedited since I was tested...because waiting that two weeks SUCKS.

What's the difference between HIV and AIDS?
They are the same disease, same virus. However AIDS is defined as anyone who has under 200 tcells (per mL of blood). HIV is anyone who has more tcells than that. Tcells are the immune system cells that HIV attacks. HIV virus takes over these Tcells and turns them into HIV replication factories. So they no longer fight the disease...they instead create more of the virus. Nasty thing that. It is possible to dip into AIDS "territory" and spring back to HIV status.

How did you find out that you were positive?
How did you (specifically) get AIDs?
I had sex with my fiance. Simple really.

Are you and Cyndi both HIV positive? For how long?
Yes. Cyndi and I are both positive. We've been positive for the same amount of time. Well...we've been diagnosed for the same amount of time. We don't know when Cyndi contracted HIV but based on our first visit to the dr to check our HIV blood labs it was clear that Cyndi gave it to me and I can just about pinpoint at what time I got it. They say that when you come down with HIV there's a large spike in the disease which causes really nasty flu like symptoms. Not always...but sometimes. I had such symptoms. I was really really run down and we were worried I'd actually gotten mono or something. I broke out really bad in sores, my throat hurt, I was exhausted and was no good.

HIV doesn't necessarily show up in your blood for up to six months after contracting it. (though likely within 4-6 weeks after the risky behavior) I tested negative in Aug 2004 and we both tested positive in Dec 2004. We weren't doing anything risky to really warrant these tests...just thought STD testing was an important part of any physical.

When Cyndi and I first started dating (since this is public I'll make clear...Cyndi is a transsexual woman. She used to be "he" when we first got together. put it shortly...we were having straight sex.) we were using condoms. We were committed to each other and didn't want to use condoms anymore. We went down to Planned Parenthood to discuss birth control options. wasn't recommended to us that we get STD tested before stopping condom use. *sigh* The nurse half heartedly suggested we keep using condoms even with the birth control in place and I was naive enough to not even put 2 and 2 together and understand what she was talking about or why we'd still want to use condoms. I'm very very sad that she assumed we knew about STD testing and were just turning it down. That's not the case. The thought truly never crossed my mind. My only previous adult relationship was lesbian. STDs were kinda the furthest thing from my mind.

We got together in spring. We had a very rocky time...were homeless living in a tent. I would frequently get lunch at a youth center. They were advertising HIV testing for $20. As in...they'd PAY me $20 to get tested. Well...hell ya! I needed $20. So I was going to get tested. ONLY because I wanted $20. They never showed up. It was on my mind after that. We moved around alot, got into some trouble. In the summer I got a UTI and had to go to the doctor for antibiotics. I asked to be HIV tested since it was still kind of on my mind. Cyndi didn't get tested at that time...since I was the only one seeing the doctor. It came back negative. I felt good about that. We must BOTH be negative since we'd been having condom free sex for quite a few months.

December is HIV awareness month and the city we lived in was plastered in "Know your status" billboards, posters ect. Cyndi really felt it appropriate for us both to get full STD screening since she hadn't had any testing done for a few years. That's when we found out we were both positive.

When you were diagnosed, I'm sure you had expectations of how things would be and the doctors must have given you some more guidance. My question is what have you discovered, that you didn't get warned about, or the warning didn't make clear? What surprised you?
When I was first diagnosed....I was sure we were dead. Just dead. We were diagnosed 12-16-04 and we didn't get in to see a doctor until Feb 05. Talk about a hellish wait. We didn't have insurance so we had to wait until we could get insurance and then the waiting list to see the doc was long. We had no idea where to get services, where to turn, who the dr was that we could was a long process.

The HIV center that we finally ended up getting services at required a sit down with a therapist the first visit. They split Cyndi and I up and talked to us individually. The lady I saw was bright and shinny and assured me that they were catching it very early in me and that it's be AT LEAST 10 years before I'd require meds! At least!! She should have never said that. I clung to that number like my life depended on it. Then we were sent for blood work. They drew the most blood I've EVER had drawn in my life. 16 vials. I walked out woozy.

