I could make a nice excuse about why I haven’t posted but I’ve flat out just been busy and not focused on it. Things haven’t gone too downhill health wise. My FVC is still above normal and while I’m progressing it’s pretty slowly (knock on wood). It’s easy for me to say slowly progressing but I think back to a year ago and I was much different. I could still get around well without a cane and now I can’t get 10ft without it.
Good news I start a clinical trial on Monday. While I’m excited I’m also a bit petrified by it. There’s no real big health risk but mentally I’m not sure how to deal with a 50/50 shot at getting a drug that could change my life. Many people have stopped progression completely and some have actually gained strength. So how do you mentally prepare yourself for not getting it? Then take into account that if I do get it I’m taking that gift from someone else. It shouldn’t get to me but it’s definitely thrown me off keel.
The second part of this is that this drug currently doesn’t offer compassionate care after the fact. Basically, I would get the drug for months, be taken off to see my reaction for months, and then thrown back into the world. I get it but I think it’s a tragic flaw in our medical process. Personally, I feel that people with terminal diseases should have the choice. If a company is testing a drug past phase 1 it means that tolerance and safety has already been tested. Why not let those needing the drug just take it? I mean the world terminal is pretty definitive. A great flaw we seem to have is trying to protect pharma too much.
I work a lot with pharma companies and understand they are in it to make money but where do dollars vs life get compromised?
Anyways everything else is fairly good. I’ve taken a step back in my compulsion to micro manage at work to limit my stress a bit. It might be causing more stress until everyone picks up the pieces but I’m going to force myself into setting life before work. That doesn’t mean I’m quitting my job. Contradictory to most other people I really enjoy work. I enjoy the rush, I enjoy the control, and I enjoy making things happen. On top of that I just like winning. What I do mean is I’m cutting out the 60 hours a week and the high stress. My body reacts so poorly to it that it takes days to recover. I’ve had a rough month or so and feel like it just drained me.
On the other hand, I fight to be energized outside of work. It’s one of the few things I have left that isn’t limited by what I can do physically. I struggle with yardwork which I loved and we just sold the boat due to it being too hard to use/maintain. Balance will be the key until I find a new hobby though.
Most likely I need something new to tinker with since golf, boating, etc. are out the window. Ideas welcome! I’ll try to update these coming weeks as I proceed with the trial. Doing a lot of praying between now and then so if anyone else wants to throw one out there I wouldn’t hate it.