Summer Journeys

I’ve been very quiet. I’ve been juggling a body not wanting to produce fresh blood and the absolute fatigue that causes. That’s one pin in this moving routine. A far bigger pin is the failure of my liver recently. No kidneys, sputtering liver, and a pinch of congestive heart failure starting to creep in: my arms are moving so fast you can’t see but a blur of them and the pins tumbling within them.

It is all getting to me. So I’ve turned to journaling and writing like I usually do. I thought why not share what I’m going through with others? Especially if I can’t create. And not in bits and pieces when I’m giving an update. Daily. I’m figuring it out. I’m not sure how much time I have to figure it out. I’ve been fast tracked for a double transplant. The kidney part is pretty routine these days and done with scopes. The liver, on the other hand, if you’re getting a full one it’s like having a tree of ducts, arteries, etc being carefully into your body. At the moment I try not to think about it. I feel so distant from everyone these days.

It’s not very late, but I am quite tired from dialysis today. I keep watching my dry-weight get lower as my body loses pounds. Thanks to my liver I still have a gut. All that aside, I do need to sleep for a little while. Before I snooze, if I have any advice to you–study every single medication that goes into your body. You never know where it might turn up years down the line or how it will decide to show up again. Ask your doctors a million questions and never completely trust a group of doctors staying in communication with one another. You only have you and your life. Doctors, as well intentioned as they can be, they have many many patients and sometimes they’re human just like the rest of us. Be your own best advocate and always stay as positive as possible.

Tomorrow might not be there, but that sweet smelling rain is above your head and the soft grass is under your feet right now. Enjoy every last moment of it. Stay well. ~ Bethalynne

Posted in: Blog, Health

Published by Bajema

"They changed the rules of the fairy tale. I'm no longer just the eccentric niece, now I'm the full blown spooky aunt. So come on! Take your best shot Mary Poppins!" I'm sure Julia said that in that one pin heady movie. Or maybe this is just my take on it.