Our doctor wanted us to get rid of our animals...advised us not to have cats because of the liter box...THAT was horrible advice. Telling me I had 10 years was an awful thing to say. Never give someone such specific time line!!'s not a death sentence. I was sure it was.

I always wondered how someone HIV+ could do things publicly, like going in community center pools. Isn't there risk of spreading that through blood or other fluids in a pool setting? Or is that really not a concern? Do you know?
Nope. That's the quick and easy answer. The long answer would be that HIV is surprisingly easy to kill. You wouldn't think so...but outside of the body HIV is susceptible to UV light, can't live in dried blood, is very susceptible to bleach, chlorine and general soap. If a drop of blood were to get into the pool it would quickly dilute and the virus would be killed by the chlorine. Plus...I don't spontaneously bleed. That's not in jest...that's the truth. There is a risk of me cracking my head open or harming myself in some way that would cause lots of bleeding....but then we would just use universal precautions, get people out of the pool, let the water run through the filters for about a half an hour and then we'd be ok to get back to swimming. These are universal precautions. This is what would happen if ANYONE bled into a public pool.

There seems to be a rather common misconception that because I've got HIV I must just randomly bleed more than HIV- people. I don't think people actively think through that...but I've been asked similar questions before. For example...when I was in massage school my mom (who's an RN...) asked me one time if I would be wearing gloves to protect my massage clients. No. That wasn't necessary. Even if I DID have some sore or opening in my skin that touched a client (I ASSURE you I was very careful to keep my skin well moisturized and I checked regularly to make sure I didn't have so much as an exposed popped zit.) they would have to also have an opening in their skin.

How common is HIV, and AIDS?
Now that is a good question! And I have no idea. No one knows. It's guessed by scientists that it's WAY higher than we currently know though. The problem with HIV is that it's often symptomless. It can go on like that for many many years before you become very ill. It's also rather easy to just brush aside any symptoms you may have as something else. One of the highest risk places that HIV is spreading is actually in elderly residential facilities. Viagra has helped people...have fun longer and later in life..and they aren't accustomed to condoms nor do they want to wear them! Since HIV symptoms mostly mimic common aging's missed frequently in the older populations.

There are many people who just don't go get tested because "HIV isn't going to effect me." but one thing I know about HIV is that it simply doesn't care who you are. It doesn't matter if your rich, poor, black, white, tan, female, male, gay or straight. It just doesn't matter. Anyone who has sex...could get HIV. Just because YOU are committed to your partner doesn't mean that they are as committed. You also have no idea where your partner has been before getting with you. There's no way to know...without getting tested.

So sadly I can't say how common it is! Much more common than we currently believe I think.

Does HIV shorten a person's lifespan? If so, by how much?
Hard question...but it's thought not. Depends on when the person was diagnosed, what strain they've got and what they do with themselves. Taking good care and having good doctors goes a long long way. Sad but true. People who don't seek help, don't take their meds on time...well...they're gonna have a really really tough time. People who adhere to their meds, have a good working relationship with their doctor team and keep their numbers up have a good chance at living as long as HIV- people.

What annoying or debilitating symptoms are exhibited by AIDS sufferers? You know, day-to-day crap that has nothing to do with the moment you contract the disease, other diseases, or meds you have to take. Unless most of those things are medicinal side effects.
The symptoms range from none (lucky I kid..kinda.) To diarrhea, neuropathy (pain and tingling in the feet and/or hands), IBS (Irritable bowel), poor sleep, secondary infections, pain, odd fat distribution (not seen as much anymore...but many people used to have sunken in faces, thin thin arms and legs and pregnant looking belly's Particularly difficult to deal with in women....) confusion, "HIV related dementia"...and now we're seeing many people who are over weight and dealing with diabetes as a co-infection!!

