Hey, I'm Jason. I'm a chronically-ill-super-freedom-loving-medical-self-journalist.
Given my choice, this post would be about Violet, my new daughter, future president (or whatever else she chooses to be, really, especially a doctor – but whatever she likes). It would also be about Wallace, my 8 year old step daughter, future entertainment mogul or rock star or actress, who has been mood-swinging around the new baby for the past three or four weeks. She called the neighbor girl a bitch. Wallace might be a little pissed about Violet. But she also loves her – it’s one-sided sibling rivalry unfolding in front of me.
I would also write about my wife, Rebecca, who has a Violet attached to her breast and a Wallace attached to her pant leg. I would write about amazing Rebecca, the Pediatric RN; how lucky I am to have a wife who has a ton of experience with children (not the least of which is Wallace). I’m not sure where I’d be without her – well, except I do know: I’d be on the phone constantly asking a doctor or my Cigna Healthcare nurse practitioner, “are you sure this is normal? all this crying?” I would also write about my parents who are constantly asking about Violet and having us over for breakfast in their central air-conditioned home. Or I’d go on some diatribe about how lucky I am to have a job that gave me two weeks off for paternity leave, but that it still totally sucks to go back to work and leave my family at home.
But there’s really no time to be writing about such things on this particular blog. There’s not enough blog space anyway, to write about all of those marvelous things. I can’t write about that because I should really be writing about how my creatinine is finally, officially, tragically 5.4. Well, maybe not tragic – that’s too dramatic.
You see it doesn’t really matter what comes in and out of the life of a kidney ailment sufferer – us ESRDs. Whatever successes and excitements and children come into life, they cannot prevent kidneys from failing. My upbeat attitude doesn’t work. My dogged pursuit of a kidney donor doesn’t slow it down. Nothing stops my kidney from failing. Not even taking my medication, on time, twice every single day, for 4 years and almost 4 months could stop it.
5.4 is well-done, if kidney failure were a steak. 5.4 is point-four above the “end” in End Stage Renal Disease. The fact that I’m still not on dialysis is probably just a formality. One day I feel fine, the next day I’m throwing up last night’s dinner over a headache that could kick your butt after it was done with me. I walk into the kitchen sometimes and forget why I’ve walked in there – I have gotten used to this by now, I just walk calmly out again. There is waste product circulating through my brain, it is just harder to remember stuff. My legs are jumpy again – my nemesis of kidney failure. [side note: if you ever made fun of the ads for the medication for restless leg syndrome (which you should, because it does seem funny), now you know someone who has it.] I remember that cycling at the gym used to help with my jumpy legs, so I thought I would buy a set of rollers to ride on in my house. I keep forgetting to order the rollers.
Anyway. I’ve been remiss (again) at keeping this blog up to date. You’d think it would be top priority. It is top priority. But 5.4 is a pretty high number and kidney failure is a big item on the “to do” list. There’s a lot to do. Like take some Tylenol and sleep it off. I forgive myself.