I'm apologizing because I have written about this before, but I have to repeat this statement: "I have HIV, HIV doesn't have me."

Far too many times during the last year or so, while attending workshops or peer groups I keep hearing some of my peers say, "since I became HIV" or "I am HIV". I wait and hope to hear the word "positive" follow each of the phrases but it never comes. I'm at a loss to think of how they meant what they said or the way they said it, so I just listen and accept what I've heard.

I was at a workshop for Speaker's Bureau about a year and a half ago. We had to do a collage that showed what we were feeling about our diagnosis, who we were and our story. I couldn't find pictures in the magazines to say what I wanted to, so I drew something on the piece of paper. When it was our turn we were to hold it up and let everyone see if they could tell what we were feeling, what was going on.

I drew a picture of a very large box. It had a small square chuck cut out of the one side. Next to it was a "stick man" holding the small square chunk. As I showed it around the room, people thought it was a coffee machine and I was holding a cup of coffee. After everyone finished trying to figure it out I proceeded to tell them what it really meant. The bigger box represented HIV, I was the stick man, I had the small piece of HIV in my hand and was controlling it. If HIV had me, I would have drawn myself inside the big box.

For over 30 years I worked in a factory - and I felt I was nothing more than a factory worker, I had no desire to be anything more, I was content to have that weekly paycheque. Other than being a father and grandfather, at times I felt I didn't have much of a life, there wasn't much to me. During the last four years I did that work I was HIV-positive. I didn't need medications so I never worried about my health, I just went on with the life I had. Since I've been out about my HIV status and got involved with my ASO, I learned so much more about myself, I am doing things I only thought about before. My status has changed my life, but it isn't nor will it ever be, all there is to me.

Today, I am me, I'm a son, a brother, a cousin, a friend, a father, a grandfather and I will be a great grandfather someday. I'm a co-worker, a volunteer, a blogger, and I'm an aspiring artist/photographer  - or should that read photographer/artist? I'm an advocate for HIV, I have put my face and name out there to hopefully change the stigma we live with.

I will always try to do this as a volunteer project, I'm not going to lead the pack but I will do what I can to help in all areas I am able to. I recall a quote from Wayne Gretzky that went something like, "no one is bigger than the game". I believe that the more people who have the courage to come out, speak up and put a face to this disease, it can only help us all. I just heard a new mantra that I liked a lot, "None of us are as strong as all of us".

It disappointments me sometimes when I meet or hear about someone who is newly diagnosed and wonder what the last thirty years didn't do to prevent this? I keep being reminded of the barriers we have in front of us. There is only so much society will let us do, and this is what’s wrong in our real world.

So now when I hear my peers using those lines, I know I'm always going to want to yell out "positive" to the end of those sentences but I will continure to not judge anyone. We all deal with HIV in many ways, no two stories are the exactly the same. I am just going to listen, validate their statement and respect them for the courage it took to share.

I will never let fear rule my life or ruin my happiness but, let me tell you, fear has had its moments in my life.

The first time I was asked to share my story was several years ago, at the University of Guelph for about 100 students in a sexual behaviours class. Just walking into one of the lecture halls, it was like stepping on to many movies sets. It was intimidating for sure. Seeing all of the students filing in one by one, I started to get nervous.

Lucky for me, there was one other speaker and she had been doing it for many years. So, I got to watch someone with experience. I could feel my heart pumping as I waited my turn. There was a microphone that was supposed to clip onto our shirt but it was broken. We had to hold the little thing in our hand. I hoped I wouldn’t drop it. The students were told that they could ask questions after each of us spoke but there may be some questions that we might not feel comfortable answering.

After about 45 minutes sped by, it was now my turn. I grabbed the mic and introduced myself. I was surprised it was going so well. I had stopped most of the shaking and my voice became more clear as well. I noticed some of the students writing things down so I was expecting some questions. I know I should have shared more but under that type of pressure, for the first time, I wanted to tell it honestly without having notes or reading it. This is where the questions helped.

I don't remember all of the questions but one in particular had taken me by surprise, It made me really think. "How would you feel if you were in a situation where the condom broke?" What a loaded question! At the time I didn't have an answer. I could only say that I knew my status and I would do whatever I could to protect my partner. I knew that I didn't want anyone else to have to live with HIV. I may not have disclosed to the other person but I wasn’t going to do anything risky and always used protection.

Today, I can say that I have been in that situation. I have had to deal with that fear and, yes, it was a fear of mine. I was out to the bar with someone and we had had plenty to drink. We ended up going in different directions part way through the night. He was into drugs and I wasn't, so when that crowd was around he would disappear. About four in the morning he finally found his way back to the apartment.