It's really really hard to say what symptoms are from the HIV itself and what symptoms are from the medicines. The meds are nasty. No ifs ands or buts about it. That therapist told me I had 10 years before I needed to start meds. That was vastly wrong. I had to start meds three years after being diagnosed. I was on the couch with extreme fatigue, nausea, stomach woes and a touch of dizziness. For MONTHS. I finally started acclimatizing and have been able to get back to work and really not suffer much from any side effects. However...we believe the meds are to blame for some of my pain (and alot of Cyndi's) perhaps some of my confusion (though fibromialgia has the whole "fibro fog"'s very difficult to say what's fibro and what's HIV) and definitely the nueropathy both Cyndi and I deal with.

If you are HIV+ does the medication you take stop it from spreading to other lovers you may have?
If you end up with a non-HIV partner living with you how will you protect them from the disease?
Condoms work!! They really really do. Promise. When used correctly...they work! They don't just break because a person is HIV+. They don't. They really do protect against HIV! I'm not saying that to be trite or insult the question asker. Not at all. I actually get this sentiment quite a bit and it's so frustrating. Somehow knowing that I'm HIV+ means that a person should avoid all contact with me? Please oh my goodness no!

Also we've discovered something in the last few years. The purpose of taking HIV meds is to kick the virus down to a place where it can't mutate, can't replicate. We prove that that's happened by getting blood drawn every three months. We can see that the meds are working if the blood work comes back at an undetectable level of HIV virus. That means it's so low that they can't even count it in your blood. That means your risk of transmitting is very very very low.

Studies have been done about this...because we want to know...just how undetectable IS undetectable? Does that mean cured? No. Does that mean non transmittable? The studies are saying...yea. Looks like it. Looks like in these very specific circumstances...the *sexual* risk of passing HIV on is very very low. There's always other risks. Blood risks are still in place somewhat. Any loving couple needs to have this talk. Needs to be frank and communicate and research together, visit with the doctors and discuss the risk of the individuals. How adherent is the HIV person to their meds? What other risk factors are in place if any? What other infections does the HIV+ person have if any? All of these things need to be discussed in very honest ways. Through commitment and honest communication people can remain safe and HIV free. Link to article about that study

For quite a while I considered only dating HIV+ people. I thought that the possible risk of transmission was just too much. I thought that no one would love me with HIV. I now think that I just need to keep my mind open and keep educating people and that the right person could possibly come along. HIV+ or HIV-.

I've heard that i should start taking antivirals even though I'm still negative since we are trying to get pregnant have you heard about woman doing that, and do you know if i should start now or once I'm pregnant (if i can :o( )
It is possible that I could answer that...but I feel that I would be taking on some responsibility regarding your choice. I believe it's between the individual and the doctor. We as patients must educate ourselves and do what's best for ourselves. We have to fight to be seen as individuals. This one that mutates. It's one that effects people extremely differently. We all get different secondary infections which has greatly different effects and interactions. We all respond to meds differently. We *must* be seen as the individuals that we are. We must demand individualized care. As such...we must take control and responsibility for ourselves.

You need to look at your spouse and his ability and likelihood at remaining undetectable. You need to think about your own immune system. You need to become partners with a doctor you trust. Emphasis on the *trust*. I believe many doctors suggest anti virals during pregnancy and not attempting to get pregnant until the HIV+ partner has obtained undetable status. I'm pretty sure there is another camp that doesn't find it necessary to have a pregnant HIV- person on anti virals.'s individual and I don't think I can answer that in a broad kind of way.

I am curious about HIV treatments these days. I know (or at least my understanding is that) people who respond well can live quite healthily (omg I don't think that's a word) for a very very long time.
as far as the current science, what is the future for treatments? I've heard of a vaccine, but I don't know anything else.

