The Adventures of Kidney Boy

A Journal About Living With End Stage Renal Disease. Dialysis. Transplants. Love. Family. Friends. The Unsung Donor. This is my life, from the end of a needle to the bottom of a pill bottle.

Wednesday, June 11, 2025

June comes around again

 It’s the middle of the night and it’s a warm night, not a hot one, but still, I have not yet fallen asleep and it’s almost 2 in the morning. It’s this time of night my mind seems to run wild - Sometimes it feels as if my mind is free at this time. Free from the restraints that my failing body keeps it caged during the day. In my youth, I always used to think of this time as my most creative. I did a lot of my creating at this time - be it writing stories or essays or composing music, This time of night has always seemed to feed into the river of creativity. 

I’m not really feeling creative right now and I haven’t been feeling creative for a long time. I haven’t written anything that I have been in love with in a long time. It has become difficult and almost impossible to play guitar very much; The neuropathy in my left hand has rendered it almost completely useless. I played a little guitar up at camp this last weekend and I got to a point where I could barely form an E major chord. Betrayed by my own body. I’m thinking that it has to do with some pinched nerves in my neck and spine from all the spine issues I have. I’m still holding out hope that I can get that taken care of and that maybe I can at least get that part of my life back. Sometimes I feel like I’m whittling down to nothing. Like maybe I am going in to my back nine of life. Maybe this is my ramp out. And I get to slowly lose everything that I used to love about life. It’s not a comforting thought, and I can’t succumb to that. I have to think that if I fight, And I work towards it I can regain some of these things. But the fight has gotten so much harder, and it is hard not to become overwhelmed by a sense of despair. But I’m trying real hard not to. At least I had the good sense to type this out right now - I feel like this is one of the first big spots of writing I have done in a while. 

My body seems to fail more and more every day. I’m tired. I’m hurting all the time. And I don’t like to admit it, but I’m very lonely. I’m so lucky I have my children in my life because I don’t know if my heart would be in it if they weren’t around. They are a very big beacon of light and they are definitely what keeps me going. I know people say this kind of thing all the time, and in my case, it’s absolutely true. They are what keeps the blood pumping through my heart. I hope I can find some joy in life again outside of that too, though because that’s important. I would like to be a well-rounded human being And I have to remember to keep trying to do things that I love and things that make me feel alive. 

Wednesday, April 2, 2025

Spinal Situations



 So yesterday I got an epidural & steroid injection in my spine to help relieve pain & pressure along my very herniated L4-L5-S1. It had gotten really really bad to the point where I was using a walker for a while, and even had to be wheeled into Dialysis in a wheelchair because it was both so painful to walk and I was so anemic that I was exhausted taking a few steps. So I was rather excited to have this procedure done, and to see what kind of results it would give me. I may still need surgery in the future, but for now I wanted to see what this would do. I have had it done in the past with varying degrees of success ranging from very helpful to not so much. It all seems to depend on where the doctor decides to place the needle and we had a good conversation beforehand about where we should do it this time and I think that we chose a good spot. It seemed to go very well and even with sedation, man, did I feel it when the needles went in. But after that initial minor discomfort, I have slowly started to feel better over the course of the last day. I didn’t sleep very well last night, but that is to be expected after an injection like that. However, I did notice that all the times I got up and down and walked through my house in the middle of the night, I was already walking better and significantly less pain than I have been. So I am looking forward to seeing my progress over the next week and maybe I could actually get back to being able to walk like a somewhat normal human being. Right now walking anywhere leaves me a tremendous amount of pain, and you grit your teeth & bear it, but it is nice at the moment not have so much pain. I’m actually looking forward to walking into Dialysis today. I’m using a cane for balance because nobody wants this gigantic body of mine falling anywhere but baby steps towards a more normal life. Whatever that means.

I’ve also attached Venmo info to those who might wanna help a bit. Medical bills still coming in and while I have coverage, it doesn’t cover everything. Every lil bit helps. Thank you. 

Venmo:@StevenA519

https://venmo.com/u/StevenA519