(by Sherri Silesky)

A physician once told me that if the FAA worked like our medical system, a jumbo jet would be crashing every single day. That was a pretty powerful picture to me, but one that did not surprise me.

I am chronically ill due to a rare genetic disorder called neurfibromatosis (NF). In my case, inoperable tumors cause chronic, intractable pain. I have a pain management specialist and do my best, but it’s a challenge.

The biggest challenge has been learning how to advocate for myself without alienating caregivers. And they are easy to alienate. They often leave out of anger at my insistence for proper care or frustration at not being able to deliver. If we are beyond help, they just call the next number, as if we are in line at a bakery.

In November of 2006, I suddenly lost a lot of weight. I’m thin to begin with, so when close to 20 pounds dropped off me in a month, it scared me. I went to a local GI doctor and she found nothing wrong. She did several tests, but kept telling me I was “fine” One of the tests that she did was the day before Thanksgiving. I didn’t hear back, and called the doctor on call on Thanksgiving Day. He said I had to wait until Monday for the result. I said “So even if something is horribly wrong, I just have to wait?” He repeated my words back to me, dripping with sarcasm “Yes”, he sighed “even if something is horribly wrong, you have to wait until Monday”

Eventually they found I had achelasia, a rare stomach disorder (1 in 100,000) that few people know how to treat it surgically. My local GI doctor inserted a balloon with botox to push open the esophagus and let food in, but it was a temporary fix. She sent me to the University of Washington Medical Center, which does the gold standard way of fixing this through laparoscopic surgery.

I had the surgery on February 12, 2008, and although it was especially challenging for me due to my other challenges disorder, I am on the mend. They treated me well and with respect, even though I am not their favorite patient.

When you are least able to advocate for yourself is when you must fight like never before. And when things go wrong, you must learn to pick your battles. While it’s tempting to “lawyer up,” unless you are seriously injured, you need to decide if it’s worth your depleted energy.

Writing to the proper people (the state AMA or group that oversees physicians) to report a problem works because it creates a paper trail if ever someone is seriously injured due to a doctor’s mishandling of a patient. So choose your battles carefully while standing your ground. If you are too ill to advocate for yourself, find help. You deserve it!


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