Vaccine talk will pop up with frequency. Never too firm...and always FOREVER away. *shrugs* They are doing some great things with meds. Lots of new types of meds, lots of one pill you can take your entire cocktail in the form of one pill...that's awesome. We used to only have three classes of drugs now there's five (I think) so we are coming along with new stuff all the time. The newer drugs do have better side effects. We've seen the fat redistribution almost completely wiped out. That's an older drug issue. So we're doing some good things...

what is your opinion on the fact that it is believed that a vaccine is actually ready to be marketed, but that pharmaceutical companies are in cahoots with governments to not release it, as it is more profitable to sell all the meds long term instead?
*sigh* Oh vaccine to article about vaccine process Let me just tell you how much my meds come to. I've got one medicine that's $1200 a month and two others that cost $700 a month. That's JUST for my HIV meds. The whole "cocktail" method is highly lucrative. The cocktail is how we keep things under control. We need to take three different medicines from three different classes of meds for optimal effectiveness. They all attack the virus in different ways.

I have heard about different natural methods that are HIGHLY effective against the disease but they never gain any ground. For example...there's a method of taking your blood out of your body and running it under a UV light, then streaming it back into your body. HIV is killed by UV light. I do not know if this is a *CURE* or simply a valuable treatment. HIV virus does have a really awesome way of hiding itself for later. I know that I have HIV virus in my bones and my marrow. I can't get it out of there. I can clear it from my blood and my sexual organs but not my bones. Too deep.

Compare the cost of tubing and running that machine vs the cost of my meds. Oh good god yea. It's not even funny. Also add in that the religious right that feels they should be able to control what EVERYONE does in the privacy of their own home...legislate sex ed, legislate who can legally have sex with whom...AIDS being around and being scary TOTALLY lends itself nicely to less orgys!!! *rolls eyes* If we get rid of god!!! Women will just be dropping their panties everywhere!!! Do you remember a few years back when the HPV vaccine came out? Senators were up in arms because this would mean that our young girls wouldn't fear sex and they'd be out having rampent sex because of the lack of fear of HPV anymore!!!! Yes. I FIRMLY believe that a vaccine and cure is being kept from us. I firmly believe that.


Ok..*whew* It's interesting. There's some things that I'm sure I'm missing. It's such an all encompassing issue. I didn't even TOUCH stigma! No one I directly work with knows. There are a great number of people walking around with this disease...and they've told no one. You could have friends who are living with this..and they don't want to tell you. Mondo from the most recent "Project Runway" has been HIV+ for 10 years and has never told anyone. Not even his family. He came out on the show. The shame runs deep. Makes it rather...uncomfortable that I recieve services from social workers who know I'm HIV+....and they're also my co-workers. I've got to hand it to them...they take HIPPA very very seriously. For that I'm EXTREMELY thankful. I don't know how to express the DEPTH of that "I feel like a leper". I can't tell you my own ingrained fear of bleeding. Completely irrational.

The day I recieved my diagnosis....was traumatic. It was such a big deal...that the dr who gave me the news...cried. She was in such shock she didn't know what to say. She didn't know how to say it. She had to call another doctor and ask advice on how to tell me.

However....there was a time that I knew everything about this disease. I was up on all the latest drugs, all the interactions...I read the studies, visited the forums...there wasn't a single day that went by that I didn't think about HIV. I was sure that was going to be life. I couldn't concieve of a day when I could relax and actually forget what my most current Tcell results were.

I'm proud to say that last year for the very first time my diagnosis anniversay went by without me noticing. I do not currently know what my last Tcell results were. I know I"m doing good, I know my viral load is STILL undetectable as it has been for close to a year. And I do have days where I just don't think about HIV. I really really hope for a day when I can put it entirely behind me...and talk about "That time when I used to be HIV+, but I'm cured now". Yea. I HAVE to look toward that. When I can throw away my meds and move on with life. It may be better than it was in the late 80s, early 90s....but we've still got a ways to go.


Sandra B said...

good post, thanks for the info! i love you and cyndi!