I drink four bottles of water a night – 67.6 oz. every. night. Just during the night. During the day I manage another 1-3 bottles, depending on what the day brings.
I committed to this months ago, after one of my previous Spinraza labs came back with quite terrible news regarding the functioning of my kidneys. (I rectified the problem since; basically diet adjustment and more water)
Spinraza can be hard on the kidneys. So are my bp pills. I currently cannot do without either one.
And so mainly because of the Spinraza, right before an injection, I get my labs done and my levels checked to see how my kidneys are holding up. It is always a stressful time as I wait for my results.
While I wait, I begin thinking back to all the water I drank and if it were enough, if I should have started flushing my kidneys weeks or a month before Spinraza?, have I felt any kidney pain that I’ve ignored? Will I clear these labs or have to be delayed another few weeks?
It’s crazy making and nothing I can do until the labs come back and tell me the news.
This is one of the rooms within My House (my disability). It’s not the only room, to be sure. But it’s a very important one. It interconnects with other rooms and affects many other systems but it’s a vital room, so I keep a close eye on it.
I spend an inordinate amount of time thinking about my kidneys. How they function, how they feel, what I should eat or drink that will best support them. What to do when they feel sick and hurt. They are power houses of filtration and regulation. My job, my only job is to keep them happy, healthy and functioning to their best.
And so to that end, as much as I don’t want to wake up in the middle of the night two and three and four times – I do it, cause my kidneys need the water. Sometimes my belly is sloshy, full of water, uncomfortable to breathe. Sometimes it’s full of dinner and I chug 3/4 of a bottle of water after, so I won’t forget.
Sometimes I’m not even thirsty. I still just drink my water.
These are the ‘amazing’ (?) things I have to do to live. Not even thrive; just to get the chance to wake up every day and exist.
Many able bodied people don’t have to fight 1/10 as much for their lives. I do this every night.
So when I invite everyone into My House and I allow access into the rooms therein and their workings, understand what that costs. Respect too, why I do it.
We cannot keep walking through this Life unaffected. Unthinking. Unconcerned until it is Us or someone that we know. We cannot live a Life unexamined – thinking only of the next brass ring and not how our actions impact the Houses that we’re invited into or what state we leave them in.
I share my journey here, with you all because it is important and necessary. If I am the only disabled person you have in your lives – you’re doing it wrong. Don’t let me be the only or the last. We (disabled folx) all have incredible journeys, perspectives and stories to tell ?
The labs came in. My little powerhouses are living their best lives.
Spinraza No.9 is nigh…
Be good to the disabled folx in your lives. Our fights are long, ongoing, exhausting, frustrating. Sometimes we need a cry, other times just some company. Be kind and respectful. That’s all we ask.