The Beginning of My Clinical Trial
Hi. I want to switch gears again and go back to talking about the clinical trial I am in. I was terrified of getting a shot in my eye. After all, I suspect we have all heard some variation of “better than a needle in the eye” to describe some sort of painful process and to put things in perspective.
What the eye injection was really like
Well, it was all rather anticlimactic. After spending the days before being mindful and distracting myself from my “fate,” the whole procedure was pretty unremarkable. Two seconds of pressure and it was done. Oh, and I had worse after-effects from errant contact lenses back in the day. I had myself in a tizzy for no good purpose.
There is no guarantee I will have the same experience the next 35 times I will go through this. (It is a three-year study.) There is no guarantee you will have the same experience if or when you have eye shots. This was just my experience and it was not bad.
Of course, I do need to tell you there is a 33.3% chance I did not even have a shot. There is a one-in-three chance all he did was press on my eyeball. In fact, I more than half think that may be the case. I may be in the control group and they may only be pretending to treat me.
I knew this was a possibility when I signed up. They were pretty good at full disclosure. They are running two, experimental groups and one control. Control groups are necessary to be sure it is the treatment causing the effect. It was the luck of the draw as to which group I would be placed in.
People have said to me that, if they knew they were in the control group, they would be upset. They would quit the study! I should insist on getting the treatment! Does not work that way.
Clinical trial benefits
I made my commitment and even if I am not in a treatment group, I will see it through. Once the study is over, if there is an effect and the treatment slows the progression of this disease, I will be offered the treatment. This will be before it is generally available to the public. That is at least something.
Taking control of my dry AMD
I may have said this before, but part of the reason I would continue even if I discovered I was in the control group is this: I am tired of doing nothing. Doing nothing makes me feel powerless. It leads into the victim mindset but I am NOT a victim. Even if I am in the control group, I am doing something of value. I am striking the blow I can strike. I am not powerless.
Seeing it through
Another reason I sort of have to forge ahead? I have to put my money where my mouth is. In another forum I shot my mouth off - so what else is new? - and made a statement. I promised I was going to be the best, damn lab rat they ever had. This is my day of reckoning. Put up or shut up, girlfriend.
I am “putting up”. I spent three years getting into a trial. I am seeing it through.
Are you aware of assistive technology for AMD?