To make a long story short, I should have refrained from having sex that night. He was stoned. During sex he kept taking the condom off me. By the time we were on the third condom, it broke. He was aware of my status. For me it was over, he wanted me to put two on and continue. I immediately said no to that. To top things off, I was holding some of his money so he wouldn’t blow it all in one night. He was just trying to satisfy me so he could get me to give him some for more drugs. I wanted to talk about what had just happened. He just got up and said it didn't matter and he left to go back to his other friends. For the rest of the weekend, I tried to advise him that he needed to go and get tested. I even spoke to his roommate about that. I had to know. 

Because of his drug problem, we didn't continue seeing each other much after that night. I have tried to keep in touch with him but was only able to contact his roommate. I learned that he has been tested twice now and he was HIV-negative. I have to say, this was the most traumatic thing I've had to endure since testing positive, waiting to hear the results of his tests. He, however, just laughed it off and said that if I had infected him  I would be stuck with him the rest of his life. 

As I write this, I ask myself what if I hadn’t known my status or what if I were negative. Would I have been so afraid? Should I have been? I hope my answer would have been – “yes!”

When I started blogging, I wondered if I had anything to say. Over the last year and a half I’ve learned that I have inspired others to do it as well, so I guess I did and now I feel I haven’t given up my torch but I have lit the torch of others. 

It was a raining when I woke today, yes, at12:21 this afternoon. Lazy? Maybe, but as I wrote recently, I have a new medication that is helping me get more sleep. Some days I have to set the alarm to get up and go help my mom who isn't doing very well. On those days I tend to be a little groggy because of the meds. I just want to crawl back into bed. By the end of those days I crash and if I don't have to get up early the next day.........I don't. 

Today, I am in another of my funks where I can't find much to write about. I have had 65 of my blogs published here on PositiveLite.com and another 20 for  the AIDS Committee of Guelph so it gets hard to find topics that I haven't already covered. Sometimes the editor (Bob Leahy) here will suggest a short list to me, and those suggestions have produced some of my posts. Another source of ideas I draw from is from other writers here, or people I find on Twitter. I read everything that gets published here and sometimes I will follow the writers’ personal blogs as well. 

Living with HIV, we all have our stories and I believe it’s important to share them with others. We may not connect some of the things we are experiencing to be a symptom of living with HIV. When someone else writes about an issue I am experiencing, often I find myself saying, "yeah that is what I see happening to me". I could search the internet for the information - there are many great sites for HIV - but I think the best teachers are people living with HIV. 

Because of my age, I tend to search more for information concerning HIV and aging. I try to find out as much as I can and share what I am experiencing. Many of my issues can be attributed to the normal aging process, like the hair growing out of my nose, on the tips of my ears, the eyebrows climbing up my forehead. Those things can all be controlled with many of the new grooming gadgets out there. The aging that goes on inside can be sped up by HIV.  I need to take stock of everything and anything and report it to my doctor. Sharing it online with other HIVers I can get some feedback and more personal information and support. 

Lately, through social media, I am finding many new bloggers and activists who are much younger and many are women. A few of them have joined us here on PositiveLite.com as well. Their contribution is a good thing because many of the new infections are being found in those two groups, young gay males and heterosexual women. As I read what they share I see where I was two years ago,

I am assured that as I pick my battles, there are others willing to take up the fight to end stigma, try to stop further infections of HIV and inspire others to join them. There can be a downside to it, some are facing a lot of messages of hate and stigma directed to their social media sites by ignorant individuals who have nothing better to do. I’ve learned to respond to it by saying, “If you’re going to insult me, please do it intelligently”. 

I will continue to carry my torch, maybe it will be a smaller one, I know I have lit the torch for a few others and it has been expanding from some of those people. If more people can find the courage to come out and tell their stories, it will only help us all. 

A plug for PositiveLite.com here, They are always looking for new writers. I started here over a year ago, there were maybe a dozen people writing. Since then we have been through two sizeable growth spurts. PositiveLite.com is now Canada's best online HIV magazine for and by people living with HIV. There are more than 20 writers now and there is new content each day. Much of it is "you're seeing it here first" articles.

I really appreciate them taking me on and encouraging me to do this. It has helped me in more ways than I could have imagined. I have learned so much from everyone involved here.

Well look at this, I started out with nothing, or next to nothing but I am just finishing up my 66th post. Now what will I write about next?

Recently I received an email from one of the ASOs that I'm involved with. It was forwarded from the Waterloo Region Rainbow Coalition, who are looking for artists from the LGBTQ community to display their work at their "Dialogue on Diversity" event to be held June 14, 2012.

I read it and re-read it and pondered. Should I?  

I am a hobby photographer, I do it for fun. It gets me out for some exercise and I get to test my creative abilities. I’ve also met several other photographers from the area, so now it has become a bit of a social thing for me. Sometimes I feel that some of my photos are good but I have never felt confident enough to enter them into a show  – and not good enough to give up my day job.

