Ever feel lost?
Like so lost you just don’t what to do?
I’ve survived a lot of health issues. A lot of near-death health experiences. So many things that could have/ should have taken me out. But they didn’t. I survived them all.
Some say you’re meant to be here. You’re meant to survive for a higher purpose.
I don’t say that though. That puts this pressure on me to achieve something. Do something with the time I have. More than survive, more than just be.
But be what?
I don’t know.
Most days I can barely get out of bed. Let alone leave my condo. When I’m out of bed, I’m straight to the couch, I stay there.
I’m supposed to see family.
I’m supposed to write more.
I’m supposed to help people.
But I can’t.
I’m stuck. I feel like crap – literally always.
I’m tired. I’m sad.
I don’t know what to do. I don’t know what I want to do.
What I want is a freaking working kidney. What I want is not to be tethered to a machine forever.
I recently turned forty. An age I really never thought I’d get to.
I recently turned forty.
An age I really never thought I’d get to.
When I was 20 getting my first kidney transplant I thought I would recover. Keep the kidney. Get a job. Live a life.
I worked through losing my kidneys three times. I worked hard.
Then… I almost died. I was bleeding internally and nobody knew.
Today I can’t have another transplant. Nobody will take me as a patient for another transplant.
I’m on dialysis. Seemingly forever. Unless something drastic changes.
Whether that be a clinic taking a huge risk and taking me on as a transplant patient, The Kidney Project finishing either their wearable dialysis device or (the ultimate dream) finishing the Articifical Kidney.
I have been fighting for life on dialysis since I was 24. Over 16 years.
It’s so fucking difficult.
I don’t want to go to dialysis.
I don’t want to stop either.
Sure, I’m blessed that at least dialysis is an option.
But, NO, I don’t want it.
I wish there was something/ anything to do.
There was a kidney walk for NephCure– the organization that focuses on Nephrotic Syndrome (which FSGS falls under). I raised money. I had people willing to attend and be on my team. But I didn’t want to go.
I did. But, at the same time, I didn’t.
I went back in 2019 – the last time it was held in LA pre-pandemic. I was more inspired then. I hadn’t gotten the final nail in the coffin when the transplant centers where I live now told me I was rejected. I still had a small teeny tiny slice of hope then. But that’s gone now.
How am I supposed to just do dialysis forever?
My body grows weaker every day/month/year.
How long is this a sustainable life?
Do I keep doing dialysis for another 40 years?!
I want to be around. For my family. For my friends. For the little ones I want to see grow up.
I just don’t really have a reason to stay around for me.
My parents help take of me. What happens when they are no longer around?
What do I do?
What am I supposed to do?
God, this post is a real downer but it’s real. It’s my life.
It’s kidney disease.
It’s chronic illness.
It’s me. My feelings. My worries. My mental state.
I don’t write for pity. Or help.
I write to share. To let you into my mind and life a bit more.
I write this for other dialysis patients, and other folks living with chronic illnesses. You are not alone.
P.S. I cried myself to sleep the night I wrote this. I was placing shame and guilt on myself for not making it to the family festivities.
P.P.S. I cried a bunch the next day too. I’m starting to feel better, but this is just one highlighted experience that many chronically ill people face daily. We want to do it all, our minds tell us we need to, but they shame us if we don’t even if it’s only because our bodies (and anxiety – but that’s for another post) won’t let us.
(I wrote this back in April 2022, but it still rings true).
I’m trying. I’m fighting. Everyday.