Still Here

Pro tip for you: when it comes time to finally disconnect the drain bag from the line, twist the tubing. I found this out by trial and error, wasting entirely too much time on tugging on the tubing and nearly hurting myself.

I’m losing track of the number of  weeks I’ve been on PD and I’m not sure if it’s a good or bad thing. I’m getting used to positioning myself so I don’t roll on to the tubing in my sleep. I started PD April 4th. Began on the cycler June 28th. It feels like forever.

Have I mentioned you can’t be a light sleeper and use the cycler? Dear God that thing is loud! I struggle for nine (maybe more like 7, since I read or watch my kindle for a bit) hours to sleep. Then at about 7/7:30AM when things go quiet I get some solid sleep for a couple of hours. I’ll sleep after me transplant.

May I just say to all the optimists out there: while I appreciate the words of encouragement, shut up. I’m a tired, cranky, realistic introvert. It helps me to keep moving if I spend a little time angry. Don’t tell me it will get better (or I’ll get used to the pumping and whirring of the machine) when I complain, just commiserate for a second and move on. I don’t want the pep talk. It actually pisses me off.

The thing about this illness and the suddenness of it all is that I don’t really have time to deal with anything. I’m just doing what medical people tell me to do and keeping my head down. I’ve spent maybe a total of 20 minutes on “why me” and then it passed because I felt like I was wasting time. Like sleep, I’ll ride the pity express after my transplant. That’s when I’ll have time to process.

One more thing. The crazy 15L drain bag is insanely heavy. I’m really surprised they don’t have on with a handle. It’s not like anyone on the cycle hasn’t spent time doing PD manually, so everyone should already have in IV pole. It least lifting it on to an IV pole wouldn’t be as bad a lugging this 25lb bag down the hall to the bathroom.

There’s got to be a way to transport it without having to do the heavy lifting. I can’t imagine someone 30 years older than me (or sicker or weaker) getting this heavy, ungainly bag to the bathroom on her own.

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