Pain

By far, the biggest complaint (and there are a few) in the PKD world is pain. It's weird, because there are some doctors out there who believe it wouldn't cause any pain to have cyst-infested footballs in your stomach - squishing up all your organs causing GERD, IBS, and what the medical community calls "mechanical problems". Basically, you can't tie your own shoelaces. And, for the 85% of us who'll win the prize of developing polycystic liver disease, it's markedly worse as far as pain goes, and there's much less room in your abdominal cavity.

Clearly those doctors don't know anything about PKD, another common problem in our world. But pain management is necessary. There are a few things that could cause your pain and, judging by what is ailing you, they have different methods of addressing it. If your pain is caused by kidney tissue being pulled apart by the growth of your yellow friends, they prescribe pain medication ranging anywhere from Acetaminophen to morphine. If your yellow friends are too big, they'll de-roof or aspirate them. It's just a fancy way to say "pop and drain". They can even take a kidney out if it's getting too big for the rib cage to hold.

There are different thresholds for pain. When described in medical text the pain can be chronic or spontaneous, mild, or severe. I guess it really depends on where the cysts are. As I've mentioned before, there was a girl about my age in the support groups who couldn't even go to school with her 8 cysts. I have "too numerous to count" decently sized cysts and, luckily, it hasn't been that bad.

It hurts almost all the time. It especially hurts when I bend or twist at the waist or if I'm sitting without my back supported. Two years ago, the pain was mostly in my stomach but, as time goes on, it's all in my back and it's getting worse pretty quickly. When I worked at Maverik is when it started getting really bad. I figured my back was just sore from standing 8 hours a day, 6 days a week. That made sense and, when I stopped working, it got better. Now though, it doesn't go away. I only work 15 hours a week on busy weeks, and I don't do much heavy lifting, if any.

Here is my point: I really worry I won't be able to work. The jobs I've always wanted require moving things. Moving bodies probably wouldn't be a good idea - it's one of the reasons I stopped trying for mortuary school. But even moving equipment, running, and standing are becoming chores as it is, and it's only going to get worse.

There's also the fact that I really don't want to ask for help. I like sucking it up and pretending to be tough. Fake it 'til you make it, right? But I complain about my back more than I'd like. I say: "My back hurts." And then I stop saying it and get some pills. The pills aren't working anymore. I read a study that Acetaminophen actually does nothing for back pain. I believe it, but I don't know what to do now.

I guess I'm just embarrassed that I need it. Or maybe I'm just scared to "be on medication". It's like the first step on the road to a battle I'm not ready to fight.