I haven’t posted in a while. It’s been a pretty wild couple of weeks. I’ve written but not felt like sharing. So many things have been going through my mind and so many events have taken place.
I was hoping to have my next post be about starting a clinical trial. Everything was ready to go but it appears I have some liver issues right now. Heading to a GI this week to hopefully see some improvement but things got a bit scary last week with my ALT & AST levels going up over 500% in the last month. Just hoping it’s because of an adverse effect to the riluzole but regardless I’ve been taken out of eligibility of trials until I get within normal. Not going to lie it really knocked me down but I feel like it’s God’s plan and I just need to see where he is pointing me.
Thursday, we went to an ALS Jazz concert and while I was having a bad day it ended great. It was our dateaversary. Not sure that’s a word but 5 years before we met at a restaurant in Durham for our first date. We ended the night at the same restaurant. While my health is weak our love is stronger than ever. We’ve been through a lot in the last year and my wife is my rock. Without her I have no idea what I would do.
Then there was the talk of finally talking to my kids about the ALS. I vaguely remember that exact conversation with my father. I never really processed it and not sure the children really did either but they took it very well. Everyone in the house has a fighting attitude and I couldn’t ask for more. We all cried, we all hugged, and then the next day we had the ALS walk in Raleigh.
To be honest I dreaded the walk. Not because I don’t want to support the cause or others but because I hate feeling exposed or weak. We had a wonderful turnout and to the eyeball it appeared there were about 5000 people in attendance. Our team probably had 50 walkers some of which I knew and some of which I met for the first time. The outpouring of hope and positive attitudes were incredible. We made it probably 80% of the walk which is farther than I thought I’d ever make it. Somedays a trip to the mailbox seems daunting so doing a 1.5 mile plus walk up and down hills after 2 hours of standing felt great in a painful way. I think I wanted to prove to myself a lot and I felt good about it. Today however I feel like I could stab myself in the legs and feel better. I used to hate leg day when I was healthy and today is like that times 1000.
Regardless the event raised over $400,000 and our team pulled in a nice haul of over $14,000. I left this blog last time in a rather terrible mood and hoping I can get through these challenges and get a refresh. Seeing all my family together this weekend was definately a great start to that.