Be in the know

I believe being an educated patient is a must nowadays.  Whether it is for common illnesses or if you are suffering from a disorder or disease.  I am no different.  At least once a week I am scouring the Internet to see what new information might be available.  I usually come across the same information as far as treatments go, but I am always finding new information from a patient perspective.

Initially I wasn't going to read the patient stories, but then it occurred to me that I may learn something from their experiences.  Someone might mention a procedure that their doctor performed.  For example, there was a woman's blog that I read where her doctor removed her stomach because her case was so severe.  This eventually led to even more severe complications than if they would have just left her stomach in place.  Or the woman's blog that recommended a great backpack to use for TPN treatment (the backpack is currently in my house, just haven't tried it out yet).

Being an educated patient allows me to understand what the doctors are telling me.  Whether it relates to medications or treatments or just general terminology.  Being an educated patient allows me to challenge or question suggestions being made if I don't feel they are right for me.  Being an educated patient allows me to know when the timing would be right to make a change in doctors, if the need arose.

Sometimes being educated can be scary and overwhelming.  There is a lot of information out there on numerous disorders, that sometimes you see everything about only the worse case scenarios.  But again, I think it's important to know that type of signs or symptoms to watch for, especially in my case.

I tend to take the information in stride.  I have had a few people tell me to not think about things, like the what ifs with this disorder.  I can't help it.  I would rather be realistic but hopeful that those events do not occur.  I can't afford to walk around with my head in the sand and ignore things that my body goes through.

Being an educated patient also allows me to raise awareness.  Since being discharged, I have only had one person who knew what Gastroparesis was because her friend has it.  So I take a few moments and share with those that ask questions - the information that I know about Gastroparesis and specifically how it is impacting my life.  Helping to raise awareness.

The G-Pact organization had a challenge of sorts during their awareness week.  It was a Post-It challenge.  They asked patients to right facts about Gastroparesis on Post-It notes and then leave those notes in various places.  In the grocery store, convenience stores, workplaces, etc.  I think I will be participating in the challenge - so if you see Post-It notes while out and about, they might just be mine.

Be educated.  Know your body.  Listen to your body.  You know better than anyone else when something just isn't right.  If a loved one is affected by a disorder or disease - be educated.  Go to the website of patient advocacy group for that disorder and read the information - from the medical point of view but also from a patients point of view.  Understand how their illness impacts their life - both physically and emotionally.  Being educated will help you to help them.