Day 27: What’s the most helpful advice you have had?

Good advice is hard to come by when you have chronic illnesses. People mean well, but often have no idea what they’re talking about. Sometimes the best advice a person with chronic illnesses can receive is advice from another person with chronic illness, at least in my opinion. Or it’s advice you learn for yourself through experience.

The best “advice” I have received about celiac disease is really more something I discovered myself. Stick to a gluten free diet and don’t cheat. I’ve never intentionally cheated, but the few times I’ve accidentally ingested gluten since going on a gluten free diet have convinced me it’s something I never want to do to myself deliberately! Imagine a bowel prep for a colonoscopy, but worse. I’ve done two bowel preps for surgeries I’ve had and the bowel prep is much more pleasant (if you could ever use such a word to describe sitting on the toilet emptying everything but your organs themselves into the toilet) than getting glutened. Trust me. DON’T CHEAT.

The best advice anyone has ever given me on endometriosis is that you need to learn as much as you possibly can about the disease, because chances are you will be better informed than your physicians unless you’re talking to an excision specialist. Being better informed leads to better care (ahem, excision) and the best chance for a better outcome. I think these words sum it up best:

“If you suspect you have endo, you’ll have to make it a priority to find the best care possible. Bear in mind that not all OB/GYNs are well informed about this disease. You’ll want to get a referral to a doctor who has experience with endometriosis and years of laparoscopic surgery under his or her belt. Because endo usually involves several other physical problems, you’ll want to find a doctor who will consider the entire state of your health, not just the endometriosis. Unfortunately, it may not be easy to find such a physician. I see women in my office every single week who have been misdiagnosed; others who have been correctly diagnosed but put on inappropriate medications; still others who have had unsuccessful surgeries.

“If you have or suspect you have endometriosis, you will have to be proactive about your medical care. You should learn as much as you can about this disease, so that you can understand your treatment options. You many have to fight with your insurance provider; you may have to travel; you may have to pay more out of pocket than you expected. But you’ve got to make sure you get good care, and you can’t give up until you do. No matter what any physician says to you, you have to trust yourself. It’s your body, and you know when you’re in pain and when you feel right.”

Dr. Andrew Cook, Stop Endometriosis and Pelvic Pain

And that’s all I have to say about that.

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