Define "Chronic"

A friend recently asked me why I have not been posting lately. I told her it's because there is nothing interesting to write about a chronic disease.

I started this blog after I was diagnosed with breast cancer. My plan was to use it as a way of tracking my process through the cancer maze of diagnosis, treatment and recovery. It was a way not only for me to work through the complications of the disease but also to let my amazing friends and family know what was happening. So many of them were so wonderful through all of it. They cared about me and my family; they didn't want to bother my husband or me; the blog was a way of letting them know what was happening.

That was nearly three years ago. The blog stayed up because the breast cancer journey inexplicably became a battle against sarcoidosis.

But here's the difference, while I will always live with the possibility that the breast cancer will come back, it seems that I'll be living with the sarcoid and its daily implications for a very long time. When I was dealing with the breast cancer, it was a defined disease. There are tests, studies, protocols and treatment plans. It wasn't easy, and the decisions were difficult, the diagnosis was terrifying, but I knew what the goal was - get the cancer out and keep it out. My doctors knew how to do that. The treatment plans for breast cancer are not pretty; I have 5" scars on either side of my chest as proof of that; but they work a large percentage of the time; just ask one of the millions of breast cancer survivors.

Sarcoidosis is different. I figured this out pretty quickly when I had to look up "sarcoidosis" and then have it explained to me several times. And then, I had to explain it to everyone I knew. No one knows what it is. Very few people have it. Of those who have it, almost half have no symptoms. Only one in 20 sarcoid patients have symptoms that cannot be controlled and sent into remission by Prednisone. Apparently I'm one of them.

This is where it gets blah, blah, blah. I have many doctors. I have many doctor appointments. The staff at my local pharmacy are very sweet, but they know me better than I would like. I keep a list of medications on my iphone and email it to my husband at least every other week as it is updated. I have pain on a daily basis, I have insanity and a host of ridiculous side effects cause by medications designed to help one thing but screw up a bunch of other things. I live with the fear that this won't get better and that, eventually, the thing that scared me most about the cancer will happen as a result of the sarcoid instead.

I don't expect any of this to end anytime soon. That's why I don't post much anymore. Sarcoid is blah, blah, blah. It's not interesting, and posting is not helpful for me or my wonderful friends, it's messy and, ultimately, boring.