Musings and Mutterings

This is going to be a little different from some of the other things I've written in the past, but I wanted to be open and real about what is undoubtedly the most important thing in my life. Yes, this post is about my kids and I, but no, they are not the most important thing in my life. They are a solid second place. First place belongs to God, and God alone. For those of you who will bear with me, let me explain... I consider myself a Follower of Jesus, and I have been pursuing to live as God instructed in the Bible, which I believe to be complete and true. I mess up every single day, and God is merciful and graceful with me- every single day. But I have found through my truly meager studying and practice of following after Him, that regardless of whatever it is that I am going through, I can be at peace and full of joy in God. I can trust Him fully because He is faithful, which is proven over and over, not only in the Bible, but also in my life. This evolution and transforma...

For many people with chronic illness, they have to learn a "new" normal. Whether it's dealing with pain, or learning how to make it through a week with debilitating fatigue or other symptoms, these sufferers have learned many tricks. But no matter how many tricks or adaptations are made, there are always times when it is forgone and the previous normal is tested out again, usually to some detriment. For me, this is tested at Costco. It is one place that I just cannot let go of, mostly because there are items I prefer to get there, for both price-wise and convenience. But Costco is the place that stimulates some of the most symptoms for me, and is therefore is the barometer of how well I am doing with my health. Even on those seemingly good days, Costco's lights and fast pace, the aisles that require turning my head back and forth, people rushing around me, the loudness, the smells, the walking or even riding the scooters- it becomes too much. I become dizzy, nause...

Our society has a bad habit: polite perfunctory exchanges. These drawl and drab traditions are great at heart, and truly I think they come from a genuine place for most people. However, the usual exchange of "Hi, how are you?" "Good (or 'ok' or similar nondescript terminology), how are you?" "Good, thanks," is so often a ritualistic custom without much forethought. And for most places and people, this is totally acceptable- and probably applicable. When you have a chronic illness (or a barrage of them), this takes on a whole new degree of complicated- do you lie or tell the truth, protect them and yourself or just lay it all out there? Personally, I've found the former to be the way to go, if for no other reason than time constraints. Typically this serves me well. Even at doctor appointments, the half-hearted opening discourse that begins the entire interaction is routine and rushed, and the rest of the interaction is the same. Once I ...

This May, I will have been a nurse for 12 years. In all these years of nursing, there are literally hundreds of patients and families whose names and faces I no longer remember. I have a few moments, though, that stand out. My first patient that died. Patients with the incurables, and inoperable, and minutes left in their lives. But of all the memorable things in my short nursing career, my most favorite moment was 3 and a half years ago. I had been new to working in pediatrics, and so they gave me the "easy" patients. JD was easy. Waiting on a heart transplant, there was not much to do but wait. She had an amazing family, I adored her mother and always hoped I'd get to take care of them. After what felt like forever of waiting, I got a call one night from the transplant team- "Don't say or do anything to alert mom, but we have a potential match and we need to get these labs done: ...." So I was being as cool as I possibly could be-- which was not reall...

Grief is a funny thing... sometimes, it hits you out of nowhere. Well, not nowhere. You can see the calendar. But you very carefully ignore the date that is coming. Until something demands full attention about the date. Like an email. I was doing ok- good even- about pushing this date into the back of my mind. I'd see it on the calendar, and it was a painful little reminder of things lost, but I could turn the calendar page or not look at that week, and I was ok. Until the email. The email reminding me of the date approaching. The email pointing out the life lost. Of course, it didn't know that's what it was doing, but it was an anvil none the less. So I made a plan. I was going to challenge the grief, head on. I was looking forward to it. Then everything got derailed again... change of plans, regression, and renewed loss. No opportunity to challenge the grief... instead I have to shy away from it, something I hate doing... My life before POTS was busy. Too busy p...