Saturday, March 23, 2013

Be your own advocate!

No one knows your body better than you, that is why it is so important that you are your own health advocate! This is always important, but even more so with Gastroparesis.

We all have heard about the privacy act, but just to make sure ask if anything you say will stay private. Once your doctor confirms that it will stay private (if you do not feel like you can not trust your doctor or are unsure find a new doctor!!) Tell the truth, everything even if it doesn't seem related, be honest about alcohol and drug use. This is a biggie for me and I had to switch doctors and clinics many times until i found a doctor i could be truthful with. I am a weed smoker, i use it for nausea and pain, well it turns out it was good i told my doctor, he informed me smoking weed can make nausea and stomach pains worse and not to smoke it... He said instead vaporize it, best advice i had got in a long time from a doctor!!

Always ask for a copy of your medical records after every visit and keep them all in a binder. The same goes for laboratory and radiology test. Bring your records to every visit, and also keep a record of your symptoms and what makes them better and worse. This will help to identify triggers and allows you to better control symptoms. Also look at your files closely. I have learned many times there is stuff doctors either miss or decide not to tell us, some is just interesting but some can be important! Also it is always nice to get an inside look at what your doctor thinks about you and your case, this is especially true with ER records!

Fully research gastroparesis (using information from only trusted sources like WebMD, Mayo Clinic) and print out copies of what you have learned to keep with your medical files. You can also google your doctor to find out ratings and reviews. I HIGHLY recommend this!

If you do not agree with the treatment plan your doctor gives you speak up! This is a job to them, but it is your life! Do not be afraid to switch doctors and get a second, third, forth ext.. opinion! I have seen more doctors than i can even count (lost track around 30ish) but have finally found that one doctor that I trust fully and that ASK MY OPINION. This is a biggie too never let your doctor decide anything if you are uncomfortable with it! If your doctors ego is running the show run away to another doctor and fast!!

And communicate in as much detail as possible about what is not working. Be persistent, and do some research yourself. If you are on a medication and having side affects look up other similar medicines so you can directly ask your doctor for what you think will work best!

Turn to other fighters of GP with any questions if you feel comfortable doing so. We have been there, we have had experiences you cannot learn in medical school or from a book! Remember no one knows our bodys and gastroparesis better than us!

Always look up medicine interactions when starting new medicines, I recently had a very scary experience because i was told to take two medications but as soon as i took them the doctor called saying not to take them both or it will cause internal bleeding. If i had looked it up myself I could of avoided the entire problem! From now on i will be looking everything up myself, doctors are human and do mess up so it is up to us to make sure the care we receive is safe and right for us!


  1. I take a journal in my purse with all of my medications, symptoms, and an eating diary to show the doctor. I keep track of when my pain is at its worse. It's important to help yourself because the doctors can't do anything for you if you're not your own advocate. Plus, it cuts down on testing. =)

  2. Very true Emily. If we are not willing to put the work into our health care we can't expect the doctors to...they won't!

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