31 March 2011
On February 27th 2011, I reached and celebrated my 10th year with HIV.
It’s been a while since I last updated my HIV/AIDS results page, which I guess some will take as a sign that all is well.
And you would be correct.
I’m happy and healthy today and full of positivity, humor, love and light.
I’ve never felt stronger nor have my feelings for the future ever been this inspiring. My family is wonderful and my relationship continues to bring the challenges and gifts that most do.
There are many reasons for my happiness, the most important one being that I started my ARV therapy a while ago and the results have been amazing. I was waiting for my drugs to take hold before I wrote about the experience. Before I stopped taking my drugs, my virus was undetectable and had been for five years. So a drug holiday made sense to me.
So this was my second time starting them and I was nervous about side effects and my sleeping patterns being affected as they were before when I was on the ARVs. But this time, I had no problems with my body adjusting to the medication and the side effects were very light on my system.
I take my drugs every other day. I do not nor have I ever taken my HIV drugs every single day as I and we are told to do.
I DO NOT encourage you to do this without seeking your doctor's advise and consent. Everyone's circumstances are different and at the end of the day your doctors know best. But do mention it to him/her and ask if it's feasible in your situation, just like I did. When I mentioned it to my own doctor, he told me to do whatever I felt comfortable with as long as my numbers remained stable and my undetectable status stays the same. Taking my pills every other day DID NOT have an adverse effect on me. My HIV is UNDETECTABLE and I have been taking my pills every other day for many months, since the beginning actually.
I’ve always worried about the constant onslaught of HIV drugs on my system. Taking my drugs every other day was MY decision and I’m thrilled I made it. I withheld 1,477 pills from going into my body and yet I still managed to have my HIV undetectable status. My organs are thanking me I’m sure. I will need them all in tip top shape for the future!
When I started the combination therapy again, I remember obsessing, wondering, and asking myself, “Had I fucked up by stopping them when I moved from Australia to Canada?" HIV positive people hear stories all the time about how you’re NOT supposed to stop taking your pills. Back then, I really had to take control over my life and part of that was starting fresh with no worries about my drugs and keeping them cool while I traveled with my boyfriend.
My drug holiday meant taking away the daily reminder that you are indeed different than everyone else around you. You have HIV and the handful of pills remind you of that everyday you put them to your mouth.
It can get very distressing and depressing.
I nearly forgot that I have HIV while I was off my medication.
It was wonderful.
It was truly wonderful.
When I made the decision to stop them I said, “Fuck it”. I thought, at the time when my life was so hectic, that finding a fridge just to keep my medication chilled while I traveled throughout Asia would be a nightmare. I was tired, depressed and about to travel but my body was rock solid and I felt healthy despite my hectic life.
So I stopped taking my HIV drugs because I WANTED to stop.
I felt a need. A strange feeling, almost like I wanted control again over my life.
And the sense and feeling of being ‘undetectable’ certainly offers you that springboard you require to leap forward into a pill free existence, something that I thought at the time was manna from heaven.
I also WANTED to give my 150 pound body a break from the drugs I was on while I was still in my thirties. Sleeping was difficult with the medication the first time and I just needed to sleep so badly. I wanted to give myself a break from having to think about the pills.
Pills = HIV I thought.
And they still do. However, I feel different now about the medication than I did before I took a break from it.
Fuck HIV and the medication I remember thinking back then. But now, I feel great about them both being together once again.
One cancels out the other?
We all hope and pray.
I just want to be healthy and happy.
My pills are making me happy this time. Maybe it’s because I’m older and I don’t feel so brave. I need the security of being undetectable more now than ever. When you get married, things change dramatically inside of you. Suddenly you are not the only person who needs to be considered when it comes to your health, happiness, and future in general.
I’m still comfortable about having made those decisions to stop my medications before I came home to Canada. However, as a result of this decision, within a year after stopping my HIV drugs, my HIV virus was no longer undetectable as it had been five years. It was once again bombarding my system with great effect. And my CD4 count and viral load numbers reflected that. The first was very low and the second was very high. It really sucked. Fucking virus.
My fabulous ARV drug holiday bubble was suddenly burst and I was once again drenched in fear.
Although I'm ok with all of my HIV therapy decisions, I knew it was time that I start them again. When you are told that your virus is again detectable, your life is jolted back into your HIV reality. Your entire world shifts once again, and action MUST be taken immediately. You just feel it. You want to live.
For a long time.
And when the day comes and you are told that your virus is undetectable, you want to keep it that way.
For a long time.
And so I took action and now I'm back on my new ARV therapy. And once again after some time, my HIV is undetectable. It took eight months for my numbers to get back to normal. Now I have a solid set of results I can hopefully take forward with me for another five or so years.
I’ve recently had my eyes thoroughly checked by my ophthalmologist and the results came back with perfect 20/20 vision with no signs of trouble. I’ve also had my hearing checked, my teeth cleaned again (4X a year).
I somehow managed to stop biting my fingernails which was a life long habit. I NEVER thought I would ever stop biting my nails. But I did. It truly is amazing. One of the biggest achievements of my life and only a chronic nail biter would relate to the pain and suffering involved when one tries to stop such a habit.
The drugs will keep us alive.
But don’t forget they only work if we take them.