When Not Bad is as Good as it Gets! 🤷‍♂️

The title of this post might sound whiny or lame but that’s not it’s intention. It’s not written to elicit sympathy either. It’s simply a way of explaining how I feel physically most days now. People who know about my issues with PNH usually ask how I’m feeling when we talk and usually I respond okay or not bad when the reality is I’m sore or tired or having stomach issues or all of the above. There reaches a point where while I know people care when they ask more often than not the truth would bum them out so my answer? “Not Bad”. And for the record “not bad” doesn’t come anywhere near good, pretty good or okay. 

With that being said life since I last posted and long before then has been, “not bad”. 

My last post was brief but it was important because it talked about hope. Hope that things were going to start improving for everyone with the availability of vaccines. Since that post I got my second dose of the Moderna vaccine and even though I was pretty sick for about 36 hours it was so worth it. It gave me the chance to start making plans to start traveling again after my treatment next month. After that treatment I’m hoping to leave an open window between appointments until after my next treatment in June. How much of that time I’ll actually be traveling I’m not sure. I just know that I want to reconnect with family and friends. 





This trip is going to be different than my others because I’m going to be traveling with my dog, Charlie my most loyal companion during this crazy Covid isolation. That’s a big reason why I’m not 100% sure where I’m going, where I’m stopping or how long I’ll be gone. 







I didn’t do anything for St. Patrick’s Day because that’s when I was sick for the day. I still made a point to try to “celebrate “ a few days later by having a corned beef sandwich and my traditional mint chocolate chip ice cream. 









I did a Virtual Shamrock Beer Run 5K on Lynx Hollow Road. It wasn’t fast or pretty but I got it done in about 55 minutes. 🙄🤷‍♂️  I actually had hoped to do a couple of in person events but when the time came I didn’t feel good enough to do either. Preregistration is pretty much out of the question for me anymore unless I’m okay with it just turning into a donation. Oh well, It Is What It Is!






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