Once a Runner

One of the hardest things to accept with PNH has been my inability to run more than a few yards without going into oxygen debt. Of course that applies to even trying to walk fast. Running has been a part of me most of my life, over 60 of my 74 years in fact. Not being able to do it anymore is depressing to say the least.  I still try to do races when I can by showing up and doing what I can. The reality is that I can’t do much. I try not to sign up until race day now because I’m just not sure how I’ll feel when it’s actually time to show up. I’m still going to try to get the last 10 states that I haven’t raced in yet but it’s pretty iffy. Right now my plan is to finish the last 8 in the continental US by  June! We’ll see 🤷‍♂️ Another reminder of how much I miss running is everywhere I drive I see places I would have loved to run when on the road and facing the realization that it won’t happen.  Oh well, enough whining. I’m sitting at the VA waiting for a follow up with m...

February 28th was National Rare Disease Day so what better way to “celebrate” that than to get a CT Scan to find out if I in fact have a second rare disease.  I went in to see the GI doctor because my digestive system has been really screwed up for over a year. Blood work showed that I have  ModeratePancreatic Insufficiency which falls under the rare disease category. Hopefully I’ll get some answers when I go back to the GI doctor next week.  In the meantime labs and oncologist today and treatment for PNH tomorrow. Life goes on.