I see many people on social media talking about 2016 being the worst of years for them. There were times I praised it because there were many good things that happened for me. But the last month or so I’ve been confronted with some not so good things that have surfaced to the top of the attention pile. My pros and cons list has equaled itself out.
In my last posting I spoke of my upcoming doctor’s appointment and how I wasn’t going to overthink things or see things that weren’t really there. I was secure in believing they were all natural aging issues. Well, that wasn’t the case, there was more going on than I thought.
I am currently taking the once a day pill Genvoya by way of ‘MAX’ – a Gilead Patient Support Program. The drug is only available and paid for, (so I’m told) to use in Canada through this program. They assured me it was better for my kidneys because my previous prescription, Stribild, was affecting them and it showed in my blood work.
After six months on Genvoya, my kidneys were doing much better but I began noticing many other things happening. Having worked as a personal support worker, looking for things that don’t fit the puzzle was something I was trained to do. I mentioned last time that I had compiled a list to take to my doctor and I almost forgot it by the computer.
I handed the list to my doctor and immediately she had some comments. She told me that 50% of the patients she had put on this medication reported some or all of the same symptoms. What a relief that was, I wasn’t making it up. So now we are looking to change my medications again, for the fifth time. Now I question why I had to go on a “one a day” regime. I was doing just fine on my original script but it was three meds and four pills - big ones too!
The stickler of the this new medication is that I have to have another geno-typing done to see if I will be resistant to it. If I am, there could be complications. Someone mentioned heart problems but I’m not sure how true it is because nothing was mentioned to me….yet! We are still waiting for the results which as we all know takes three weeks.
Another thing I wrote before was the loss of six people who were such inspirations and mentors to me in the work I’m doing. Since I wrote that article the list has grown to thirteen people. This has left me so very emotional that I am actually worried about my own state of mind. I’ve had family members pass and I’ve never been this emotional.
"... titles are meaningless in this work because we all go through a lot of the same shit and it isn’t easy. You can’t just get used to it, there is no normal."
A couple of weeks ago I was a co-facilitator in a Facilitator Training course. During this, there was some sharing of how we were at the time/moment, and we were sometimes asked what we needed to change in what we were experiencing. There were times when I didn’t have to participate or share but during the times I did, I thought I was doing well. I thought I had my shit together - until the afternoon of the third day…
I was the last to share and by then I had been triggered by at least four people before me; I was already drowning on the inside. When my turn came, well I lost it. I broke down and found myself crying my fool eyes out in front of everyone. The mask was off, and I was like a blubbering child trying to explain while he wet himself. When I was done, there was so much support from everyone in the room, and a box of Kleenex was being passed from person to person. I don’t thing I was taking on their pain or their feelings, I was identifying with it. As much as I had empathy of their struggles I learned I am struggling in much the same way and not knowing how to handle it all - all the time.
I think what bothered me most was my belief that some of these people looked to me for strength and leadership. There I was, the facilitator. But titles are meaningless in this work because we all go through a lot of the same shit and it isn’t easy. You can’t just get used to it, there is no normal.
After talking with a very good friend about some of this, I have said it out loud, I own it now and I have agreed to talk to my doctor about depression. I believe I have been in denial for a while now. Some of the things I confessed to him drew red flags and he was waving them.
I mentioned ‘some of the things’ I confessed. The emotional thing doesn’t stop at what happened at the facilitator training, there is so much more going on. I still struggle with controlling anger, and giving forgiveness. I have learned two things though. I have to control my anger for the benefit of my health. There is a trigger for the anger, I know who and what it is so I need to take control and disarm it. The anger led to stress which caused my CD4 to crash in 2010 putting me on medications. I can’t forget my medications and I won’t forget why I take them.
Forgiveness is hard, and something I don’t think I have to give to everyone. Each day that I take my pill, I am reminded of how I ended up on them. I went seven and a half years without needing them. Then one day, I go online and my HIV status is practically trending, thanks to people I trusted with that information. But they weren’t the only ones. People in my family that I was estranged from had found out too and that’s where I lost it, I got angry, I was so angry for several months. The hateful language used by all of them was unbelievable.
I copied the text and saved it for several years. I thought I’d be able to forgive one day and could delete it, but that day never came. I had turned their negativity into a positive and I got involved in HIV awareness work. I had to leave my job for financial and insurance reasons and because of some health issues. I knew I needed to do something so this work was the perfect for me. It's unpaid work, but you can’t put a money value on the rewards.
Over the years giving forgiveness has lost its meaning, it’s not even the issue anymore. They took so much from me, so no I’m not giving them forgiveness. Respect and trust are gone as well, no one just gets that back on demand.
I’ve learned that in the HIV community, many of us have had to live without some of our family members or friends and it’s alright, we always have someone we can turn to. I’m so glad I reached out to the community to meet and share with others living with HIV. I needed more than just my doctor to get this far, now I really am living better with HIV.
The time has come to stop worrying about other people and their feelings, it’s clear they aren’t thinking of mine. If I’m not healthy then I’m of no use to anyone so its going to be ‘all about me’ folks. No apologies, you’re on your own ‘cause I sure am on my own.
May the seven in 2017 be a lucky seven for us all. All the best to everyone!