Wednesday, December 19, 2012

In Between Times

There is no set way to have chronic pancreatitis, it's different for everyone. Some people are constantly in pain, and don't experience any difference between being in a flare or not, it's just always pain. Some people have low levels of pain on a pretty much daily basis, and then flares of greater pain. Other people have times of no pain, low level pain, and flares. It depends on your body, to a certain extent how badly damaged your pancreas gets and a bunch of other things that they haven't managed to figure out yet.

For me, I can have times when I have no pain at all. In those times I can manage to forget that I have pancreatitis. Of course that works a lot better when there isn't a major surgery looming over your head. Days when I commit myself to everything and manage to forget that I have limitations because I'm busy impressing myself with everything that I've managed to accomplish. Those days usually get me into trouble later. I also have days that range between low and mid level pain. Those days depending on what is happening and when the pain starts I try to stick to my routines. Most people don't know that I'm in pain but once it reaches a certain point people start to ask. Those are usually days when my pain medication isn't working as well as I'd like it to. Now I'm on new medication though, so we'll see. Those days can be hard because I'm trying to be the person I can be with no pain only with significantly more pain.

Then there are the flares. Sometimes I can handle them at home and sometimes I really can't. If my pain meds work, so long as I don't get too dehydrated anti-emetics and pain meds are my best friends for a few days and then my pancreas calms down and the world is okay again. Sometimes though it is sudden, onset for no reason, and even if I could get meds down between the pain and the nausea, they wouldn't do much. I remember once ending up in the ER where they were telling me that I should just basically take three times my dose of pain medication to keep the flare under control. That is the other weird thing about a flare too, sometimes if you can get on top of the pain and the nausea in the ER, you don't have to stay. I've been sent home from the hospital a few times now, and sometimes it makes me mad and frustrated, but it isn't often the wrong decision, I haven't had to go back.

What I wanted to talk about though, were those between times. The times where you don't really have pain or it's just low level pain, that I guess because I live with pain for me is no big deal. Having grown up with this pain I don't know how anyone else would rate it, but for me it isn't even worth medicating most of the time. Sometimes it is really cool to be in that in between time. It's where I'm at right now. My body is finally feeling pretty recovered from the last few months, some new medications we are trying are kicking in, and I'm being productive like I haven't done anything since September. In fact today I took care of things that had been on hold since September. At the same time, a few days ago I needed to come home and nap after a few hours out. It's better but it isn't perfect. It can be as good as it gets for me though. I still need help with things sometimes, but I can do more.

It's just that there is this scale of where I can be in terms of my health, energy and mood and it really ranges from as great as you could imagine, where I am healthy and out there doing stuff and changing the world and going at warp speed, but the kind where things get done and nothing stops me, and there are the days where I'm in a hospital bed and managing to get a pill down and not puke it back up is both a struggle and a major victory and point of interest in my day. You don't typically go from hospital to super high energy in two seconds flat, but it can easily go the other way.

I think that is one of the things that I've had to learn from being sick. To learn to be flexible. To celebrate things when I want to or can. I missed Halloween this year, and narrowly avoided a full fluid Thanksgiving hospital meal as well. It is hard when it is plans you want, like giving up a job that you were looking forward to, or courses you wanted to take. But in the good moments it teaches me to go with the flow, know to drop things to meet where other people are at, and become incredibly creative at problem solving. Not many people see the world the way I do. It's hard sometimes. You feel like there is this little time bomb sitting inside of you and you don't know when it is going to go off. There are times when you feel like there is no point in making any plans at all, but then you get out of that place and you do. I'm having surgery in March, but I'm already planning for my summer. It's just that tug of war between planning for what you can, and what you want to do and always knowing that things might get messed up in ways that you might never expect. After two hospital admissions, another 4 or 5 ER trips including one the week before, and a brand new diagnosis of diabetes, my sister and I went on a vacation (Because seriously, after a summer like that, who wouldn't need one). First night of our vacation, my sister who had been fine this entire time and hadn't been in the hospital for over a year ends up having a massive flare and a hospital admission. So, you never know.

In between times are hard, but I wouldn't give up the days of feeling good and feeling like all of myself just to know where I stand with my pancreas all the time. I think it's smarter just to take good where I can get it.

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