One Day at a Time

This is a hard thing to go through. I cannot imagine what I would be going through if I wasn't aware of what I have. This is bad, but that would be so much worse. At least by knowing, and having some idea of the progression and why things are happening, I don't totally freak out on a daily basis. Sure, every single day is rough. Trying to appear normal while you are falling apart is ridiculously difficult. My wife takes the brunt of it, and she isn't happy about it. I have vowed to give 100% and I do, but, to her, I'm simply not the same guy she fell in love with.

I live one day at a time, unsure of what the next day will bring. There is no happy ending here. Last Sunday was the worst day I've ever had. I hurt all over, and touching me did not cause the pain to worsen. It was simply as if every pain receptor I had was saying "I hurt." A hot shower helped some. The next day was much better, and I have not had a return to that level of pain.

I keep a Daylio journal. It is an app where you record something, really anything, daily. It is meant to document your activities. In the app, you choose an icon representing how your day was overall, and then you can write about your day and choose a sub level of icons to represent what you did that day. The daily icon choices are Rad, Good, Meh, Bad, and Awful. In looking back through my entries, I came to realize that what I classify as good, today, would really be a bad day for most people. To me, a good day is when I only have aches and pains, I'm able to focus and work at some level of competency, enjoy a dinner with my family, and maybe cry in private once. That is a "Good" day. The days I record as Meh, Bad, or - like last Sunday - Awful, are things I don't like to recall.

I have an appointment with my PCP on Monday. I don't know how I can communicate how I am doing. His world is generalized tests and two to three-month-long referral processes for a specialist that will only look at their myopic specialty area and not my overall condition. I need something much more immediate and systemic. I