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Last night I was so terribly thirsty that I drank a ton of water and had to get up four times in the night to pee, but was able to fall back asleep quickly each time. I might have forgotten to say that my specialty pharmacy sent me a different kind of infusion set to try (that’s the contraption that shoves a catheter into your flesh and connects to the medication pump). I’ve been using one that sets the catheter perpendicular to your skin, but since I don’t have much subcutaneous fat we’re trying one that can be inserted at a shallow angle. So I started two new sites yesterday afternoon — one in the old scarred zone where my body is accustomed to the meds, and one in a nice fresh area where the pain will be INTENSE. Comfy for daytime, painful for nighttime, since that’s when the pump complains.

Last night went well on the fresh site. No alarms until the pain got intolerable and I took a chance on switching to the comfy site, just in case the shallow angle would be helpful enough. And then I got an alarm again. So, I just need to tolerate the intolerable. Eventually it should settle down. Tomorrow I will need to start two new sites on the OTHER leg and start the pain clock over again. Gah.

I used the comfy site all day today but the Painful Site has been killing me still, from exposure to the meds overnight. Can barely walk. It’s like knives. That bit of my thigh is swollen and hot, and it burns burns burns. Remodulin is a POWERFUL vasodilator so every bit of that area wants to expand all at once. OUCH.

Tonight will be really hard. I’ll take all my ice packs to bed.

Too much pain for walks and exercises today. Bah. Tomorrow I’ll try to do my arm and shoulder exercises at least.

Cooking German-style sweet-and-sour red cabbage for dinner (Rotkohl).