Truth be told, I'm a bit surprised at how tame this blog has been since I started it. I started the blog not too long after I came home from my 5th hospital admission since May. I'm not even sure how many additional ER visits there were on top of that. During all of that I had 3 or 4 ERCP's (Endoscopic procedures performed on my pancreas to clear my main pancreatic duct and place stents in to keep it open), vials and vials of blood stolen, lots of pain meds and a lot of pain. It was what answered the question irrefutably that the surgery I'd been putting off for two years wasn't optional anymore. Now I've been home for about a month, and I've been doing really well. When I saw my doctor a couple of weeks ago he said he thought it was the healthiest he's seen me look in months, which is awesome. I may even get to skip my January ERCP if this keeps up. That would be a giant plus. Sometimes that is just what happens things magically settle down.
That being said, we also seem to have finally hit on a good combination of meds for me and it's made a huge difference. I have energy again and I feel like myself again. I'm not overwhelmed with nausea and puking all the time which is wonderful. Trying to find the right anti-nausea medications was like throwing a needle in a haystack. It's taking two different meds to keep things in me where they belong. I'm on meds and dosages that people would think belong to a cancer patient, even my doctors were on their last try with these ones, so I'm really glad they are working and I can function on them.
I wanted to talk about medication, and scheduling and how it is so difficult. I know that a lot of people suggest things like a pill timer, reminders on your phone or even a pill organizer, but those things don't really work for me. I have a lot of trouble with medication. First of all, I hate pills. Half the time when I swallow them I automatically gag and try to get them back up. It makes knowing if I can't get my pills down because I'm sick or just having a bad pill day a challenge.
Second of all, all of my pills have to be taken at so many different times. I take 4 pills when I wake up, typically in lieu of breakfast. Sometimes I'll have a snack after, but my appetite is still lost in the pre-hospital days so breakfast is a challenge. Also, some mornings I get up and just jump into something and morning meds happen later at like 11 or noon.
Then meds around lunch are difficult. One pill needs to be taken 30 minutes before I eat, two pills just as I eat, and one when I am done eating. Dinner is similar with 2 pills before I eat instead of one.
Night has just two meds right now. It should probably be 3.
I also have scores of as needed meds that when I need them, they are there. I can respond to pretty much any medical state I might find myself in on my own. Which makes me saying that I need to be in the hospital all that much more alarming. I hate meds, but I've come to be really good about them. I still definitely miss here and there and trying to plan 30 min before I eat is impossible. Sometimes I end up waiting an extra 30 minutes to eat just so they can kick in first. My point is more that I'm lucky that my doctors have trusted me to learn how to take care of myself, that I know what I can mess around with and what I can't and when I can handle a flare myself and when I can't.
It also makes a big difference how much I know about a lot of my meds. When my doctor goes looking for her pharmaceutical reference book and I already know the max dose, the standard dose, the standard and off-label usages. Asking questions and knowing about what you are taking is so important. It really scares me when I sit in an ER and hear someone say that they are taking a pill because their doctor gave it to them and they don't know why. That scares me.
Since I know that advocacy within the medical system is something that lots of people with chronic pancreatitis have problems with maybe next time I will talk about what I do to help advocate for myself during a flare and the ER.