"Never go to a doctor whose office plants have died."
We'll start with the dreamy, looking back part of the movie where everything goes bleary and wavy and the past is reviewed - or we witness a nightmare.
This would be the latter...
My specialist wanted me off Tenofivir because of bone density issues. He put me on Etravirine and Dolutegravir - both of which he assured me are well tolerated. He was incorrect, at least in my case.
I spent three long weeks dealing with debilitating nausea that would last anywhere from five to eight hours with light-headedness for two hours first thing in the morning. What fun!
I'd called the hospital pharmacy for information, called the nurses' line for information, talked to friends and whined a lot. I was not good company.
After the three weeks I decided that enough was enough. I clearly am one of those people that don't tolerate those meds and I couldn't live that way anymore. The day after stopping the treatment I felt immediately better - a little left over nausea, but not the wonderfully vicious kind that made me want to cry.
Flashing forward...The next step was to see if I could get back on my old meds. While there's a risk of bone loss, I know I tolerated Kaletra and Tenofivir well: my counts were all good and I could function. But getting back on old meds is not as easy as you might think (at least not in BC). The pharmacist had to fax the doctor, the doctor had to submit various forms to the BC Centre for Excellence and I had to wait.
On top of that the good doctor was on holiday with no replacement, so the process took even longer. Then I had to call the doctor to explain something about some special request that I really didn't understand, and the receptionist really didn't understand and yadda, yadda, yadda... What the hell do I know about forms and crap like that?! It's not really my job, but I did learn (at least a little).
Then the doctor called me and while he was open to making the switch, he wanted me to "experiment" by taking the Dolutegravir one more time, which I did. And while we learned that the medication was the culprit, even that one last day of feeling like a pile of dung was enough to put me off meds altogether.
Finally the old meds were re-ordered and I'm back on track - until the next time he wants to change them. But this time the difference will be my well-deserved scepticism and fear. I won't go through that pain and suffering again.
I think I learned a few things from the experience. A counsellor I had would ask "what's the gift in it?" The gift is that I understand a little better how some people simply give up on meds and want to get away from them. I have greater sympathy for those people now.
I also learned more about "the system" - how things can fall apart and as a patient/guinea pig, we are often left to our own devices to solve the problems we encounter. It's not an easy task and it takes a lot of thinking to work through it. I suspect most people don't have the internal resources to unravel the puzzle. Again, perhaps some people would just give up - either stopping the meds, or continuing to live in anguish and pain.
More and more, we have to learn how to push our way through, understand our limits and know when to say "no". We have the power to do that, it's exercising that power that can truly build our self-confidence and self-esteem. And we often have to do that against a brick wall of a medical community that thinks they know best when they're really just making calculated guesses.