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3:44am November 4, 2014
So there’s this new staff person who is not only the world’s biggest nerd (I’m a nerd, this is a compliment) but also has myasthenia gravis and has the same neurologist as me (he noticed my Mestinon bottles and asked questions, because Mestinon only really treats one disease - he managed to get into clinical trials so he’s also on some new drug he hopes will help. It’s amazing though having a staff person, even a sub, who just gets it about chronic illness, and your illness in particular, and shares 95% of your nerdy interests. We talk way too much when he comes by. Anyway he decided it was criminal that nobody had set up my bidet. He rightly deduced that my butt was in very bad shape. I’ve never been able to wipe properly - it gets on my hands and stays on my butt all at once. I’m in occupational therapy for that because it limits where I can take a crap. But until we comes up with a solution (our current one involves mirrors and squirting bottles - I can wipe other people’s butts so we figure the problem is I can’t see my own) there’s the bidet. So we were missing a T joint, a vital piece of plumbing for the bidet. He went off to the hardware store down the street. He discovered that T joints were $15 and I was very low on cash. So he instead spontaneously manufactured his own T joint out of parts around the store that cost him $3. He refers to this process as “Frankensteining” - which is exactly what I called it when I created one functioning suction drainage bag out of silicone tape, a gravity drainage bag, and a suction drainage bag missing some pieces. Anyway after some silicone tape of its own the t joint hasn’t leaked a drop. I owe him one. But I’m also impressed that he realized my toilet seat was a major priority and took it upon himself to fix it, using partially his own time. He’s very good with his hands - this is a specific nerd specialty he shares with Anne - and very observant. Not many people who’ve known me for ages put together what lacking that toilet seat meant as far as the bare, disgusting facts. I’ve gotten infections before this way. So I’m very grateful plus it’s always cool to have nerds to talk to.

So there’s this new staff person who is not only the world’s biggest nerd (I’m a nerd, this is a compliment) but also has myasthenia gravis and has the same neurologist as me (he noticed my Mestinon bottles and asked questions, because Mestinon only really treats one disease - he managed to get into clinical trials so he’s also on some new drug he hopes will help. It’s amazing though having a staff person, even a sub, who just gets it about chronic illness, and your illness in particular, and shares 95% of your nerdy interests. We talk way too much when he comes by.

Anyway he decided it was criminal that nobody had set up my bidet. He rightly deduced that my butt was in very bad shape. I’ve never been able to wipe properly - it gets on my hands and stays on my butt all at once. I’m in occupational therapy for that because it limits where I can take a crap. But until we comes up with a solution (our current one involves mirrors and squirting bottles - I can wipe other people’s butts so we figure the problem is I can’t see my own) there’s the bidet.

So we were missing a T joint, a vital piece of plumbing for the bidet. He went off to the hardware store down the street. He discovered that T joints were $15 and I was very low on cash. So he instead spontaneously manufactured his own T joint out of parts around the store that cost him $3.

He refers to this process as “Frankensteining” - which is exactly what I called it when I created one functioning suction drainage bag out of silicone tape, a gravity drainage bag, and a suction drainage bag missing some pieces. Anyway after some silicone tape of its own the t joint hasn’t leaked a drop. I owe him one.

But I’m also impressed that he realized my toilet seat was a major priority and took it upon himself to fix it, using partially his own time. He’s very good with his hands - this is a specific nerd specialty he shares with Anne - and very observant. Not many people who’ve known me for ages put together what lacking that toilet seat meant as far as the bare, disgusting facts. I’ve gotten infections before this way. So I’m very grateful plus it’s always cool to have nerds to talk to.