Thursday, November 2, 2017

I Hate This Disease.

So this latest pancreatitis flare has been going on now for two days. It began Tuesday evening. Wednesday was a bad day, so I stayed home. Today was no better, but I went to work. I made it for 1 ½ hours. I'm back at the house.

I woke up this morning feeling okay. Fred immediately needed to go out to do his business, so I took him out. In less time than it has taken to write this the pain was back, with a vengeance. That’s why I hate this disease.

As I’ve written before, chronic acute pancreatitis has no known cause and no known cure. Forty-one percent of people diagnosed with this illness die within five years of diagnosis. If a person makes it past that point the odds get better, dropping to eighteen percent within the next five years. Pancreatitis is no respecter of persons. Young and old, rich and poor, etc., it comes on and wreaks its toll on a person’s body. It kills through toxicity. The pancreas slowly dies, and it can’t renew itself. At a certain point that lack of function causes a toxicity that gets into the bloodstream and begins affecting other organs. That is how it kills.

As with any disease of this type, sufferers are afflicted not only physically but also mentally and emotionally. I am blessed that most people I know are very understanding about this condition and how it affects me. Others refuse to understand.

So, here’s my life.

Not too much repetitive motion. This includes walking. Unless I move slower than I’ve always been accustomed to it begins to manifest itself.

No heavy lifting. Heavy lifting is defined as anything over ten pounds. I can’t even carry a basket of laundry anymore from the basement to our bedroom on the first floor. Frustrating.

Don’t even think about mowing the lawn. Too much effort there.

Always know where the nearest bathroom is. This is a disease that affects my digestive system. There are days that I’m in the bathroom eight, ten, even twelve times or more. Should I wear roller skates? And, every time, I feel like my guts are being ripped out.

Here, taste this, it’s REALLY good. No, because there’s something in there that I already know could cause a flare.

The pain is always there now, and it has steadily gotten worse over the last few months. I try not to notice it. I see a massage therapist who specializes in pain management once a week. She is fantastic at what she does. She’s familiar with pressure points. Sleep is in fits and starts these days, so I usually fall asleep on the table. When she’s done with me the pain has subsided, but only for an hour or two.
Some people think I’m lazy. No. Walk a mile in my shoes. I can still accomplish things, it just takes longer. Again, frustrating.

My gastroenterologist, one of the best in the country, tells me there’s something else going on. I believe him. There’s a new test every couple of months or so. The last test identified something. Four weeks of antibiotics seemed to do the trick. It did. For about two weeks. Then the pain came back.
Most folks are kind. Some folks are downright mean and, unfortunately, I’ve become convinced that the mean people will never change. Those of us who suffer in silence should always remember: When you find yourself the victim of other people’s bitterness, smallness or insecurities, things could be worse – you could be them.  Kindness costs nothing. And that’s all I’m gonna say about that.

I don’t seek pity. What I seek is understanding.

I hate this disease.

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