I have a friend who I think is a great artist, whom I met while working in a factory many years ago. One day while at his place, I saw he had some of his artwork sitting on a table. I was so impressed that I told him he had to show his stuff, I really liked it and I just had this feeling that many others would too. He took my advice and within a year he was showing it and selling pieces. I even bought one for $150. Several years later he entered a "World Art Show" and he was the only Canadian to get even an honorable mention.

This little story is important because I see how family and friends have been giving me similar advice for the last couple of years. So I filled out the application, selecting four photos, and I emailed it off before I changed my mind. I’m only allowed to show them, not sell them, but I can have contact information with me if someone wants to buy one later.

I've printed the four photos up as 8 X 10s, I picked out some amazing frames. Lucky for me I have connections so I was able to get it all done fairly cheaply, without them looking cheap. Now I need to find someone with knowledge of making up businesscards. I guess I could give it a try myself, hmmm.

In other news, I wrote some time ago about a photo of mine that a local artist wanted to turn into a piece of art. She calls herself a "thread painter", using pieces of cloth, thread and a sewing machine to make her creations. She liked my picture because of its abstract appearance, and she wanted to do something like it.

It was a long time coming to reality but it’s finally done (see above). She warned me it would never look identical to my photo, that my photo was just the inspiration. She will be including information about me and how the picture was taken. The artwork is being shown in an art gallery in a nearby town, I will be going to see it and meeting with the lady for the first time

As for other photo opportunities, the AIDS Committee of Guelph will be running a new program called Project Attach and part of it will be a workshop dealing with photography, homophobic graffiti and graffiti that sends positive messages. Our first orientation meeting will be June 27^th and is open to persons regardless of sexual orientation, age or HIV status. LGBTQ youth under the age of 24 and persons living with HIV are being encouraged to sign up. I’m really psyched about this project, I’m glad they asked me to be involved. 

I’m having success with two new meds, One has helped me improve two areas - walking and sleeping, but is it just a temporary fix? The other medications? Well, read on………

At my last doctor’s visit I was telling him again that I was having troubles when going on my hikes. After walking long distances or standing in one spot for long periods of time, it felt like I was standing in bare feet on a bed of stones. I would always have to shift from one foot to the other to take the pressure off and get a little relief. He said it could be peripheral neuropathy which is a common condition for people living with HIV. (PositiveLite.com editor Bob Leahy wrote about his experience with neuropathy here  and now Dave R.,an expert in this field, has wriiten about the topic for The Body.com and PositiveLite.com here.) So my doctor prescribed a new medication.

The medication he prescribed is Elavil, a drug used many years ago to treat depression. He said the dosage I was getting would be a small fraction of the amount they used for depression. I have no idea what that dosage was; what I'm taking is a 10 mg pill. When I started it, I was to take one tablet at bedtime for two weeks and then take two tablets at bedtime after that. There are some side effects that I have experienced like dry mouth and constipation but that can be better than the other option - well most of the time. There is one good side effect though -  I'm getting some very much needed sleep, I can roll over and nod back off for another hour or two. As for the neuropathy, I can now stand without so much discomfort. Walking, well, like I said, I have other issues with my ankles, but I can walk longer distances now and it no longer feels like I’m walking on stones.

So the medication is working except for the aches and pain in the joints of my ankles, thanks to normal aging. I also have different issues with my left foot, I smashed it on both sides back in the early 80s which resulted in having a plate with five screws on the outside of the ankle and a big long one on the inside. They were removed about a year later, so there are times when it bothers me in other ways.

The extra sleep?, I can’t say enough about how it is helping me. I use to be up all hours of the night, going to bed around 3 a.m. because I just wasn't tired. Sometimes I felt tired but would go to bed and just lie there and not be able to sleep. Now, I can go to bed much earlier, I try to watch TV for a while but nod off quickly. I have to drag my butt out of bed around eleven the next day and I feel much more rested. I am not a groggy person who hates to get up, I’m usually in a good mood except when I wake up in a strange bed. By strange I mean in a hotel whenat a training workshop or conference, or when I’m visiting somewhere.

The only drawback to the Elavil is, and I’ve only heard this from others who have taken this type of medication, it may only work for a while. One day it might not work anymore.

The other new medication I have is for my calcium problem. I was taking Actonel, a once a month pill along with Vitamin D3 and Calcium that were to help build up calcium. I have next to no bone density in my spine, as of my last bone scan. The other bigger bones in my body are good. The doctor felt the Actonel could be a contributing factor for my acid reflux/heartburn problems so he changed it to Teve-Risedronate 35 mg, a pill I take once a week. This too has helped, I'm having less incidents of acid reflux. I have stopped eating or drinking certain things before bedtime as well.

I really didn’t like adding more medications to the mix but the relief I’m having, even if it may be temporary, has made me do a happy dance.